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A PHENOMENOLOGICAL STUDY OF THE LIVED EXPERIENCES OF
ADULT CAREGIVING DAUGHTERS AND THEIR ELDERLY MOTHERS
PATRICIA J. CONNELL
A DISSERTATION PRESENTED TO THE GRADUATE SCHOOL
OF THE UNIVERSITY OF FLORIDA IN PARTIAL FULFILLMENT
OF THE REQUIREMENTS FOR A DEGREE OF
DOCTOR OF PHILOSOPHY
UNIVERSITY OF FLORIDA
No accomplishment is created alone. The support, guidance and love of many
people have gone into the completion of this dissertation. I am grateful to the family,
friends, and colleagues who have supported me in so many ways throughout the journey.
I thank those who read and critiqued part or all of the work in progress: Sarah Connell,
Dr. Karen Dow, Barbara Hiser, Rosalie Isom, Barbara Pielack, Susan Sawyer, Catherine
TerBurgh, Marsha Vecchionne, Pat Warner, and Elaine Williams. Colleagues and
friends, they lived the experience of caregiving and their insights were valuable in
establishing credibility. My thanks go to the women, mothers and daughters who shared
their stories of their caregiving experiences.
I am grateful to my doctoral committee: Dr. Felix M. Berardo, Dr. Myrna M.
Courage, Dr. Karolyn L. Godbey, and Dr. Debera J. Thomas. I thank, in particular, Dr.
Godbey for her compassionate guidance and insight, and for keeping my feet to the fire,
and Dr. Thomas for her knowledge, encouragement, and holistic approach to the
phenomenological research process.
I am deeply thankful for the support of my husband, the love of my life, Robert C.
Doyle. He is the wind beneath my wings and my best friend, and has never let me forget
that he wanted a doctor in the house. He has been my typist, reader, editor, and chief
cook and bottle washer during the long hours of seclusion and reflective writing.
TABLE OF CONTENTS
A C K N O W L E D G M E N T S .................................................................................................. ii
ABSTRACT ............... .......................................... vi
1 EV OLU TION OF THE STUD Y ...................................... .. ... ............. .... ....1
In tro d u ctio n ................. ............. ........... ... .............. ........................... .
Phenom enon of Interest ................................................... ....................... ............. 2
Ju stification for S tu dy ........................................................................ .... ..... ...........
C o n tex t ....................................................... 6
Phenom enology ...................... .... ............ ........................ ... ....
Relevance to Nursing .................................. .......................... .. ...............
2 REVIEW OF LITERATURE ................................................... ..... ... ............... 11
Overview ............... ....... ........... ........ .......... ........................ 11
History of Caregiving of the Elderly ...............................................11
C aregiv ing .............................................. .................... ...................... 12
W om en as Caregivers ........................... .. ....... ..... ........................................... 23
Mother and Daughter Relationships in Caregiving across the Lifespan ...................27
Caregiving as Portrayed in Literature of the Day.....................................................29
Overview of Phenomenology as a Philosophy and a Method.............. ................ 32
Experiential Context .................. .............................. ........ ...............3 8
S u m m a ry ......................................................................................................4 0
3 M E T H O D O L O G Y ............................................................................ ................... 42
M ethod of Inquiry ............... ................. ....................... ........... 42
R a tio n a le ............................................................................................................... 4 2
O u tc o m e ......................................................................4 3
H um an Science M ethod ...................................................................... ..................43
H um an C considerations ............................................... ............................. 44
Sam ple and Setting .................. ............................ ... ..... ............ ... 46
D ata Collection and Procedure...................................................................... 47
Interview M ethod ...................................................... .. ...... .. ................49
D ata M anagem ent and Analysis....................................... ....................... 50
T h em e s ................................................................5 2
Standards for Evaluation .................................. .....................................55
4 A N A L Y S IS ........................................................................................................... 5 9
P purpose ..............................................................................59
B background Inform ation.................................................. ............................... 59
P participants ........................................60
Sense of the Whole for the Sample ............. ............................... ...............61
M other-D daughter Profiles ............................................................. ............... 62
D y ad o n e .........................................................6 2
D y ad tw o ....................................................... 6 6
D y a d th re e ..................................................................................................... 6 9
D y a d fo u r ....................................................................................................... 7 4
D y ad fiv e ....................................................... 82
Essential Them es ..................... ............................ 85
Feeling Safe, Comforted and Protected........................ .............85
Feelings of Gratitude, Appreciation, and Desire to Reciprocate .........................86
Concern and Worry for Mothers' Safety ......................................................86
Fatigue in the Constancy of Caregiving ........................................ ............. 87
Com m itm ent to Loving A attention ....................................................... 87
B a la n cin g R o le s ............................................................................................. 8 7
Spiritual Grow th .............................................................................. 87
Summary and Description of Themes ...........................................88
Phenomenological Dimension ...................................................... 91
Phenom enological D description ...................................................................92
5 D ISC U S SIO N ............................................................................... 95
O v erview ................................................................ .. ............... ........ 95
Relevance and Significance of the Study .................................. ...............98
Comparison with Recent Literature ................... ............................................ 100
Implications and Recommendations for Nursing Practice, Education and
R research .......................................................................................................103
N u rsin g P practice .......................................................................................... 10 4
N using Education .................. .................. .......... .... .... ... ........ .... 105
N using R research ........................ .................. ............... ................ 107
Personal R elections ................................. ............................ ............... 110
A ASSESSMENT OF ADLS, IADLS, AND MEDICAL CARE NEEDS ..................112
B MINI MENTAL STATUS EXAMINATION (MMSE).................. .................113
C DEMOGRAPHIC DATA SHEET ................................................................ 117
D INFORMED CONSENT TO PARTICIPATE IN RESEARCH......... ............. 118
R E F E R E N C E L IS T ................................................................................ ................ .. 124
BIOGRAPH ICAL SKETCH .............. ....................................................................... 138
Abstract of Dissertation Presented to the Graduate School
of the University of Florida in Partial Fulfillment of the
Requirements for the Degree of Doctor of Philosophy
A PHENOMENOLOGICAL STUDY OF THE LIVED EXPERIENCES OF ADULT
CAREGIVING DAUGHTERS AND THEIR ELDERLY MOTHERS
Patricia J. Connell
Chair: Karolyn L. Godbey
Major Department: Nursing
Advances in medical technology and improved standard of living have
contributed to an increase in the elderly population. Aging is often accompanied by
diminished physical and/or mental capacity. Families, most often adult daughters,
provide the majority of informal caregiving. The largest cohorts of elderly are women.
