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This is to certify that the
dissertation entitled

Experiences of Elderty Recipients of Care: A Feminist Case
Study Analysis of Mother-Daughter Dyads

presented by

Whitney A. Brosi

has been accepted towards fulfillment

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EXPERIENCES OF ELDERLY RECIPIENTS OF CARE: A FEMINIST
CASE STUDY ANALYSIS OF MOTHER-DAUGHTER DYADS
By

Whitney A. Brosi

A DISSERTATION
Submitted to
Michigan State University
in partial fulﬁllment of the requirements
for the degree of
DOCTOR OF PHILOSOPHY
Department of Family and Child Ecology

2004

Abstract

EXPERIENCES OF ELDERLY RECIPIENTS OF CARE: A FEMINIST
CASE STUDY ANALYSIS OF MOTHER-DAUGHTER DYADS

By
Whitney A. Brosi
The purpose of this study was to examine intergenerational elder care dyads with
a particular focus on recipients of care. Family ecology theory, feminist theory, and
contextual theory guided this qualitative study and case study design. Ten mother-
daughter dyads participated in 30 individual, semi-structured interviews. Each dyad is
reviewed individually and the collective results are discussed through emergent themes
which reﬂect the theoretical framework. Emergent themes include immediacy of care,
fear of nursing homes, expectations for family care, gender socialization, contentment
with caregiver role, and shift in decision making process. Implications for future

research, gerontology, family science, and marriage and family therapy are discussed.

This work is dedicated to and in loving memory of three family members

I lost during the course of this project

Jason
‘my big brother and two-step partner’

Grandpa
‘my role model, friend, and cribbage partner’

&

Edith
‘my adopted grandma ’

The most important things I know about family care, I learned from the three of you.

I miss each of you very, very much.

iv

Acknowledgements

AS with everything, God blessed me with the strength and the support system to
complete this process. I am fortunate enough to have many people to thank...

I want to begin by thanking the 20 amazing women who, through this research,
shared their stories. In the time I spent with you, I was inspired as a woman, a daughter, a
spouse, and a professional.

Dr. Barbara Ames, my dissertation and committee chairperson, provided
consistent and well-informed guidance that challenged me throughout my program. You
were steady when I was not and I am grateful that you were willing to teach me.

Dr. Robert Griffore, my teaching and research mentor, whose gift of working with
graduate students is unparalleled. You provided the perfect balance of wisdom,
encouragement, and patience which I will aspire to achieve with my students.

Dr. Marsha Carolan was a key faculty and committee member who supported me
throughout my doctoral work. My time in the MFT program has been more enjoyable and
valuable because of you and your commitment to students. Thank you for your tireless
professional and personal support.

Dr. Paul Freddolino, my external committee member, offered unwavering support
and consistent advice through the latter portion of my program. Your level of
involvement in my dissertation work was a pleasant surprise and I am grateful for your
wisdom and guidance.

I am also thankful to Drs. Anne Soderman and Martha Bristor who made my time

at M SU very memorable. I have tremendous personal and professional respect for you.

Thank you to the crew at the Collaborative Health Care Center; Dr. Laura Mohr,
Dr. Tom Mohr, & Dr. Darryll Patterson. You were such an important part of my training
and time in Michigan. I am grateful for all that you taught me and miss you very much!

To my dear friends, Temple, Tianna, Todd, Chris, Jaime, & Eric -— you made life
bearable and I thank you. Whether it was a Spades Saturday, Tuesday night dinners, home
improvement projects, or a Beaner’s coffee, I loved it all and cherish the countless
memories. Although the good times are easy to remember, I will never forget how
supportive you were during the difﬁcult times. I absolutely could not have survived
without you.

I am so grateful for my family. First to my mother Claudia, who has astonished
me with her ability to survive. You continue to demonstrate amazing strength and I enjoy
learning from you each and every day. Thank you also to my in-laws, Bill and Jean,
whose prayers and phone calls reminded me how much I am loved. Thank you to my Dad
and Linda, for all of your support and for coming all the way to Michigan just to visit. I
am also grateﬁil for my sister, Monica who always made time to drop me a note or call.

To Matt. . .this chapter of my life has been better with you as my partner. I am so
lucky to have a spouse who does all that you do, while sharing the stress and joys of full
time graduate school. Simply put, you are an amazing man. I look forward to sharing

both my academic and personal life with you. I love you very much, Dr. Brosi!

vi

List of Tables

Table 1.1: Guiding Theories and Related Research Questions ................................ 20

Table 4.1: Descriptions of Participants ........................................................... 53

vii

List of Figures

Figure 1.1: Theoretical Map ....................................................................... 19
Figure 5.1: Process Model ........................................................................ 125
Figure 5.2: Original Theoretical Map ........................................................... 137
Figure 5.3: Revised Theoretical Map ............................................................ 138

viii

Table of Contents

List of Tables ........................................................................................ vii
List of Figures ....................................................................................... viii
Chapter One
Introduction ............................................................................................ 1
Background of the Problem .................................................................. 1
Purpose and Importance of the Study ..................................................... 2
Deﬁnitions and Assumptions ............................................................... 3
Research Questions .......................................................................... 4
Theoretical Framework ..................................................................... 5
Clinical Perspectives ....................................................................... 13
Summary ..................................................................................... 17
Chapter Two
Review of the Literature ............................................................................ 21
Stress-Burden Perspective ................................................................ 21
Intergenerational Relationships and Care ............................................... 23
Caregiver Selection ............................................................... 23
Collaboration Surrounding Care ................................................ 24
Multiple Generations ............................................................. 25
Reciprocity ......................................................................... 27
Role Reversal ...................................................................... 28
Recipient of Care .................................................................. 29
Clinical Perspectives ....................................................................... 30
Gender and the Feminist Perspective ........................................... 30
Summary .................................................................................... 32
Chapter Three
Methodology ......................................................................................... 35
Qualitative Methods ........................................................................ 35
The Case Study Design .................................................................... 36
Research Questions ........................................................................ 37
Feminism as Used in Qualitative Research .............................................. 38
Sample ....................................................................................... 4O
IRB / UCRIHS Procedures ................................................................. 41
Interview Context ............................................................................ 42
Data Collection ............................................................................. 43
Data Analysis ............................................................................... 45
Data & Coding Triangulation ............................................................ 46
Trustworthiness .............................................................................. 48
Role of the Researcher ..................................................................... 48
Limitations ................................................................................... 51

ix

Chapter Four

Research Findings ................................................................................... 52
Overview of Sample ....................................................................... 52
Recruitment and Contact with Inforrnants .............................................. 54
Interview Sites .............................................................................. 54
Family Care Dyads ......................................................................... 56

Family One: Veronica & Kate ................................................... 56
Family Two: Martina & Mona ................................................... 62
Family Three: Leda & Bernice ................................................... 68
Family Four: Dena & Vera ....................................................... 73
Family Five: Abigail & Beulah .................................................. 78
Family Six: Carrie & Deborah ................................................... 83
Family Seven: Sandy & Anna ................................................... 88
Family Eight: Idah & Rita ........................................................ 92
Family Nine: Jana & Tina ........................................................ 97
Family Ten: Dora & Donna .................................................... 102
Emergent Themes ........................................................................ 106
Immediate Need for Care, Related Transitions .............................. 106
Gender Socialization and Previous Familial Roles .......................... 107
Expectations for Family Care .................................................. 109
Avoidance of Nursing Home Care ............................................ 109
Contentment with Caregiver Role ............................................. 110
Shift in Decision Processes ..................................................... 111
Summary ................................................................................... 112

Chapter Five

Discussion .......................................................................................... 1 14
Introduction ................................................................................ l 14
Key Findings .............................................................................. 114

The Role of a Primary Caregiver and
Congruence Regarding Care Tasks ............................................ 114
Ecological Factors ............................................................... 1 15
Decision Making: Role of the Recipient and Lack of Congruence ....... 120
Extensive Care History and Multiple Roles for Recipients ................ 122
Summary of Key Findings ...................................................... 123
Theoretical Framework .................................................................. 126
Family Ecology Theory ......................................................... 126
Feminist Theory .................................................................. 130
Contextual Theory ............................................................... 132
Theoretical Maps — Original and Emerging .......................................... 134
Methodological Issues and Limitations ................................................ 139
Recommendations for Future Research ................................................ 143
Implications for Family Gerontology ................................................................. 144
Implications for Family Life Education ................................................ 14S
Implications for Marriage and Family Therapy ....................................... 145
Researcher Reﬂections ................................................................... 150

Summary ................................................................................... 152

Appendices ..................................................................... . ...................... 1 53
Appendix A: Study Information Sheet ................................................ 154
Appendix B: Consent Form — Parent ................................................... 155
Appendix C: Consent Form - Adult Child ............................................ 156
Appendix D: Direct Quote Consent Form ............................................. 157
Appendix E: Methodology Timeline ................................................... 158
Appendix F: Caregiver Consultation Interview ....................................... 159
Appendix G: Recipient of Care Interview — Part 1 ................................... 160
Appendix H: Recipient of Care Interview — Part 2 ................................... 161
Appendix I: Caregiving Ecomap ....................................................... 162

References .......................................................................................... 1 63

xi

CHAPTER ONE: INTRODUCTION
Background of the Problem

As adults age and baby boomers move into retirement, the needs of Americans
and their families are changing. Men and women are living longer, and while this
provides new opportunities for cross-generation relationships, it also spawns questions
about care in late life (Moody, 2000). When late life needs exceed the capabilities of
individuals to remain independent, how do families adapt? The declining incidence of
multigeneration, co-resident homes has led some to conclude that the commitment to
provide care to other generations is decreasing (Piercy & Chapman, 2001; Pyke &
Bengtson, 1996). However, Goldscheider & Lawton (1998) conclude that such a decrease
is a result of greater afﬂuence rather than a decline in level of commitment. It is also
important to note that when family members provide care, it is Signiﬁcantly more likely
to be a female family member. In fact, nearly half of all women between the ages of 45
and 55 will provide some level of care to an elderly parent (Cicerelli, 2000).

Much of what we know about care systems relates to caregivers and speciﬁcally
the negative outcomes of caregiving (Berg-Weger, Rubio, & Tebb, 2001; Cox & Munk,
1996; Dilworth-Anderson, Williams, & Cooper, 1999; Noonan, Tennstedt, & Rebelsky,
1996; Sherrell, Buckwalter, & Morhardt, 2001 ). This literature provides an important
contribution to understanding both the caregiving experience and outcomes of caregiving.
It informs the understanding of caregivers and their reactions to caregiving. Although this
literature is substantial, it is heavily focused on caregivers, leaving other members of the

caregiving system virtually unexamined.

In addition to research focused on caregivers, there is a smaller body of literature
that examines intergenerational dynamics as a part of the caregiving process (Bleiszner,
Usita, & Mancini 1996; Lieberman & Fisher, 1999; Litvin, 1992). These studies often
include two or three generations, although rarely including the elderly recipient of care.
When recipients of care are included, it is commonly for the purpose of measuring
congruence of caregiving expectations. Therefore, examinations of recipients are still in
the context of caregivers’ experiences, and recipients of care are rarely the primary focus
of research.

Although the intergenerational research acknowledges the recipient, research
rarely has focused on the recipient of care and his/her experience with caregiving.
Brubaker, Gorman, and Hiestand (1990) reported that “scant attention has been directed
toward the perceptions of elderly recipients of family care” (p. 267). Although this
statement was published more than 13 years ago, Horton & Arber (2004) postulate that
the literature still has little to offer scholars relative to understanding of the eldest
generation in the caregiving system.

Purpose Statement

The goal of this study was to explore the experiences of elderly recipients of care,
in the context of informal care dyads. This study aimed to understand the experiences of
recipients of care relative to family caregiving from both a current and historical
perspective. This study examined the recipient of care’s experiences as the primary
source of data. Each recipient’s adult child, who was providing some assistance to his/her
parent, also was interviewed. Informed by Ecological Theory (Family Ecology Theory

and the Human Ecology Model), Feminist Theory, and Contextual Theory this project

gave voice to a key member of the caregiving system, the recipient of care. This research
reviewed the role of the recipient of family care over time, including changes in power
and involvement. Not only was this research important from an individual and
developmental perspective, it examined care relationships between recipients and their
adult children.
Deﬁnitions and Assumptions

Two components are necessary to understand the framework from which this
study was conceptualized — deﬁnitions and assumptions. For the purpose of this study,
the following deﬁnitions were used.
Recipient of care (RoC): an unmarried adult, who was at least 70 years of age, and was
receiving some assistance from an adult child.
PrimarLCaregiver: the one person most responsible for providing care to the older adult
on a regular basis (Stephens, Franks, & Townsend, 1994)
Caregiving system: at least two generations that were actively involved in family care at
the time of the study (at least one caregiver and RoC).
History of care: the description of family care traditions across time, as perceived by the
recipient.
Decision making: a process by which a person or persons (a family) considers all known
options and makes the best choice (Gri ffore & Phenice, 2001; Paolucci, Hall, & Axinn,
1977)
m: a group of beliefs that a person/family considers to be important and central to

the decision making process (Bubolz & Sontag, 1993).

Ecological Factors: any variable at all levels of inﬂuence (e.g. micro or macro) that
Shapes the way a family makes decisions and organizes itself in relation to one another
and outside systems. Examples of ecological factors speciﬁcally related to elder care
include gender socialization, living conditions, or sibling position.
Gender: the categorization of an individual as either male or female, which is central to
the socialization of individuals in society.

In addition to the deﬁnitions provided above, the proposed study was rooted in the
following assumptions:
1 — The family caregiving system includes individuals across multiple generations
2 - Caregiving is a normative family task that creates transitions, and consequently stress,
for all members
3 — Younger generations are more overtly involved with care decisions than elderly
recipients of care
4 - Elderly recipients of care are the least commonly studied members of the caregiving
system because of pervasive stereotypes about age, involvement, and care in later life
5 - Family members make decisions based on what they ﬁnd most valuable, and this
changes over time with various roles and experiences.
6 — Collaboration between family members, including the recipient of care, is the ideal
framework for which family care decisions are made.

Research Questions

Using the deﬁnitions and assumptions provided above, as well as the theories

outlined later in this paper, the following research questions guided this study:

1 - How did ACCs and RoCs describe the current care arrangement?

2 - What ecological factors contributed to family care? What messages (values) existed
about care?
3 - How did the family make decisions about family care and what role did the RoC play
in this process?
4 - How did elderly recipients of care describe the history of care in their families and
what role did they play in care over time (as a child, young adult, older adult)?
5 - How did RoCs compare their care experience to experiences of their siblings, friends,
and other RoCs in their family?
6 - Were RoCs and ACCS reports/perceptions congruent (current care system members,
history of care, messages about care)?
Theoretical Framework

Three theoretical frameworks informed this qualitative study — Ecological
Perspectives, Feminist Theory, and Contextual Theory. Family Ecology Theory served as
the foundational theory and was used to view the caregiving system relative to values,
decision-making, resources, and boundaries (Bubolz & Sontag, 1993; Griﬂ‘ore &
Phenice, 2001; Hook & Paolucci, 1970; Paolucci, Hall, & Axinn, 1977). Related concepts
from Bronfenbrenner’s Human Ecological Model were used, including macro and micro
inﬂuences, the ecological transition, and the chronosystem (Bronfenbrenner, 1997 &
1999). Feminist Theory was used to examine concepts of power and gender as they relate
to aging families and speciﬁcally caregiving families (McGoldrick, 1998; McGoldrick,
Anderson, & Walsh, 1989). Contextual Theory offered a clinical review of potential

intergenerational outcomes, such as ledgers, entitlement, and loyalties (Boszormenyi-

Nagy, 1., Grunebaum, J ., & Ulrich, D., 1991). Each of these theories informed the
grounded theory approach to this qualitative study.
Family Ecology Theory

With historical roots in general systems, human systems, and human ecology,
family ecology emerged to examine the family as a “life support system” to developing
individuals (Hook & Paolucci, 1970, p. 315). This speciﬁc perspective, with the family as
the central support system of the individual, allows scientists to closely examine the
complexity of interactions that occur within the family (Bubolz & Sontag, 1993). It also
allows an examination of interactions between families and other systems. For this
reason, family ecology is widely used among scientists who study both indiViduals and
families (1993).

According to Kantor & Lehr (1975) the family is comprised of three subsystems —
“the family-unit subsystem, the interpersonal subsystem, and the personal subsystem” (p.
23). Although these three subsystems are the primary components, the interface between
each subsystem and environment is critical to understanding families and relationships
(1975). In the spirit of the philosophy that interactions between individuals and
environments are central to understanding families, Paolucci, Hall, & Axinn (1977)
identiﬁed family members as one of three essential components of the family ecosystem,
including external environments and human interactions. The following section identiﬁes
key concepts within family ecology and is meant to highlight central components as well
as identify a system of concepts that interact with one another. No one concept stands

alone, just as no one family member is isolated from his/her family or other contexts.

Environments

Environments are external forces that inﬂuence a system’s, in this case the family
system, operation and organization (Paolucci, 1977). An inﬁnite number of environments
exist when considering familial interaction with other systems. Although it is impossible
to identify all potential environments, Hook and Paolucci (1970) identiﬁed a “total
environment” comprised of three human systems — “the biophysical, the psychosocial,
and the technological” (p. 317). The psychosocial environment is particularly important
when considering human and familial interaction (Hook & Paolucci, 1970). In regard to
the recipient of care, the psychosocial environment is paramount to the caregiving
system. Given that elder care is commonly identiﬁed as a normative family task, the
family is a central environment to consider for the recipient of care (Cicerelli, 2000;
Sherrell, Buckwalter, & Morhardt, 2001). Although the family is the primary context
used for this study, all environments are important to consider when understanding the
context of familial interaction.

Paolucci, Hall, and Axinn (1977) identiﬁed four key components of Family
Ecology Theory — boundaries, decision making, resources, and values. These four
components are central to family processes and family caregiving and comprise the
foundational framework for this study.

Boundaries

Boundaries are regulating forces between systems that determine if a system is
open or closed, with families generally characterized as semi-open systems (Griffore &
Phenice, 2001; Paolucci, Hall, & Axinn, 1977). Boundaries are established and

negotiated between systems and members to determine what enters and exits (2001).

They can be physical, functional, or analytical, and although not all boundaries can be
seen, they are agreed upon and understood by system participants (2001). Boundaries
vary on a continuum, ranging from rigid to diffuse (Minuchin & Fishman, 1981). Rigid
boundaries signiﬁcantly limit the exchange between systems, whereas diffuse boundaries
rarely limit what is exchanged between systems (1981). It is not important to identify all
of the different variations of boundaries, but rather the ways in which boundaries are
negotiated within the family as well as between the family and other systems (Griffore &
Phenice, 2001).
Decision Making

Paolucci, Hall, & Axinn (1977) describe decision-making as a process that
humans learn over time, based on environments and interactions with other systems. It is
a “transacting process” that is based on communication, interactions, perceptions,
decisions, (re)actions, and problem solving Skills (Bubolz & Sontag, 1993; Griffore &
Phenice, 2001; Paolucci, Hall, & Axinn, 1977, p. 2). Once a family determines what it
needs, options are evaluated. Oﬁen families are not fully aware of what options are
available to them and therefore cannot fully consider each of them (Bubolz & Sontag,
1993). Generally, there are three aspects to decision making in families: ranking —- the
classiﬁcation of options based on preference; elimination — based on various factors, the
list is reduced; closure — when one option is selected, without conﬂict (Griffore &
Phenice, 2001). Family negotiation or decision-making is a constant and dynamic process
that occurs on both conscious and unconscious levels (Griffore & Phenice, 2001;
Paolucci, Hall, & Axinn, 1977). Decision-making related to caregiving requires

consideration of multiple generations and countless variables. Although it is most

common to ﬁnd literature on caregivers, elderly recipients of care are key members of the
caregiving system. Although we know little about how recipients of care participate in
decision-making, as members of the system it can be assumed that they have some role in
decisions relative to their care.
Resources

Resource exchange is a central component of family ecology. Individuals transfer
energy and resources among themselves and across systems. Since each relationship in an
open system is reciprocal, the exchange of information is ongoing, and the system is
dynamic in nature (Bristor, 1995). Resources can be classiﬁed into two forms, human and
non-human (Paolucci, Hall, & Axinn, 1977). Non-human resources can typically be
thought of as tangible, material items — money, dwellings, and objects. A number of
factors, including the economy, society, and context, determine the value of resources. In
caregiving systems, it is important to understand how value is determined, as individual
members will likely have varying formulas for determining value. For example,
caregivers and recipients of care may disagree on the valueof the recipient of care
staying in his/her home. The caregiver may consider it too expensive and have health and
safety concerns. The recipient of care may see more value in staying in his/her home for
comfort or other personal reasons. Although these variables are less tangible than money,
they are considerable resources.
Values

Values are learned from environments and interactions and, like other ecological
components, inﬂuence current and future interactions. Each family member holds values

that may be widely accepted by the family, but also may vary from person to person,

based on experiences. Values reﬂect what individuals determine to be right or moral and
are inﬂuenced by society, culture, religion, and other environments (Bubolz & Sontag,
1993). In relation to the caregiving system, values are signiﬁcant and develop long before
caregiving begins. Through behaviors and words, families transmit messages regarding
what is important to other family members. Much like boundaries, values may be
unspoken but fully understood and agreed upon among system members. As caregiving is
being viewed as a normative family task, it is a common societal value that younger
generations will care for aging family members (Cicerelli, 2000; Sherrell, Buckwalter, &
Morhardt, 2001). Within families, who speciﬁcally provides that care is often determined
by values from the family (e. g. assumptions based on gender, employment status) and
smaller systems of inﬂuence (e.g. community, ethnic group, religious afﬁliation). Again,
although research addresses the complexity of values relative to caregiving, more
research is needed to understand the role of the recipient of care in the process.

AS a result of extensive research on caregivers, much is known about
employment, child rearing, ﬁnancial, and marital considerations related to caregiving.
However, little is know about how the recipient of care participates in this process.
Obtaining the recipient of care’s perspective about how the caregiving system is formed
and what it looks like is a signiﬁcant and still missing piece. Using Family Ecological
Theory to examine the caregiving system from this unique perspective expands our
knowledge about the recipient of care’s role in caregiving. Also it will guide the
understanding of caregiving as a multigenerational process that occurs over time through

value transmission and decision-making.

10

Bronfenbrenner 's Ecological Model

One speciﬁc application of Human Ecological Theory has gained signiﬁcant
exposure in the social sciences — Bronfenbrenner’s Ecological Model (1979). This model
emphasizes four primary levels of inﬂuence on individuals and family systems — micro,
exo, meso, and macro systems (1979, 1999). A central assumption of this model is that
individuals hold roles within various systems. Not only do roles determine individuals’
positions and purposes in the family and corresponding systems, they also determine and
necessitate shifts across the ecological system (Bronfenbrenner, 1999; Griffore &
Phenice, 2001).

The microsystem includes immediate systems that “are experienced by the
developing person”, such as the family (Bronfenbrenner, 1979, p. 22). Knowing that
family may encompass a variety of immediate and extended family members, it is
important to note that the microsystem will vary for each family (Berry, 1995;
Bronfenbrenner, 1979; 1999). The mesosystem is the interface where two or more
microsystems meet. Each microsystem includes the developing individual and creates a
need to better understand how these two systems interact (Berry, 1995; Bronfenbrenner,
1979). In the caregiving system, with a focus on the recipient of care, the mesosystem
would include systems that directly interact with the care recipient. Examples may
include the health care providers, nursing home staff, friends, and extended family
members. The exosystem expands to include systems that affect the developing person,
however he/she does not directly interact with these systems. In respect to the recipient of
care, this might include the adult child’s workplace or a grandchild’s school system.

Neither of these systems directly interacts with the recipient of care, but may indirectly

11

inﬂuence him/her. The macrosystem is the broadest of the four levels in
Bronfenbrenner’s model in that it encompasses many intangible but powerful forces. For
example, the macrosystem includes societal rules and expectations that are transferred
across generations. This level also includes societal systems such as the government and
federal policies (Berry, 1995; Bronfenbrenner, 1979). This level also includes the concept
of uniformity across society, encompassing the consistent societal rules that govern social
and political systems (1979).

The ﬁnal component of this multilevel ecological model is the chronosystem. The
chronosystem refers to time, not simply to the passage of time in history but rather a
complex process with many dimensions. When considering individuals’ development, the
chronosystem relates to their physical, psychological, and social development across the
lifespan. In addition, the chronosystem allows family scientists to consider the
developmental process of the family over time. This level also includes the concept of
time in history, attending to the unique inﬂuences of context related to various cohorts
and generations.

A related concept described by Bronfenbrenner (1999) is the ecological transition,
which refers to the inevitable Shiﬁ of a person’s position in the ecological environment as
a result of changing roles and/or settings over time. Time and role transitions are critical
variables when studying families across the lifespan. As individuals pass through various
life stages, they learn how families makes decisions and what role they play in such
decisions. A caregiving example may be an individual’s role transition from being a

caregiver to becoming a recipient of care.

12

Clinical Perspectives
In addition to Family Ecology Theory and Bronfenbrenner’s Model, several
clinical paradigms guide caregiving research and knowledge. Two perspectives that relate
speciﬁcally to the aging family and caregiving include Feminism and Contextualism
(Boszormenyi-Nagy, Grunebaum, & Ulrich, 1991; McGoldrick, 1998; McGoldrick,
Anderson, & Walsh, 1989). The feminist perspective is often associated exclusively with
gender. However, Feminism informs the clinician’s and researcher’s understanding of
power and related processes in families, not just gender dynamics. These concepts can be
applied to all systems in which individuals have varying degrees of power and inﬂuence,
including the aging person. Contextualism aids the clinician’s understanding of multiple
generations over time, including the concepts of loyalty and entitlement. Clinicians who
are informed by the contextual perspective focus on an individual’s perception of equity
and ledgers (that individuals are indebted to others emotionally) (Boszormenyi-Nagy,
Grunebaum, & Ulrich, 1991; Goldenthal, 1993; Hargrave & Anderson, 1992). This
perception over time is a result of many factors, and the outcome is entitlement
(constructive or destructive) and an unbalanced ledger (Goldenthal, 1993).
Feminist Theory
Feminism considers the inﬂuence of gender, a socially constructed concept, on
relationships. Feminism speciﬁcally considers how women have been and continue to be
oppressed, while trying to ﬁnd ways to empower them beyond oppression. It also views
society as a place with inherent hierarchy and purports that women are limited by such a

structure (Imber-Black, 1989). Gender is the primary focus in that Feminist Theory

13

purports that men, speciﬁcally white men, have the most Signiﬁcant amount of social,
professional, and overall societal power (McIntosh, 1998).
Families and the Social Construction of Gender

A primary assumption of Feminist Theory is that men and women are socialized
in different ways. From birth, different expectations are placed upon boys and girls.
Although much of this happens in the context of families, these gendered expectations are
present in all social systems. Therefore, even the most gender conscious family could not
protect a family member from imbedded gender expectations.

A common expectation of women in families is that they will assume some level
of care for aging family members (Brewer, 2001; Cicerelli, 2000; Ray, 1996). Whether
through the types of chores a female child is asked to do or through watching other
women in the family, females are socialized to attend to relationships. In adulthood, this
often translates into the expectation that caregiving is a woman’s role. Even in dual
income families, women are primarily responsible for household and child care tasks
(Lee, 1992; McGoldrick, 1989). Since women are socialized to be the primary caregiver
to family members, it is no surprise that women make up more than 80% of all caregivers
to elderly family members (Brewer, 2001; Ray, 1996). It is also common that even when
sons are available, daughters-in-law provide care to their mothers-in-law (Coward,
Home, & Dwyer, 1992; McGoldrick, 1989). Although it is important to note the
Signiﬁcant gender discrepancy in caregiving, it is also important to examine the

relationships in which such decisions are made.

14

Feminism and Aging

“The study of aging, by sheer force of demography, is necessarily a women’s
issue”, given the proportion of women who outlive their male counterparts (Ray, 1996, p.
674). Furthermore, “Gerontology and feminism share common goals: development of
social consciousness about the inequities confronting older people and women”
(Blieszner, Usita, & Mancini, 1996, p. S). This statement supports Goldner’s (1989)
assertion that in order to study family relationships, one must consider both age and
gender. This does not mean simply including gender and age on a demographic survey,
but rather appreciating how a person’s gender and age inﬂuence their experience in the
world.