Studies of informal caregiving have focused on caregiving of the elderly who are
cognitively impaired and have concentrated on the tasks, burdens and socio-economic
impact of informal caregiving in families. This human science phenomenological study
explored the meaning and significance of the caregiving, care receiving experiences of
adult daughters and their elderly, physically frail mothers. Themes emerged from the data
that provided a structure to describe the day-to-day experiential dimension for both
mothers and daughters. For mothers the themes were feeling safe, comforted and free
from worry within the safe haven created by their daughters' loving nurturing, attentive
care and gratitude, appreciation and a yearning to reciprocate for the care they received.
Daughters were committed to protecting and preserving their mothers physical, mental
and emotional integrity as a person and as their mother. Daughters experienced fatigue in
the physical and emotional constancy of caregiving and in balancing of their roles as
daughter and caregiver. They felt unprepared for the expectations of caregiving and
uncertainty about future care needs as their mothers' declined. These elements of
caregiving were overshadowed by daughters' commitment to providing attentive, loving
care and the spiritual meaning and growth they experienced. Understanding of this
experience and learning to listen to clients' stories can enhance nurses' assessment of the
needs of the elderly and their caregiving daughters and help them to normalize the
caregiving experience. Future research is needed to uncover ways to support family
caregivers and in more diverse populations, economically, culturally, ambivalent or
conflicted mother daughter relationships, and among the frail elder care receivers.
EVOLUTION OF THE STUDY
We sat on the edge of the bed together, the day's end ritual drawing to a close. I
gently stroked her bent arthritic spine with the loving intent to ease the pain from the
hours spent in immobility, moving only from the chair to the bathroom, to the dining
table and back again to the chair. Her physical care for this day was complete. She
relaxed under the soft touch of my hand and suddenly said: "You are such a good
mother." I was jolted out of my reverie to reply: "Excuse me, Mom." Our eyes met, we
laughed spontaneously and heartily, embraced and in that instantaneous moment
transcended the mundane tasks of caring and entered into a special moment of
togetherness--a mutual caring, compassion and recognition. This moment was not one of
role reversal but one of experiencing the meaning of caregiving and receiving. Several
days later, I shared this experience in a qualitative research class discussion in
phenomenology. The class participants were visibly moved, and shared recognition of
"having been there." Each and every one in turn, shared a similar poignant lived
experience in caring for a mother, grandmother, or other significant maternal figure in her
life. We shared a strong feeling of being an invisible caregiver (Bowers, 1987) who
received little attention or recognition as a significant care provider. Each felt she was
often excluded from research studies because she was not a high risk, profile caregiver.
The research literature has primarily focused on the measurable tasks and stresses
of caregiving, in particular, for the elderly who are mentally impaired. Health care
policies reflect a stark absence in considering the need for support of the invisible
caretakers and the frail elderly. The seed for this inquiry into the meaning of informal
caregiving and the experience of aging mothers and adult daughters as a special
experience of caregiving began to germinate with that class discussion. My personal
journey into the experience of informal caregiving began ten years ago, as my then
eighty-year-old mother began to experience decline in mobility and evidenced increasing
physical frailty. The movement into caregiving was evolutionary. It was not an overnight
experience or one time event.
Phenomenon of Interest
The phenomenon to be explored is the experience of caregiving by mid-life
daughters of their physically frail, mentally competent mothers in a shared living context.
The experience of informal caregiving is not a new phenomenon. From the beginning of
humankind, persons have cared for others in need. Informal caregiving for an increasing
number of frail elderly by a decreasing number of adult children is, however, a recent
phenomenon. Within the past century, profound socio-economic changes have taken
place altering the patterns and meanings of elder caregiving. Family structures today are
often more diverse and complex due to divorce and remarriage. Improved economic and
social status has given senior citizens greater options and mobility in their retirement
years. A hundred or even fifty years ago families, both nuclear and extended, lived in
proximity and had kinship support; families are now often spread geographically. Elders
in need, once cared for by a kinship of family, are now relegated to being cared for in a
formal settings, such as, assisted living facilities and nursing homes. There has been a
shift from a rural to an urban economy and way of life and from an industrial to a
technological society. Retirement has become established as a social institution.
The advances in medical technology of the twentieth century and an improved
standard of living have prolonged life and given rise to a seniors' boom. There is a rapid
growth in the oldest old (over 85 years of age) population (U. S. Bureau of the Census,
2000). Diminished physical and/or mental capacity often accompanies longevity. The
resultant inability of the elderly to care for their functional and instrumental needs is of
salient interest to adult children. It is estimated that 75% to 85% of all care provided for
the elderly takes place within the community (Langner, 1995). It has been well
documented that adult daughters provide the majority of informal eldercare and that the
largest cohorts of elderly care receivers are women (Brody, 1981; Himes, 1992,
Horowitz, 1985; Neundorfer, 1991; Stoller, 1983; Stone, Cafferata & Sangl, 1987).
Women have traditionally been expected to assume and have accepted this role as
nurturing caregivers. Daughters, in particular, are increasingly being called upon and are
assuming caregiving responsibilities for their aged mothers. An only daughter, an
unmarried daughter, daughters who are not employed, and daughters who live in close
proximity are more likely to become caregivers for aging parents (Chadorow, 1978;
Fingerman, 2001; Himes, 1992). The roles of women, however, have changed in
dramatic ways since the beginning of the century. In today's world, the majority of
women work outside the home or have professional careers. Women juggle being wife,
mother, worker, and elder caregiver. Changes in traditional family structures include
decreased birth rates, increased mobility, divorce, single family homes, and remarriage
that, when combined with an improved standard of living, are impacting the ways in
which life is experienced. Notable are the advances in scientific and medical technology
that have contributed to increased longevity. Some of the challenges of longevity are
issues of financial security, new demands on health and long term care and
Nuclear family members are spread across the globe. Mothers have often moved to
be in closer proximity to a daughter or to reside with her and her family. In addition,
adult daughters are often caught in the middle, having borne children at a late age, and
are simultaneously caring for dependent children and a parent or parents (Bowers, 1987;
Brody, 1981; Himes, 1992). In the western societal milieu, paid work is more valued than
the unpaid labor of childcare and elder care. The latter, caregiving of the elderly is
particularly devalued, as there is no productive goal associated with it. Child-care, on the
other hand, has a laudatory goal in the nurturing and bringing of the child to adult
productivity in a society. The experiential dialogue between adult daughters and their
mothers, as the physical dependence of the mother increases, exists and is experienced in
a different milieu than it was at the turn of the 20th century. Changes in all areas of the
human experience are accelerated. Informal caregiving is affecting family life, the
economy, health care services, and health policies (Kart, 1996; Quadagno, 1999).
The effects of scientific and technologic advances continue to increase longevity in
a society and culture that does not value or give meaning to "being aged." While there are
many in their golden years who remain active, vibrant, healthy and live independently
there are others, some relegated to institutional care, who are burdened with multiple
physically and mentally disabling disorders. In between these two ends of the scale of
"being aged" is an ever growing group of elderly individuals, frail yet mentally
competent, who are seeking assistance from their adult children, most often a daughter or
daughter-in-law. With the focus in health care moving from acute care settings to
community settings, the needs of this in between group of elderly and their care providers
are of interest and concern for nurses. Nurses in the community are in a central position
to observe, describe, and understand the experience of the aged individual and the adult
caregiver in their natural environment. These experiences of caregiving and aging are
significant human events worthy of description and interpretation. The articulation of
these experiences and the concern by nurses can contribute to nursing science and
practice. The outcome can improve the quality of life for both caregiver and care
recipient in a positive way (Paterson & Zderad, 1988).
Justification for Study
Informal caregiving is a complex, evolutionary, and intersubjective life experience
wherein connections are co-created (consciously or unconsciously) and expressed in
behaviors and actions of concern, responsibility, and attention (Mitchell, 1990). Issues
related to the concept of informal care and caregiving have become the focus of interest
and research for social scientists, feminists, political policy makers, and health care
professionals. Research has concentrated on the chores caregivers perform (Abel, 1986,
1990; Horowitz, 1985), and the stresses and burdens of caregiving (Bull, 1990;
Montgomery, Gonyea, & Hooyman, 1985; Zarit, Reeves & Bach-Peterson, 1980). Other
areas of study have included the roles that caregivers assume and are assigned (Franks &
Stephens, 1992); and the socio-economic and ethical impact of caregiving (Sharlack,
Sobel, & Roberts, 1991; Sharlack, 1994; Walker, Martin & Jones, 1992). What is needed
in research is an exploratory study of meaning and significance of the day-to-day
experience of informal caregiving of dependent aging parents by their children (Graham,
1983). In looking at the personal accounts of caregiving we may expand an understanding
of how it is lived day-to-day (Futrell, Wondolowski, & Mitchell, 1993).
On the superhighway of technology and computer chip information, statistics,
measurements and outcomes, the personal lived experience of the frail elderly and their
caregivers has been neglected and is little understood. The prevailing research paradigm
provides a measure of the labor intensiveness and stress of caregiving. It supports the
labeling of the elderly as unproductive, dependent, and as a burden by a society in which
they have long been contributory and independent members. A stereotypical image of the
elderly as old, crippled, the prisoners of inevitable decline is deepened in the collective
unconscious of our society. Policies are written, programs implemented, and
interventions employed by health care practitioners, including nurses, with little or no
understanding of what the lived experience is for the care receiver as well as for the
caregiver within the context of their history, relationship, language and familial culture.
According to Wilson and Hutchinson (1991), when nursing research provides an
understanding of the human response, it advances nursing practice and facilitates the
discovery and development of interventions in a search for ways to better serve those in
our care. It is that fresh insight from nursing research that adds to the knowledge of the
phenomena, and that specific nursing interventions may be identified for clinical practice,
nursing education, and future studies.
Analysis of the day-to-day experiences of caregiving is intended to discover the
subjective meaning of the living of the experience as separate from the objective
components (e.g., the tasks) of the situation or circumstance. My interest in the
experience of the mother-daughter dyad in caregiving evolved from professional and
personal experience. Caring for the aged and their families in long term care, in home
health, and in faculty practice at a university community nursing center for the elderly
and disabled, daughters always wanted to "bend my ear," so to speak. They were eager to
tell their stories and I had an intuitive sense that they were striving to find personal
meaning in the whole of their subjective experience. This was true, also, of mothers who
were mentally competent, although their revelations of self were more cautious and
guarded. Sharing these experiences with nursing colleagues confirmed my clinical
observations and intuition. For many of my colleagues this was a professional and
personal experience. They confirmed that mothers and daughters in a dyadic informal
caregiving experience were searching for meaning that went beyond the "doing for"
tasks; a meaning, the understanding of which, bore influence on their perceptions and the
outcomes for quality of life. If there were more information and a greater understanding
about this phenomenon, then it would be possible for nurses to assist caregivers and care
recipients in creating environments and interventions that addressed genuine concerns
and life experience.