Since Feminist Theory considers individuals and groups with decreased power, it
also relates to the position of the elderly in our society. Falicov (1998) alludes to this
dynamic in aging families in the discussion of sibling position and gender. “A son or
daughter may gain ascendancy, obligations, privilege, and access to adult information by
being the oldest, parentiﬁed, or favorite. ...The child may be in an apprenticeship role to
take future care of. . .the aging parent or the surviving parent” (1998, p. 40). Although
subtle, the author seems to assert that aging parents are those who receive care from adult
children, rather than being partners in caregiving systems.

Given the perspective of Feminist Theory on issues of gender and age, it is clear
that this theory relates to family caregiving. Family caregiving involves multiple
generations and is based upon messages passed from one generation to the next.

Messages of oppression and gendered expectations are played out in families as well as

15

larger systems and inﬂuence family caregiving. Concepts related to aging, kinship, and
ﬁlial responsibility also are present in caregiving systems.
C ontextualism

“Contextual therapy is intergenerational, integrative, multilateral, and oriented
toward resources and the future” (Goldenthal, 1992, p. 2). In its application,
contextualism attempts to understand at least three generations of families with a balance
of attention to each. There are four primary dimensions of contextualism:

1 — existential facts (family history), 2 — psychology (the individual as a system), 3 —
family processes and power, 4 — relational balance or fairness (Boszormenyi-Nagy,
Grunebaum, & Ulrich, 1991). Each is important to understanding the multigenerational
family, its history, participants, and processes.

The primary concepts are related to the farnily’s history and include loyalty,
entitlement, ledger, and parentiﬁcation (Boszormenyi-Nagy, Grunebaum, & Ulrich,
1991; Goldenthal, 1993; Hargrave & Anderson, 1992). The Contextual concept of loyalty
has its origins in family care and other family contributions. Nagy (1991) asserts that
each developmental stage requires adjustments to loyalty and alters the distribution of
responsibility. Nagy (1991) applies the concept of loyalty to clinical populations in his
descriptions of split loyalty, which occurs when an individual experiences a conﬂict as a
result of two competing bids for his/her loyalty (Goldethal, 1992). In the case of a
caregiving adult child, split loyalties may occur when he/She feels loyalty to care for
divorced parents. The concept of entitlement is commonly applied to clinical samples
through the term, “destructive entitlement” (Nagy, 1991). This results when an individual

perceives that he/She has been wronged and responds with a lack of concern for others

16

(Goldenthal, 1992). In caregiving families, this may result when an adult child believes
that he/she did not get basic needs met by a parent and consequently ignores his/her
parent’s or Sibling’s need for help. When a person demonstrates destructive entitlement,
Nagy (1991) asserts that he/she has an imbalanced ledger (that personal debts outweigh
personal assets). Contextualism is rooted in the idea that imbalanced ledgers are a result
of experiences with the family of origin. Manifestations of an imbalanced ledger related
to family care might include an adult child’s resentment that his/her parent took care of a
grandparent rather than him/her as a child.

Contextualism, as a clinical perspective, is rooted in the idea that individuals
come from families in which they were not given what they needed or were expected to
play a role that was inappropriate for their age/stage in life. This situation manifests itself
into entitlement (e.g. he/she owes me this) later in life, which results in that person
expecting the debt to be paid by someone other than the person who owes it.
Furthermore, loyalties established in the family of origin often remain strong over time.
This may or may not be a function of a healthy or unhealthy relationship. However,
Contextual Theory would assert that such loyalties lead to unhealthy functions beyond
childhood. In caregiving systems speciﬁcally, loyalties to one parent over the other may
complicate this role. Furthermore, if various siblings have loyalties to a parent, this also
may complicate intergenerational caregiving.

Summary

Each of the described theories offers a unique lens through which to study

families. Although independently valuable, the integration of these three perspectives

informs this study. Speciﬁcally, Family Ecology serves as the foundational theory on

17

which the primary concepts of this study rest. Understanding families’ experiences with
caregiving over time is the central goal of this research. Family Ecology Theory offers
the ability to look at the family system, examining resources, boundaries, values, and
decision-making processes. Although this is central to the research question, many layers
of society and culture inﬂuence families. The Human Ecological Model allows
researchers to review the layers of inﬂuence, looking at micro and macro variables. This
perspective intersects well with feminist theory because of common gendered and age
related expectations imbedded in society and in caregiving families. The human
ecological model also allows families to be reviewed over time, looking at the important
role transitions that occur between generations. Feminism offers a framework for
studying gender and age related power dynamics and multiple levels (e. g. familial and
societal). Furthermore, Feminism is a natural partner with gerontology, qualitative
research, and marriage and family therapy - making it a crucial component of this study.
Finally, contextualism offers a review of outcomes commonly seen in intergenerational
patterns, which are frequently played out in caregiving families. Contextualism and
Feminism offer a framework through which to review implications for marriage and
family therapy training and clinical work.

The contribution of each of these models results in an ecological framework for
studying caregiving, while considering the importance of family, context,
intergenerational transmission of values, and an understanding of the inﬂuence of gender
and age expectations. This model also integrates process and outcome components,

addressing the dynamic nature of families (see Figure 1.1)

18

Figure 1.1: Theoretical Map

 

 

Bronfenbrenner’s Bronfenbrenner’ s
Macrosystem Fa mil E col 0 Theo Macrosystem
Values Decision Making

   
  

' ‘Kzzur .

  
  

«a - urea-~-

eminist Theory

Gendered
Expectations

Age Related
Power
Differentials

5‘s

  

    

 

 

Resources Boundaries
Bronfenbrenner’s Bronfenbrenner’s
Macrosystem Macrosystem
Contextual

Outcomes — Ledgers, Entitlement, Loyalties, Indebtedness

 

 

 

 

I Bronfenbrenner’s Ecological Model I

Chronosystem & Ecological Transition

 

 

 

Table 1.1: Guiding Theories and Related Research Questions

 

 

 

 

 

 

 

 

 

Theories &/or Research Questions
Perspectives

HE, FET How did ACCS and RoCs describe the current care
arrangement?

F ET, HE What ecological factors contributed to family care? What
messages (values) existed about care?

FET, Fem How did the family make decisions about family care and
what role did the RoC play in this process?

FET, HE, F em How did elderly recipients of care describe the history of
care in their family and what role has he/she played in
care over time (as a child, young adult, older adult)?

FET, HE, CT How did RoCs compare their care experience to
experiences of their siblings, friends, and other RoCs in
their family?

FEC, CT, HE, F em Were RoCs and ACCS reports/perceptions congruent
(current care system members, history of care, messages
about care)?

 

HE — Human Ecology Model (Bronfenbrenner, 1979, 1999; Griffore & Phenice, 2001)

FET — Family Ecology Theory (Bubolz & Sontag, 1993; Griffore & Phenice, 2001;
Hook & Paolucci, 1970; Paolucci, 1997)

Fem — Feminism (McGoldrick, 1998; McGoldrick, Anderson, & Walsh, 1989)

CT — Contextualism (Boszorrnenyi-Nagy, Grunebaum, & Ulrich, 1991; Goldenthal,
1993; Hargrave & Anderson, 1992)

20

 

CHAPTER TWO: REVIEW OF LITERATURE

As individuals live longer than ever before, families and cross-generation
relationships are changing. One area that has received signiﬁcant academic and media
attention is elder care by family members. In the past decade, signiﬁcant information has
been produced documenting the caregiving experience of many baby boomers.
Experiences of caregivers have been the primary focus of the academic literature,
including the effects on and outcomes for caregivers (Berg-Weger & Tebb, 2004;
Bleiszner, Usita, & Mancini, 1996; Cox & Munk, 1996; Dilworth-Anderson, Williams, &
Cooper, 1999; Dilworth-Anderson, Williams, & Gibson, 2002; Fingerrnan, 1996; Ho,
Weitzman, Cui, & Levkoff, 2000). A smaller proportion of the literature examines cross-
generation relationships, including Spouses, adult children of caregivers, and elderly
recipients of care (Bleiszner, Usita, & Mancini, 1996; Fingerrnan, 1996 Lieberman &
Fisher, 1999; Litvin, 1992; Sorensen & Zarit, 1996). The following section summarizes
key components of the extensive caregiving literature and documents the lack of research
on elderly recipients of care (Horton & Arber, 2004).

Stress & Burden Perspective

The ﬁndings on caregiver stress are extensive and complex, and studies rarely
differentiate between co-resident and non-resident caregivers (Cox & Munk, 1996;
Dilworth-Anderson, Williams, & Gibson, 2002). Furthermore, studies often fail to
identify the differences between spouse caregivers and adult child caregivers. Finally,
operational deﬁnitions of caregiving vary from study to study, making the collective

knowledge difﬁcult to interpret (Berg-Weger & Tebb, 2004).

21

The caregiving experience is related to a variety of stress reactions, including role
strain, ﬁnancial strain, and emotional/social stress (Cox & Munk, 1996; Dilworth-
Anderson, Williams, & Cooper, 1999; Dilworth-Anderson, Williams, & Gibson, 2002;
Ho, Weitzman, Cui, & Levkoff, 2000). Caregivers experience a higher rate of depression,
anxiety, ﬁnancial strain, and physical health changes than their non-caregiving
counterparts. Increased anxiety and depression among caregivers may indicate that
socialization and caregiving expectations contribute to negative consequences of
caregiving. The balance between social and familial expectations and other commitments
perpetuates this strain (Franks, Pierce, & Dwyer, 2003; Stephens, Franks, & Townsend,
1994)

Another common strain is the ﬁnancial responsibility that often accompanies
caregiving. Caregivers may ﬁnd themselves providing for multiple generations (children
and parents) while earning less as a result of their caregiving role (Calasanti, 1999).
Although Calasanti (1999) describes caregiving strains, she also emphasizes that women
may beneﬁt socially from caregiving. Beneﬁts of the caregiving role may include strong
social networks and life Skills that beneﬁt women into late life.

Finally, mixed results are reported regarding needs of the recipient of care and the
well-being of the caregiver. Whitlatch, Schur, Noelker, Ejaz, & Looman (2001) found
that caregiver wellness and mental health is directly correlated with the needs of the
recipient of care, implying that increased care leads to greater caregiver stress. Franks,
Pierce, & Dwyer (2003) assert that the recipients’ level of need is correlated with the size
of the care network. Finch & Mason (1993) discuss the concept of anticipatory

negotiation, a process that occurs before action is needed, as a way to prepare both parties

22

for the care arrangement. A beneﬁt of this type of negotiation is the role that both parties
have in the plan, giving the ﬁxture recipient of care a role in the arrangements and
consequently attending to their perception of self worth (1993). This may eliminate
unnecessary care tasks and caregiver stress about whether or not a recipient is getting
what he/she needs and therefore attending to one aspect of caregiver stress. Morgan and
Kunkel (1998) note that more research is needed to understand caregiver stress in the
context of speciﬁc relationships.

Intergenerational Relationships & Care

Caregiver Selection

Research has been conducted that examines caregiver selection or assignment,
indicating that many caregivers may be unaware of the process by which they became
caregivers (Cicerelli, 2000; Piercy & Chapman, 2001; Sorensen & Zarit, 1996; Ungerson,
1987). Furthermore, family scholars may be unclear about the projection of family care
and therefore less prepared to assist families with the transition to caregiving. Like the
Sorensen and Zarit (1996) study, Keith (1995) reported that much is known about the
types of responsibilities involved in caregiving, but research has not successfully
identiﬁed how caregivers come to take such a role, or how such tasks are allocated.

In a study of 19 caregivers, Ungerson (1987) identiﬁed some parts of the
caregiver selection process. Overwhelmingly, the participants in this study reported being
selected as caregivers based on the “dominant, normative, and gendered rules of kinship”
(p. 61). Many of the respondents reported that they were the obvious choice but were

unable to explain or identify why. It also was noted that participants’ family members

23

believed that the selected caregiver would have the lowest level of life disruption if
he/She assumed the role of caregiver (1987).

Piercy & Chapman (2001) examined familial negotiation and found four primary
factors related to adoption of caregiving role. The ﬁrst factor was ‘family expectations’
indicating that respondents recognized that, earlier in life, they were slated for such a
role. Some identiﬁed birth order (“I’m the oldest”), while others were unable to identify
the source of such expectations. The second factor was ‘family rules’ which refer to the
ongoing guidelines that keep a family running smoothly. Each person seemed to speak
knowingly about such rules but did not explain why he/she adhered to such rules while
others did not. The third and fourth factors were ‘role modeling’ and ‘role making’. In
these two factors, caregivers described the unspoken process by which they learned about
caregiving (2001). Although they examined the family legacy aspect of caregiving,
Piercy & Chapman (2001) stated that, “we know little about how adult children adopt
caregiver roles” (p. 386).

Finally, Cicerelli (2000) examined the trajectory of adult caregivers. Although the
research did not result in a speciﬁc model of caregiving, there was one primary ﬁnding.
The major predictor of caregiving was the adult child’s perception that the parent was
experiencing increased need of care. As adult children perceived greater need by the
parent, the caregiver increased his or her efforts. However, the perceived need was not
necessarily related to the actual need of the parent.

Collaboration Surrounding Care
The idea that one caregiver provides care has been challenged by the assertion

that families collaborate in care of older family members (Cicerelli, 1992). Ingersoll-

24

Dayton, et al (2003) speciﬁcally addressed the issue of sibling collaboration in caring for
older parents. This study used qualitative methods and a series of focus groups with
siblings who care for their aging parents in various ways. With a focus on collaboration,
the authors note two primary approaches employed by siblings - taking turns or deciding
by task or by area of expertise. The authors purport that research on sibling collaboration
demonstrates that an exclusive caregiver can be identiﬁed in less than 10% of cases
(2003; Cicerelli, 1992). However, the literature consistently documents the presence of a
primary caregiver, with 79% of families identifying one adult child in this lead role
(Ingersoll-Dayton, et al, 2003).

The concept of equitable contributions is central to caregiving work, especially
when siblings are collaborating in the care of an aging parent. Ingersoll-Dayton, Neal,
Ha, & Hammer (2003) assert that the balance of expected care and perceived support of
siblings is central to feelings of distress. Speciﬁcally, the authors state that, “when people
feel that they are giving more than others in a transaction, they will become resentful or
angry. . .when individuals feel that they are giving less than others, they will feel guilty”
(2004,p.202)

Multiple Generations

A limited number of studies have examined the intergenerational dynamics of
caregiving, including both the caregiver and the recipient of care (Bleiszner, Usita, &
Mancini 1996; Lieberman & Fisher, 1999; Litvin, 1992). Each of these studies takes a
different approach, with some using a strengths-based, normative approach and others

using a stress and burden perspective.

25

Fingerman (1996) reports that the relationship between adult children and parents
is often romanticized, assuming that the adolescent-parent relationship is more likely than
other family relationships to have conﬂict or tension. Based on this assumption,

F ingerman (1 996) asserts that a gap exists in the caregiving literature regarding the
relationship difﬁculties that can arise between adult children and recipients of care,
speciﬁcally related to females. Although the literature documents the stress experiences
of caregivers, this study examines the sources of tension between mothers and daughters
rather than outcomes for one person. Bleiszner, Usita & Mancini (1996) challenge the
idea that caregiving mother/daughter relationships are plagued with conﬂict, offering an
alternate perspective in the caregiving literature. The ﬁndings of Bleiszner’s, et al (1996)
study support Brubaker, Gorman, & Hiestand’s (1990) assertion that conﬂicted
relationships may be a result of established dynamics rather than outcomes of caregiving.

Litvin (1992) examined the adult child caregiver and aging parent relationship
using the social breakdown perspective. With this perspective, aging is seen as a time of
extensive loss or decline, creating stress for both the recipient of care and the caregiver.
In this quantitative study, ﬁndings revealed several predictors of negative outlook by
recipients of care — perception of poor health status, lowered involvement with family
and ﬁiends, and perceived change in relationship with caregiver(s) (1992). Although this
study reiterates several well-documented ﬁndings in the caregiving literature it is unique
in that it emphasizes the inclusion of recipients in research.

Fisher and Lieberman (1996) and Lieberman and Fisher (1999) included both
adult children and recipients of care in their studies of family conﬂict resolution.

Although the recipient of care was included in the analysis, he/she did not respond to any

26

 

of the measures directly. The recipients were included in the analysis based on medical
professionals’ evaluations of their functioning. Recipients of care had experienced
dementia, a stroke, or had been diagnosed with Alzheimer’s disease and therefore were
not directly included in the study. Family conﬂict resolution was measured based on the
adult child and spouses’ perceptions of conﬂict resolution. Although it is important to
study families experiencing certain conditions, such as dementia or Alzheimer’s disease,
Berg-Weger & Tebb (2004) postulate that it is important to expand participation to
families providing care for conditions other than dementia.

Sorensen and Zarit (1996) included three generations of females (mothers,
daughters and granddaughters) in their examination of caregiving anticipation and
preparation. Unlike the Fisher and Lieberman (1996) study, the eldest generation in this
study was not signiﬁcantly dependent on others for care. The primary ﬁnding of this
study documents that older female participants (potential recipients) actively anticipate
what will happen to them if they become unable to manage personal or household tasks.
Although a signiﬁcant majority of daughters and granddaughters in this study also
reported anticipation, the families reported little planning for such events (1996). These
ﬁndings support the idea that decisions are anticipated throughout various points in the
life cycle and supports Berg-Weger & Tebb’s (2004) assertion that there is a need to
explore transitions in and out of the caregiving role and “to better understand the process
of caregiving” (p. 13).

Reciprocity
“In family roles, older Americans are widely perceived as care recipients, rather

than caregivers” (Treas & Mazumdar, 2004, p. 107). However, the concept of reciprocity

27

has been used in the caregiving literature to address either past or current contributions of
older adults.

Three forms of reciprocity have been discussed in relation to the care of older
family members — immediate, hypothetical, and deferred (Lewinter, 2003). Immediate
reciprocity refers to a current exchange; hypothetical reciprocity refers to the belief that
the recipient would do the same for the caregiver, and deferred reciprocity refers to the
idea that the caregiver is paying back a previous favor or debt (Lewinter, 2003).
Immediate reciprocity was most frequently described as an expression of gratitude by the
recipient, followed by the enjoyment in taking care of someone with whom the caretaker
has a positive relationship. In this study of 107 caregivers to the elderly, a large
proportion noted the importance of gratitude and appreciation in their motivation for
continued care of their parent.

Role Reversal

Kruypers & Bengtson (I990) summarized three primary macro assumptions that
inﬂuence the aging family system. The ﬁrst is that as families age, level of familial
(family of origin) involvement will and Should decrease. The second assumption states
that loyalties in families will shift over time and that investments in younger generations
should be primary. Finally, Kruypers & Bengtson (1990) postulate that the widely
accepted belief that care should extend from older to younger generations, perpetuates the
idea that care of older generations is a dysfunctional family pattern.

Seltzer (1990) purports that the caregiver role places the recipient of care into a
child-like position, reversing the structural positions of the adult child and parent. In their

2004 research, Horton & Arber found that “carers were often concerned about the

28

reversal of roles and that a primary concern was to protect the parent’s identity and the
parent-child relationship” (p. 77). However, some research has documented the
caregiving role as a normative family task rather than a source of non-normative
dynamics (Sherrell, Buckwalter, & Morhardt, 2001). This assertion challenges the widely
held assumption addressed by Krypers and Bengtson (1990) and acknowledges that
structural changes in aging families are appropriate.

Despite opinions about the appropriateness of caregiving positions, scholars agree
that parent-child relations change in the context of elder care. Not only does the
recipient’s relationship with his/her caregiver change, it may also challenge his/her
position with others in the family. Furthermore, it is likely that many recipients also have
been caregivers at one time. In cases where the now recipient has been a caregiver, added
transitions are required. “Caregiving has typically been viewed as a Speciﬁc activity,
rather than as a social status that individuals move into and out of at various points in the
life course” (Pillemer, Suitor, & Wethington, 2003, p. 24). Redeﬁning caregiving, as a
dynamic process, will offer a more accurate view of care activities and will acknowledge
the transitions in and out of care roles (Berg-Weger & Tebb, 2004; Pillemer, Suitor, &
Wethington, 2003).

Recipient of Care

Brubaker, Gorman, and Hiestand (1990) speciﬁcally addressed recipients of care
in their chapter on stress in the caregiving system. In their review of literature and
conceptualization, the authors addressed personal, situational, and social support
variables that inﬂuence the recipient of care. A primary conclusion was that the recipient

of care’s perception of control and power in the caregiving system was most signiﬁcant

29

in determining his/her stress level. This was applied speciﬁcally to the need to better
understand how caregivers, speciﬁcally adult children, collaborate with their parents
relative to caregiving. Brubaker, Gorman, and Hiestand (1990) assert that the greater the
level of control recipients of care perceive in the caregiving system, the less stressful
their experiences will be. Much of this work relied on the literature that examines the
relationship between caregivers and recipients of care. However, this chapter was unique
in that it highlighted the experience of the recipient of care rather than the caregiver.
Clinical Perspectives
Gender & the Feminist Perspective

A portion of literature has been committed to viewing family care from a feminist
perspective (Brewer, 2001; Goldner, 1992; Ingersoll-Dayton, Starrels, & Dowler, 1996;
Neal, Ingersoll-Dayton, & Starrels, 1997; Ray, 1996). This work uses the feminist
paradigm as a way to study families with aging members, looking speciﬁcally at the
concept of gender. As stated in the clinical perspective discussion of feminism, factors
other than gender, such as age, are relevant in feminist applications of family care. The
following section summarizes work that highlights feminist concepts and introduces the
idea that feminist literature can expand to include age as a primary consideration of
power, speciﬁcally in relation to the recipient of care.

In their study grounded in the feminist framework, Allen and Walker (1992)
interviewed elderly mothers and caregiving daughters. The authors aimed “to address two
underlying assumptions in the intergenerational caregiving literature: that elderly family
members are passive, dependent recipients of care and that outcomes of caregiving for

the caregiver are overwhelmingly negative” (1992, p. 198). Findings included a number

30

of positive outcomes of caregiving for both the caregiver and care recipient, including
companionship, mutual concern, and appreciation. Allen and Walker (1992) concluded
that mothers play an “active role” in the caregiving system and that interactions between
mothers and caregiving daughters result in “mutually beneﬁcial activities” (p. 210).

Brewer (2001) utilizes the feminist perspective to discuss the various aspects of
socialization as it relates to family care. Her work supports the importance of using
feminism to view caregiving systems, given the gendered norms that guide caregiving
research and elder care in our society. Brewer (2001) argues that two primary
perspectives inform feminist research on caregiving - the burden perspective and the
positive view. She asserts that the reality of caregiving likely lies somewhere between the
burden perspective and the idea that caregivers ﬁnd it “meaningful and fulﬁlling” (p.
227)

Ingersoll-Dayton, Starrels, & Dowler (1996) make a contribution to caregiving
work by asserting that there are many gender related variables of the burden perspective
as well as viewing “aging parents as potential resources” (p. 483). The authors found a
discrepancy in the amount of support provided to daughters versus daughters-in-law,
concluding that caregiving daughters-in-law are the most vulnerable of caregivers in the
adult child system. This study also documented that elderly mothers receive and provide
more assistance than their male counterparts. This ﬁnding may relate to the average
lifespan of women and men but warrants further examination (1996).

Harris (1998) addresses gender through a neglected topic in the caregiving
literature, the role of men. She acknowledges the role of the recipient of care in the

selection process by proposing, “that mothers do not select sons as primary caregivers

31

because of their concern for modesty” (p. 343). The sons who participated in this
qualitative study echoed experiences Similar to female caregivers- duty, acceptance, and
work ﬂexibility. This study is applicable to feminist concepts because of the use of
gender, as well as its acknowledgement that caregiving may have positive outcomes.
Related to males as caregivers, Morgan and Kunkel (1998) state that although mother-
daughter dyads are most often researched, ”the relationship most likely to experience
conﬂict is that between a father and son, with cross gender dyads (mother/son,
father/daughter) falling in between” (p. 235).

Neal, Ingersoll-Dayton, & Starrels (1997) aim to understand how gender
intersects with relationship type and care tasks among employed caregivers. They
surveyed more than 2,000 men and women who reported providing care for a variety of
individuals. The primary ﬁnding of this study was that commonly held beliefs about the
types of care tasks performed did not differ by gender. These ﬁndings did support the
thesis that female caregivers experience greater stress than their male counterparts.
Despite availability of resources, relationship to care recipient, and other personal
characteristics, stress was still higher among female caregivers. These ﬁndings, coupled
with the fact that female caregivers commonly have fewer resources, emphasizes the
variance in caregiving between men and women (1997).

Summary

The literature provides extensive information about family care and speciﬁcally
caregivers. Information on the stress and burden model, intergenerational care, caregiver
selection, reciprocity, and the recipient of care have been highlighted for this study as

they summarize key aspects of the research, while also documenting the gaps in the

32

literature. These segments support the concept that family caregiving is a
multigenerational process that develops over time. However, ”research on the family
rarely focuses on dyads, but instead usually describes relationships only through the eyes
of one of the participants, with most gerontological contributions taking the adult child’s
rather than the older person’s perspective” (Horton & Arber, 2004, p. 76).

Given what is known about adult child caregivers, more literature on aging
parents as recipients of care is needed. Like Horton & Arber’s (2004) work, the literature
provides several clear calls to family scientists to expand the caregiving literature with
respect to the recipient of care. Litvin (1992) states that we “must take into account the
differences in the meaning of the caregiving experience for each member of the dyad” (p.
75). In response to a literature heavily focused on caregivers, Keith (1995) asserts that
“single-source data collection will not reveal the diverse meanings of the caregiving
experience for various family members” (p. 180). Finally, Brubaker, Gorman, and
Hiestand (1990) state that “scant attention has been directed toward the perceptions of
elderly recipients of family care” (p. 267).

Through research on the caregiving process, scholars are beginning to learn more
about how family members come to assume care of an aging parent. However, much
more is needed to better understand this process within families. Pyke (1999) clearly
stated the neglect of this role in caregiving research and offered an example by which the
ﬁeld of family science has studied relevant dynamics,

Research on family power has been devoted primarily to dynamics between

husbands and wives, leaving power in other family relationships sorely

understudied....Meanwhile, other family relationships, such as those between

33

aging parents and adult children , have been gloriﬁed as harmonious due to norms
of attachment and ﬁlial obligation. Scholars have been reluctant to recognize
power dynamics as an important feature of relationships between aging parents
and adult children. As a result, we know little about variations in power dynamics
in aging families and what, if any, relationship exists between those dynamics and
caregiving strategies. (p. 661 - 662).

Although Pyke (1999) clearly identiﬁes power as an important variable, general

transitions and dynamics between aging parents and adult children also are

acknowledged. This clearly documents the need for further research on cross-generation

caregiving and transitions in power and other dynamics over time.

34

CHAPTER THREE: METHODOLOGY

This study aimed to understand the experiences of elderly recipients of care, and
their caregiving adult children, from both a current and historical perspective. This
research examined the role of the recipient of family care over time, including reported
changes in power and involvement. Furthermore, it used the recipient of care as the
primary source of information while also recognizing the adult child caregiver as another
valuable voice in the family care system. This study employed qualitative methods,
speciﬁcally the multiple case study approach, with elder care dyads (recipients of care
and caregiving adult children) as the unit of analysis.

Qualitative Methods

Qualitative methodology was selected for this research because the researcher
believed it was the best method for researching this population (elderly recipients of care)
about experiences with family care. This was based on two assumptions; that personal
contact with the researcher (rather than alternate forms of data collection) increases the
participant’s comfort and that interviews enrich data obtained from elderly recipients of
care (Yin, 1989). The case study approach was selected not only to understand how
participating families differ from one another but also to glean the experiences of
recipients of care and their history of family care, focusing on unique aspects of each
family.

This qualitative, case study approach offered a unique opportunity to hear from
recipients of care in order to better understand their current and past experiences. Cases
in this qualitative study were care dyads (an elderly recipient of care and an adult child

who provided some level of care) who participated in individual, semi-structured

35

interviews. Gillham (2000) states that qualitative research, Speciﬁcally the semi-
structured interview is the “most important form of interviewing in case study research”
(p. 65). Yin (1989) reports that the case study approach is meant to address speciﬁc types
of questions — questions asked of the speciﬁc case or of the interviewee such as ‘why’ or
‘how’. Berg-Weger, Rubio, & Tebb (2001) address the value of using such methods with
aging families, stating that, “using qualitative methods to study gerontological
experiences allows the valuable contributions of the respondents to be highlighted” (p.
264).
The Case Study Design

There are various forms of case study design which differ based on the questions
and planned analysis. Case study analysis is done either within cases or between cases.
Single case studies use within case analyses of a detailed, often multi-form data source.
For those more familiar with quantitative research, a single case study is “akin to a single
experiment” (Yin, 1989, p. 53). In multicase research, one can use various cases in one of
two ways, as a way to ﬁnd similar results or to examine contradictory ﬁndings that can be
explained by a solid theoretical foundation (1989). It is important to note that just as the
single case study mirrors a single experiment, the multicase study is comparable to the
way researchers approach multiple experiments (1989). When experiments yield variable
ﬁndings, such discrepancies can be discussed from a theoretical framework.

An important part of the research process entails the investigator’s selection of a
design (Merriam, 2001). In this study, the case study design was selected for several
reasons. First, qualitative methods were used in this project, and the case study design is a

logical partner with qualitative research, given they both address how and why questions

36

(Merriam, 2001; Yin, 1989). Secondly, the case study approach allows the researcher to
identify a unit that has discemable boundaries and to study interactional patterns within
that unit (Yin, 1989). Once the unit is identiﬁed, the case study approach allows the
researcher to intensely study the case(s). The purpose of this study was to better
understand the experiences of ten speciﬁc dyads relative to the guiding theoretical
framework, therefore the interpretive case study approach was used. The intent of the
interpretive case study is to obtain a “rich description. ...used to develop conceptual
categories or to illustrate, support, or challenge theoretical assumptions held prior to data
gathering” (Merriam, 2001, p. 38). Hearing the care experiences of both caregiving
children and recipients is an important component of gerontological research. When
compared with prior research and theoretical assumptions, the case study data has the
potential to offer knowledge that can inform future research (Merriam, 2001).

This study used the multicase design, looking not only within cases but also
comparing each family/dyad to others. Case study researchers (Gillham, 2000; Yin, 1989)
recommend that research be grounded in a sound theoretical perspective, which is also
necessary for the interpretive case study. In an effort to review these data with the three
theoretical perspectives that informed this study, both within and cross case analyses
were used. Variability between cases was expected as contextual factors varied from case
to case. With the use of Family Ecological Theory and the Human Ecological model,
these differences are addressed.

Research Questions
The following research questions guided this qualitative study; 1 - How did ACCS

and RoCs describe the current care arrangement? 2 - What ecological factors contributed

37

to family care? What messages (values) existed about care? 3 - How did the family make
decisions about family care and what role did the RoC play in this process? 4 - How did
elderly recipients of care describe the history of care in their family and what role have
they played in care over time (as a child, young adult, older adult)? 5 - How did RoCs
compare their care experience to experiences of their siblings, ﬁiends, and other RoCs in
their family? 6 - Were RoC’S and ACC’s reports/perceptions congruent (e.g. regarding
current care system members, history of care, messages about care)?

Feminism as Used in Qualitative Research

The process of qualitative research complements and is informed by the feminist
perspective (Myers-Avis & Turner, 1996). It is important to note that feminist research is
not a method but rather a way of conceptualizing research deﬁned by a particular
worldview (Allen & Walker, 1992; Myers-Avis & Turner, 1996). Feminist research calls
for attention to Speciﬁc aspects of the content and process of research. The feminist
researcher attends to power between him/herself and the participants and power in
society, attends to history and context, emphasizes social justice, and critiques the self as
a part of the research (1996; Rosenblatt & Fischer, 1993).

Through this project, the researcher employed the feminist perspective not only to
understand aging families but also to inform the research process. The feminist
perspective required the researcher’s use of reﬂexivity or acknowledgement of self in the
research process (Allen & Walker, 1992; Merriam, 2001; Myers-Avis & Turner, 1996).
Finally, the feminist perspective informed the critical approach of this study with respect

to commonly accepted assumptions about care. In line with feminist concepts, this

38

research was meant to challenge society’s approach to family care and the role of
oppressed individuals in the caregiving system (Myers-Avis & Turner, 1996).

In addition to using Feminism as the guiding paradigm, this study included
components of three qualitative methodologies — ethnography, phenomenology, and
grounded theory. It was ethnographic in that it was inductive, it reﬂected and was
“shaped by theoretical presuppositions and principles that guide the process of data
collection and analysis” (Newﬁeld, Sells, Smith, Newﬁeld, & Newﬁeld, 1996). The
ethnographic researcher is interested in learning how theory and participants’ experiences
reciprocally inform one another. Like ethnographic research, phenomenological methods
help researchers understand how individuals make meaning of a phenomenon they are
experiencing. Phenomenology is based on the assumption that individuals have their own
reality, eliminating an absolute truth (Boss, Dahl, & Kaplan, 1996). Furthermore, this
approach to qualitative research is characterized by “meaning questions” from which the
researcher seeks to understand how the participant makes meaning of the phenomenon
and his/her experience (1996, p. 91).

Finally, grounded theory, speciﬁcally substantive rather than formal grounded
theory, guided this research (Glasser and Strauss, 1967). Grounded theory research is
described as substantive when a speciﬁc group is studied. When similar concepts are
applied to multiple groups, the classiﬁcation of formal is more appropriate. For example,
in this study, concepts of power and role changes were applied to the experiences of
recipients of care. If ﬁndings from this study were discovered in additional studies on
other family members, then formal grounded theory would be the appropriate

classiﬁcation (Gilgun, 1992).

39

It is important to note that in addition to shaping the details of this project, they
also guided the overall approach/philosophy of this study. Two of the components
(ethnography and phenomenology) guided the overall framework of the study, that theory
and experiences reciprocally inform one another, that reality is socially constructed, and
that individuals make various meaning of their experiences. Furthermore, ethnography
and grounded theory guided the proposed methods of this study and were characterized
by use of theory and reciprocal coding and analysis process.

Sample

The sample was purposive in that elder care dyads were the focus, placing an
emphasis on widowed mothers and biological daughters. This study focused on family
dyads that included one recipient of care and an adult child caregiver. Recipients of care
were age 70 or older, either Single, divorced, or widowed, and had been receiving
assistance from an adult child for at least 11 months at the time of the interview.
Assistance may have included, but was not limited to, housekeeping, transportation, meal
preparation, ﬁnancial support, assistance with medical management, or personal care.

It is important to note that the focus of this study was on recipients of care and
their adult children rather than spousal caregivers or in-laws. This decision was made
based on the differences in power and position of adult children, compared to Spouses, in
the caregiving system (Fisher & Lieberman, 1996). Had caregivers, beyond adult
children, been included in this study, it may have diluted the ﬁndings given the variability

between roles such as adult child and Spouse.

4o

IRB Procedures

The procedures for this project were reviewed by Michigan State University’s
Committee for Research Involving Human Subjects (UCRIHS). Full approval was
received from UCRIHS, and a reliance agreement was provided to Ingham Regional
Medical Center, identifying Michigan State University as the primary institution
responsible for the credibility of research for this project. Following ﬁnal approval, two
revisions were submitted to UCRIHS for the purposes of adding recruitment sites.
Recruitment

Recruitment was conducted at several sites throughout the Lansing, MI
metropolitan area. The sites included two medical practices, an adult day center, a
university family resource center, and four assisted living facilities. Recruitment
consisted of participating professionals (director, physicians) identifying and individually
informing qualiﬁed families about the study. Approved study information sheets were
distributed to these families, and they were given the researcher’s contact information
(see Appendix A). Fifteen families from the adult day center were informed about the
study, two inquired about the project and both completed interviews. Twelve families
from the two medical practices were given study information sheets, three inquired, with
two qualifying and completing interviews. The university resource center director sent
the study information sheet to 104 members of the family caregiver electronic listserve.
Seven families contacted through the resource center inquired about the project but only
two meet the inclusion criteria and completed the interviews. Finally, four assisted living

centers distributed approximately 25 study information sheets. Five families from two

41

assisted living centers inquired about the project and the four that met the inclusion
criteria, completed interviews.

Individuals who received the study information sheet and were interested in
participation contacted the researcher to schedule an interview. Initial interviews were
scheduled with adult child caregivers at a site of their choice (their home, ofﬁce or the
researcher’s ofﬁce). Following the caregiver interview, interviews were scheduled with
the parent at the site of his/her choice (home, an adult day center, or the researcher’s
ofﬁce). Individuals who chose to participate in the study completed two written consent
forms, a general and a direct quote consent form (see Appendix B & Appendix C). The
general consent form described the research project, including potential risks and/or
rewards. The direct quote consent form was used to describe the use of verbatim
interview segments and to allow the researcher to use direct quotes while maintaining
conﬁdentiality. At the end of each interview, participants were given a $10 gift certiﬁcate
for a local retail store ($30 total per family).

Interview Context

The three locations used for interviews, other than participants’ homes, were
handicap/wheelchair accessible private ofﬁces with comfortable seating. The medical
ofﬁce included a suite with casual furniture (a couch and two chairs). The second ofﬁce
was housed within the adult day care center administration suite and included ofﬁce
furniture, a large table, and several chairs. Finally, several recipient interviews were
conducted in a meeting room of one of the retirement centers. This attractive room had a

dining room table and chairs and was referred to as the “Rose Room”.

42

Although each space was adequate, there were considerations with each location.
The medical ofﬁce provided conﬁdentiality for participants in that the reason for the
participant’s visit was unknown to anyone other than the researcher. However, there is a
hierarchy associated with the medical profession that may have inﬂuenced the
participant’s comfort level and/or responses. Although the conﬁdentiality agreement was
reviewed with each participant, an individual may have assumed that his/her physician
has access to the data. Since some participants shared the same physician with family
members, this may have caused resistance to sharing caregiving experiences. The
available ofﬁce space at the adult day care center made participation convenient and
accessible. However, this site did not provide the comfort one might experience at home
or in a non-ofﬁce setting. Furthermore, individuals attending center activities were able to
observe the participant’s absence and may have inquired about the purpose of the
interview.

Data Collection

The data collection for this study included four stages, spanning from the initial
recruitment contact to the second part of the RoC interview (see Appendix D).
Recruitment included contact between professionals from the sites described above and
family members who met the criteria for the study. In cases in which the adult child
caregiver was present (i.e. the ACC attended the doctor’s appointment with the RoC or is
at the Day Care Center at the time of initial contact) both individuals were informed
about the study and given a study information sheet.

In stage two, initial contact was made by a participant to inquire about the study.

The study was described, including both the RoC’S and the ACC’s role (e. g. interviews),

43

and the caregiver interview was scheduled. By the end of stage two, the researcher had
contacted both the ACC and RoC to schedule interviews.

Stage three consisted of a consultation interview with the adult child caregiver.
The purpose of this meeting was two fold, for the researcher to learn more about the adult
child’s role in the current caregiving system, including how he/she believes that role was
assumed, and to answer questions about the study (see Appendix E). This time also
offered the adult child the opportunity to ask questions about the recipient interview.
Although conﬁdentiality was protected (interview content was not shared), this
opportunity offered the caregiver the chance to give her input. For example, one adult
child caregiver reported that her mother takes frequent restroom breaks but may forget to
do so during a lengthy interview. Therefore the researcher built a 5—minute break into that
interview.

The fourth stage of the study included a two-part interview with the RoC. The
time between the two parts of the RoC interview ranged from ﬁve to eleven days. This
interval allowed the RoC time to reﬂect on the initial interview and considered physical
limitations (e.g. sitting too long). Furthermore, the recipient interview was done in two
parts to separate questions about the current and past care systems.

After each interview, the researcher completed ﬁeld notes and family care system
ecomaps. These data sources were used to supplement the interview data and serve as a
form of triangulation. The ecomaps were especially important in examining the current
care system and measuring issues of congruence.

Part one of the interview focused on the current caregiving system, including key

members, roles, and perceptions of decisions relative to care. This interview also

44

included questions the RoC was asked to reﬂect on his/her experience in comparison to
others (e.g. siblings, ﬁiends) (see Appendix F and Appendix G). Following the ﬁrst
recipient interview, a caregiving ecomap was constructed to illustrate the current
caregiving system. Relevant information from the caregiver consultation interview also
was included on the ecomap, which aided in measuring congruence.

Initial plans included use of a family genogram and caregiving timeline, to be
utilized much like the caregiving ecomap. However, it was determined that these tools
were redundant, not useful to the data analysis, and were consequently removed from the
data analysis process.

Data Analysis

All interviews were audiotaped and transcribed verbatim. Once transcripts were
complete, the simultaneous process of coding and analysis began using the constant
comparative method described by Glasser and Strauss (1967). Data were entered into a
qualitative data analysis program (e. g. MaxQDA). MaxQDA was used by the researcher
to organize and code the interview transcripts. A second coder and peer consultant
reviewed transcripts in paper form, coding the hard copies. These comments were
integrated into the ﬁnal coding scheme by the researcher, and the ﬁnal analysis was
completed.

The constant comparative method developed as an integration of two previous
forms of qualitative analysis — testing hypotheses by coding and then analyzing data or
reviewing data as a way to discover emerging theory. The constant comparative method

integrates both of these approaches using the “explicit coding procedure of the ﬁrst

45

approach and the style of theory development of the second” (Glasser & Strauss, 1967, p.
102)

The constant comparative method is a four-step process beginning with
“comparing incidents applicable to each category” (Glasser & Strauss, 1967, p. 105).
Each portion of the data is coded into already existing themes or is marked with a newly
identiﬁed theme. The coding is always done using a frame of comparison with other
codes in the same category, developing a type of continuum within that category / theme.
In the second phase, Glasser and Strauss (1967) describe a reciprocal process by which
the data are delineated into categories but also integrate across categories to support
- greater ﬁndings. In step three, the ﬁndings are classiﬁed into two primary categories —
themes and theory. As the analyst continues to review the data, redundancies will likely
emerge. The researcher eliminates redundant patterns in an effort to make the ﬁndings
more concise and relevant to a larger theory. In the fourth and ﬁnal stage, the researcher
articulates his or her contribution to existing theory (I 967).

The data analysis process followed this method, beginning with codes, moving to
themes, identifying key ﬁndings, and ﬁnally linking data to existing theory. Later in this
document, links to previous theory are documented and discussed.

Data and Coding Triangulation

Data credibility is fundamental to all research — quantitative and qualitative. In
qualitative research, there are various ways to enhance the credibility of research —
including data triangulation, peer examination, and the acknowledgement of the
researcher’s biases (Merriam, 2001). Merriam (2001) deﬁnes data triangulation as “using

multiple investigators, multiple sources of data, or multiple methods to conﬁrm the

46

emerging ﬁndings” (p. 204). Data triangulation was addressed through multiple forms of
data: the caregiver consultation interview, the two part semi-structured interview, ﬁeld
notes, and a caregiving ecomap. Field notes were constructed after each interview
documenting the researcher’s general impressions. Two caregiving ecomaps were
constructed for each family to document the caregiving system. The two ecomaps were
synthesized into one family ecomap that aided in the individual and cross-case analysis
and the descriptions of care systems. The various forms of data served to verify and
ensure data accuracy. A second form of triangulation, use of multiple investigators and
peer examination, was utilized. In order to add credibility to the coding process, two
coders were used and both coded the data independently. Although coding was
completed independently, the coding consultant was given the theoretical map before
reviewing transcripts. Therefore, both coders were working from a similar theoretical
map and framework. It is important to also note that the coding consultant has
experience with qualitative research, works with the elderly and underserved populations,
and has a similar academic background as the researcher. The second coder and
researcher met twice to discuss coding and to process the data in general. Correspondence
regarding changes in the coding schemes also was done via e-mail and phone
conversations. Although coding schemes were highly congruent, some discrepancies
arose. In the case of coding the current care tasks, the coders had differing opinions
about how to categorize these tasks. When these discrepancies occurred, the researcher
and coder discussed their operationalization of a particular code and in most cases agreed
on a category that encompassed both interpretations. It is important to note that overall

the coding schemes were closely aligned and therefore minimal differences existed.

47

Since each person brought her own individual experiences and perspective to the coding
process, having multiple coders highlighted similarities in the data that were guided by
theory.
Trustworthiness

Although the concept of validity relates to qualitative research, the term
trustworthiness is instead used to refer to a sound methodology that gains what the
researcher purports to have studied. In order to establish trustworthiness in this study,
several approaches were taken from conceptualization to data collection and coding.
Three primary, well—established theories informed this study and resulting research
questions. Furthermore, the multiple sources of data documentation served to verify the
interview information (caregiving ecomap and timeline). Using multiple independent
coders ensured that data were accurate and addressed the concept of credibility (the
qualitative equivalent to reliability).

The Role of the Researcher

AS a part of the qualitative research process, it is important to acknowledge the
experiences, strengths, and biases the researcher brings to the study, as these factors
inﬂuence his/her perspective (Merriam, 2001). Boss, Dahl, & Kaplan (1996) concur,
asserting that, “social inquiry is inﬂuenced by the investigator’s beliefs about how the
world works. Subjectivity (rather than objectivity) is therefore recognized as a
“researcher’s reality” (p. 85).

As with most research, this is part of a process that began many years ago.
Although I did not know it at the time, my future research plan began in my grandpa’s

living room approximately 11 years ago. He was 86, living independently, and chose to

48

talk to his 18 year old granddaughter about his desires for late life care — should the time
come. Several years later, I realized the uniqueness of this conversation, learning that he
had not had this talk with either of his daughters (at least not that anyone could
remember). I found myself in a difﬁcult position. I knew what my grandpa had
articulated to me but saw that it was not being implemented. Although my grandpa was
cognitively very aware, we both sat back and watched his daughters make decisions
about his care. Although I am unsure why he chose not to articulate his wishes in either a
formal or informal way, I concluded that it was in part a result of decreased power in the
family (related to age). In truth, his decision may have been out of trust, contentment,
and/or fatigue. My education and experiences led me to believe that his chronological
age, gender, and status as a widow launched his daughters into caregiving and decision
making roles — minimizing his voice (and of course placing added pressure on “the
girls”).

Since my mother, the younger of the two, assumed full-time, co-resident care of
my grandfather for several years, I witnessed much of this arrangement ﬁrst hand. I came
to question how She, rather than her sister, became his caregiver. I also questioned what
my grandfather would have arranged if he had been asked. Our family made logical
statements such as, “Claudia is single, has a big house, and can afford to take Grandpa
in.” I also noted that several years prior, Grandpa had stepped in to help my mother after
an emergency heart surgery, resulting in what I have come to call my ﬁrst experience
with reciprocity.

I came to be confused and amused by the different stories of care that existed in

my family. My mother said, “Grandpa needed us a lot more than we needed him. He

49

moved here because he had nowhere else to go.” My brother complained that Grandpa
was there because he needed care, often treating him disrespectfully. I concluded that
Grandpa moved 600 miles (from his lifelong home) to live with me. I think he did this
because he made this spontaneous move within a week of both my mom’s and my
brother’s emergency hospitalizations -— both of which left me temporarily alone at 13. I
also determined that it was Signiﬁcant that Grandpa lived with us (following my mom
and brother’s recoveries) until the month I left for college. It was at that time that he
moved into his own home and lived independently for six more years. Eventually, my
grandfather began to need care. I watched as the cycle of care and reciprocity continued.
Simply stated, it is my belief and consequently my bias, that the recipient is a valuable
member of the caregiving system and should, when possible, be actively involved in
decisions regarding care.

By training, I am a family scientist and marriage and family therapist, and my
knowledge of aging individuals is rooted in family ecological and transgenerational
family therapy theories. As a therapist, I have worked with countless females who were
providing care to an aging parent. Given my interest and belief that relational therapy is
ideal, as opposed to individual therapy, I advocated for work with caregivers and
recipients. It was my observation that caregivers, physicians, and even other family
science professionals viewed the caregiving relationship as unidirectional. This belief,
combined with widely accepted stereotypes among adults 70 and older about mental
health treatment, limited my ability to work with caregiving systems. I think that this is

one example of how recipients can become invisible members of the care system.

50

Limitations

This study used the case study approach, was exclusively qualitative, and
consequently had related limitations. Since this study involved a primary focus on
recipients of care and one caregiving adult child, the perspective of family care came
from only two family members. Although this allowed for an in depth examination of the
recipient of care’s perspective, it was a limited view of the complex caregiving system.
Secondly, the sampling and data collection methods required participants to have the
physical and cognitive abilities to participate in an interview. This method excluded
individuals with advanced dementia, Alzheimer’s disease, severe hearing loss, and/or
other physical and cognitive limitations, which frequently characterize recipients of care.
This research asked recipients of care to infomme evaluate how their family (including
their caregiver) made caregiving decisions. As a result of loyalty to family or caregivers,
participants may not have provided thorough or honest responses. Finally, caregiving
systems often include both family and non-family members. However, this study focused
exclusively on how caregiving decisions are negotiated in families, eliminating inquiries
about non-family support, and potentially excluding an important component of the

caregiving system.

51

CHAPTER FOUR: RESEARCH FINDINGS

The ﬁndings of this study are described in two parts; a description of the sample
and research ﬁndings. Provided in the description of the sample is a narrative overview of
the ten families (20 informants) who chose to participate. In addition to the collective
summary, the ten elder care dyads are brieﬂy described in Table 4.1. Following the
description of the sample, the segment on research ﬁndings outlines data from the 30
semi-structured interviews. In keeping with the case study design and for the sake of
continuity, each research case (elder care dyad) is described individually. Each case
description provides detailed reﬂections from interactions as well as data that address
each research question. At the conclusion of this chapter, individual and cross-case
themes are summarized.

Overview of Sample

All ten dyads that participated were mother-daughter pairs currently engaged in
some level of elder care. The age of caregivers ranged from 36 —— 68, with a mean age of
51.9 years. Recipients of care ranged in age from 72 - 92, with a mean age of 79.4 years.
The majority of dyads (seven) were Caucasian, two were Aﬁican-American, and one was
Lebanese.

In all ten cases, mothers and daughters agreed that the identiﬁed daughter was the
recipients’ primary caregiver and had been for at least 11 months. Although two of the
adult daughters were only children, all ten dyads described a care system that included
three or more people. Four of the dyads were co-resident, with two dyads living in the
adult child’s home and two dyads living in the recipients home. Six of the dyads were not

co-resident; ﬁve recipients lived in assisted living centers and one lived in her own home.

52

Most caregivers and recipients lived within close proximity of one another, with the

greatest distance being 63 miles.

Table 4.1 : Descriptions of Participants

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Dyad Name Age Ethnicity Marital Co-resident # of
# Status children
1 Veronica r 52 African-American Divorced YES Id
Karin 77 African-American Widowed ACC’S Home l

2 Martina r 47 Caucasian Remarried YES 2 c
Mona 76 Caucasian Widowed ACC’S Home 5

3 Leda 2 54 Caucasian Married NO 2 a
Bernice 72 Caucasian Widowed Own Home 5

4 Dena 3 49 Lebanese Divorced YES 1b
Vera 88 Lebanese Widowed Own Home 3

5 Abigail 4 52 Caucasian Widowed NO 14
Beulah 80 Caucasian Widowed Asst. Living 1

6 Carrie 2 36 Caucasian Single YES 1 c
Deborah 76 Caucasian Widowed Own Home 3

7 Sandy 3 51 Caucasian Divorced NO 2 b
Anna 82 Caucasian Widowed Asst. Living 4

8 Idah 4 68 Caucasian Remarried NO 2 b

Rita 92 Caucasian Widowed Asst. Living 3*/2**

9 Jana 4 51 African-American Single NO 3 b
Tina 72 African-American Widowed Asst. Living 4

10 Dora 4 54 Caucasian Married NO 2 4
Donna 80 Caucasian Widowed Asst. Living 1

 

 

Recruitment Sites:
1 Community Adult Day Center; 2 Physician’s Ofﬁce;
3 University Resource Center; 4 Assisted Living Facility

* # of living children; ** # of children who preceded mother in death
a Oldest Child; I, Middle Child; c Youngest Child; 4 Only Child

In nine of the ten cases, mothers and daughters reported that a major event
precipitated the current arrangement. In seven of the cases, the recipients’ health declined
dramatically, necessitating increased care. In three of the ten cases, the death of a spouse
(and the family’s subsequent concern) was the major event identiﬁed as precipitating

care.

53

Recruitment and Contact With Informants

Participants learned about the project from one of four recruitment Sites. A total of
17 families inquired about the project. However, through the screening process, it was
determined that seven did not meet the study criteria. In those cases, four of the recipients
were married, two recipients were unable to complete an interview, and one caregiver
was a grandson rather than an adult child. Therefore, 100% of those who inquired about
the project and met the inclusion criteria completed the interview process.

Eight of the ten caregivers contacted the principal investigator directly, whereas
two of the recipients made initial contact for participation. All interviews were done in
person and one-on-one, with each member of the dyad being interviewed separately. In
all cases, the caregiver consultation interview was completed ﬁrst, with the ﬁrst recipient
interview following anywhere from one hour to ﬁve days later. Since the recipient of care
interview was conducted in two parts, the time between parts one and two ranged ﬁ'om
ﬁve to 11 days. In all cases, each informant was offered a $10 gift certiﬁcate to a local
retail store ($30 per dyad). In all cases, recipients accepted the gift card when it was
presented as “a token of appreciation for your valuable time and willingness to share your
experiences with me”. All but one caregiving daughter accepted the incentive.

Interview Sites

In an effort to accommodate various scheduling and accessibility needs of
informants, interviews were conducted at a variety of sites. In three cases, all interviews
were done in the informants’ homes (two cases were co-resident; one included visits to
both the ACC’S and the RoC’s home). In two cases, the recipient interviews were

conducted in the home but the caregiver interview was not. In two other cases, the

54

reverse occurred, where the caregiver interview was conducted in the daughter’s home
and the recipient interviews were done at alternate sites. In three cases, neither interview
was conducted in the inforrnant’s home. Alternate interview Sites included the
researcher’s ofﬁce (four interviews), the adult day center conference room (four
interviews), meeting rooms at the assisted living facilities (seven interviews), and a
caregiver’s place of employment (two interviews).

There were beneﬁts and detriments of each site used. One’s residence and place
of employment allowed for more distractions (phone interruptions, lawn mowers,
salespeople, animals) than the researcher’s ofﬁce or a meeting room. However, these
settings offered the researcher a unique perspective of the informants’ context. In Rita’s,
Deborah’s, and Tina’s case, this was especially helpful as their homes offered
information about quality of life and daily activities.

The above section introduced the ten cases as a whole, noting demographic
similarities and differences across the dyads. The following section offers a review of
each case / care dyad, addressing key components of the six research questions - namely
care description and system, ecological factors contributing to care and decision making,
messages / values about care, and the history of family care and comparison to others’
experiences. This format was based on links between the concepts found in the guiding
theories and previous literature. Each case begins with a brief description, introducing the
reader to both the caregiver and recipient. This is followed by a description of the current
care arrangement and related congruence issues. Then data are discussed relative to
Family Ecology Theory, integrating ecological factors and decision-making Since these

were logically interconnected by the informants. Furthermore, although the concept of

55

values is also tied to Family Ecology Theory, based on the data and the way informants
discussed this concept values were addressed separate from other ecological concepts.
Finally, the history of family care and comparison to other’s experiences were addressed
collectively as they were linked by informant’s experiences of providing care over time
and how they perceived other care experiences in their family. Finally, the individual
case reviews are completed with a summary and reﬂections segment. At the end of this
chapter, a discussion of emergent themes serves as a form of cross-case analysis.
Family Care Dyads
Family One: Veronica and Karin

Caregiver

Veronica, a 52-year-old African American woman, is single, works full time and
has one adult son. Field notes indicate that Veronica is attractive, well educated, and
articulate. Veronica, an only child, appeared to be very comfortable as her mother’s
primary caregiver and spoke fondly of their time together.
Recipient

Karin, a widowed 77-year-old African American woman, lives with her only
daughter Veronica. Four years ago, after a sudden physical decline she moved from
another state to live with her daughter. Prior to that time, She was retired from paid work
but reported heavy involvement in volunteer work, speciﬁcally assisting older adults.
Karin was pleasant to talk with and responded thoughtfully to questions posed in the
interview. She was positive, reﬂective, and gracious as she Spoke about various

experiences. She smiled a lot and laughed during our visit as she reﬂected on little

56

glitches in the caregiving process. She reported enjoying the interviews and asked to give
me a hug at the end of our second interview.
Care Description & System (RQI & RQ6)

Since Karin’s sudden physical decline four years before the interviews, she had
been receiving assistance from her only daughter and two in-home aides. Karin and
Veronica both included bathing, meal preparation, hair care, money management,
laundry, and administration of medication in their descriptions of care tasks. Although
their descriptions were highly congruent, Veronica added social time to her list of things
she does with her mother. Walks and shopping for fun were included in these activities.
Both Karin and Veronica were highly satisﬁed with the care system and were accurate in
their perceptions of the other person’s experience with care.