I experienced caring for an aged mentally competent mother with increasing
physical care needs secondary to multiple fractures associated with osteoporosis and who,
for twelve years, had lived either adjacent to or with me. During this period my mother,
in spite of physical limitations, seemed to maintain a high level of health and well being.
I found myself questioning: "Are there differences in the experience of caregiving? How
do these affect the overall health and wellness of the caregiver and care receiver?" These
professional and personal experiences influenced the framing of this study. My
professional and personal knowledge and experience provided an extensive data base on
caregiving the elderly. On the other hand, it placed an imperative to be alert to any bias
that might hinder analysis of the data in a new light and from a different perspective.
The objective of this study is to gain a deep and thorough understanding of the
experiences of mothers and daughters who live together. The study focuses on the
subjective existential meaning of the phenomenon that occurs when daughters care for
aged mothers with physical rather than cognitive decline. Through phenomenological
exploration, this study seeks to discover the meanings at the heart of this unique
relationship of mothers and daughters to distinguish and describe similarities and
differences that create the day-to-day burdens or rewards.
Phenomenology is both a philosophy and a research method. As a philosophy,
phenomenology is a particular way of approaching the world and apprehending lived
experience (Merleau Ponty, 1962). As a research method, phenomenology is a rigorous
process of reexamining what Husserl (1962) termed "the things themselves." The
question of phenomenological inquiry is about the meaning of human experience and
asks, "What is it like?" Phenomenology is a way of thinking about what life experiences
are like for people (Powers & Knapp, 1995) and is primarily concerned with interpreting
the meaning of these experiences. Phenomenological research "explores the humanness
of a being in the world" (Bergum in J. Morse, Ed., 1991, p. 55). Bergum refers to the
phenomenological research method as an "action-sensitive-understanding" (p. 55) that
begins and ends in the practical acting of everyday life and leads to a practical knowledge
of thoughtful action. Phenomenological research is an introspective human science, the
intent of which is to interpret and to understand as opposed to observing, measuring,
explaining, and predicting (van Manen, 1984). The intention is to go beyond the aspects
of life taken for granted and "to uncover the meanings in everyday practice in such a way
that they are not destroyed, distorted, decontextualized, trivialized or sentimentalized"
(Benner, 1985, p. 6). To answer the question, "What is it like?" and to enter into the
dialectic of the study and fully portray the reality of the experience, a process of
phenomenological reduction is utilized. All previous or a priori knowledge gleaned from
clinical practice, the study of gerontology and from personal experience is suspended or
bracketed. Munhall (1994) says that "unknowing" may be a better term. She describes
bracketing as the position of standing before an experience with an attitude of
unknowing, even if and especially if one has lived the experience personally in order to
allow multiple different possibilities to emerge. Personal experience is the material of
beginning from which to work. The investigator's personal experience, beliefs, and
knowing, according to Husserl (1962), are suspended or bracketed in order to study
realities of the natural world.
Relevance to Nursing
Nursing research as a scientific process validates and refines existing knowledge
and generates new knowledge (Burs & Grove, 1997). Nursing research directly or
indirectly influences clinical nursing practice. The metaparadigm of nursing is a global
and holistic umbrella under which the predominant concepts of nursing-persons,
environment, health, and nursing-are related. The domain of nursing is, thus, conducive
to multiple research paradigms as complementary and commensurate with each other in
the development and discovery of nursing knowledge. Knowledge development in
nursing reflects an epistemological shift toward inclusion of qualitative methodologies
and research methods. These holistic, qualitative approaches are inclusive of process,
patterns, and the meaning of the lived experience of persons, their environment, and
health. Utilization and integration of qualitative methods with traditional quantitative
methods enhance knowledge and expand methodological possibilities (Gubrium, 1991;
LoBiondo-Wood & Habec, 1998; Monte & Tingin, 1999). Lewis and Meridith (1988)
refer to this as a "caring matrix" that is inclusive not only of the linear variables as
defined by professionals but in contextual and historical reality of the caring
relationships. According to Wilson and Hutchinson (1991), when nursing research
provides understanding of the human response, it advances nursing practice and
contributes to the development of interventions that benefit the client.
Phenomenological research is, thus, relevant to the discipline of nursing as it
articulates subjective and personal lived experiences. This method has been called "the
science of examples" (Munhall, 1994, p. 18) as readers can identify a deeper meaning or
structure in the phenomenon being studied. Van Manen (1990) states: "Doing
phenomenology, then, is 'in the service of the mundane practice of [nursing]: it is a
ministering of thoughtfulness.' The results of phenomenological research provide a
'knowing how to act tactfully in [nursing] situations on the basis of carefully edified
thoughtfulness' (p. 12). The value of the phenomenological method or human science
approach is in the ability to uncover life processes "for qualitatively identifying
intervention strategies and evaluating outcomes" (Morse, Penrod, & Hupcey, 2000,
p. 125). In addition, it is valuable in the generation and enhancement of theory and as a
precursor to the development of quantifiable hypotheses and outcome research
(LoBiondo-Wood & Habec, 1998; Munhall, 1994).
REVIEW OF LITERATURE
The growth in elder care literature in the past 30 years has been in response to the
rapidly expanding aging population. This literature review is presented in eight sections:)
the history of caregiving of the elderly, 2) caregiving, 3) women as caregivers, 4) mother
and daughter relationships in caregiving across the life span, 5) caregiving as portrayed in
the literature of the day, 6) an overview of phenomenology as a philosophy and a method,
7) the experiential context of the study including personal and nursing experiences, and
History of Caregiving of the Elderly
The twentieth century has witnessed major shifts in the population age patterns that
have significantly affected generational role expectations. Notable is the fact that the
American population is living longer. The population of those over 65 years of age is
expected to grow from 31 million in 1990 to approximately 53 million in 2020. This
would account for 18% of the population with the greatest increase in the age cohort over
85 years of age and the majority of survivors to old age being women (U.S. Bureau of the
Census, 2000). Prevalence of degenerative and chronic diseases often accompany normal
aging. These conditions bear with them an increased frailty, dependency and need for
assistance with daily activities indispensable to maintain independent living.