Given Veronica’s status as an only child, the in-home aides were heavily involved
in Karin’s daily care and according to Veronica, “are like family”. The two in-home aids
work approximately three hours a day, which is split between the morning and afternoon.
Karin attends an adult day program ﬁve days a week, and the’aides assist her in both
preparing to leave and in returning home. Although public transportation is provided for
Karin to and from the center, the transportation staff does not assist her in or out of her
home.

Both Karin & Veronica reﬂected on the current care arrangements, talking
speciﬁcally about what they like and dislike about the current system. When asked what
she liked most about her current arrangements, Karin reported, “For the arrangements at
home, I can't think of anything I would change. . .and for the things I can't change, I have

been able to accept them in a nice way.” When asked if there was anything she would

57

change about the current arrangement, Veronica quickly responded, “Absolutely not! I
would not have her be any place but with me.”

Karin and Veronica had a well-established care system, which was likely a result
of the length of time in the current arrangement. Although the arrangement was
established when Karin needed signiﬁcantly more attention, they have remained ﬂexible,
adjusting things as needed.

Ecological Factors Contributing to Care & Decision Making (RQZ & RQ3)

Several ecological factors contributed to Veronica and Karin’s current care
arrangement, declining health, dynamics among extended family, the medical
community, geography, community context, and resources.

Veronica was very clear that her mother’s dramatic physical decline warranted
increased care. After 35 days at the Mayo clinic, Veronica and Karin’s physician agreed
that more intense care was needed. Although Karin had a strong support network in her
home community, Veronica did not believe that this system would offer her mother what
She needed:

We were still thinking that she would be able to return home and just do stuff with

visiting nurses and stuff like that but. it was really obvious to us that that was

not going to work. Their schedules were unpredictable and they can't guarantee
that, ‘I'll be there at eight o'clock’ for example or what ever. They tell you that,

‘I'll be there and I'll call in advance’ and she didn't know to answer the phone and

open the door to let them in. So that system just, it was obvious that it was not

going to work for us.
Veronica also believed that her mother’s role as a supportive family member put her in
jeopardy of not getting what she needed, if she had stayed in her home area:

[Mom] was the support person for lots of those people. So of course they were

fairly reluctant to see her go, almost angry, somewhat belligerent, until anyone of

them spent any time with her and could see the way that she was, that she was not
the same person. But said, ‘Well, we can help you we will step and in the place of

58

these other people’ and you know I had to just say, ‘no’. I had to turn down their
requests to be the people... .I have. . . .some extended family there but one of them
was caring for her dying husband at the time. ...She of course, had a complete
breakdown before that whole process was over and my mother was her support.
My mother seeing how upset She was getting made her more upset so I

really. . .that was really the key reason why I had to turn down all these other
people's offers.

Veronica reported that her mother had an active role in the decision-making process
leading up to her care:
So, and by then, my mother was saying, ‘Whatever you say is ﬁne with me’. It
was pretty sudden and she was OK with it. She didn’t really know what was going
on at that time but during that stage, even though it was quickly passing through
that stage, it was with her consent that we went through that stage and onto the
next stage.
Veronica reﬂected on what she believes her mother’s decreased involvement means for
her:
I think she's become quite content with not being. . .My mother was very strong
willed and quite the organizer and 'let me tell you how it's done' kind of person.
On the other hand, I think it’s almost come to be a relief for her. She's tired of that
role I think after all these years (laughter).
Karin reﬂected on other care options that she could have considered, clearly stating her
expectations for family care, “It's kind of hard I think if my daughter had told me she was
going to put me in a nursing home or a home of some kind because she couldn't ﬁnd me
any of the other help. I would be very disappointed.”
Karin reported the decision-making power that she feels She and other program
attendees have:
So that's the thing I really like about this program, they give you a chance to make
up your mind even though the caretaker comes in with them, you too can decide. I

like that idea, to know what you are getting into and you can decide. I think it’s
better that way. At least I like it that way.

Messages / Values About Care (RQ2 & RQ4)

59

There were several key messages that were stated by this dyad, namely care of
family members is expected, utilization of formal care facilities would be a
“disappointment” and should be considered only out of necessity, and in most cases care
is reciprocal. Regarding her role as a recipient, Karin was very clear about her desire to
live with a family member, which likely placed her only child in the caregiving role, “It
would be hard for me to accept going somewhere else and staying with someone else
other than my family and it's almost like grief or death to me.” Veronica made a clear
statement about her expectations in caring for her mother by stating, “I would not have
her in any other place but here. I mean that’s. .. I just wouldn't.” Karin talked about the
trust she has for her daughter and alluded to the mutually beneﬁcial relationship, saying:

Mentally I knew it was the best thing for me because I knew Veronica could take

care of me. Even though I had to give my house away, I wouldn't be worrying

about her worrying about me and she'd be worrying about me at the same time.
Finally, Karin reﬂected on the messages transmitted over time, “It was just a given, so to
speak, that you do those things for your parents. You look after them. The fact that you
just do it that's what you're supposed to do. It’s like a religion.”
History of Family Care & Comparison to Others’ Experiences (RQ4 & RQ5)

Several messages emerged about the history of care in Karin’s family. She was
clear about the importance of taking care of family members, played a Signiﬁcant role in
the care of her in-laws, and noted gender socialization in respect to the care of her
parents. Reﬂecting on the messages of care in her family over time, Karin stated clearly:

It's just a sort of. . . caring was just sort of cyclical. One generation cared for the

next. Whoever was there took care of the next one and it was just a natural thing
to do. Whether you wanted to do it or not - you did it.

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In a more detailed description of her role as a support person / caregiver to her in-laws,
Karin recounts her speciﬁc responsibilities:
It was my job to try to ﬁnd the things that would get her [my mother-in-law] to
possibly rest so I would sit and talk with her about things or do other things to
keep her busy. ...She would try to change the sheets for cleanup or do this or do
that. I would do that just to keep her kind of quiet from doing too much around
the house”
Karin was able to track ﬁlial responsibility back to her childhood, reporting:
When I was a child, there was usually more than one generation house. It was
usually your grandparents or grandfather or grandmother because the people
didn't live too far from each other so they just stayed there. There was no choice
but to take care of them but because the older person in those days, whether they
knew anything or not, they were looked up to.
Karin even attributed the long line of ﬁlial responsibility to genetics, indicating in the
statement below that they were passed from her mother-in-law to her own daughter,
Veronica — without acknowledging her own role in that process:
She [mother-in-law] was always doing something. She was a very giving person
and always giving her services always wanting to do things for people. I think a
lot of that I mean there must have been some genes in there somewhere with my
daughter because she really takes good care of me.
One aspect of Karin’s life that was somewhat unique, but very strong, was the level of
responsibility she felt in giving to non-farnily members, speciﬁcally her neighborhood.
The following statement reﬂects this value, Speciﬁcally discussing it in respect to family
loyalty:
It's just a part of living that we need to take care of each other and especially our
own. And if you have enough time you could help other people but so many times
you are not able to help as many people as you wanna help.

Karin reﬂected on an experience similar to hers, noting the importance of resources in

family care, by stating:

61

I have a ﬁiend whose mother lived by herself until She wasn't able to take care of
herself and she had someone to come into look after her until she got home from
work the same way that Veronica does for me. Now because she had a good job,
she could afford to pay someone to come and to look after her mother.

Summary and Reﬂections

Veronica and Karin had been in their current care arrangement for four years, an
arrangement precipitated by Karin’s sudden decline in health. Karin’s physician played a
signiﬁcant role in the family’s decision for co-resident care. Karin was vocal about her
expectations for care, adding that she appreciated her daughter’s ability to provide care.
Karin had provided care to her mother-in-law and reported being more involved in her
care than in the care of her own parents.

Although the focus of this study is on family care, this case challenged the limits
of those parameters for several reasons. First, the aides hired to help Karin on a daily
basis were clearly part of the functional family system, with Veronica stating “they are
like family.” Other non-family variables emerged as Veronica talked about her role as a
community volunteer, reporting that a strong value she holds is related to helping others,
family and non-family members. Finally, Karin’s position as a support hub for her
extended family was challenged when her health declined. Others, namely her niece,
depended on her placing Veronica in a position of telling others no. This important yet
peripheral conﬂict has not been addressed by the family care literature. Therefore this
case offered much in the way of new directions.

Family Two: Martina and Mona
Caregiver

Martina, a 47-year-old Caucasian woman, is re-married, employed full time, and

has two sons. She lives with her husband, two sons, and her mother (Mona). Martina was

62

a petite, soft-spoken, yet energetic woman. She is the youngest of ﬁve children, one of
two daughters, and reports that She and her mother had the most tenuous relationship over
time. Martina reported being new to the caregiver role (just over a year) and admitted to
learning something new every day. She reported that her Christian faith and self-care
efforts are important resources in her role of caregiver.

Recipient

Mona, a 76-year-old widowed Caucasian mother of ﬁve was born in Europe and
immigrated to the United States as a young woman. She was very talkative during the
two interviews. Several months before our interview, she had been interviewed about an
unrelated topic (D-Day), which seemed to weave its way into our discussion. Mona had
provided care to her husband for a short time before he died and was able to thoughtfully
compare that experience to her current care arrangement.

Care Description & System (RQI & RQ6)

Martina assists her mother in a variety of ways, including providing a home,
bathing, meal preparation, money management, and socialization. Although her husband
and two sons support Martina in some of these tasks, she is the primary caregiver.
Martina described the amount of time she spends caring for her mother:

I would say 20 hours a week is what I would, on average, Spend and it's hard for

me to put that in a capsule because it is interspersed throughout the day. I may be

at the ofﬁce and make a phone call to change an appointment.
Mona also included bathing and money management in her description of the assistance
she receives from her daughter. She also speciﬁed that the space provided to her is a
primary form of care although noting the limitations of the physical space, “I think they

need to ﬁnd something that I can do because I can’t go outside because I can't walk out

63

there because the steps.” Mona, as a co-resident recipient, talked about her experience of
living in her daughter’s home, stating that the arrangement provides some things but also
lacks others, “That's ﬁne and dandy but the thing is that this isn't really my home.”
Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Several ecological factors led to the current care arrangement, including Mona’s
severe fall, Martina’s concern about Mona living alone, geography, gender, and prior
discussions between family members. Both Mona and Martina described signiﬁcant
conﬂict leading to the current care arrangement.

Martina reﬂected on a period of time where She and her siblings avoided the
discussion about care, “It was easy to let Mom stay in the house after Dad passed away. It
was easy to resist the arguments or avoid the argument that we knew would result from
one of us saying, ‘you need to leave’.” Although the family admittedly avoided the
discussion as long as possible, a bad fall was the ﬁnal event that led Martina to take
action. After hearing about her mother’s fall and seeing her badly bruised body, she
reports: 1

I called all my siblings and said, ‘It's time. She's coming back with me and if any

of you think that she can stay in her home any longer, then you guys come up here

and handle it because I can't leave her like this’. And they all agreed that it was
time for a decision and that's how she came to be here.
Martina shared her perception of how she came to be her mother’s caregiver, speciﬁcally
in comparison to her siblings, “I think I was the one who was most interested and I don't
say that from a, ‘yeah me standpoint’. My three brothers all have other things going on
that make their situation non-traditional.” Martina talked about her role as a caregiver in

respect to the brother that she thought would be the logical choice. The concepts of

gender and relationship dynamics are alluded to in the following statement:

64

She was much closer to the rest of the kids than she was to me and particularly
one of my brothers. But he, he doesn't want to take care of his mother and he's so
stated, ‘I don't want it. I don't want to take care of her. I don't want to be tied
down. I don't’. He says that I have more of a capacity for caregiving and I think
that's true but I also think it's acquired; you learn how to care for somebody, you
learn how to be the things that I'm learning how to be.

Mona talked Speciﬁcally about Martina’s role in discussing care needs prior to providing

care, “Martina told my husband and 1, ‘you'll never be without a home. . ..you'll always

have a home’.”

Martina and Mona both reported conﬂict surrounding care decisions, currently
and over time. Mona talked about her perceived lack of involvement in decisions leading
to care:

They did that oh, so quickly they didn't really discuss it. . .Oh Martina says ‘you're

going back to Michigan’. . ..they didn't give me much time to get anything. I'm

still missing some of my stuff - stuff that may not be important to anyone else but

it is something I used all the time. . ..I mean and she just got a plane ticket and I

thought I didn’t have enough time to prepare.

Martina talked about the role that her mother plays in decisions, detailing two examples
where her mother had varying involvement:

The decision of what to do with her house is the biggest one out there right now.

And it's the hottest one and she is adamant about not selling the house. And it

doesn't matter that is not a practical thing and it doesn't matter how many people

are inconvenienced because they have to take care of the property or worry about
the property at a distance. She's adamant about that.

She pretty much that goes along with whatever if I make a suggestion in the right

way that I don't try to bulldoze her was that she'll at least... like the ear thing's a

good example, we butted heads about it she said I'm not doing it and I said, ‘OK’.

Martina talked about her perception of her mother’s involvement, stating, “I think we
always have to reevaluate whether or not she's getting what she needs and she's the best

jUdge of that. She'll tell me what She needs if I'm not giving it to her.” Martina reﬂected

on her mom’s changing involvement in decisions:

65

Now she, she still has a hand in the decisions - that She's happy to turn it over.. ..
she's not as not as questioning as she is about goings on because I think she's
come to rely on [my husband] & I. To know that her checking account balance
hasn't changed much since she got here so we must be doing something right
(laughter).

Messages / Values About Care (RQ2 & RQ4)

Martina reﬂected on her experience as a caregiver, talking Speciﬁcally about her
previous relationship with her mother and the role that faith has played in their changing
roles Martina said, “I still marvel and I just think it's God's way of making this thing
become a place of peace for me rather then a place of torment.” After having shared that
she and her husband bought their current home several years prior, with the thought that
it would be appropriate for their elderly parents to live in, Martina reﬂected the
following:

I think we are blessed that we have a place for her. The alternative is that she

would be in a place that I wouldn't necessarily want her to be, that she doesn't

really need to be right now. She's not there. And maybe that time will, and it will
be difﬁcult to make that decision. But we're not there yet.
Martina also alluded to the desire not to place her mother in a formal care facility,
specifying later in the interview that she does not want to ever put her mother in a nursing
home.
History of Family Care & Comparison to Others’ Experiences (RQ4 & RQ5)

This was not a key factor for this family. Mona lived a long distance from her
mom and dad and reports that her sister provided the majority of care to their parents.
Although this component was not substantial for this case, some relevant data are
included below.

Mona described an awareness of family care but described her role as peripheral,

given her residency in another country (than her parents). She reports that her sister

66

provided most of the care to her parents, indicating that after her mother died, Mona’s
father lived with her sister. In the next passage, Mona describes her own process in the

days just before her mother's death:

My mom got sick I think. Martina was small and she [mom] had a breast removed
and I was going to come, I mean go, to see her but she passed on. I would've had
to have taken Martina with me because she was only eight months old but my
mother passed on.

Although Mona reports not taking care of elderly relatives herself, she reports that her
grandmother lived with them for “as long as she can remember,” going on to say, “All I
know is that we only had two bedrooms in our house — my mother and dad in one and my
sister, and I, and my grandma in the other one.” Mona had minimal reﬂections as to how
her experience compared to others in her generation or her family. The one reﬂection she
made was in comparison to her husband’s care. She said, “of course I'm a lot older than
my husband was. My husband was 67 or 68 and had been active all of his life.”
Summary and Reﬂections

At the time of the interviews, Martina and Mona had been engaged in co-resident
care for just over a year. Mona had ﬁve children, and although Martina was the youngest
and reported being least connected with her mother, she was the primary caregiver. Mona
had moved from her home in another state, which she still owns. She reports that the
transition was abrupt, saying she had little say in how the move happened. Martina
approached the caregiving role as a challenge, reportedly using self-care efforts
(spirituality and the ﬁve minute rule) regularly. In addition to living together, Martina
and Mona shared the home with Martina’s husband and two adult sons.

A key observation from the interviews, relative to the current arrangement, was

that Mona had difﬁculty adjusting to living in someone else’s home. Although she

67

reported getting everything she needed, in terms of necessary aspects of daily life, her
wants were not being met. Her daughter noted this dissatisfaction but possibly
misinterpreted it as a resistance to care rather than difﬁculty adjusting to a new living
context. This may be a result of established relationship dynamics (misunderstanding one
another from years of conﬂict) rather than a complication of care.

Gender socialization seemed to be another key factor for this family, at least
among the sibling sub-system. Martina noted the difference in the parent-child
relationship between she and her brother. She framed caregiving as a choice and an
acquired skill, reporting at ﬁrst that her brothers had “non-traditional” circumstances, but
ﬁnally concluding that (at least) one had chosen not to be their mother’s caregiver.

Family Three: Leda and Bernice

Caregiver

Leda, a 54-year-old married Caucasian, employed mother of three, was very
articulate and business like in our interview. She brought all of her mother’s medical
paperwork with her and referred to it three times during our visit. She was quick to say
that she does not take complete care of her mother, who lives in her own home. However,
Leda assumed management of her mother’s health care three years ago, following her
mother’s diagnoses of lymphoma.
Recipient

Bernice, a 72-year-old widowed Caucasian mother of three, was timid and
reserved during our interviews. She reported current care of her 20 year old, live-in
nephew who has cognitive limitations. As she described it, they offer assistance to one

another with various daily needs. Bernice had provided care to several family members

68

and while reﬂecting on her role as a caregiver to her grandmother, Bernice became
tearful.
Care Description & System (RQI & RQ6)

The primary assistance described by both Leda and Bernice included management
of medical paperwork, physician visits, and medication handling, and they agreed that
this care arrangement has been in place for three years. Leda has four siblings, one sister
who is involved from a distance, one brother who is uninvolved and at a distance, and
“two other siblings that live here in Lansing, that are males, and so they've kind of stayed
out of it as well.” Leda reported that She keeps all of her siblings up to date on their
mother’s care, namely sending them paperwork to document what is happening.

In addition to including herself as the primary caregiver, Leda reported that her
mother’s 20 year-old, live-in great-nephew Eli, functions as a secondary caregiver. She
reports that Eli is there daily to be sure her mother has what she needs and to “nag her
about her meds.” Leda also reports that she and Eli communicate on a regular basis to be
sure all aspects of her care are covered. It is important to note that Eli has lived with
Bernice for most of his life and that he has both received care from and provided care to
Bernice. The level of congruence was high on most accounts, outside of Leda and
Bemice’s reports of Eli’s involvement. Leda reported that Eli was a resource and partner
in caregiving, whereas Bernice reported a more unilateral relationship characterized by
her caring for him.

Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Several factors led to Leda and Bemice’s current arrangement, including an

inaccurate diagnosis by a physician three years prior, Leda’s position as the oldest child

69

and gender, and Bemice’s long-time care of her great-nephew. Leda reports her
perception of the role sibling position played in her selection as caregiver, stating:
It was always assumed, I'm the oldest. So, and, you know, I just pretty much have,
have always taken care of everything here cause. . ..I'm the oldest, and I've just
always handled everything that needed to be handled. And I've always been
closer to my mother.
When asked if she or anyone else ever challenged the rule that the oldest should provide
care, Leda commented, “Nope, you just kind of assumed the responsibility daughter)!”
Bernice discusses her daughter’s ﬂexible work schedule, as well as her perception of her
daughter’s reasoning for providing care:
She's fortunate that she can get out from work when I really need something
because otherwise who knows. She has driven me back and forth to Ann Arbor
and that was an all day session. Well, She wants to take me all the time. . ..it just,
kind of happened she lives close by. . .and She's just that type of person, she wants
to.
Leda discussed her mother’s role in decisions and talked speciﬁcally about barriers in
their communication about Bemice’s health care,
“She's afraid to report certain things to me, because she's afraid that she's going to
get put in a nursing home (pause) you know, she doesn't want to lose her
freedom.”
Leda provided the following description of how she and her mother breach conversations
about her mother’s living arrangements, speciﬁcally noting the inﬂuence of her mother’s
loyalty to Eli:
I've been on her for a couple years that I think that she really would beneﬁt, all of
her friends have died, so she doesn't have any friends anymore and. . ..I said, ‘you
know if you moved into one of those apartment complexes where they have bingo
and they have all these social things going on, I think you'd really be happy’. But
she really carries the burden of responsibility for my nephew.

Like Leda, Bernice acknowledged the role she plays in Eli’s life, reporting that her

decision to change her residence would be heavily inﬂuenced by his needs, “But I don't

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know where Eli would go. He and his family don't get along too well... So, that's part of
my decision.”
Messages / Values About Care (RQ2 & RQ4)

Leda and Bernice had a long line of care in their family. Bernice speciﬁcally had
been heavily involved with family care of elders, beginning with her grandmother.
Bernice became tearful when speaking about the importance of care in her family:

It's just that you did what you had to do. There was no one else by my mother,

my. . ..my sister died ﬁrst and then eight months later my brother died, so I was

the only one that could take care of my mother. It was more or less, you just took
over because you had to, and you wanted to. Same way with my husband, I mean

I wasn't working at that time when he got Sick so I just took over.

Leda and Bernice were aligned on their views regarding formal care. Leda reported, “I
mean I haven't had to think about putting her into a nursing home or anything, and I hope
I don't have to think about that for a while.” Whereas Bernice said, “I don't know. The
ﬁrst thing they do is start looking for a home for the old lady. Now Leda isn't looking for
a home for me to go to, but she's looking for one of these apartments”

History of Family Care & Comparison to Others’ Experiences (RQ4 & RQ5)

Bernice reported an extensive history of care involvement, having cared in some
capacity for her grandmother, mother, aunt, and husband. In each case, she was heavily
involved with daily care tasks and became tearful when reﬂecting speciﬁcally on caring
for her grandmother:

Back there, I don't know whether they did have walkers, but I know I had to hold

onto her and walk her to bathroom. And this one time, she, she kind of froze, and

she stood there and said she couldn't go, and I wasn't anywhere close to a chair
where I could pull it over for her, so, it, it was different back then when you cared

for somebody. She's a very shy person, and I to wash her and dress her and
everything. . .(beginning to cry).

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Although subtle, Bernice made reference to family care norms or expectations,
speciﬁcally in regard to family loyalty and gender, reporting:
She was 94. . ..she had a, a son-in-law who was taking care of her in a way, his,
his wife died. . ..he promised his wife that he would look after grandma. So he was
taking care of her for, my gosh, 10, 15 years. He found a place for her to, to live,
and he looked in on her all the time, which it was really unusual. . . .I used to go
down there once-in-a-while, sometimes I'd stay 4 days and take her to have her
done and things like that take her to the grocery store.
My mother got ill. I got, I was working at the post ofﬁce, I worked over 20 years
and my mother got ill, she had heart trouble, and I took a leave of absence and
went to Toledo and took care of her before she died.
Bernice added that she also cared for her husband, “In the end, my husband got, well I
don't know, he had a little bit of everything. He had heart trouble, he had a little bit of
everything. ..So I had to care for him.”
Summary and Reﬂections
Bernice was highly independent, continuing to live on her own and drive. Not
only was she able to manage her own daily needs, she was actively providing co-resident
care to her nephew Eli. Bemice’s daughter, Leda, provided speciﬁc care tasks
surrounding management of medication and health care matters. This care arrangement
was established after Bernice’s diagnosis of cancer and difﬁculty coordinating
physician’s visits and related information. In respect to the role of her daughter (as
opposed to her other four children), Bernice indicated that Leda wants to help and has the
easiest work schedule for assisting her. Although Leda agreed that Bernice is highly
independent, she reported concern about her mother’s Social isolation. She had talked

with Bernice recently about assisted living, but Bernice resisted this idea, indicating that

was just one step closer to nursing home care.

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In addition to care tasks, Bernice and Leda talked about their relationship beyond
care. They both reported maintaining social activities they have engaged in for years,
namely going to the theater. Leda alluded to the beneﬁts of this for herself but mostly
framed the positives in respect to her mother’s needs.

This case challenged the conceptualization of this study in that Bernice was a
recipient of care as well as a caregiver to a younger family member. Since Eli had lived
with Bernice most of his life, she reported a strong ﬁlial obligation to continue caring for
him. Although a physical condition keeps him from establishing his own home, it
appeared that Eli helps Bernice in certain ways. Bernice did report concern about what
would happen to Eli when she is no longer able to manage her/provide him a home.

A key observation from this family was a history of difficult elder care. Not only
had Bernice cared for her husband and mother, she also cared for her grandmother.
Bernice reported that these were difﬁcult times but at the same time rejected the idea of
nursing home care.

Family Four: Dena and Vera
Caregiver

Dena, a 49-year-old Lebanese mother of one, is the primary caregiver of her
mother. She is employed full-time and lives with her mother (Vera) and only son. She has
three siblings who have minimal involvement in the caregiving system. Dena was quick
to tell me that she is a guest in her mother’s home, even though she does provide her care.
Dena seemed scattered during our interview, and ﬁeld notes indicate that She was isolated
from community resources.

Recipient

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Vera is a widowed 88-year-old Lebanese mother of three. She was pleasant,
talkative, and forthcoming during the interviews, although she did not respond directly to
all questions. She was conﬂicted about her physical decline and the limitations she felt
came with such decline. Vera spoke of the strain that her honesty (not wanting to live
without a purpose) placed on her relationship with her daughter, Dena.

Care Description & System (RQI & RQ6)

Dena and her mother share a home and both report that care involves housework,
laundry, meal preparation, bathing, and money management. In addition to the daily tasks
provided by Dena, Meals on Wheels frequently provides lunch. Beyond that resource,
there was minimal community assistance used by the family in support of care. Dena
talked about her concern regarding the current arrangement, talking speciﬁcally about the
amount of time her mother spends alone, “When she's sitting here alone, she thinks of my
dad, and there's no way to bring him back. I have to be at work. I don't think she should
be here alone so much.” Vera was by far the most vocal participant, regarding her
dissatisfaction with her current state. She was clear that her arrangements were adequate
for her needs but also expressed displeasure in general. Her description of her current
situation was as follows:

I'm better here. I'm under one roof. It's me. I'm holding back. My daughter can't

leave and take a vacation, because I can't travel any more, so how does that make

me feel. Everyone around takes a vacation —- goes somewhere. I'm not up to it
anymore. I'm past it. The doctor went through all of this. There's nothing he can

do. What's the difference? I'm not really depressed —- I know what I'm saying. I

don't need a psychiatrist. I've talked to doctors more than once. In other words,

I'm a pain in the neck.

When asked what she would change about her current care arrangement, Vera said, “A

different social life, and close to friends. It's different here - there's no one here.”

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Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)
Several factors led to the current care arrangement, speciﬁcally the death of
Vera’s spouse combined with her failing health, advice from Vera’s friends, the meaning
of Dena’s position as a female in society and her family, along with reportedly unspoken
assumptions about care.
In the following segment, Dena talks about the role her father’s death played in the
change in Vera’s care arrangement, “He [my dad] was looking after her because She was
the frailer of the two and then he became frail. Then when he passed, we went up for
Thanksgiving and then he died in December.” In sharing her perception of what led to her
decision to move into her current arrangement, Vera stated:
My daughter said, ‘You have no one here. Who's going to help you?’ My friend
of twenty-ﬁve years — a young woman. . .. told me that I needed to go to my
daughter's and not stay up north. So I owe my decision to my daughter.
In Dena’s explanation as to why she became her mom’s caregiver, gender was
speciﬁcally identiﬁed:
I always knew I would be my mom's caregiver. There was never a question.
Always there. It just seems more appropriate for a daughter more than. . . ..my
brother and I had talked a little, you know. It's just more appropriate for a
daughter to give. To give baths and things like that.
Interestingly, Vera reﬂected a very different gender message than her daughter, stating,
“She [my mother] stayed with the boys, but she came to stay with us too. As a rule,
mothers stay with their sons.” Supporting the lack of congruence between Vera and Dena
regarding gendered expectations and the history of care between mothers and daughters,
Dena reﬂected on how she came to be her mother’s caregiver, “Hardly discussed it, never

discussed it. My mother took care of my grandmother, and I always knew that I would

take care of my mother.” Dena also talked about how various life stages/circumstances

75

have affected her role as a caregiver, “Well, I think if I had been married now, it would
have been more complicated looking after my mother. Being divorced, I've been free to
do what I wanted.”

Dena reﬂected on how she and her mother address decision-making. She seemed
to be thinking out loud when she said:

Well, I think, she should have a decision about what she wants. I'm not so sure I

always include her because I'm so scattered that I might be making decisions

without asking. Which is wrong. ...I told her that if she wants to go live
somewhere else, she can. I'll sell my house and go live somewhere else and when
the money runs out, she can ﬁgure it out. She has it in her mind that she can make
all the decisions.

Messages / Values About Care (RQ2 & RQ4)

Vera reported a long line of ﬁlial responsibility stating, “Our background is doing.
Without a big ﬂair — you just do.” Dena talked about both her and her mother’s wishes in
regard to formal care. She reﬂected on the experience of an extended family member,
who was placed in a nursing home:

We both hope that neither of us end up in a nursing home. My poor uncle, a

bachelor, took care of a farm and doggone if they didn't get him into emergency

and then into a nursing home. Poor man — I know he wanted to run away.
Vera spoke in general, and matter of factly, about the rules of family care, reporting,
“You don't leave someone alone. You don't leave anyone alone. And you don't leave
anyone without food in the house or without clothes.” In respect to monetary, speciﬁcally
government, support Vera talked about beliefs she has held throughout her life, stating:

No way would I take help from someone. Absolutely not. It offended me. It

wouldn't take much for medicine that I buy to get help. There's no way I want

help. I worked and my social security has supported me not my husband’s.

Despite reports of stress, conﬂict, and difﬁcult times, Vera reﬂected on the beneﬁts of

care I

76

I just love having my mother with me. I love my mother. We've been very close

and she's always been my best friend. Every day she's with me I consider a

blessing. I don't think she sees it that way.

History of Family Care & Comparison to Others’ Experiences (RQ4 & RQ5)

Vera was both involved in elder care across her life, and Speciﬁcally talked about
caring for her mother. This care was done in the context of Vera needed some assistance,
just following her divorce. Vera’s needs and her mother’s health decline seemed to make
a natural progression:

My mother helped me .. . .I put my children into day care. I learned to drive. It had

to be done. I worked whatever I could without pestering my mother. She had a

heart attack and was in bed for about 6 months, so I really had to take over. I

took care of my mother for ten years.

Vera reﬂected on the things that happened while caring for her mother.

I would come back and call her at home and my mother wouldn't be at home. I'd

be calling everywhere to ﬁnd her. Then when I found her, then I'd scold her, "Do

you know what you made me think? That you were lying on the ground
somewhere?" And she'd laugh. She'd say, "I had to get out."
Summary and Reﬂections

Dena and Vera had been in their current co-resident arrangement for about a year.
In the years prior, Dena had provided assistance to both her mother and her father as they
resided in an assisted living facility about 200 miles from Dena’s home. Both Dena and
Vera reported that their religion and related rituals were central to life. With respect to
decision making, Dena indicated that her mother’s role in decisions was very important.
Vera, although she brought it up and then adamantly denied it in the interview, exhibited
Signs of depression. She questioned her purpose in life and found the long days and

nights painful (both physically and emotionally). Dena was overwhelmed with her full-

time job, the management of the house purchased for the care arrangement, and general

77

care of her mother. Overall the system was strained and although she wanted support,
Dena did not have any strategy of how to address the difﬁculty.

Dena and Vera had the most involved care arrangement, with Dena assuming
approximately 95 percent of the care responsibilities. Interestingly, both Vera and Dena
were the least content, of all dyads, with their situation.

Family Five: Abigail and Beulah
Caregiver

Abigail, a 52-year-old, recently widowed, Caucasian mother of one, does not
work outside the home and is the primary caregiver to her mother, Beulah. Abigail was
soft-spoken yet open about her experiences. She reported that the current care
arrangement is very good, but not without a long and difficult history. Despite some
assistance from her aunts, Abigail reported that being the only child makes things
difficult at times. She clearly stated that visiting with residents at her mother’s retirement
home was a social beneﬁt for her.

Recipient

Beulah, an 80-year-old Caucasian widowed mother of one, lives alone in a
retirement center apartment. Beulah was pleasant to talk with and was very curious as to
why anyone would be interested in interviewing her. She said several times, “I hope I am
telling you something that is helpful”. She has two younger sisters that, in addition to her
only daughter, provide assistance. However, she reports that her daughter, Abigail, is
most involved in her care. Beulah expressed concern about her daughter, Abigail in light
of recent death of her husband.

Care Description & System (RQI & RQ6)

78

Abigail talked about the role of her aunts (Beulah’s sisters) in her mother’s care.
She noted the differences in their involvement, stating:

Well, she has two sisters that live in the area. One is barely around, she doesn't

really participate unless I need assistance and call her. You know, if there's

something that I can't do, for whatever reason, and I need someone to help me,

she will help me, but she doesn't voluntarily come around. I don't know why.
Abigail also noted her own expectations regarding her aunts’ involvement, “1 don't expect
them to do doctors and things that I can do. I'm not working so, you know, I can do that.”
Noting some of the beneﬁts of her role in care, talking Speciﬁcally about some of the
adjustments She has gone through since her husband’s death, Abigail stated, “It's easier
for me to do a lot of her things that I'm used to doing than some of this stuff of my own
that I'm not used to doing.”

Beulah talked about some of the social limitations of her current care
arrangement, stating that she does not get to spend the time with her daughter that she
would like, “So she really doesn't sit and visit with me, unless we go out to lunch or
something like that, you know I don't get much chance to visit with her.”

Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Abigail laughed while pondering my question about how she came to be her
mother’s caregiver. It seemed that her status as an only child elected her automatically,
but as she Spoke, she seemed to reach another conclusion, “there's not much choice
(laughter). . .pretty much, just, you know, I'm the one, and, and I guess, that I, you know, I
guess you can always have the choice to still not to do it, but I wouldn't do that.”

Abigail and Beulah talked at length about their decision making process,

revealing some distinct perception differences as to who made decisions about the current

care arrangement. Abigail reported that her mother made the decisions, right down to the

79

very building she is in at the retirement home. On the other hand, Beulah reported that
her daughter took over the decision making. Abigail said:
She just didn't want to do anything anymore, have any worries, and She wanted to
have somebody around all the time, which was a good choice I felt. ...and this is
where she wanted to come, this particular building.
I Beulah described the following process:
I was having an awful time, they were trying to ﬁgure out what to do about me,
and you know, and. ...I couldn't do anything, for myself, I wasn't eating and I
wasn't taking my medicine. . .So, she looked into the nursing home, or the,
retirement home and I didn't get, I didn’t look into them or anything. She just took
right over and did it all and they decided that this was the best one and so that's
how come I come here.
Beulah alluded to her preferred decision making process, where others will anticipate
what she needs and then do it for her, without her asking:
That really made me feel good, to come home and have somebody do that for
you. You didn't have to ask them you know because I don't like to ask... I don't
want 'em to think I'm taking advantage of them.
Abigail talked about her mother’s decision-making ability, her tendency to defer to her
mother at times, and speciﬁc examples where her mother’s decision-making process
made things easier on Abigail:
She didn't want to drive again, so that made it easy for me to not have to discuss
whether or not she should drive anymore, and so I was kind of glad that I didn't
have to ask for her car keys either.
In regard to her mother’s overall decision making, Abigail said, “She's, she's
pretty sound of mind. I mean, as far as usually, decision making” adding that She deferred
to her mother on one major decision, “She only sold [her house] 2 years ago, but. ...we

just let her make the decision when she wanted to do that.”

Messages / Values About Care (RQ2 & RQ4)

80

This family shared very little information about Speciﬁc care messages or values.
However, Abigail noted the changes in caregiving roles over time stating, “I think
eventually we're all going to need some kind of help, and, just hope, you know, that I can
be there as much as possible when She needs things”.

History of Family Care & Comparison to Others’ Experiences (RQ4 & RQ5)

Beulah reported that although her parents had monetary resources and died within
three months of one another, they both lived to be 94 and needed some level of care, “my
brother really handled most of it, but it, the way it was done, everything was divided up
evenly. ...we just really did a good job.” Beulah describes the role her father played in the
care of his step-mother, noting relationship difﬁculties that preceded, but did not hinder,
caregiving:

The step-mother was never good to my dad. In, in-fact after she married my

grandpa, she wouldn't even allow him to live with them, so, and then to turn

around and my dad had to ﬁnish taking care of her so that was quite a thing, you

know that my dad did.

Beulah’s family care history seems to reﬂect an anomaly in regard to gender. In both of
the above examples, males were the primary caregivers to elderly parents. Although this
is not unheard of, her father’s care of his step-mother is especially unique.

Beulah reﬂected on the differences between she and her sisters regarding care, “as
far as a my sisters, they've got husbands yet to help them.” In one of very few statements
comparing her experiences to others, Beulah said, “Sometimes there's so much jealousy
between families that they have, they run into trouble but we don't. We never had any

trouble.”

Summary and Reﬂections

81

Abigail, an only child, had been providing care to her mother for about three
years. She assisted her mother with tasks such as money management, grocery shopping,
and laundry. Both Abigail and Beulah reported care assistance by Beulah’s sister but
mostly in the social realm (i.e. taking her out to dinner). Abigail spoke about both the
beneﬁts and detriments of providing care to her mother. She reported that spending time
at the center and knowing her mother had what she needed were both beneﬁts to her
personally. Beulah reported deferring decisions to her daughter, saying that it was just
easier and time to do so. Beulah reported wanting more social time with her daughter.

A number of things stand out about Abigail and Beulah. First, when asked how
long She had been assisting her mother, Abigail replied, “28 years — ever since my dad
died.” However, I was aware that Beulah had been in the assisted living facility for three
years. It is likely that when Beulah went into the center, Abigail’s care tasks decreased
somewhat, as prior to that time Beulah owned her own home. However, I had a glimpse
of what Abigail was talking about as She described her mother’s health history as plagued
with emergency room and rehabilitation visits.

Interestingly, Abigail and Beulah reported very different perceptions about what
the establishment of the care arrangement entailed. Abigail reported that her mother led
the effort, even selecting the very building she lives in. In contrast, Beulah reported that
Abigail made all of the arrangements, speciﬁcally saying that She had never visited the
center before moving in. Despite the lack of congruence about the conditions under
which current care arrangement was established, both Abigail and Beulah were content in

their roles. This contentment may have been related to the element of reciprocity.

82

Abigail had recently lost her husband, she reported a sense of isolation, and
demonstrated normative bereavement. Her role as caregiver seemed to offer a great deal,
as she talked about enjoying her visits to the center and reporting that it is easier to take
care of her mother’s business than her own. Furthermore, Beulah reported a strong sense
of empathy for her daughter, indicating that she had been through a similar loss. It was
interesting to witness the caregiver role as a source of enjoyment or comfort, rather than
an added stress during an already difﬁcult time.

Family Six: Carrie and Deborah
Caregiver

Carrie is a 36-year-old, single, Caucasian mother of two, whose sources of
income include in-home day care and compensation she receives from the state to
provide care to her mother. Carrie lives with her mother, Deborah, her two young
children, and her partner in the home in which her mother resided for many years. Carrie
has two sisters who help with medical emergencies but not on the “everyday stuff.”
Carrie reports providing co-resident care for the past 19 months.

Recipient

Deborah is a 76-year-old mother of three, who lives with her youngest daughter,
Carrie, her two grandchildren, and her daughter’s partner. Deborah has Parkinson’s
disease and is recovering from a recent hip replacement (three months prior to the
interview). She was extremely soft spoken but alert as she spoke about the care She
receives from and provides for her daughter. For six years, Deborah had been the primary
caretaker of her husband who had Alzheimer’s disease.

Care Description & System (RQI & RQ6)

83

This family’s system included Carrie as the primary caregiver, with her two
sisters playing important but very different roles than Carrie. This case was unique for
several reasons — at 36, Carrie was the youngest caregiver in this study. Furthermore,
Carrie and Deborah were one of two dyads that resided in the recipient’s home. Finally,
this situation was unique in that Carrie received payment, from the Tri-County Ofﬁce on
Aging, to care for her mother. In the following statement, Carrie describes the roles she
and her sisters play in their mother’s care:

Those sisters have power of attorney over her; they make the ﬁnal decisions on

my mom; they need to know what's going on. The other thing is, they're older —

like 13 and 16 years older than me. So, I'm just the baby.
Carrie emphasized how different her role is from her sisters. With a contentious tone,
Carrie described how her sisters change when their mother is in the hospital, “They're up
there saying, ‘Well, mom's not with it today.’ And I say to them, ‘Well, girls, she has her
good days and she has her bad days. She's never going to be perfect, you know?”’ Carrie
talked about how, because she has a child, it is difﬁcult to be at the hospital all the time.
She seemed frustrated when she explained that she is the one who is there every day, but
the doctors and nurses do not see that when her mother is hospitalized.

In contrast, Deborah described a balanced care system, including all three of her
daughters in the following statement:

Carrie stays with me to help me and then one of them takes care of all the bills

and the other takes care of all the doctor's appointments and all that kind of stuff.

Kind of spread around. If I have to go to the doctor's, they all go with me.

Deborah said that she likes her current care arrangement, reporting, “Well, I like it,

because it gave me a chance to stay home.”

84

Carrie, having done in-home day care, had difﬁculty with the conﬂicting roles of
caregiver and child care provider. In the following statement, she describes her line of
thinking and conclusions about resources and her role:

I couldn't get a job because I have to be with her, you know? I heard that you

could get paid to be home with their families, so — they had an aide coming in all

the time. And I'm thinking, ‘Why can't — if I have to be here -— this aide is
supposed to be giving me this 2-hour break. I have to be here anyway, why
shouldn't I be the one getting paid for this?’

Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Several factors led to Carrie and Deborah’s current arrangement: Deborah’s fall
resulting in a broken hip, her diagnosis of Parkinson’s, the timing of Carrie’s lease ending
and need for a new residence, and Carrie’s desire to keep her mother from living in a
nursing home. In the following statement, Carrie addresses her desire to protect her
mother from going into a nursing home:

I said to my sister, ‘What if I don't want to live here with Mom?’ [she said] ‘Well,

we would make other arrangements for Mom and she would probably have to go

to a home or something’. I can't do that. . ..I'm the one who made the decision to

be there all the time. Even though I was living on the other side of the state, I

decided to come home and live. . ..If I had the money to go out and ﬁnd a place to

live, I could, but then Mom would have to go back to the nursing home. And I

don't want that.

The following two statements reﬂect Deborah’s role in decisions. In discussing the
decision to put an older sibling as power of attorney, Carrie said:

I don't think she asked any of us. She just put her down and we didn't talk about it.

Apparently if Mom was to have an attack and wanted to be left to die, and I'm

like, ‘You know, well, you can't just pull the plug.’ And I say, ‘Can't we make

that decision when that comes, why do we have to make it now?’ I spoke up.
Deborah was very clear about what role she sees herself having in decisions, saying, “I

make decisions. We discuss. ...But I feel I have a say in those decisions.”

Messages / Values About Care and History of Family Care (RQ2, RQ3, & RQ4)

85

The primary message from both Carrie and Deborah was the strong desire to
avoid nursing homes as long as possible. Not only did Deborah talk about her fear of
nursing homes, she also reﬂected a similar value in the care of others, namely her
husband and her father. Carrie was closely aligned with her mother regarding nursing
care and seemed to have made some sacriﬁces in her own life, just so her mother would
not be placed in a nursing home. Carrie said:

I don't like her to be in a nursing home, but in some way when She was in the

nursing home this winter, I found that I was coming and going and had some

freedom, and then all of a sudden she came home and I didn't like it. . ..I don't
want to take care of her — I get pretty down and depressed about it.
A Similar value is reﬂected in the story of Deborah’s father. She reported:

He [my dad] could go home as long as someone was there that could help him.

His wife done most of it, but we all helped as we could, and I at that time and

point I lived here, so, I tried to get up every-other weekend and, and help take

care of him. ...clean the house, do dishes, do Shopping.
In the six years Deborah cared for her husband, she avoided placing him in a nursing
home, even putting herself in danger as a result. “The doctor wanted to put him in a
nursing home and I said I just can't do it, a day will come when I have to but I can't do it
right now.” Alzheimer’s disease had affected her husband to the point where he was
physically banning her. Deborah reluctantly made the decision to place him in a nursing
home, and he died one week later:

I took care of him. It was bad because he was, mind, a lot of it was gone you

know, he didn't know one day to the next and you'd feed him lunch, or, I

remember feeding him lunch one day and I had him in here in a hospital bed and

came back in to pick up the dishes and he just started cussing at me, and, ‘My

God, don't you ever feed anybody around here?’ and he just, I didn't even get out

of the room yet, with his dishes, but things like that, and he, he just, he'd runaway,

he ran away once, and we combed the neighborhood, and the neighbors helped,
and we ﬁnally found him at a little restaurant up here (inaudible) oh, there was

some moments. I didn't think I'd make it through all that. I think that bothered me
most, I couldn't ever get away from the house unless someone was here.

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Deborah talked about visiting her husband in the nursing home and She said that he had a
moment where he looked at her, remembering who she was and asked, "why did you put
me in here?" Deborah told me that she started to cry, showing him her black-and-blue
arm where and said "Carl, I couldn't take care of you anymore". She reported that he
looked at her and said, crying, "I had no idea that I had did that to you, I'm so sorry," and
a week later he died. She became tearful in talking about the difﬁculty around the
decision to place him in a nursing home. She also articulated a sense of pride in the
amount of time she took care of him.
Summary and Reﬂections

Carrie and Deborah had been engaged in co-resident care for just less than a year.
This arrangement was reciprocal in that both Carrie and Deborah beneﬁted from the
shared residence. Deborah was able to stay in her home and more importantly avoid
nursing home care. Carrie was able to avoid eviction as well as help her mother evade
nursing home placement. Although Carrie was Deborah’s primary caregiver, her two
older sisters helped their mother in more formal ways (e. g. power of attorney). Decisions
about Deborah’s care involved all three daughters and Deborah. Carrie reported a sense
of frustration with her sisters’ sporadic involvement. Finally, Deborah had engaged in
care of her husband for six years. Her involvement was intense, and She was proud of the
role she played in his care.

Since Deborah has Parkinson’s disease, her needs may have seemed more
noticeable or tangible than other recipients. In my opinion, Deborah’s needs included at

least an obstacle free ﬂoor and secure chairs. Her home offered neither and in addition,

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was visibly dirty. Field notes indicate that care needed did not seem possible, given the
current arrangement.

The most notable message that emerged from interviews with Carrie and Deborah
was the strong desire to avoid nursing home care. Not only did Deborah report
appreciation for being able to stay in her home, Carrie stated that her primary motivation
for moving in with her mother was to keep her out of a nursing home. This value
appeared to Span across generations, with Deborah reportedly providing six years of
intense care to her husband, all to avoid placing him in a nursing home.

Carrie, the youngest of all caregivers, talked about her employment difficulties
relative to her caregiving role. She reported that one small solution was receiving support
from the local Area Agency on Aging but also indicating that this resource did not match
her efforts.

Family Seven: Sandy and Anna
Caregiver

Sandy is a 51-year-old Caucasian, employed, mother of two adult children. Sandy
was eager to visit about her caregiving role, and since she is new the role (11 months),
she was interested in ways to connect with other caregivers. She has three Siblings, who
are involved in various ways with her mother’s care, but not to the extent that Sandy is.
Recipient

Anna, an 82-year-old, widowed, mother of four recently moved to Michigan to be
near her daughter, Sandy. Anna was extremely positive about her new arrangement and
spoke excitedly about her residence and the activities there. She had minimal reﬂections

about family care as she spent much of her adult life living outside of the United States.

88

However, She did provide care to her mother-in-law after she moved in with Anna and
her family. She also reﬂected on her role as a peripheral member of caregiving systems
for her parents and an elderly aunt.

Care Description & System (RQI & RQ6)

Sandy is the primary caregiver, and although she is the most involved, many of
Anna’s needs are attended to by the staff and the retirement home. Sandy describes a
common occurrence, which characterizes her role as caregiver:

She feels cared for and secure there. It gets boring. She feels conﬁned. And, and,

I'll call her up once-in-a-while and I'll say ‘do you want to come home’ and she'll

say ‘Yes (very emphatically), (makes exasperated sound) I need some fresh air.’ I

say ‘okay, I'm coming to get you’

Anna reported being content in her apartment and with her current care but said, “I wish,
that my boys were able to come and visit. They, they just can't. They're both working and
can't get away and they have family to take care of, and so, I, I miss seeing my other
kids.”

Sandy was very concise about how she approaches caring for her mother, “I just
simply take care of her, her needs, whatever she needs or wants.” Sandy was very proud
of her role and her record of attending to things over the past year without calling on her
siblings, “I can call on them, but I haven't yet, in a year's time. . .. I was determined to
prove to my siblings that this was going to work out just ﬁne.”

Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Three primary factors led to the current care arrangement — the death of Anna’s

husband/Sandy’s father, Sandy’s state of residence, and her socialization and consequent

desire to provide care. Sandy reported that decisions leading to this arrangement were

made several years ago, not only talking about her role but also her older brother’s

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position in the family, “Because of my nature, mom and dad made me the health care
advocate officially, and they Signed papers, that I would be the health care advocate for
the family.” adding “He's [my brother’s] the power of attorney because he's the oldest.”

Sandy insightfully acknowledged her socialization to care, noting that the history
of missions work in her family and her gender were key factors. She talks about her role
over time as she comments, “Well, whenever there has been a need in the family, I'm the
one to provide the solution. I never hesitate to provide the solution, because that has been
what I've learned.”

Messages / Values About Care (RQ2 & RQ4)

One strong message that emerged was the theme of giving back. Sandy reported
that this message was communicated through actions over time, and she had adopted this
value. She talked speciﬁcally about her desire to give back to her mom while also
reﬂecting on how her mother gave to the children and her spouse:

when we, the kids weren't around to take care of anymore then She turned and

took care of them, and he became very used to being taken care of, all his life, she

feed him, put his pills down when he needed to take 'em, absolutely took care of
him to the nth degree, and now she has no one to look after except herself.
Sandy reported checking in with her mother about the role she plays:
I'll walk over to her lean over her and give her a kiss and say, ‘is your daughter
being too ﬁrssy for you’, and she'll say ‘I like it, I like it, it's okay’ and I say to
her, ‘you know, we've never had a chance, you've always taken care of us and if
you don't mind - I don't mind’ and she said, ‘I know you don't mind.’ She can tell
that I don't mind, because I don't.
Although Sandy provides a signiﬁcant amount of emotional and functional support, Anna
reported that, “They've [my children] always said if need be, they would always send

money.” It is important to note that Anna knows this resource is available, despite

Sandy’s wish not to use it unless absolutely necessary.

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History of Family Care & Comparison to Others ' Experiences (RQ4 & R Q5)

Anna reported minimal involvement in family care, struggling to think of
examples where elderly family members had been cared for by younger generations.
However, as she reﬂected, She described her involvement in both her mother’s and her
mother-in-law’s care:

I can remember Shortly after we were married, my mother came down with what

must have been either very bad cold, but it was really more like pneumonia, and I

was so worried about her that I ﬁnally got on a Greyhound bus in Massachusetts,

and went back to Michigan and my dad picked me up and took me home and I

stayed for two weeks.

I never actually had an adult member live with me except for my husband's

mother, after his father died, came out [to the country we were living] for a year

to live with us. ...She didn't have a good heart. . ..I helped her wash her hair for
instance, because she couldn't do that.
Anna shared other family care arrangements, indicating that her lack of involvement was
due primarily to geography (living in another country):

My dad was doing almost everything for my mother because she had Alzheimer's,

and she couldn't cook, he had to hide all the knives, hide the salt or he couldn't eat

what she tried to cook, it was quite a task for him.
When her father needed assistance, Anna’s brother became the primary caregiver, “He
continued living in that house until my brother persuaded him that he had to sellout and
come and live in a retirement community near him.”
Summary and Reﬂections

Sandy was one of four children and one of two daughters. When Anna’s husband
passed and the family was concerned about her needs, Sandy was eager to assist her
mother. Sandy’s role in her mother’s care was not a surprise to anyone, given that the

siblings had discussed care arrangements prior to the need. Anna’s care involves money

management and medical assistance (e. g. medications and physician visits). Both Anna

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and Sandy reported that spending time together was important. Sandy reported a sense of
role reversal and reciprocity, wanting to give back to her mother.

Sandy and Anna, although relatively new to the current care arrangement,
appeared comfortable in their roles. Sandy was especially pleased with the level of care
she provides her mother, without the support of her siblings. She reported feeling
strongly about not asking for their help, which I felt was unique compared to other
families. Whereas some siblings quarrel over individuals doing their part, Sandy was
reveling in being able to do it alone.

Another key message that emerged was the relationship that Sandy and Anna
have, beyond the care arrangement. Both talked about enjoying their time together, citing
their weekends at Sandy’s home as a source of enjoyment. Furthermore, Sandy reported
that her mother had cared for her and other family members, noting it was her turn to
receive care.

Family Eight: Idah and Rita
Caregiver

Idah is a widowed/remarried 68-year-old, Caucasian mother of two adult children.
Idah has been retired for two years, and although she spoke of her own health concerns,
she appeared healthy and much younger than her chronological age. She reports that
although she has three siblings, she is the primary caregiver of her mother, Rita. Idah
reported frequently partnering with her own daughter in the care of her mother. Idah was
articulate and enthusiastic about sharing her experiences, seeming very content in her role
as caregiver.

Recipient

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Rita is a 92-year-old, Caucasian mother of three. She has been receiving care
from her youngest daughter for 21 months, after moving from her home state of 48 years.
Rita was alert and very easy to talk with, despite her difficulty hearing me initially. She
answered questions directly and clearly, smiling a lot. Rita reported minimal activity with
individuals at the center, choosing to read and watch TV instead.

Care Description & System (RQI & RQ6)

Idah and Rita gave similar descriptions of the care system, indicating that Idah
with support from her daughter (Rita’s granddaughter) is the primary caretaker. Rita
indicated that in addition to the support she receives from Idah, she utilizes some services
at the retirement home (e.g. cleaning service). This family was one of few that overtly
addressed the issue of monetary costs of care. Idah reported that, if the current
arrangement continues, her mother’s savings would be gone in approximately 18 months.
In an effort to make this money last as long as possible, Idah reported supplementing that
savings by buying her mother’s groceries. She indicated that spending a little here and
there is easier than paying for all of her mother’s care in the future. Although Rita did not
express a concern about her money running out, she did indicate that her other daughter
provides ﬁnancial support in leiu of other types of care:

My other daughter up north in, in Newago has emphysema very, very bad. So, the

only reason she can't do (sic) is because of that. But, she does send me a check

about once a month, so that helps too (chuckles). Her part of it you know.
Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Several factors contributed to the existing arrangement for Rita, Idah’s good

health (compared to her sister), Rita’s status as a widow and declining health, geography,

93

lifestyle factors of Idah’s brother, and Idah’s history of providing care. In the following
statement, Idah reﬂects on the process that led to her mother coming to be near her:
She started falling, it was two, three times She fell. ...and just little things. We, we
could see what was coming, and my brother lived two hours away from her, but
he didn't get up there as often as I got there from Michigan, and my brother's quite
a bit younger than I am, he has three, well right now three college-aged children,
they're all three in college.
After deciding that something needed to change, Idah reports what the next steps
entailed, “My daughter and my husband kept saying, you know, you're going to have to
move her here. So ﬁnally my daughter and I just started looking around without saying
anything to my mother.” After making the decision that her mother should come to
Michigan, Idah talked to her siblings and other family members:
I just told them we were coming down and, and that's what we had to do. Take the
bull by the horns and go with it. And they all agreed, you know, they didn't, they
knew it had to be done too, so. We had no problem with anybody.
Idah reﬂects on what the experience of adjusting to the current care arrangement may
have been like for her mother:
It was hard for her to come but I think she just made up her mind, and I told her
that we could look for a place down there and my brother could be the caregiver,
but his wife has elderly parents to, so she, I think knew, or she would have to
come back up to Michigan.
In respect to decisions, both Idah and Rita reported collaborating. Idah noted a change in
her mother’s involvement, surprised by how often her mother defers to her:
Her and I talk about anything that, that involves her. And, uh, she'll say ‘what do
you think’, (chuckles) she's always made her own decisions. In fact, when my
daughter and I and my sister moved her up here, we thought she would be a little
more independent than she is. She really relies on me now, to do everything. . ..I
don't know, I guess because I kind of took over some things then, she’s just really

more dependent on me than she was. But, but I discuss anything with her.