Research has demonstrated that the major human resource for the support and
maintenance of the frail (physically weak or disabled) elderly population is the family
with 82% of the primary caregivers being identified as women (National Family
Caregivers Association (NFCA), 1997); Brody, 1981; Himes, 1992; Horowitz, 1985;
Neundorfer, 1991; Stoller, 1983; Stone, Cafferata & Sangl, 1987). Of the 82% of women
caregivers, 29% of the primary informal care providers are daughters (Stone, Cafferata &
Sangl). As the frail elder family member grows older the intensity and the need for
informal care, primarily determined by physical and mental ability for self-care,
The research on intergenerational caregiving has primarily investigated the
characteristics, content, and impact of caregiving. The Health Care Financing
Administration 1982 Long Term Care Survey provided classification guidelines for long-
term care facilities and Medicare providers for service reimbursement (Kart, 1996).
Caregiving tasks are divided into specific activities of daily living (ADLs) and
instrumental activities of daily living (IADLs) (Horowitz, 1985; Stone, Cafferata &
Sangl). In addition, there are activities related to specific medical care needs, such as
dressing changes and administration of injections.
Caregiving is defined as an act of providing direct care. This usage is derived from
the modern use of the word "care" as "a painstaking or watchful attention (Mish, Ed.,
2002). Griffin's (1983) analysis of the term "caring" identifies three characteristics of
meaning: attention to or concern for, responsibility for, and attachment to. Noddings
(1984) equates care with the word engrossmentt" which is synonymous for "attention."
"Tending" is the term used by Graham (1983) as expressive of caring. Caregiving is an
evolutionary human life experience within the circle of health-illness wherein
connections are co-created and expressed in actions of concern, responsibility, and
attentiveness (Mitchell, 1990).
Familial caregiving of the elderly as an experience is multidimensional. It involves
responses to the stressors and changes in life patterns for the caregiver and care-receiver
as the dependency needs of the frail elderly family member increase. "Informal
caregiving" is terminology that has emerged with aging studies. As a concept, it has long
existed within families and societies. The emergence in our modern day of formalized
health care systems has influenced a reconceptualization of informal intergenerational
In order to understand the recent concept of informal caregiving, the origin of the
words "informal," "care," "give," and "caregiving" need to be explicated. According to
the dictionary (Mish, Ed., 2002), "informal" is an adjective meaning marked by the
absence of formality or ceremony; being characteristic or appropriate to ordinary; casual
or familiar use. Etymologically, the word "care" is a noun derived from the Old English
(cam) and the Gothic (kara) and means, "lament, sorrow, suffering of mind, grief."
Shipley's (1945) Dictionary of Word Origins traces the meaning of sorrow to that of
trouble as in "troubling yourself," and thence to "taking care" or "being careful." A
common synonym used is "concern." In other languages, Dutch, German and
Scandinavian, the word for care is equivalent to the term for worry (van Manen, 2002).
"The term "care," thus, possesses the dual meaning of worry, trouble, anxiety, and lament
on the one side, and charitableness, love, attentiveness, benefice on the other side" (van
Manen, 1990, p. 58).
The verb "give" is derived from the Scandinavian "giva" and Old English "giftan"
meaning "to make a present of; to accord or yield to another; to grant by legal action; to
administer as a sacrament, medicine, to convey to another" (Mish, 2002). The use of the
nouns caregiver and caregiving relate to the person who provides direct care and the act
of providing direct care respectively.
The nursing literature reflects caring as integral to professional practice
(Henderson, 1964; Gastmans, 1999; Leininger, 1981; Nightingale, 1976). Watson (1979,
1985) defines caring as a moral ideal where the end is protection, enhancement, and
preservation of human dignity; a human transaction that takes place between two persons
that affects health, healing, and well-being. Watson's theory of caring has provided a
base for further research by nurses into the concept of caring (Bottorf & Morse, 1994;
Griffin, 1983; Langner, 1993, 1995; Swanson, 1991, 1993).
Swanson's research on the theory of caring identified five categories of the caring
process: knowing, being with, doing for, enabling, and maintaining belief. Caring is thus
a way of relating toward another that is nurturing and for whom one feels a personal
sense of commitment. In a similar vein, Gaut (1984) regards caring as an individual
concern for another, individual responsibility for or providing for at some level, an
individual regard, fondness and attachment. Others (Archbold, 1983; Boykin &
Shoenhofer, 1993; Boykin & Winland-Brown, 1995; Cartwright, Archbold, Stewart, &
Limandri, 1994; Gaut, 1984; Roach, 1987) have addressed the qualities of caring
behaviors and caregiving as enrichment, mutuality, compassion, confidence, conscience,
and commitment. Warren (1994) differentiates feeling cared for from being cared for or
being cared about. Feeling cared for means having one's needs met without asking. Being
cared for or about implies a service or perfunctory act of care.
Caregiving is defined by Bowers (1987) as the meaning or purpose a caregiver
attributes to a behavior rather than by the nature or demand of the behavior itself. This
would include observable behaviors, mental activities and shared understandings. Thus, a
caring behavior may have more than one purpose simultaneously, such as the preparation
of a meal may also be an act of caring and attentive love, not just a task to be done.
Bowers further identifies categories of caregiving as anticipatory, preventative,
supervisory, instrumental, and protective.
Caregiving of the frail elderly, is according to Gubrium (1991), a mosaic not only
of measurable variables but of the "distinct and complex interpersonal experiences" (p.
17) of the real world of the persons involved.
Throughout the literature, there is evidence of mutual and shared meanings of the
term caregiving as it relates to informal intergenerational caregiving. Its usage, however,
ranges from a complex combination of tasks (Greene, 1991) to Watson's (1985)
transpersonal concept. A universal definition and conceptualization of intergenerational
informal caring and caregiving is absent in the literature. While informal caregiving is
labor intensive and socially necessary work, it is more than domestic labor performed for
another (Abel, 1990). There is an increasing awareness that informal caregiving can be
more than the instrumental "doing for" or hands on care which is more commonly
recognized as caregiving. Caregiving outcomes may be fulfilling and rewarding as well
as burdensome (Noddings, 1984; Boykin & Winland-Brown, 1995). The phrase 'informal
caregiving' implies a process of attending to that includes doing for and with the care
receiver (Bottorf & Morse, 1994), and presence in an interpersonal human caring
relationship (Swanson, 1991, 1993; Watson). Mitchell (1990) conceptualized the
integration of the day-to-day lived experiences of later life, within Parse's simultaneity
theory of human becoming, as "co-creating cherished connections while living with the
limitations and opportunities inherent in the unencumbered changing of familiar views"
(P. 32). This is congruent with Watson's (1985, 1999) conceptionalization of human
caring as an inter-subjective response to health-illness conditions accompanied by
knowledge of one's personal power, limitations and possibilities that involve will, a
commitment to care, caring actions and consequences. The outcome is the creation of
new perspectives, which Bowers (1987) presents as more important than the instrumental
"doing for" tasks.
Extensive review of the caregiving literature does not provide a singular, clear
definition of informal caregiving of the elderly. It is implied that informal elder care is
the unpaid and often-invisible labor provided by family or friends to assist an elderly or
aged person with at least one activity necessary for living life on a day-to-day basis.
Integrating the etymology of words and the concepts of caring in the literature, "informal
caregiving" is defined as an evolutionary intersubjective holistic human life experience.
Experienced within the matrix of health-wellness-disease-illness connections are co-
created (consciously or unconsciously) and expressed in behaviors and actions of
concern, responsibility, and attentive love (Allen & Walker, 1992). In contrast, formal
caregiving is classified as paid services of licensed or unlicensed strangers provided
under the umbrella of a formal health care system (Abel, 1986, 1991; Brody, 1981;
Himes, 1992; Horowitz, 1985; Stone, Cafferta & Sangl, 1987). Formal caregiving may be
open or closed. Closed formal caregiving is provided in acute care and long-term
facilities. Open formal caregiving is community based and encompasses all the medical
and social services that allow the elder to remain at home. These services support
informal caregiving and avoid premature or unnecessary institutionalization (Dunkle &
Kart, 1996). Formal and informal caregiving may occur independent from or as
complementary to each other.
Gendron (1994) provides a metaphor of the warp and the weft of a tapestry that is
useful in examining caregiving. The warp is the acontextual structure of the day-to-day
tasks involved in caregiving. The tasks require knowledge, skills, time commitment, and
physical presence in varying degrees of labor intensiveness and stress. The warp is the
attending to specific needs related to the functional and instrumental activities of daily
living; and is oriented to protection, preservation, and physical nurturing. The weft of the
tapestry is the weave that imbues meaning into the caregiving situation. It includes the
attributes of mutuality, attentive love, and compassion that enhance human-to-human
caring and reciprocity. The warp is the horizontal continuum of events measurable by
time and quantifiable tasks; and the weft is the contextual dimension that portrays the real
life meaning. Both dimensions can take place simultaneously and are essential to the total
experience of caregiving.
Caregiving is conceptualized by Pearlin (1992) as a career, a "panoply of changes"
(p. 647) occurring during the caregiving period that reshapes and restructures the self-
concept of the caregiver. His conceptual model identified caregiving career stages as
residential, institutional placement and bereavement. Bowers (1987) referred to caring for
an aging parent as "invisible work" (p. 24) and defined caregiving from the perspective
of the interpretation and perception of the situation, that is, by the meaning and purpose
of the caregiving event. Employing a grounded-theory method, she categorizes
caregiving conceptually into five distinct but overlapping dimensions: anticipatory,
preventive, supervisory, instrumental and protective. Anticipatory caregiving informs the
decisions and actions of the caretaker based on possible needs. Preventive caregiving
involves the activities directed to hindrance of physical or mental deterioration.
Supervisory care is a purposeful involvement in care that arranges for, checks up, makes
sure, sets up and checks out; and may or may not be recognized by the parent and by
others as caregiving. Instrumental caregiving is recognizable as actual hands on care and
is the aspect of elder care most identified as the subject of research studies. Protective
care is perceived as primarily preserving the parent's self image, insulating them from the
inevitable consequences of physical and mental deterioration. Protection may be a simple
ignoring of an inconsequential error or forgetfulness. Or, it may be the acknowledgment
of an event or pattern of events and reconstructing the meaning or significance of it. For
example, forgetting is insignificant in and of itself however, a general pattern of
forgetfulness may have an inferred negative connotation of early senility or dementia.
Traditionally, instrumental or hands-on care has been the most identified as the
indicator for studying caregiving of the elderly and aged. There is, however, an
increasing recognition that the definition of caregiving is multidimensional. The
definition of caregiving includes: level of physical and instrumental functioning, medical
condition, frequency and number of tasks required of the primary caregiver, emotional
dependency and the perception and interpretation of the caregiving ecology by both the
caregiver and the care receiver (Malonebeach & Zarit, 1991).
This preponderance of concentration on the 'doing for' activities of caregiving has
yielded a significant body of research literature on the burdens of elder caregiving. The
major research focus has been to analyze the impact of caregiving on family care
providers. Specific tasks or outcomes most often operationalize caregiving variables.