Rita noted, “I think it's 50-50 really. You know what I mean? We do all the, talk things

94

over, and decide whether we Should or shouldn't, you know.” Rita also reported making
a key decision about her current arrangement, “I made up my mind to be satisﬁed
regardless, you know, of anything, and I, I'm happy here though”

Messages / Values About Care (RQ2 & RQ4)

Both Idah and Rita were very matter of fact about family care values. Although
neither of them talked at length about this topic, the following two segments capture key
messages in their family:

Well, it's, it's just one of those things, to me, you just naturally do it. People need

it, and that, you just naturally do it. It's like Idah doing it for me. Of course, my

other daughter would to, if she was able to.
Idah reﬂected on her role as a caregiver over time:

Somehow, through my life I've been everybody's caregiver (laughter).... my

husband and. . ..were caregivers to his mother, his Sister helped out to though. My

ﬁrst husband, who's deceased, he had a. . .my kids always called her grandma, and

She was like an aunt, but she was really no relation, she raised my ﬁrst husband.

when She got elderly somehow I took care of her and her aunt. . .I don't know how
I get in to this (laughter). Somehow I'm always the one that's around and able to, I

guess.
History of Family Care & Comparison to Others ’ Experiences (RQ4 & RQ5)

Rita and Idah both talked about the role of family care over time. As previously
mentioned, Idah stated she had been involved in the care of several elderly family
members. Idah also reported that her mother cared for both her husband and her father.
As Idah reﬂected on her mother’s role in the care of her grandfather, she seemed to
hypothesize why her mother didn’t ask for co-resident care, “She had my grandpa for
years, he lived with us, and so She never really mentioned coming here and staying.”

Rita didn’t talk much about her role as a caregiver to her father but shared some

information about the decade of care she provided to her husband. Rita said:

95

He had Alzheimer's for 10 years. ...I took care of him all on my own, yeah. 36
hours a day ....you know they didn't have any support groups then. . .the only
place I could leave him was a place that's down in town it cost me $10 an hour
and I used to leave him there if I had to go to the dentist or things, when he got
bad. . ..Outside of that, that was all the help I ever had.

This role was not questioned, likely due to Rita’s belief that care of the elderly is “just

something you do” and that it comes “naturally”.

Summary and Reﬂections

Rita and Idah had not been in their current arrangement long. However, Idah had
been assisting her mother from a distance for several years (ﬂying back and forth
frequently). Although Rita lives in an assisted living facility, Idah tries to do all she can
to eliminate added expenses, assisting her with bathing, money management, and medical
appointments. Idah noted that if her mother continues to live at this level of need, she
will outlive her resources in 18 months. Idah was concerned about her mother’s lack of
social involvement at the center. However, Rita reports maintaining her normal activities
(e. g. playing with her cat and watching W). The decision making system included Rita
but not necessarily at her request. She reported a level of contentment in having Idah
take over.

Rita and Idah were the oldest informants in their respective roles (recipient and
caregiver). However, the care arrangement was more recently established than in other
dyads. Key observations included ﬁnancial strain, multigenerational support, and a
signiﬁcant shift in the process of making decisions. Both Idah and Rita talked about the
limited monetary resources available for Rita’s care, indicating that her money will “run

out” in 18 months. Idah talked about supplementing her mother’s ﬁnancial resources by

buying things “here and there”, in hopes of extending her ﬁnancial options.

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Another key element for this care system was the involvement of Idah’s daughter
/ Rita’s granddaughter, Hannah. Both Idah and Rita were clear that Hannah is heavily
involved in her grandmother’s care, namely in supporting Idah. This example illustrates
the transmission of family care values in more tangible ways than in other dyads. Finally,
Rita was very clear about her decision to be happy with the current arrangement. When
asked what role she plays in decisions about her care she felt an adequate amount of
involvement but added that the most important decision was choosing to make the best of
it.

Family Nine: Jana & Tina

Caregiver

Jana is a 51 year-old, single, African-American mother of three adult children.
Jana is also a grandmother of three. She works full time in the human service ﬁeld and
articulated both a personal and professional interest in this project. During our visit, she
appeared to be responding much more like a professional in the ﬁeld, rather than from a
daughter’s standpoint. It was clear to me that her training was an asset to her family and
speciﬁcally to her mother. However, I found it difﬁcult to ascertain the depth of her
experiences as a daughter.
Recipient

Tina is a 72 year-old, widowed, African-American mother of four, grandmother,
and great-grandmother. Tina described a number of recent transitions, some resulting
from declining health and others for familial reasons. The most notable adjustment came
after her experience of being ﬁnancially exploited by a family member. Before moving to

the retirement center where she currently resides, she was living in a sub-standard

97

apartment with this family member. She reports that she was Simply “trying to help this
person”.

Tina was candid in our interview, talking about how she leans on her three
children for different things. She postulates that her daughter, Jana is most helpﬁrl with
the things she needs but that her “fun time” comes when her other daughter visits. Tina is
very active in center activities and highly social with other residents. She takes great
pride in knowing everyone and helping them in some way.

Care Description & System (RQI & RQ6)

Jana and Tina described similar care tasks, including some meal preparation and
medication management, but primarily overseeing ﬁnances. Although Tina has three
children, she and Jana agree that Jana is her primary caregiver. In the following
statement, Tina talks about the unique relationship she has with her other daughter:

I have another daughter (Dava) that comes from out of town. She lives in Georgia,

and She really comes up to see about me almost every month, and so when She

does, she ﬂies up, she has to rent a car, she'll take me out, we'll go shopping, we'll
go to movies, we'll go to dinner. ...that's when I have my fun.
Jana agrees that her mother’s time with Dava is much different than the time she Spends
with her. Jana reported having to “clean up” after one of Dava’s visits claiming to hold
the role of stickler in regard to her mother’s health.
Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Several factors precipitated the current care arrangement, namely Jana’s ﬁnancial
and emotional security, formal education related to the elderly, sibling position and
gender, along with her own daughter’s role in Tina’s ﬁnancial exploitation. Tina’s history

of depression and tendency to cycle in and out of sub-standard living arrangements also

seemed to contribute to Jana’s hyper vigilance.

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When asked if anyone else assists her, Tina said:

Not really. . ..he's [my son’s] got to be working towards retirement. Now Dava has

really given up a lot to help me. But you know, sometime her and Jana, because

Jana'll say ‘you could take care of a little bit more’ and I tell Jana she can't, she's

not making the money your making, you know, and I said, ‘you can of get by with

a little more,’ but see I had a little problem that's why they have to use some

money.

This statement supports the idea that Tina sees Jana as most ﬁt to provide her care. Jana
expressed frustration and struggled to understand why her siblings are so quick to
abdicate their responsibility:

I was always accommodating everybody else's needs and wants, you know. . .. so,

if anybody should have issues it would be me. But, you know, you've got to put

that aside because She's got needs. . . .somebody's got to tend to them. ...and he [my
brother] has four kids and his wife helps my mom but you know, she’s busy. . ..
they don't have to deal with it. ...He's in grad school right now so, you know, he's
busy, well we all are busy.
Jana compared her involvement speciﬁcally to her brother’s, “so for [him] to say, ‘well,
you know, when I get around to it,’ what if I say, ‘when I get around to it’? She'd be up a
creek.”

Jana reported her hopes for her mother’s involvement in decisions, stating, “I'm
trying to give her the dignity of maintaining as much control over situations as possible
and she's choking me. And so, like I said, she went and spent the last dime, the last dime,
has not one penny.” noting that it is difﬁcult to step back after her mother makes poor
choices. Jana also acknowledged her role in decisions, stating, “I moved her here,
because I got tired of ﬂying, to her home for the emergency of the week or the month.”
Jana also reﬂected another element of self care in talking about the consideration of co-

resident care, “I knew that she could not live with me. It just wouldn't wor ” adding that

their relationship would have suffered.

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Messages / Values About Care (RQ2 & RQ4)

There were two primary messages about care in this family, the consistency of
daughters providing care to their mothers and the level of conﬂict between siblings. Both
Jana and Tina had contributed to the care of their mothers. Both valued care of others,
pursuing professions that served the elderly or the unwell, and in both cases their training
helped them provide care. However, the difference between them is that Tina did not
have any siblings (her only brother died at a very young age), whereas Jana has a brother
and two Sisters. Jana reﬂects a primary message of conﬂict between she and her siblings
in the following statement, “I'm getting resistance from siblings that are critiquing from
miles away. ...She praises them to no end. That's what really gets to me. She praises them
to no end and they don't do anything!”

History of Family Care & Comparison to Others ’ Experiences (RQ4 & RQ5)

Tina reported losing her father at a very young age but maintaining a close
relationship with her mother until her death. When her mother needed additional care,
Tina reports having moved her into a nearby apartment and providing her with daily
assistance (e. g. grocery shopping, meal preparation, laundry):

I had lost my husband, so. . ..I had my own apartment with my own children, but I

would go over and help my mother. I didn't have a car but I would see that She

had her food, her groceries, and then, like I said she was of a different religion, so

I had one of the ladies to come in with her and do cleaning, but she always says

‘nobody does things like you do’, you know. So I would cook for her and do

whatever I could for her, you know, buy her clothing that she needed and

anything like that.

Interestingly, just as Jana’s profession is closely aligned with the support She

provides to Tina, Tina’s training as a nurse aided her in the care she provided to her

mother. Tina described how the care of her mother overlapped with her schooling:

100

I didn't ﬁnish because my mother came down with diabetes and I didn't know she
was a diabetic, and she had cancer of the pancreas, so I went, I stopped to take
care of her and my doctor said, my mother's doctor said, ‘Tina, are you going to
ﬁnish school’. I said, ‘no I was only going to help her so She'd have money’. I
said, ‘I'm getting a good income,’ I said ‘I don't need the money’ at that time I
didn't need it. I said, ‘I only wanted to help her, so She could have things’ and uh,
he said, my, my average was 4.0, he said, well, you know, he says ‘you may not
get your degree, but you have already proved yourself to be a nurse’ you know.
And I said, ‘well that may be good in nursing stuff, but I have to see about her
ﬁrst’ and she didn't last too long.
Both Jana and Tina were proud of their professional knowledge and how it assisted them
in their caregiving roles. Tina even acknowledged her daughter’s professional
knowledge, reporting, “she's taught all my children different things, you know.”
Summary and Reﬂections
Jana and Tina had been in the current care arrangement for about 18 months. Jana
assists her mother primarily with money management, taking care of all of ﬁnances.
Tina, a diabetic, also receives assistance from Jana with her medical care. The current
care arrangement was implemented out of necessity for Tina’s health and safety.
Although Jana reports that her mother could likely live alone, her decisions warranted
concern. In addition to this support, Jana seems to be hyper vigilant about Tina’s social
activities, reporting that Tina’s other daughter can disrupt the consistency in her life.
Jana reported consistent conﬂict with her siblings with regard to their mother’s care,
often wondering what would happen if she “stepped down” from the caregiving role.
Jana was the most vocal of all the participants about her level of frustration with
the caregiving role, reporting that the distribution of care tasks was inequitable between

her and her siblings. A primary factor leading to the current care arrangement was the

recent ﬁnancial exploitation Tina experienced. Although Jana did not reveal who

101

exploited her mother, Tina revealed that it was Jana’s daughter. I suspect that the level of
care provided by Jana is partially a result of rectifying what her daughter had done.

Finally, this dyad was unique in that the recipient’s mental health was a factor in
her care. Given Tina’s diagnosis of manic depression many years ago, she has had
mental health resources in the community. These resources have continued into her
current care arrangement, and both Tina and Jana report that these resources are
invaluable.

Family Ten: Dora & Donna

Caregiver

Dora is a 54 year-old, married, Caucasian mother of two and grandmother of two.
Dora is a health care professional and works long, concentrated shifts. She reported some
professional knowledge of the caregiving process, but She remained primarily in the role
of daughter during our interview. Dora is an only child and reports never thinking twice
about her role in assisting her mother. She was clear that care was just something that her
family offered to one another, something that Dora learned Speciﬁcally from her maternal
grandmother.
Recipient

Donna is newly widowed, Caucasian, and had turned 80 just before our
interviews. She reported receiving minimal assistance from her daughter, talking more
about the time they spend together as enjoyment. She reports that her current arrangement
was needed because of her late husband’s declining health, not her own. She appeared to
be independent, active within her retirement home community, and still drives her own

car.

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Care Description & System (RQI & RQ6)

Dora reports assisting her mother with some personal care tasks (e. g. bathing),
money management, and social time. Although Donna did not perceive herself receiving
assistance from her daughter, she did tell me that Dora helps her clean and manage her
“business.” Given this perception, the women’s reports of the care arrangement were
fairly incongruent.

Ecological Factors Contributing to Care & Decision Making (RQ2 & RQ3)

Several factors inﬂuenced the details of Donna’s current care arrangement: her
late husband’s declining health and her “near death” experience, Dora’s position as an
only child and relationship with her grandmother, and the recent death of Donna’s
husband. Although Donna had difﬁculty describing how her daughter helps her, she did
acknowledge that when She moved into the assisted living facility it was a result of both
her and her husband’s declining health. Although her husband recently died, at the time
they moved into the center Donna experienced a near death experience. She reports that
her own health concerns and her temporary inability to care for her husband, necessitated
the move and their daughter’s assistance. She said,

I wasn't physically capable of doing it anymore and the house was becoming a big

burden to keep clean. We just, so I (pause) one day Dora and I, I had talked to

Tim [my husband] about going into an independent living situation, and where we

could have meals prepared for us and this just ﬁt the bill.

Dora reported being very close to her grandmother, who taught her the value of
caring for others. Dora said, “I loved her so much and when she needed care, I wanted to

help because of what she taught me and showed me, to love other people.”

Messages / Values About Care (RQ2 & RQ4)

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Both Donna and Dora talked about the natural act of caring for family members.
Donna said, “It was just, it, it just seemed natural, and maybe that's why it's so hard to
recall.” Dora became tearful as she talked about the love in the family, she said, “mom
did a great job with dad, you know, helping him and taking care of things. . .my daughter
gets it from her just like I did from my grandma.”

Donna went on to say that the level of care was constant in her family, noting that
everyone helped everyone, despite their age. She said, “If anybody was hurting
physically, we were in the hospital. If they were ﬁnancially in trouble, we were always
there to supply, to help supply their needs.” Dora shared a similar message saying, “I was
close, really close to my grandma. She was the one who taught me about taking care of
family. ...and even though mom and I have had our bad times, she knows I will take care
of her, take care of things.”

Interestingly, Dora told me what she anticipated about her own late life needs,
noting that caregiver selection had already taken place in younger generations:

You would love her, Whitney (pointing to a photo of her youngest daughter), she

has such a great spirit; you can just see it in her. She is a lot like my grandma

was, so kind and giving. I know she’ll be the one who takes care of me. . .not that
my other daughter wouldn’t, it’s just, Kate’s made for it.
Finally, Dora was very clear that her relationship with her mother extended beyond the
provision of care. She stated this clearly by saying, “I get to do the fun things, like sort
yarn. ...anyone can be her caregiver but only I can be her daughter.”
History of Family Care & Comparison to Others’ Experiences (RQ4 & RQ5)
Overall, this family served in a number of care roles. Dora provided care to her

grandmother, her father, and now her mother. Donna reports providing care to both her

mother and her husband. Donna had difﬁculty talking only about care of older family

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members. She reported that care of family members was central to her family’s survival,
since she had three siblings with extensive health problems. She also reported that most
elderly relatives were very self-sufﬁcient:
I can remember the concerns for what will happen with the boys. As far as the
elderly people in my family, my mother's parents lived next door to us for years
and years. And before they built that house next door to us they had just lived a
block up the alley on the next street over. So, but they were very independent too.
....I can remember my great-grandparents on my father's side and they were, they
were independent they live alone until they died. And then the grandparents on
both sides lived alone.
Donna added a reﬂection about her mother’s care:
My mother was very ill. So [another family member] was there to take care of the
house. Everything just happened. Nothing was a planned thing. The Lord just saw
that the right people were in the right place at the right time.
Summary and Reﬂections
Donna and Dora have been in the current care arrangement since the death of
Donna’s husband about seven months prior to the interview. Although Dora (an only
child) had assisted both of her parents, the current arrangement includes care only to
Donna. Donna’s health had changed signiﬁcantly in recent years. At the time of the
interview She was doing well, still driving on her own, and did not need as much care
from her daughter. Dora assisted her mother with some care tasks but tried to focus her
time on being with her mother. Both women reported that Dora’s daughter also assists
Donna with certain tasks. Both women were clear that care was something that was
central to family life and that there was no question about providing it.
Both Dora and Donna reported two primary aspects of their family, reciprocity

and socialization of care. Both had provided care to other family members, young and

old alike. Donna’s experience of having three disabled siblings led her to provide care

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early in life. Later experiences of caring for her mother and her husband continued the
legacy of care, which Donna reports came very naturally. Dora had a similar reﬂection,
that the desire to care comes from a spirit or value, not an obligation. Both reﬂected
some sense of value in providing care, demonstrating an element of reciprocity.
Emergent Themes

When reviewing the data collectively, several themes emerged. Some related
directly to the research questions, while others did not. The themes that were most
prominent from this case study data included: immediate need for care, fear of nursing
homes, expectations for family care, gender socialization and previous familial roles,
contentment with caregiver role, and a shift in the decision process. Selection of
emergent themes was based on saturation and the fact that themes emerged in more than
half of the dyads. It is also important to note that range of emergent themes was deﬁned
by theory and that utilization of other theories may have yielded different themes.

Immediate Need for Care, Related Transitions

In nine of the families, care was necessitated on very short or no notice. These
recipients required immediate physical care and needed alternate living arrangements
within a matter of days. In some families, primary caregivers were concerned for a period
of time before care was implemented. However, the establishment of the current care
arrangement happened quickly and frequently involved the recipient moving several
hundred miles. Despite the urgency of the situation, recipients and caregivers hoped to
avoid nursing home care.

Veronica and Karin’s arrangement was a good example of the urgency for care.

Karin’s health declined so rapidly that she went from coordinating volunteer events to

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losing her memory and use of her legs in a matter of days. After a month in the hospital,
without much improvement, Karin’s physician talked with Veronica about permanent
arrangements. Just after being released from the hospital, Karin moved to Veronica’s
home which was 800 miles from her own.

Mona’s situation was similar to Karin’s in that a medical emergency led her
family and physician to decide that living alone was no longer safe. Mona reported that
her transition into her daughter’s home happened very quickly. Martina bought her a
plane ticket and it was done. She moved more than 500 miles from her beloved home,
which she still owns and where her husband’s ashes are placed. Mona reported that
keeping her home is important to her and that this desire is a point of contention between
her and Martina.

After losing her husband and being unable to manage daily household tasks, Rita
moved 1,700 miles to live with her daughter. Rita indicated that the home she had lived
in for 50 years was listed and sold within a week. She wished she had more time to pack
and say good-bye, but indicated that she was able to adjust. Rita did report that although
her family wanted her to get rid of all of her furniture, she insisted on returning some
speciﬁc items.

The urgency surrounding the need for care often required dramatic adjustments on
the part of caregivers and recipients. Many daughters and other relatives seemed to
dominate the care relationships. Although this support was needed by the recipient, it
often negated the recipients’ role in decisions about the sale of their home, what
belongings to keep, or where they would move.

Gender Socialization and Previous Familial Roles

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The majority of informants alluded to the concept of gender, with most messages
emerging in comparisons between themselves and male relatives. Although this theme
related primarily to caregivers, three recipients also reﬂected gender messages.

When reﬂecting on how they came to care for their mothers, more than half of the
daughters reported that they had been socialized or raised to be nurturing. Three
daughters speciﬁcally reported that gender guided them into the caregiving role, as
opposed to their male relatives (namely brothers). Caregivers who had siblings often
added that their mother received assistance from each adult child but maximized
individual strengths. Several daughters felt that being socialized as a nurturing female led
them to provide more intense care and to be attuned to their mothers’ needs in general.

Martina shared a conversation she had with her brother who said he did not want
to provide care to their mother. She asserted that his rationale was that she (Martina) was
better equipped to provide elder care. Martina indicated that the ability to provide care is
learned and that She was learning along the way. Bernice reported that her daughter,
Leda, found herself in the caregiving role because She wants to provide care, adding that
Leda’s work schedule lends itself to care. Interestingly, Bernice saw this as a result of
convenience rather than a deliberate effort by Leda to assist her mother. AS an
observation about Leda’s work schedule, in our interview she wore a pager and two cell
phones and reported working 13 hours the day before. Finally, Dena was overt in the
meaning gender had relative to care. She reported that her whole life was to take care of
her mother and that care of mothers by daughters was more appropriate than care by sons.

A related theme was that more than half of the caregivers had provided care to

other family members. Some reported embracing this role throughout their lives, while

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others were unsure (and humored when asked) how they repeatedly found themselves in
this role. For example, Idah reported (laughing) that she has always found herself in this
role. She went on to list ﬁve individuals for whom she had provided care, indicating that
she is just good at providing care.
Expectations for Family Care

A common theme from both caregivers and recipients was the expectation for
elder family care. Although this may seem implicit to this study, the simplicity or
seemingly obvious nature of this theme warrants discussion. Whether a result of avoiding
less desirable arrangements or a long history of care expectations, such values were
evident for each dyad. Caregivers and recipients alike reported expectations for family
care or ﬁlial obligation. For example, Karin clearly stated that she would have been
disappointed if her daughter had considered other care arrangements. She also added that
care is cyclical and that it is something that you just do. Donna explained how difﬁcult it
was to reﬂect on family care because it was so central to how her family interacted.
Carrie struggled with the conﬂict of having a “normal” life and providing care to her
mother. She was disgusted with her sisters for not offering family care options for
Deborah. Finally, although she was the most independent of all recipients, Bernice
reported that family care would be the only desirable option, adding that she believes
families are too quick to send the elderly to nursing homes.

Avoidance of Nursing Home Care
Overwhelmingly, recipients and caregivers agreed that nursing home care was to

be avoided at almost all costs. Only two informants reported that nursing home care

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would strain them ﬁnancially, while all informants indicated it would be a personal or
lifestyle decision not to consider nursing home care.

Speciﬁcally, Bernice and Deborah spoke clearly about their desires to avoid
nursing home care. Bernice reported not wanting to move into an assisted living facility
for fear that it would be a step toward a nursing home. She also reﬂected on several
negative experiences of elderly relatives, leading her to conclude that nursing homes are
completely out of the question. Deborah reﬂected her gratitude to Carrie for moving in,
as it was the only way for her to avoid being placed in a nursing home.

In most cases, recipients’ desires to avoid nursing homes were supported by
caregivers. For example, Leda was grateful that she had not had to think about nursing
home care and reported wanting to avoid it at all costs. Idah hoped that as her mother’s
needs changed, the assisted living center would continue to add resources so her mother
would not have to move into a nursing home. Carrie validated her mother’s report,
indicating that had she not moved in, her mother would have gone to a nursing home.
Carrie was explicit that this was her primary motivation for providing care.

Contentment with Caregiver Role

Eight caregivers reported a clear level of contentment in providing elder care.
Although some talked about the strain or related lifestyle shifts, stress was not the
predominate message. Instead of a focus on stress and strain, caregivers reported a
comfort with their role. Several talked about cherishing time with their mothers, seeing
this role as a natural extension of their relationship.

Veronica, Leda, Dena, Abigail, Sandy, and Dora all reported enjoying time with

their mothers and ﬁrrthermore wanting to maintain the mother-daughter relationship.

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Veronica noted that She enjoyed braiding her mother’s hair and taking walks with her.
Leda made a concerted effort to continue socializing with her mother, maintaining the
activities from years prior. Dena, although the most overwhelmed caregiver, noted that
her mother is her “best friend.” Sandy Spoke fondly of the weekends that her mother
comes to stay with her. Although she reports that these weekend trips are respite for her
mother (from the center), Sandy talked at length about how much she enjoys this time.
Dora gave the best example of how she defers to her role as daughter, not allowing the
caregiving role to overwhelm her. She reﬂected on a time when she and Donna were
sorting yarn, adding that only she can be her daughter.

Shift in Decision Processes

Seven recipients reported a shift in how decisions were made during and after the
establishment of care. Although one of the assumptions of this study was that elderly
family members unwillingly give up their decision making power, this assumption was
not supported by these data. These recipients clearly reported making a conscious
decision to defer power to their daughters (and other family members). Although
recipients appeared content with this transition, three caregivers were discontented by this
change. Caregivers wanted to assist in maintaining their mothers’ independence in any
way possible and continued to include them in decisions.

Anna, Rita, Beulah, and Karin clearly reﬂected contentment in deferring decision
making power to their daughters. Rita and Beulah both made a conscious decision to
relinquish this power, reporting that at “their age” it was time. Karin indicated that she
trusted her daughter and that she was happy to turn to Veronica. Veronica, on the other

hand, was concerned about her mother’s contentment, seeming to characterize it as a lack

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of independence. Like Veronica, Idah was concerned about her mother’s lack of
involvement and wondered if her own ability to step in led to her mother’s lack of
participation.

The emergent themes served as a form of cross-case analysis and reﬂected the
points at which data reached saturation. Although each case had unique characteristics,
some common messages emerged. Most of the themes related to the original research
questions. However, the urgency of care, deliberate avoidance of nursing home care, and
the shift in recipient’s decision processes were not linked to the original research
questions but emerged as important, reoccurring themes. Research question number one
(current care arrangement) was developed to glean how dyads described their
arrangement. It was not expected that precipitating factors would include the urgency
and warrant signiﬁcant geographical moves. It was expected that families would reﬂect
on their options (RQ l & 2) considering ecological factors and decision making. It was
not expected that the overwhelming majority of recipients and participants would
explicitly report their desire to avoid nursing home placement. Furthermore, it was not
expected that families would go to such lengths to avoid nursing care. Finally, in respect
to the decision making process, research questions two and three were established.
Although these questions were developed to better understand the decision making
process and the recipient’s role, the recipients’ level of contentment with decreased
involvement in decisions was not expected.

Summary
The ﬁndings of this study were presented in two parts, ten case summaries linked

to the original research questions and emergent themes. Families were unique in some

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ways but also reported overarching themes. The results of this study have implications for
future research, the ﬁelds of family science, gerontology, and speciﬁcally marriage and

family therapy.

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CHAPTER FIVE: DISCUSSION
Introduction

The purpose of this study was to explore the experiences of elderly recipients of
care in the context of informal care dyads. This study aimed to understand the
experiences of recipients relative to family caregiving from both a current and historical
perspective. A particular focus was placed on the process that led to the current
arrangement - ecological inﬂuences and the decision making process. This study was
designed to examine the current care system as well as the history of family care -
namely the recipient’s role in and perception of care over time. The purpose of this
chapter is to reﬂect on all aspects of this study — anticipated and unanticipated ﬁndings,
the theoretical framework and previous research which informed the foundation of the
study, methodological insights, suggestions for future research, implications for family
science and speciﬁcally the ﬁeld of marriage and family therapy, and my general
reﬂections.

Key Findings

Several key ﬁndings emerged from the semi-structured interviews, some linked
with the original research questions and some that were new to the conceptualization of
this study. Each is linked to the previous literature and offers a foundation for ﬁrture
research. Key ﬁndings include the role of the primary caregiver and congruence issues,
ecological factors, decisionmaking processes, and history of family care. Each ﬁnding
includes additional sub-ﬁndings and is described below.

The Role of a Primary Caregiver and Congruence Regarding Care Tasks

“I always knew I would be my mom's caregiver. There was never a question.
Always there. It just seems more appropriate for a daughter more than. .

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my brother and I had talked a little, you know. It's just more appropriate
for a daughter to give.. .to give baths and things like that.” ~Dena

This key ﬁnding relates to research questions one and Six. Current arrangements
included tasks ranging from management of medical paperwork to co-resident care.
Although there was a wide range, most dyads acknowledged weekly or daily assistance
of some kind. In all cases, recipients received assistance with IADLS, namely
management of medical affairs or money. In six of the cases, daughters assisted their
mothers with personal care tasks (e. g. bathing). Recipients and caregivers were highly
congruent in their reports of care tasks. The details of the care arrangement support
previous research, speciﬁcally the role of daughters in the care of mothers. Harris (1998)
reported “that mothers do not select sons as primary caregivers because of their concern
for modesty” (p. 343). Since more than half of recipients received assistance with
bathing, this supports research indicating that daughters are more likely to provide care to
mothers.

The current care arrangements described in this study closely align with previous
research on elder care. Cicerelli (1992) and Ingersoll-Dayton, et a1 (2003) report that
although family members often collaborate in the care of elderly family members, a
primary caregiver can be identiﬁed in most cases. In each of these families, an adult
daughter was both self-identiﬁed and named by the recipient as the primary caregiver.
These care systems also were characteristic of others described in the research in that
they included additional members, both family and non-family.

Ecological Factors
“1 get to do the fun stuff, like sorting yarn. It may sound corny but it’s

important to me, to keep on laughing with her, to keep creating memories.
Anyone can do her laundry, only I can be her daughter.” ~Dora

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Several ecological factors led to the current care arrangement and the process of
family interaction around care. Crises, caregiver selection, gender, reciprocity,
relationship beyond care and fear of nursing home placement were central to the dyads’
processes. The data discussed below addresses research question two and integrates key
ﬁndings from chapter four such as the immediate need for care, fear of nursing homes,
and gender socialization.

In nine cases, one event precipitated the current care arrangement. Although more
than half of daughters already were assisting their mothers in some way (even at a
distance), seven dyads reported that a sudden decline in health led to the current
arrangement. As mentioned previously, several recipients required added assistance as a
result of the death of their husband, contributing to the decision for care.

One element that emerged was caregiver selection, or the process by which the
adult child perceived that she became a caregiver. Several either explicitly stated (some
with pride) that they were socialized to provide care or alluded to such a process. Seven
made reference to or alluded to gender as a primary factor, comparing their involvement
to male family members. Both of these ﬁndings support previous research, that gender
and previous experiences in providing care are predictors of the caregiving role
(Cicerelli, 2000; Piercy & Chapman, 2001; Ungerson, 1987).

Five caregivers talked about the desire to give back to their mothers, for the care
that they had received over time. Four caregivers reported that they gain something from
providing care to their mother. These data support the idea that reciprocity, as discussed
by Lewinter (2003) and Treas & Mazumdar (2004), is an important factor in care

systems. Speciﬁcally, caregivers described deferred or immediate reciprocity (Lewinter,

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2003). The most commonly described form was deferred, where caregivers saw their
activities as a way to pay their mother back for the years of care.

Another ecological factor included the beneﬁts of the current care arrangement
(e. g. immediate reciprocity), that spending time with their mother or even having
something to do (e.g. caring for someone) was a valuable aspect of their role. Four
caregivers reported that no one else was there to take over, leading them to conclude that
their mother would have gone without care if they had not stepped in. In addition to the
limited number of familial resources, two caregivers discussed the limited number of
other resources (e.g. unpredictability of visiting nurses, limited monetary support),
leading them to conclude that family care was the best option.

Although related to reciprocity, the relationship between mothers and daughters
was mentioned somewhat differently than through giving back. Six daughters spoke of
their relationship with their mother, beyond the role of caregiver. This ﬁnding was not
linked to the six original research questions but does relate to existing information in the
caregiving literature. It is important to note that in these cases, the care relationship was
not unilateral as often assumed in the literature. This widely held assumption supports
Treas & Mazdumar (2004) in their statement, “In family roles, older Americans are
widely perceived as care recipients, rather than caregivers” (p. 107).

In four cases, both the mother and daughter talked about enjoying their time
together. Several researchers (Bleiszner, Usita, & Mancini, 1996; Fingerman, 1996)
discussed mother daughter relationships in the context of care, some asserting that care
relationships are conﬂicted. However, Bleiszner et a1 (1996) claim that existing dynamics

prevail in care relationships and caution scholars not to attribute conﬂict to the care

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relationship itself. In several cases, daughters talked about continuing to engage in social
activities with their mothers. Mona talked about knitting with her mother, and the
uniqueness of the mother daughter relationship. Veronica reported setting aside time
every week to share with her mother, outside of care tasks. Sandy Spoke fondly of bird
watching with her mother and although her mother’s sight has diminished, they have
shifted their focus to ﬂowers. Leda and her mother have had tickets to the local
performing arts center for decades. Leda reported that this activity was important one-on-
onetime for her and her mother and that she hoped to continue this tradition for many
years. The deliberate efforts of caregiving daughters to maintain an element of the
existing relationship relates to Horton & Arber’s (2004) assertion that carers are
concerned about protecting the parent-child relationship.

Although caregiving daughters were more deliberate about setting aside time to
be with their mothers, the recipients also talked about enjoying this time. Leda’s mother,
Bernice, mentioned the performing arts tickets, saying that this was an enjoyable time for
just her and her daughter. Sandy’s mother, Anna, talked about enjoying weekends at her
daughter’s home. Veronica’s mother, Karin, reﬂected on how much she enjoys taking
evening walks with her daughter.

Although these ﬁndings seem to be related to the reciprocity literature, they
varied enough to discuss them separately. Although daughters talked about a mutually
beneﬁcial process, it still appeared somewhat unilateral. These activities seemed to be
linked to the role of caregiver rather than the role of daughter (e.g. the care was out of
concern for the mother). Although this distinction is subtle, it is an important dynamic

and may unveil a new element of caregiving research.

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Another ecological factor that contributed to decisions about care arrangements
was the pervasive fear of nursing home care. All ten dyads (caregivers and recipients
alike) shared the expectation that nursing homes were a last resort. Although I did not
expect informants to say that they wanted to go to/see their parent in a nursing home, I
was surprised at the efforts families employed to avoid such placement. Not only did
caregivers push themselves beyond their ability to care in order to avoid nursing home
placement, several recipients articulated a clear expectation that nursing home care would
be a disappointment.

Carrie reported that her decision to move in with her mother was solely to avoid
nursing home placement. Carrie was upset that her two older sisters would consider
placing their mother in a home and felt that the only way to avoid it was to become a co-
resident carer. Bernice reﬂected on the experience of a great aunt who lived in a nursing
home, saying that the residents were heavily drugged and just waiting to die. Although
Bernice was one of the most self sufﬁcient recipients, even caring for her nephew, She
reported thinking that her family was planning to place her in a home. Her daughter, Leda
said she hoped that time would never come. Rita reported moving from her lifelong home
in Florida to Michigan, to avoid isolating placement. Even though she resides in an
assisted living facility, she is connected with her daughter and has a steady stream of
visitors, making her current arrangement different than what was available “back home”.

Although this value was articulated by most dyads, in two of the cases I believed
that the level of care needed extended beyond the abilities of the caregivers. For example,
in Deborah and Carrie’s home there were several pieces of furniture that were unstable as

well as various tripping hazards (e. g. multiple small animals, toys, blankets on the ﬂoor).

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Given Deborah’s diagnoses of Parkinson’s disease, these hazards were especially
concerning to her physical safety. Vera and Dena seemed to struggle with a different type
of issue, mental health and general satisfaction. Vera exhibited signs of depression, and
the family appeared to be isolated from resources. Although Dena acknowledged her
mother’s state, she reported not knowing where to go for help. Secondly, the care being
provided by Dena appeared to be straining her immensely. Although Vera’s mental
health was not a primary concern in and of itself, her level of isolation combined with
Dena’s management of daily life (6. g. being overwhelmed) was.

Decision Making: Role of the Recipient & Lack of Congruence

“I guess because I kind of took over some things then,
she ’s just really more dependent on me than she was. ” ~Idah

In respect to the current care arrangement, crises played a signiﬁcant role. When
care was implemented, it was often at a time when the recipient was unable to actively
participate in decisions. In four cases, after the recipient recovered, the care rarely
changed and often exceeded the needs of the recipient. It is important to note that there
was a disctinction in the data between the decision making process that led to the care
arrangement and the decision process since the care arrangement was implemented.
Brubaker, Gorman, & Hiestand (1990) reported that a recipient’s perception of his/her
involvement and control in care decisions is related to stress level. The greater control
one feels in care decisions, the lower the stress reaction. Therefore, it is important to
adjust the care arrangement, and more importantly the process of care decisions, as the
recipient’s abilities change. This was noted in two of the dyads, where care had been

provided for at least three years.

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One of the assumptions of this study was ‘younger generations are more overtly
involved with care decisions than elderly recipients of care’. Although this assumption
was supported by the data, it was expected that recipients would be discontent with a
lower level of involvement. However, despite decreased involvement in decisions,
several recipients were clearly satisﬁed with their current arrangement.

Four recipients were actively involved in decisions about their care. Although
some described their involvement as “50-50” and others as “heavy”, several reported
deferring decision-making power to their daughters. Although initial assumptions of this
study included concern about caregivers having most of the decision making power, it is
notable that many recipients made the choice for their daughter to be the primary decision
maker. Therefore, despite the recipients’ lowered involvement in decisions, they had
played an indirect role by choosing to have their daughters make decisions for them (see
Figure 5.1). Again, the source of the decisions leading to the current arrangement was a
greater area of contention and less likely to be congruent than the Current decision
making process.

Interestingly, some caregivers reported being concerned about the level of
contentment that their mothers had with not being involved in decisions. Namely
Veronica, Abigail, Jana, and Sandy reported concern about their mothers’ level of
contentment with regard to decreased involvement in decision making. This supports
Horton and Arber’s (2004) statement that a primary concern for caregivers is to “protect
the parent’s identity” (p. 77).

In two cases (Abigail & Beulah and Idah & Rita) the lack of congruence

regarding the process and decisions leading to care was marked. Abigail reported that her

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mother had a major role in care decisions, saying that Beulah even picked out the very
building in which she lives. Beulah reported that her daughter and late son-in-law made
all of the arrangements, adding that she had never even seen the facility before she
moved.

The issue of congruence is a difﬁcult one and can imply that there is a right or
wrong answer. However, it is important to note Litvin’s (1992) statement regarding the
importance of accounting for the “differences in the meaning of the caregiving
experience for each member of the dyad” (p. 75). A lack of congruence may not indicate
conﬂict or problematic dynamics. Rather it is important to understand how each person
perceives the process, paying attention to each person’s story without an investigative eye
for the ‘truth’.

Karin reported that her daughter takes good care of her and that she trusts her
decisions. Karin’s daughter, Veronica supported this by saying that she feels like her
mother has become used to deferring to her. In the context of this conversation, Veronica
said laughing, “Sometimes I think, I just want my mommy back!” Beulah said that after
she became ill the last time, she told her daughter to “take over.” Anna reported being
“very happy” in her current situation but alluded to happier times. Since she moved to
Michigan, she has not been in contact with good friends “back home.” This had been an
adjustment for her, and she reported that “this arrangement” was a good way for her to
get her needs met. Rita also reﬂected this theme, stating, “When you get to be my age,
you just have to do what you have to do. . .my daughter wanted me to move here and I
didn’t have all that I needed in Florida, so. . .”

Extensive Care History & Multiple Roles for Recipients

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The majority of recipients described care of elderly family members as a
normative family task, reporting that caring for the elderly is just something that comes
“naturally,” is “cyclical,” or expected. Most recipients had provided care to an elderly
spouse and/or parent, parent-in-law, or grandparent. For example, Veronica’s experience
in observing the care of her grandparents by her parents, her role as a caregiver to her
mother-in-law, and her current role as a recipient supports the idea that family care is a
dynamic process. Pillemer, Suitor, & Wethington (2003) reported that “caregiving has
often been viewed as a speciﬁc activity, rather than as a social status that individuals
move into and out of at various points in the life course” (p. 24). Bronfenbrenner’s
concepts of the ecological transition and the chronosystem relate well to the care history
of recipients and to Pillemer, et al’s (2003) statement. Research on the dynamic state of
care systems is necessary, speciﬁcally to include all system participants to review the role
transitions over time.

Summary of Key Findings

Key ﬁndings include four over arching themes and several sub themes. Figure
5.1, the process model, illustrates the relationship between each of these factors. Since
this study was done over a short time period, a key focus point was the current care
arrangement (placing that theme in the middle). Although the current care arrangement
was important to the study and certainly a current view of family care for each dyad,
other important themes are included on the map. For example, family ecological factors
are illustrated such as values and decision making. Sub themes of these categories

include messages about care, relationship between RoC and ACC, and gender

I23

socialization. For decision making speciﬁcally, there was a discrepancy between what

recipients and caregivers reported, resulting in two different lines for that factor.

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Figure 5.1: Process Model

 

History of
Family Care

 

 
 
  

 

 

 
  
 

Values &
Messages
About Care

 

  

Avoidance of
Nursing r

Monetary _ _ _. H

Resources omes

 

 

 

 

 

 

 

 

 

  
 

Relationship

between RoC
I & ACC

 

  

 

 

 

 

 
 
 
   

 

 

 

 

7
D .. In-Direct* Current
ecrsron—
R l fR. C -------- > Arrangement rgen
0 e 0 0 Direct* ‘ Health

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Family & Need of
Sibling RoC
Gender & . ' . ,
Socialization Role In Family
of Daughters & Slbllng
Position _ _
Timeliness
of
Widowhood

 

 

 

 

Legend

Strong Inﬂuence M
Moderate - Strong Inﬂuence ‘———>
Some Inﬂuence 4=

Minimal Inﬂuence "" — — -' " >

 

 

 

‘Recipients had little direct decision making power about the current care arrangement. However, they
were directly involved in decision-making in that many deferred decision-making power to their daughters.

125

Theoretical Framework
Family Ecology Theory
Family Ecology Theory served as the foundational theory for this research and

informed this study through four primary concepts: boundaries, values, decision making,
and resources. Two of the concepts (decision making and values) emerged from the data
and a third (resources) was somewhat present in the data. The concept of boundaries,
although alluded to, was not a primary ﬁnding. For example, some of the elements
related to self care were linked to boundaries but did not emerge as a primary theme.

The data from this study supported Paolucci, Hall, & Axinn’s (1977) assertion
that decision-making is a process humans learn over time, based on environments and
interactions. Central elements related to decision making included collaboration,
deferment of decisions to younger generations, and prior relationship dynamics. The
decision making process paralleled patterns from the family care history. Many
caregivers adopted care strategies that had been employed by their parents. This was not
surprising since all of the caregiving daughters were raised by their recipient mothers,
supporting the importance and process of socialization.

As stated in the key ﬁndings section of this chapter, several recipients deferred
their decision making power to their daughters. For example, Karin reported trusting her
daughter completely and knowing she would take care of her business, leading her to
defer decisions to her. Beulah reported turning everything over to her daughter, saying
that it was time to do so, mostly because she was tired of managing the checking account
and physician bills. Rita also said that she has her daughter take care of things because

She knows what is needed, adding that her daughter knows the geographical area best

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(e.g. physicians, resources). This comment spawns an interesting point about the process
of moving closer to adult children for the purposes of care. By doing so, Rita seemed to
transfer decision making power to her daughter simply because she moved to her
daughter’s home area. Such a move likely necessitates active involvement on the part of
the adult child who has been living in the area.

The history of family care (Bronfenbrenner’s Ecological Transition) and
speciﬁcally the role of the recipient over time seemed to be directly linked to the decision
making process. Several dyads reported a history of care that mirrored the current
arrangement, and although few recipients were able to reﬂect on this directly, these
parallels emerged from the data. For example, Deborah reported making the decision to
provide co-resident care of her husband instead of placing him in a nursing home. Her
daughter, Carrie, reported the same justiﬁcation for choosing co-resident care for her
mother. Idah and Rita reported that the care of Rita’s husband mirrored the care she was
receiving from Idah. In some cases, the current care arrangement was chosen from a
framework of what does not work. For example, Leda and Bernice both reported a
family history of unfavorable experiences with nursing home care. Consequently, they
agreed to avoid this arrangement as long as possible.

Since decision making is a dynamic process, based on communication,
interactions, and perceptions, it was extremely important to hear from multiple system
members (Bubolz & Sontag, 1993; Griffore & Phenice, 2001; Paolucci, Hall, & Axinn,
1977, p. 2). This position was supported not only by previous research (Horton & Arber,
2004) but also by the lack of congruence in the data relative to decision making. In

several dyads (Abigail and Beulah, Martina and Mona, Carrie and Deborah, Sandy and

127

Anna) reports of decision making surrounding the current care arrangement were
incongruent. As mentioned in the ﬁndings section, both Abigail and Beulah reported that
the other had selected the assisted living facility. Sandy reported making the decision
with her siblings that moving her mother to Michigan was the best option. Although this
was done behind the scenes and the move did not take place until Anna was “ready,”
their reports of this process were incongruent. Sandy reported that she and her siblings
made the decision whereas Anna reported that she made the decision.

The decision making process was the most rich portion of these data, given the
lack of congruence, links to the family history, and in respect to how decisions were
made. It is likely that these data are most enchanting because they challenged the
theoretical conceptualization of this study (based on both Family Ecology Theory and
Feminist Theory), that recipients would be displeased with their decreased role in
decisions.

The concept of resources is important to Family Ecology Theory and decision
making. Knowing that consideration of options is central to decision making, it is
relevant that families may be unaware of the options available to them (Bubolz & Sontag,
1993). Generally, there are three aspects to decision making in families: ranking — the
classiﬁcation of options based on preference; elimination — based on various factors, the
list is reduced; closure — when one option is selected, without conﬂict (Griffore &
Phenice, 2001). However, system members can only consider options about which they
are aware. Resources may limit options or knowledge of options and consequently,
system members are unable to fully consider what might be best. Recipients perceived

limited options for care support, which was afﬁrmed by caregivers. For example, Rita

128

and Mona saidcutright that there were no other options, and they had to adapt to what
was available. Although addressing this dynamic less directly, Tina reported that her
other children were “very busy” with work or young children. Many other informants
alluded to the idea that their current care arrangement was their only option, quickly
adding that they were not necessarily unhappy. It is possible that recipients who perceive
limited care options are likely to defer to the person who offers. For example, after her
mother’s fall, Martina stepped in and moved Mona to Michigan, being the most vocal
member of the ﬁve siblings. Therefore the family seemed to defer to her as she had made
adequate arrangements. However, other arrangements may have been feasible or may
have met Mona’s needs better than the arrangement that was put into place. This dynamic
may lead recipients to fail to consider other options, consequently limiting their part in
decision making.

Messages about family values and responsibility for elder care also emerged. As
stated in Chapter One, values reﬂect what individuals determine to be right or moral and
are inﬂuenced by society, culture, religion, and other environments (Bubolz & Sontag,
1993). As caregiving is being viewed as a normative family task, it is a common societal
value that younger generations will care for aging family members (Cicerelli, 2000;
Sherrell, Buckwalter, & Morhardt, 2001). It was common to hear recipients and
caregivers report that caring for others comes “naturally”. Although caregivers and
recipients did not directly link this value to society, some said, “It’s just what you do” or
“It’s cyclical.” However, the fact that this was a common theme across cases may

support the assertion that care of older family members is a widely held societal

129

expectation. In most cases, providing family care was a strong value and also was seen as
a way to avoid nursing homes.

It is important to note that the concept of values, and certainly in respect to elder
care, is linked to the decision making process. Essentially, we make decisions based on
what we deem important. It is also relevant to note that the transmission of values is
commonplace in family relationships. We learn what is important from family members
and often adopt similar values. For example, Donna’s comments reﬂect this well when
she stated that it was difﬁcult to share much about family care because it was so much a
part of the way her family operates that it did not seem noteworthy.

Use of Family Ecology Theory allowed new ﬁndings to emerge from this data.
The lack of congruence between caregivers and recipients in respect to decision making
was noteworthy. More Speciﬁcally the distinction between decisions leading to and
following the care arrangement was marked. Although caregivers and recipients were
highly congruent in their reports about decisions Since the care arrangement was
implemented, there were distinct differences within dyads regarding decisions at the time
care was necessitated. This distinction and related congruence differences were not
expected. These ﬁndings warrant additional inquiries into the process of decision making
for elder care dyads. Furthermore, the ecological factors leading to care may also justify
further investigation of a care trajectory. This research from a family ecological
perspective would necessitate the inclusion of recipients as informants.

Feminist Theory
Feminist Theory was central to this study for a number of reasons. First,

Feminism and qualitative methods compliment one another and partner well with

130

gerontological research (F alicov, 1998). Therefore, this paradigm offered a framework
for the organization and philosophy of this study. Secondly, Feminism was used to view
Bronfenbrenner’s macrosystem, acknowledging that old age often is equated with decline
and consequent dismissal of the elderly by society. Finally, this lens was used with
respect to females, namely daughters and mothers in the family care system. Feminism
Speciﬁcally acknowledges that women are socialized to provide care to the elderly (and
other family members), placing them at greater risk for stress and overload (Blieszner,
Usita, & Mancini, 1996). The feminist framework acknowledges women and the elderly
as being oppressed in American society, which was a concept central to this study
(Brewer, 2001; Lee, 1992; McGoldrick, 1989).

In addition to informing the methodology and primary assumptions of the study,
feminist concepts also were reﬂected in the data. The two elements, gender and power,
were central to this study (see Figure 5.3) (McGoldrick, 1989). Several informants talked
about gender being a primary selection variable in the care system. Many compared their
involvement to male relatives, and some wondered what would happen if they chose to
stop providing care. Although some challenged their position as primary caregiver, many
felt a sense of duty and pride. The process of vacillating between honoring one’s position
and questioning one’s ownership of responsibility, characterizes the experience of many
women.

Power, although less overt than gender, was still present in the data. There
appeared to be a transfer of decision-making power from recipients to caregivers.

Although several recipients talked about this power transfer, the struggle anticipated to

131

follow that transfer did not come. Further examination of the transfer of power from
recipients to caregivers would be well served by Family Ecology Theory and Feminism.
Contextual Theory

Contextual Theory contributed a clinical, marriage and family therapy perspective
to this study. Although F arnily Ecological Theory offers an important framework from
which to study families overall, Contextual theory better integrates concepts related to
families in a clinical realm.

As stated in Chapter One, Contextual Theory considers issues of fairness and
equality relative to the family of origin (Boszormenyi-Nagy, Grunebaum, & Ulrich,l99l;
Goldenthal, 1993). Individuals have experiences in their family of origin that may lead
them to feel a sense of entitlement in later relationships. The concepts of Contextual
theory relate to these data in two ways.

First, a small number of recipients reported dynamics similar to contextual
concepts. When they did, recipients were very clear about their expectations, some
reporting that they fully expected their daughter to provide care. Contextual theory would
support the idea that this entitlement is a result of an unbalanced ledger earlier in the
recipient’s life, leading the recipient to expect a child to pay back something someone
else owed. Although this element was not speciﬁcally included in the interview protocol,
a self-report history of care was. This is relevant because so many recipients were
caregivers at one time, and this entitlement for family care may be linked to the fact that
they had once provided care to another family member.

Secondly, about half of caregivers with siblings were frustrated by the lack of

equity in the distribution of care tasks. However, only one of the caregivers reported

132

having challenged this position with their siblings. Instead, caregivers described a level
of defensiveness with siblings when care was needed. Martina’s comment to her siblings
represents this concept well. She reported telling her siblings that if they thought the plan
she had for their mother’s care was wrong, they (her siblings) could come up and take
care of things themselves.

According to Nagy, et a1 (1991) this type of defensiveness and related
action/reaction is a precursor to an unbalanced ledger. Over time Martina (and other
caregivers with similar reactions) will build a sense of entitlement, feeling that their
siblings owe something in return. Nagy would add that this ledger would cause problems
in Martina’s future relationships, as she would look to others to right this wrong (1991).

One case in particular echoed concepts from contextual theory. Jana and Tina
both reported a difﬁcult history where Tina had been ﬁnancially exploited by her
granddaughter (Jana’s daughter). Although Jana intervened several times to “save” her
mother from bad choices, this exploitation seemed to Spawn loyalties. As Jana spoke
about her mother’s experience of being exploited, she appeared to take a signiﬁcant
amount of responsibility for repairing her mother’s credit and protecting her from a
similar situation. Although this may not seem unusual for an adult child, her investment
in managing her mother’s money and activities was much more intense than any of her
siblings or the nine other caregivers interviewed.

From a Contextual perspective, this level of involvement would be viewed as an
effort to correct the system or the wrong that Tina experienced. Jana’s efforts are notable
since it was her daughter who exploited her mother. Jana seemed to be taking

responsibility for “cleaning up” the “mess” that her daughter created. This is also notable

133

because Jana had been providing care to her three grandchildren for a time just before the
interview.
Theoretical Maps — Original and Emerging

The original theoretical map is reﬂected in Figure 5.2. Family ecology theory was
used as the foundational theory, applying decision making, values, resources, and
boundaries equally. These family ecology concepts were linked to both feminist theory
and society by the macrosystem. The original map illustrated that feminist concepts,
speciﬁcally gendered expectations and age related power differentials, were central to
family life and family ecology concepts. Feminism also was directly linked to the
macrosystem as the original model illustrated the inﬂuence between feminism and
societal expectations in American culture. Bronfenbrenner’s ecological transition and
chronosystem was placed at the bottom of the diagram to illustrate the passage of time. It
was expected that this factor would allow for an examination of roles over time.
Contextual theory was used to integrate clinical components, speciﬁcally Marriage and
Family Therapy, into research about elder care dyads. The original map included
contextual concepts as outcomes.

The emerging theoretical map (Figure 5.3) illustrates how the current data reshape
the relationships between theoretical constructs. Concepts from family ecology theory
emerged at varying levels, with decision making and family care values being the most
notable themes. Both were strongly inﬂuenced by gendered expectations in the family
and role related power shifts (feminist concepts). Unlike the original map, the concept of
resources was somewhat related to how families operated but not heavily. The concept of

boundaries was related minimally to how families interacted surrounding elder care.

134

Feminism was clearly linked to expectations of society, supporting the relationship
between feminism and the macrosystem. Feminist concepts were more clearly
distinguished from one another as some other concepts related to one or the other more
distinctly. Gendered expectations related as expected in the original theoretical
conceptualization. However, the way that age was used in respect to feminism was
changed from ‘age related power differentials’ to ‘role related power shifts’. This change
reﬂects the difference between ageism as a construct in families that leads to a weakened
and discouraged voice and the theme that emerged related to family roles and related
power shifts. The role related power Shift is linked directly (bi-directionally) to the
ecological transition as caregivers and recipients often held multiple care positions over
time. The feminist concept related to this was power, as recipients often deferred power
to caregivers. This was viewed as a result of changing positions in the care system that
was related to power differentials but not in the way originally thought. The importance
of these role shifts and related dynamics warranted the decision to move the ecological
transition into the core of the model, indicating its relationship to family ecology
concepts.

Contextual concepts were divided into two areas, loyalties and entitlement.
Loyalties were often linked with family care values as daughters reported wanting to and
expecting to care for their mothers. Entitlement did not emerge as clearly as expected or
in the format described in previous chapters. The inﬂuence linking decision making and
entitlement was unidirectional and was linked by more than family of origin ledgers, as
described by Nagy (1991). Entitlement emerged as an issue as mothers expected

daughters to provide care although it was not clear from where this emerged.

135

Furthermore, of the seven caregivers who had siblings, many reported a sense of
entitlement to receive help from siblings. Again, entitlement was not utilized as
originally discussed by Nagy (1991), but it is clear from these data that entitlement
between and across generations is relevant.

The changes in the theoretical map highlight the relationship between the chosen
theories. Bronfenbrenner’s macrosystem was aligned with feminist concepts, Speciﬁcally
gender socialization in families. This supports the assertion that feminist power
differentials exist in broader society, and integrating family ecology supports the
examination of such differentials relative to family dynamics. The links between these
concepts were strong and supported by data where caregivers and recipients reported

strong ﬁlial expectations both within the family and from the broader societal context.