Studies have shown that the caregivers experience an array of physical, emotional, and
economic challenges. Archbold, Stewart, Greenlick and Havarth (1990) studied
caregivers and care receivers (N=78 dyads) to determine whether mutuality and
preparedness reduced caregiver role strain. Mutuality is defined as the caregivers' ability
to find reward, meaning, and reciprocity in caregiving an impaired person solely by
his/her existence. Preparedness is defined as the caregivers' confidence in their abilities
as a caregiver to meet the needs of the care receiver. Controlling for other common
variables, such as, gender, spouse, level of cognitive and functional impairment of the
care receiver, and the amount of direct care provided, that relate to caregiver role strain,
they found that mutuality and preparedness account only partially for amelioration of
caregiver role strain. Other factors were economic burden and conflicting roles.
Bull (1990) in a study of post hospitalization factors and caregiver burden (N=60
dyads) suggests that higher levels of income, social support, and functional ability of both
the caregiver and care receiver diminish the perceived burden of caregiving. Beach
(1993), in a quasi-experimental descriptive study using features of the grounded theory
method, interviewed a convenience sample of 10 caregivers (80% women; average age-
62). Informants were asked to describe their caregiving experiences with reference to
specific items, such as, previous patterns of caregiving, family roles, responsibilities, and
employment problems associated with caregiving. Informants reported relinquishment of
personal activities, reluctance to solicit help from other family members and difficulty in
balancing work and caregiving. Some significantly reduced their employment or ceased
to work altogether.
Using in-depth interviews of 94 employed caregivers, Scharlach (1994) found the
negative aspects of combined caregiving and employment to be out weighed by the
positive aspects of a sense of accomplishment. In a study of 354 employed caregivers,
Scharlack, Sobel, and Roberts (1991) previously found that caregiver burden was more
adversely affected by conflict between the employing institution and the caregiver than
the fact that the caregiver was employed. Employment when allowing for flexibility was
shown to be a positive benefit for the caregiver.
Montgomery, Gonyea and Hooyman (1985) provide an understanding of the
difference between the subjective and objective burdens of care giving. Interviewing 80
subjects involved in elder caregiving they found that while subjective and objective
burdens were correlated they had different predictors. Younger age and necessity of
employment for income of the caregivers were the best predictors of subjective burden.
Tasks of caregiving that confine the caregiver in terms of time commitments and
geographic location were the best predictors of objective burden. Time commitment was
also a predictor of the burden in elder caregiving in a study by Stoller and Pugliesi
(1989). Other roles, such as, wife and mother, outside the family were found to be
associated with improved caregiver well-being. Zarit, Reever and Bach-Peterson (1980)
found that subjective perception of burden dissolves informal care arrangements and
contributes to institutionalization more often than does the level of objective care
Depression is often a variable measure of caregiver burden. Neundorfer (1991), in a
survey of literature on caregiver health, reported that the caregiver's cognitive appraisal
of the care receivers' problems was a significant predictor of depression and anxiety but
not of health outcomes for the caregiver. Others (Brody, 1981; Killeen, 1990) report an
association between caregiving and health problems of caregivers. In the analysis of data
from the first wave of a longitudinal study of 307 caregivers, Stommel, Given and Given
(1990) found depression to be a dominant predictor of measured caregiver burden. A
comparison of the mental and physical health of caregivers (spouses, grandparents and
adult children) by Strawbridge, Wallhagen, Shema and Kaplan (1997) found a correlation
between caregiving and poorer mental health. Only the grandparents showed a correlation
with poorer physical health. In a previous study, Strawbridge and Wallhagen (1991)
studied conflict as a component of elder caregiving. Path analysis showed a significantly
higher perception of burden and poorer mental health among subjects experiencing
family conflict than those who were not (n=100).
Caregiver burden and well-being may be the opposite sides of the same coin (Stull,
Koslowski & Kercher, 1994). A growing research interest in the subjective experience
and in the perceived satisfactions and rewards/benefits of caregiving is beginning to
appear in the more recent literature. In a critical review of the literature on gain in the
experience of caregiving to the elderly from 1974 to 1996 Kramer (1997) identified 47
studies. The criteria for inclusion were the need for assistance with one or more
functional or instrumental activities of daily living, cognitive, emotional or physical
impairment of the care recipient, replicability of the study, generation of empirical data
and, analysis of the correlation between gain and other variable in a caregiving context.
Twenty-nine met the review criteria. Nineteen were specific to caregiving of the
cognitively impaired and seven were unspecified. None of the studies addressed the
question of benefit for the care receiver.
The role experiences of women (n=106), as caregivers, wives, and mothers, studied
by Franks and Stephens (1992) provided strong evidence for feelings of adequacy in care
giving as a mediating effect on affective well being, as measured by the Bradburn Affect
Balance Scale, particularly in the roles of wife and caregiver. Question was raised as to
whether role stress and role adequacy are antecedent to or a consequence of the affective
states measured. The conclusions recommended a need to examine caregiving in context.
Stephens, Franks and Townsend (1994) examined role specific stresses and rewards as
predictors of well being (physical health, negative and positive affect, and role
satisfaction). They also examined the effects of accumulation of role stresses and rewards
across the 3 roles of mother, wife, and caregiver. Findings indicated that caregivers'
experiences in multiple roles could be either a detriment or enhancement to physical and
mental health. An accumulation of role rewards being related to higher reports of well-
being and an accumulation of role stresses was related to reports of poorer well being.
A theoretical model of family social support and internal system resources was
tested by Fink (1995) to explain family strain and well being of elder caregivers.
Although a small non-random sample (n=65), the findings show that when adequate
resources are present, strains within families do not of necessity have a negative effect on
their well being. There was also support for previous research that positive perception of
available resources and belief in life changes as a challenge can promote the maintenance
of well being even in the face of stress in the caregiving situation.
Utilizing the construct of meaning in caregiving and the stress model of Pearlin
(1992) Noonen and Tennstedt (1997) examined the association between meaning in
caregiving and the psychological well being of informal caregivers. Meaning in
caregiving is defined as the positive beliefs a person holds about the self and the
caregiving experience from which some gain and benefit are constructed. They found
meaning in caregiving was positively related to caregiver self-esteem and negatively
related to depressive symptoms; however, meaning was not related to loss of self, role
captivity, or mastery.