136

 

Figure 5.2: Original Theoretical Map

 

  
   
    
 

     
   

 

 

 

Bronfenbrenner’s F 'l E 1 Th Bronfenbrenner’s
Macrosystem W Macrosystem
Values Decision Making
i Feminist Theory
Gendered
Expectations
Age Related
Power
Differentials
Resources Boundaries
Bronfenbrenner’s Bronfenbrenner’s
Macrosystem Macrosystem

 

9.1mm
Outcomes — Ledgers, Entitlement, Loyalties, Indebtedness

 

 

 

I Bron enbrenner’s Ecolo ical Model I
Chronosystem & Ecological Transition

 

 

 

137

 

Figure 5.3: Revised Theoretical Map

 

 

 

Bronfenbrenner’ s Bronfenbrenner’s
Macrosystem Family E C 0| 0 2V Th COW Macrosystem
Feminist Theory

I

 

 

I
I

 

 

  
  
 
   

 

 

 

-----:d'-l

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

. Gendered Role Related “
Resources 5 Expectations Power Shifts Boundaries
Decision
Making
Bronfenbrenner’s
Ecological
Transition
I Contextual .. Loyalties l Contextual - Entitlement I

 

 

138

Methodological Issues and Limitations

As with any research project, there are methodological considerations in
conceptualization, interpretation, and writing. Although there are strengths to various
methods, there are also inevitable limitations.

Self-Selection

This project included 20 volunteer informants who were participating in elder
family care to some degree. It was necessary for recipients to be able to sit in a 45
minute interview, which limited the sample to individuals who had minimal hearing,
mobility, and transportation barriers. Individuals who were physically able to participate
likely had a different care experience than those with more substantial limitations. It is
also important to note that individuals who volunteer for interviews (despite the small
monetary gift) are likely to be happier in their current arrangement. Individuals who are
unhappy with their current situation may be less likely to talk with a stranger about their
experience. This is even more true in dyadic research where one participant knows that
the other member also is being interviewed. 1n dyads where problems exist, one or both
members of the dyad may not want their displeasure revealed to someone outside the
family.

Differences Between Dyads

Although homogeneity of participants was not a goal of this study, it is important
to note some of the differences between dyads. The primary differences included the
type of assistance provided, living arrangements and age. Although generalizability is
not an expectation or appropriate concept to use in case studies, it is important to note

demographic and lifestyle differences of recipients.

I39

The ﬁrst difference was in regard to the living arrangements of and care received
by recipients. Living arrangements are important to consider in care dyads because living
circumstances and care reciprocally inﬂuence one another. For example, one recipient
was highly, independent whereas another was dependent on her daughter for most of her
needs. Five of the ten recipients lived in assisted living centers, four lived with their
caregiving daughter, and one lived separate from her daughter (but not alone as her
nephew lived with her). Although each recipient received care from a daughter, the
involvement of other care system members (e. g. assisted living staff) likely altered family
care. For example, Dora talked about the importance of enjoying time with her mother
rather than doing her mother’s laundry. Since laundry services were available to Donna,
Dora was able to utilize that resource. For dyads engaged in co-resident care, the same
resources were not available. Jana reported a goal similar to Dora’s, to Spend more
quality time with her mother. Although Jana provided co-resident care to her mother, she
hired aides to assist with various tasks, including housework. It is important to note that
the availability of resources between assisted living and co-resident care are different and
may limit access for co-resident dyads. This may be confounded by individuals’
(caregiver’s and recipient’s) desires not to have strangers in their home as well as the
costliness of in-home services.

The second notable difference between dyads was the age of both mothers and
daughters. Caregivers ranged in age from 36 — 68, and recipients ranged in age ﬁ'om 72 —
92, with the oldest caregiver only four years younger than the youngest recipient. ’
Although chronological age is not the only factor to consider in family roles or in the

need for care, it certainly inﬂuences resources (e. g. retirement/work status) and can relate

140

to other family positions (e. g. grandparenthood, Widowhood, etc.). For example, two
caregivers had been widowed themselves which likely inﬂuenced the way they related to
their widowed mothers.
Reﬂection on the Chosen Methodology

As I reﬂect on this project, I believe the selection of qualitative methods was a
good decision. Speciﬁcally, the individual, semi-structured interview ﬁt well with the
goal of this study, rather than focus groups or dyad interviews. The decision to interview
recipients more than once, leaving at least ﬁve days between meetings, was a strong point
of this study. In the second interview, recipients often would report having thought about
something discussed previously, sharing an added point or reﬂection. The original
proposal included several forms of ﬁeld notes, including an ecomap, genogram, and
timeline. These would have duplicated and been constructed from the interview
narratives. Although the ecomap was used in the ﬁnal stages of the project, being
constructed after each interview, it was not found to be useful in the data analysis. Since
this study was focused on the family care system, entries on the ecomap were minimally
related to the study and analysis. The genogram and timeline, although more speciﬁcally
related to the family, were not used as they did not offer anything more than the interview
narrative.

If I were to pursue a study similar to this one, I would either limit the time of care
or categorize the groups by time intervals of one year. I believe that the length of time in
the current arrangement inﬂuenced several factors in each of the ten dyads. I would also

limit the sample to families where caregiving daughters had at least one living sibling.

141

 

This would allow me to inquire more about within generation decision making,
speciﬁcally related to the sibling relationship.
Limitations

This project was exclusively qualitative and although a coding consultant and
faculty oversight committee was used throughout, 1 was the primary investigator. With
that came inherent biases that, although expected and accepted in qualitative research,
must be acknowledged. Although some of my biases were reﬂected in the assumptions
(Chapter One), there are others shared in the reﬂections section.

Although a semi-structured interview protocol was used throughout the research
process, no two interviews were exactly the same. The unique experiences of each dyad
led each interview in its own direction, and the interview narrative progressed somewhat
differently with each informant. Although the order of questions was not deliberately
changed, some questions led informants to answer others. When this occurred, the
original question was asked in the appropriate order. However, the organization of data
may have differed for each informant.

Recipients had difficulty with two of the interview questions. When asked “How
would you compare their experience with yours? If it is different, why do you believe it is
different?” recipients seemed to struggle with this comparison. In hindsight, it seemed
that recipients perceived a varying level of care between these scenarios and their own
and may have had difﬁculty seeing themselves in the same light. When asked, “Have you
ever provided care to a family member who was your age or older?” several recipients
minimized their role, reporting that they did not help the older family member but went

on to describe weekly or even daily assistance. Difficulty with this question was

142

confounded by the presence of another, often primary, caregiver. For example, Bernice
talked about being responsible for bathing her grandmother but reported that she did not
provide care, that another family member did all the work.

Recommendations for Future Research

The primary recommendation for future research is to include recipients in both
quantitative and qualitative research. Although limited studies include recipients, it is
still uncommon. In order to successfully complete gerontological family research,
elderly members must be included in data collection. Whether the study is on family
caregiving or other important topics such as community programs or the patient-
physician relationship, elderly family members should be included.

In respect to caregiving research speciﬁcally, more information needs to be
obtained about how recipients experience and participate in the care system. In order to
pair what we know about caregivers, research on other care system members needs to be
better established. Without this multi-perspective literature, we will continue to know
substantially more about caregivers and shape programs to meet their needs, instead of
the needs of the entire system.

The informants were all female (mother-daughter pairs). Inclusion of other gender
combinations may have yielded cross-case comparisons and would be beneﬁcial to view
from a feminist perspective. Although ﬁndings on mother-daughter dyads are important,
particularly from a feminist lens, research rarely includes fathers or sons, and therefore
limits our knowledge of such systems. Future research should include male family

members, speciﬁcally including male-female dyad combinations.

143

 

 

A difﬁcult yet important task for researchers will be to better understand the
decision making process relative to family care. Combining the ﬁrst two
recommendations for future research, with a focus on intergenerational processes would
make a substantial contribution to the literature.

Implications for Family Gerontology

Knowledge about the aging adult is expanding in many arenas. Medical
professionals, psychologists, social workers, and anthropologists study aging from their
respective paradigms. Family gerontologists have a unique perspective and
responsibility: to investigate the way aging families organize and respond to
gerontological issues. The family is the core unit in the caregiving system, and family
gerontologists have the unique ability to review the family care system as the unit of
analysis.

Family care systems are complex and vary signiﬁcantly based on ethnic
affiliation, socioeconomic status, and other important factors. Reviewing family care
from a family ecological perspective, rather than from a reductionistic view, complicates
yet expands our understanding of care.

With respect to how these data inﬂuence the ﬁeld of family gerontology, they
support two assertions that are relatively new to the literature. First, dynamics from the
long standing relationship prevail, and caregiver stress may be more a product of that
dynamic than an outcome of care. Secondly, care is a dynamic process that happens over
time and one is not a participant for a deﬁnitive amount of time. Speciﬁcally, the

appreciation of care as a dynamic process validates the family gerontology perspective

144

and necessitates the paradigms used by family scholars. Finally, implications for
outreach and family life education also are central to implications of this study.
Implications for Family Life Education

Family life education is an important and applied use of caregiving research.
Although there are many arenas for education, linking families with information about an
aging society is critical. As adults live longer and the nature of families change,
disseminating information to families and communities is one of the most important tasks
of research.

Scholars know a great deal about aging from a medical standpoint. A good
example of this phenomenon is the number of outreach efforts that exist surrounding
health care screening and prevention of medical conditions. Just as important for families
is the need for information concerning issues they will face at various stages. Family life
education as a ﬁeld addresses many aspects of family life (e. g. ﬁnancial planning). The
process of aging and related changes is inevitable. Families will face the issue of aging
that reaches far beyond the medical aspects of aging. A primary effort in family life
education should be to facilitate discussions among family members about the care
system. Although there are efforts to educate families about durable power of attorney
and other legal decisions, there are aspects of family care that are less formal and require
attention. These data not only offer a speciﬁc way to look at families, they validate the
need to continue learning about care from aging families.

Implications for Marriage and Family Therapy
The key implication for MFTs is the need to integrate aging families into all

aspects of training. Although there is a well-accepted justiﬁcation as to why MFTs are

145

not well versed in working with aging families, speciﬁcally elderly family members,
there is more that can be done. A commonly cited, widely held assumption is that older
adults are not open to seeking mental health services. There may be cohort differences
that make our traditional sources of information less valuable for the elderly, but that
does not mean that the profession has done all it can to access this potentially vulnerable
population.

I assert that the same societal constructs that impede researchers’ likelihood of
including the elderly in their research plagues the ﬁeld of MP T. Many therapists have
told me that their lack of knowledge about the elderly and coinciding fear that the older
adult will not respect them, leads them to shy away from any opportunities to work with
this population. Therefore, one of the ﬁrst tasks of the profession should include
psychoeducation on many levels, including work with therapists in training programs
along with education in families about aging issues. Intergenerational relationships and
recognition of related dynamics are central to clinical work and research. Therefore,
educating families about aging and related issues could be a valuable part of the therapy
process. Although there is a common assumption that the “Depression Era” children will
not seek therapy services, the baby boomer cohort will have a different perspective. The
attitudes about mental health services, utilization, and needs of this generation will differ
from the current cohort, and the ﬁeld must adapt accordingly.

This study provides a strong justiﬁcation for the use of Narrative Therapy with
aging families. It is important to acknowledge creation of stories over time,
acknowledging each members’ story. Although this is done in therapy clinics across the

world, there is little written about using narrative therapy with the elderly. In addition to

146

 

working with aging families and integrating the voices of elderly recipients of care, it
also would be beneﬁcially to examine the issue of congruence from a narrative
standpoint. Speciﬁcally viewing congruence issues from a narrative perspective allows
for shifts in interpretation, from a discrepancy standpoint to framework of varying
realities.

Finally, feminist ideals related to this study in a number of ways. Not only did
feminism guide the methodology and use of qualitative research, feminism heavily
informed the theoretical framework (as discussed throughout chapters one and ﬁve). In
addition to these contributions, feminism is critical in applying this study to the ﬁeld of
marriage and family therapy.

The use of Feminism enables therapists to view power differentials in each
system. Therapists who use the feminist lens note that each member has a voice,
attending to the differences between each member’s voice. The feminist therapist notes
that certain family members have weaker voices and less power than others. Namely
women, children, and the elderly have less power (and consequently weaker voices) than
other family members. This dynamic is central to the way families operate, affecting
decision making, exchange of resources, and other family processes.

With respect to this population, mother-daughter elder care dyads, feminist
concepts relate not only to the dyad itself but to the context in which the dyad is
imbedded. Within the dyad, the feminist therapist would note that the daughter holds
more power than the aging parent, simply as a result of age. This may be perpetuated by
the common exclusion of the elderly family member in therapy sessions. I am cautious to

note the beneﬁts of providing care, citing added power as the role of caregiver can be

147

 

extremely difﬁcult. Caregivers may not want added power that comes as a result of a
parents’ aging process. However, the shift appears to inevitably occur. Veronica noted
this by saying, “I just want my mommy back!!! (laughter)” indicating that she missed the
relationship they once had.

Feminist concepts are central to the family and societal context in which mother-
daughter care dyads are imbedded. In addition to power differentials that exist within
dyads, there are many layers of the same dynamic within families and society. The
feminist therapist would note that the care dyad includes two women who have likely
been oppressed as a result of being female in society. Therefore, a task of the feminist
therapist would be to assess the family system for values and beliefs that perpetuate the
decreased power of females, helping clients to challenge problematic yet well-established
patterns.

Feminism is critical to the study and practice of marriage and family, gerontology,
and qualitative research. Any research on aging families will lead to marriage and family
therapy implications and therefore feminism Should be used as a foundation perspective.
Case Perspectives

Two cases illuminated marriage and family therapy concepts and offer data that
support the integration of research, theory, and practice. Speciﬁcally, Abigail and Beulah
and Sandy and Anna are described from a therapy perspective.

As noted in chapter four, Beulah had been receiving care from her only daughter
Abigail for several years. At the time of the interview, Abigail was newly widowed and
reported enjoying the time she spends taking care of her mother. Abigail speciﬁcally said

that it is easier to take care of her mother’s things than her own. From a systems and

148

therapy perspective, it was interesting to note that Beulah worked hard to ﬁnd tasks for
her daughter to complete. She reported wanting to help her daughter “stay busy,” leading
her to space out her requests. Beulah framed these requests as being needs of her own,
however she seemed to be offering something to her daughter. Although there were
implicit beneﬁts for Beulah (e. g. her daughter visited more often), she reported concern
for her daughter and appeared to appreciate her daughter’s desire to attend more to her
mother than to her own work.

Sandy and Anna seemed very comfortable with their care arrangement. An
interesting dynamic was present where Sandy seemed to experience signiﬁcant beneﬁts
from caring for her mother. Sandy reported being proud of the time she spent with her
mother, namely on weekends and dinner outings, and it seemed to validate Sandy’s
position in the family. She even spoke about her role as a caregiver solidifying her
position in the sibling sub-system, establishing her as a responsible member.

Both of these cases demonstrate the subtle exchange of resources within dyads.
In both cases, daughters seem to beneﬁt from the caregiving role. Despite the theory
used to discuss this case, previous literature on mother-daughter relationships (Allen &
Walker, 2001; Bleiszner, et al, 1999) calls for more research on the state of care
relationships. Researching dyads from a marriage and family therapy framework would
offer an assessment of dynamics (problematic or not), making a contribution to the
literature and the ﬁeld.

Finally, the ﬁeld of marriage and family therapy could make a signiﬁcant
contribution to family science and family therapy by integrating multiple care system

members into therapy. On many occasions, caregivers present for therapy and the

149

therapist pursues individual therapy with them. This model, although sometimes
appropriate, may perpetuate the stress and burden perspective of care as well as limit
therapists knowledge about aging recipients.

Researcher Reﬂections

Although research stretches us in rewarding yet (sometimes) painful ways,
qualitative research requires a signiﬁcant amount of reﬂection through all stages of the
process. As I complete this project, I ﬁnd that I have changed - as a researcher, a
therapist, a female, and even as a family member. Throughout data collection, 1 found
myself humbled by the inforrnants’ experiences. I felt honored to be invited into their
lives and to have them share their stories and emotions. Although as a therapist I
experience this every day, my role as a researcher was notably different. As a therapist,
individuals consult me for my perspective in addressing their concerns. As a researcher, I
was consulting informants about their knowledge and experiences and asking them to
participate in my research.

Prior to this project I had read about conducting research with the older
population and had completed two quantitative studies with elderly participants.
However, I had not done qualitative interviews with the elderly. Throughout the process
of data collection, I was keenly aware of my chronological age. This was often spawned
by informants’ perceptions of my age, in some cases leading them to ask me how old I
was or why someone “so young” was interested in “old folks.” Although I, as a
researcher, was there to learn from them, the mention of age humbled me even more. As I
reﬂect on this, I am struck by the irony of this dynamic and how I made sense of it.

Although one of the assumptions of this study was that as people age, they lose power in

150

society, I had tremendous respect for the recipients (and caregivers) simply because of
their life experiences. Consequently, I saw them as people with tremendous knowledge
and power.

Speciﬁcally, as a researcher, I became aware of the communication among family
members. Although I am privy to varying patterns of communication in my work as a
therapist, I was struck by how covertly this happens. I realized that after decades of
interacting, these dyads had well-established communication patterns that I may not have
been able to discern. This has two primary implications for this work — that over time
families may collaborate in ways they are unaware of and that my interview questions
and perceptions may not have been in tune with such established processes.

AS a scholar, my struggle to integrate the existing research on the developmental
process of aging into a family framework continues. AS I try to learn more about the
aging individual from a family ecological framework, I ﬁnd few resources that do this
well. In my opinion, the medical model of aging continues to dominate what we know
about aging, and I struggle to acknowledge that as a part of the aging process. My
scholarly understanding of family gerontology is enriched yet challenged by my training
as a marriage and family therapist. As a therapist, I study clinical aspects of
intergenerational dynamics. However, as stated before, the MFT ﬁeld is limited in its
offerings with respect to the aging family. I do not claim to be a pioneer in any way. In
fact, I know it has likely been done before, possibly in another ﬁeld. However, given my
resources and training at this point, I struggle as a developing scholar to integrate the

study of aging as we know it, family ecological theory, and family therapy. I am certain

151

my learning curve will be steep, and the good news is I am nowhere near ready to give up
integrating these valuable perspectives.

As a female and a daughter, I was struck by the ways in which the mothers and
daughters adapted over time. Almost all recipients had been caregivers at one time, some
describing years of intense care. I was amazed at how natural and normative caregiving
seemed to be to both caregivers and recipients. It was not questioned, and although not
described as an easy task, in most cases care was not viewed as a burden. In my realm as
a daughter, I found myself thinking about caregiver selection. Having recently lost my
only sibling, I identiﬁed with the only children of the group. Although I do not consider
myself a caregiver, I found myself empathizing with these daughters, who reported some
sense of isolation in caring without the help of a sibling. In truth, I expect that the
experiences of caregiving only children would be somewhat different than that of
caregiving children who had lost a sibling — as a result of sudden shifts in expectations,
elements of loss, and possible resentment of ‘going it alone’ when that had not been the
expectation.

Summary

This study explored the experiences of elderly recipients in the context of
receiving care from their adult daughters. Each case offered unique perspectives and
saturation was reached on several factors. Feminism and family ecology were central to
the theoretical and methodological frameworks. The ﬁndings of the study, although not
generalizable, provide the groundwork for additional research in family gerontology,

marriage and family therapy, and implications for family life education.

152

APPENDICES

153

Appendix A: Study Information Sheet

Study Information Sheet

This project is being done through Michigan State University to learn more about
individuals’ experiences with the care of family members both currently and over time.
Participation will include one interview with an adult child and one, two-part interview
with his/her parent. Each individual that participates will be given a $10 gift certiﬁcate
per interview (total of $30/per family). If you are interested in learning more about this
project, please contact me for more information.

Sincerely,

Whitney Brosi
(517) 377-8798

154

Appendix B: Consent Form (Parent)

Consent Form
Parent / Recipient of Care

You are being invited to participate in a study focused on adult’s experiences with their
adult children and family caregiving. Questions will speciﬁcally be related to the history
of care in your family and your current experiences of receiving care from your
child(ren). The interview questions are about your personal experiences and some may be
unpleasant to answer. Your answers are given on a voluntary basis and refusal to answer
questions will be respected and will not result in penalty. You may reﬁrse to answer any
questions at any time. Participation in this study will involve two audiotaped interviews,
lasting approximately 45 to 60 minutes each. Audiotapes will be kept in a locked cabinet
and only used by the researchers.

Participation in this study is completely voluntary. If you decide to participate, you will
be given two - $10 gift certiﬁcates to a local retail store (one at the end of each interview)
in appreciation for your time. Should you decide not to participate in this study, you will
not be penalized in any way. If you decide to participate in this study, you may withdraw
at any time without penalty. If you decide to participate, your privacy will be protected to
the maximum extent allowable by law.

If you have questions of concerns about this study, please contact the principle
investigator:

Barbara Ames, Ph.D.

Professor

Department of Family & Child Ecology
13F Human Ecology

East Lansing, MI 48824

(517) 432-3324

If you have any questions or concerns regarding your rights as a study participant, or are
dissatisﬁed at any time with any aspect of this study, you may contact — anonymously if
you wish:

Peter Vasilenko, Ph.D., Chair

University Committee on Research Involving Human Subjects

Michigan State University

202 Olds Hall

East Lansing, MI 48824

(517) 355-2180

ucrihs@msu.edu

Your signature below indicates your voluntary agreement to participate in this study.

Signature Date

 

 

Printed Name

 

155

Appendix C: Consent Form (Adult Child)

Consent Form
Adult Child / Caregiver

You are being invited to participate in a study focused on adult’s experiences with their
adult children and speciﬁcally their aging parent. Questions will speciﬁcally be related to
the history of care in your family and your current experiences of providing care to your
parent. The interview questions are about your personal experiences and some may be
unpleasant to answer. Your answers are given on a voluntary basis and refusal to answer
questions will be respected and will not result in penalty. You may refuse to answer any
questions at any time. Participation in this study will involve one audiotaped interview,
lasting approximately 30 to 45 minutes. Audiotapes will be kept in a locked cabinet and
only used by the researchers.

Participation in this study is completely voluntary. If you decide to participate, you will
be given one $10 gift certiﬁcate to a local retail store in appreciation for your time.
Should you decide not to participate in this study, you will not be penalized in any way.
If you decide to participate in this study, you may withdraw at any time without penalty.
If you decide to participate, your privacy will be protected to the maximum extent
allowable by law.

If you have questions of concerns about this study, please contact the principle
investigator:

Barbara Ames, Ph.D.

Professor

Department of Family & Child Ecology
13F Human Ecology

East Lansing, MI 48824

(517) 432-3324

If you have any questions or concerns regarding your rights as a study participant, or are
dissatisﬁed at any time with any aspect of this study, you may contact — anonymously if
you wish:

Peter Vasilenko, Ph.D., Chair

University Committee on Research Involving Human Subjects

Michigan State University

202 Olds Hall

East Lansing, MI 48824

(517) 355-2180

ucrihs@msu.edu

Your signature below indicates your voluntary agreement to participate in this study.

Signature Date

 

 

Printed Name

 

156

 

Appendix D: Direct Quote Consent Form

Consent to Use a Direct Quote
This form gives your consent to use direct quotes, from this interview, for the purposes of
publishing this study. Your identity will be kept conﬁdential and a false name will be
used to protect you. Only the researchers will know the name assigned to you. If at any
time during the interview you would like to share your comments but not have them used
for direct quotes, please indicate this by requesting to go ‘off the record’. You may refuse
to answer any questions at any time. By signing this form you allow the use of direct
quotes in publications of this study and understand that your privacy will be protected to

the maximum extent allowable by law.

By signing below, you give your voluntary consent for the use of direct quotes in the
publication of this study.

Signature Date

 

Printed Name

 

157

 

Appendix E: Methodology Timeline

 

Phone contact
with RoC to
answer
questions &/or
schedule ﬁrst
interview

 

 

 

 

 

 

Screening Process

 

 

 

 

Phone
contact with
caregiver to

answer
questions

&/or

schedule
consultation
interview

 

 

Consultation
Interview with
caregiver
- interview
- ecomap

 

First
Interview

_, with RoC

— interview
- ecomap
- timeline

 

 

 

Second
Interview
with RoC

- interview
- genogram
- timeline

 

 

 

March, 2004
Begin recruitment &
data collection

A

158

H4

No less than 5 days apart;
No more than 11 days apart

July, 2004
Complete ﬁnal
interview

 

Appendix F: Caregiver Consultation & Interview
Orientation to Process:
Consent procedures

What questions can I answer for you about this study, your involvement, and/or your
parent’s involvement? (Review conﬁdentiality of interview content, even between
participants)

Caregiver Interview:

What type of care do you provide to your father/mother?
Speciﬁc tasks?
How much time do you spend on these tasks each week?

Who else is involved in the care of your father/mother? (caregiving ecomap)
What type of care do they provide? How often?

How long have you been providing care to him/her, this type or any other type of care?

How did you become his/her caregiver?
Discussed ahead of time? Other people involved?

What role does your father/mother play in decisions about his/her care?
Does his/her role differ based on the type of decision (i.e. medical care, social life,
living arrangements)?

Has you father’s/ mother’s role in these decisions changed over time?
How? Why?

What do you like most about your father’s/mother’s current care arrangements?
What would you most like to change about his/her current care?

Is there anything else you would like to add about your experience in providing care to
your father/mother?

Closing
I want to thank you for your time. I have enjoyed talking with you and appreciate your

wiliness to share your experiences with me. (If not already scheduled) 1 will be
contacting your father/mother to set up our meetings. If you have any questions, please
feel free to contact me.

159

Appendix G: Recipient of Care Interview (part 1)

Orientation to Process:
Consent procedures

What questions can I answer for you about this study, your involvement, and/or your
adult child’s involvement? (Review conﬁdentiality of interview content, even between
participants)

RoC Interview (part I):

What is a typical day like for you?
What do you enjoy doing? Who do you spend time with? Has your typical day
changed in the past year, past two years? If so, how?

Who, in your family, assists you when you need things?
What types of things do you receive help with?
How do they assist? How long have they been providing assistance? (info. for
caregiving ecomap)

How was the decision made for that person/those individuals to assist in that way?
How were you involved in that/those decisions?

Are decisions made differently based on the kind of decision (medical care, social life,
living arrangements, etc)?
Do you believe that your role in decisions is different based on the topic/kind of
discussion?

What do you like about the assistance you receive right now? What do you dislike?

Do you have any siblings? Are they/have they received assistance from their adult
children or other family members?

How would you compare their experience with yours? If it is different, why do
you believe it is different?

Do you have any friends/peers who are receiving assistance from their adult
children/family members?

How would you compare their experience with yours? If it is different, why do
you believe it is different?

160

Appendix H: Recipient of Care Interview (part 2)

Review of last meeting:

Last time we met, we focused on your recent experiences with family care. IS there
anything else about your experience of receiving assistance from your son/daughter that
you would like to share today? (Speciﬁc prompts will be used)

After we met last time, I started to document your family tree and today I would like to
learn more about the history of your family. I am going to ask questions speciﬁcally
about family care/caring for older generations. I am interested in anything you remember
observing or stories you have heard over time.

RoC Interview (part 2):
When you were a child, do you remember your parents/other adults talking about the
needs of older generations?

What do you remember about those discussions?

Can you think back to a time when one of your family members helped take care of
another family member? Who? When?

How did this story/experience shape your ideas about family care? How was that
decision made in your family? What did you like / dislike about how that decision
was made?

How does that experience compare to your experience in receiving care from your adult
child?

As an adult, were you involved in discussing the needs of older family members with
others?

What do you remember about those discussions? What role did you play?
Have you ever provided care to a family member who was your age or older?
What role did you play? What type of assistance did you provide?

How does that experience compare to your experience in receiving care from your adult
child?

Is there anything else you would like to share about the history of caring for older
generations in your family?

Thank you for your time. I have sincerely enjoyed talking with you and learning about
your family and experiences. (Give gift certiﬁcate & answer questions)

161

Appendix I: Caregiving Ecomap

 

 

 

Participants:
Name
DOB
Describing Relationships

Very Close
Good
Distant ________________
Conﬂicted W
No Relationship ________ \ _\ _____

 

 

 

162

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