Women as Caregivers
The phenomenon of informal caregiving is shaping the lives of women in a very
profound way. Women are assumed to be homemakers and to have more time that is both
flexible and free. Women have, therefore, been expected to assume and have accepted the
role of nurturing caregiver as an extension of the traditional duties and responsibilities of
being mothers, wives and daughters. Many women work outside the home. Some have
professional careers. In 1997, 76.9% of women over 20 years of age were in the civilian
workforce. This compares with an average of 31% in 1949 (U. S. Bureau of Labor
Statistics, 1998). The dramatic increase in women's employment is due, in part, to the
influence of the women's movement in the 1960s; however, many work out of economic
necessity or personal choice. In a review of the theories and research on mothers and
daughters Boyd (1989) found evidence that as women age the mother-daughter
relationship is positively enhanced and, there is a transition and development of
mutuality, interdependence and positive connection. This does not negate conflict within
the caregiving relationship between daughter and mother a relationship that is stressful
and sometimes burdensome (Boyd, 1990). Baruch and Barnett (1983) conducted a two-
stage study (n = 62; n = 171 respectively) of adult daughters in the Boston metropolitan
area. In this study of the relationship of adult daughters with their mothers, the findings
contradict the stereotypical portrait of the mother-daughter relationship as one that is
conflicted. The findings of their study supported daughters' positive feelings towards
their mothers and that the rewards of the relationship were influenced by how well the
daughters had resolved adolescent issues of self-identity. The rewards were also noted in
later years when the mother was in poor health and the role and tasks associated with
caregiving were stressful for daughters and mothers.
One of the first researchers to address the issue of adult daughters' caretaking their
elderly mothers was an English sociologist, Lucy Fischer (1986). In a qualitative study,
Fischer identified a mutual-mothering pattern, a moving back and forth between
mothering and being mothered in the adult mother-daughter relationship. This pattern
included a "sense of mutual responsibility and protectiveness" (p. 58), a shift of roles
often referred to as role reversal.
Walker and Thompson (1983) studied intergenerational intimacy, aid and contact in
two groups of mother-daughter dyads 132 student women and their mothers, and 107
middle aged women and their mothers. In this study, they found that aid and contact did
not predict intimacy between mother and daughter. There was a small association
between proximal aid and contact as a predictor of intimacy. Wuest (1997), in a grounded
theory study of environmental influences on caring behaviors, found that women
repeatedly identify a need for resources that do not medicalize normal developmental
issues of women.
The expansion of interest in health care issues of women has heightened
consciousness of intergenerational caregiving by women as a stressor affecting women's
health. The changing demographics and the call for daughters to assume greater informal
caregiving of frail aging mothers has been observed in clinical nursing and has given rise
to increased research on caregiving of adult women and daughters to the elderly. The
research literature is replete with quantitative data and information based in structured
interviews and statistical analysis. This traditional natural science approach focuses on
the chores and stresses of the caregiver (Abel, 1990). While these studies provide an
understanding of the labor intensiveness of the caregiving situation from an objective and
abstract perspective, they do not disclose the meaning of the subjective human experience
of caring (Abel; Abel & Nelson 1990; Graham, 1983).
From a feminist perspective, task oriented definitions of caregiving are particularly
inappropriate for an activity that is predominantly engaged in by women (Abel; Abel &
Nelson; Noddings, 1984). Women, while assuming the responsibility for the multiple
tasks of caregiving, are more apt to focus on the experience of connectedness and love in
the caregiving situation (Walker & Allen, 1991). Men are more likely to assume
responsibility for the instrumental tasks of daily living of the elderly in their care (Miller,
1989). Caregiving by women is attributed to the multiple functions and way of thinking
evolving from the culturalization of women in the role of mothering and caretaking, and
men in the role of financial provider and protector (Walker & Allen, 1991).
A bibliographic review of intergenerational informal caregiving of the elderly from
a cross-cultural perspective revealed similarities and differences. This review was drawn
from the literature in social sciences, anthropology, psychology, gerontology, and nursing
covering the years from 1987 to 1997. The references reviewed represent a multi-cultural
overview from developed and developing societies. Based on the review it is noted that
the bulk of caregiving in most cultures falls principally on a single caregiver. Care is not
generally shared equally among family members. Women assume the primary caregiving
role, and daughters appear predominate in this role in almost all societies. There are,
however, exceptions mediated by cultural attitudes and beliefs that guide familial
caregiving structures. In studies conducted in Spain and Mexico (Brandes, 1993), Japan
(Elliott & Campbell, 1993; Harris, 1993) and some developing countries, such as, Samin,
Tswana and Malo, the daughter-in-law assumes the primary caregiving role and the
grandchildren are introduced into the caregiving role very early in life (Cattell, 1997;
Guillette, 1992; Rubenstein, 1994). In these societies adult men are prohibited by cultural
taboos from caring for their grandmothers, mothers or aunts. Only in Chinese families,
studied in Hong Kong, was there evidence that sons assume the primary caregiver role, or
at least shared it equally with women (MacKenzie, 1996). Among Native American
populations there was no one person as caregiver the responsibility was shared by the
intergenerational community at large, reflecting a strong cultural belief in the community
as kin (Hennessey & John, 1996). A study of an Amish community (Hewner, 1993)
where the image of community and kin support prevails, found that this stereotype was
not supported. The daughter-in-law who resides in the home of the husband's parents is
the primary caretaker. An interesting finding in this community is a lack of the oldest old
limiting comparison with cohorts outside the Amish community. A shorter life
expectancy in this community relates to underutilization of advanced health care services
due to religious and cultural beliefs. Overall, the ordering for elder family caregiving,
excluding spousal care and cultural taboos seems to follow a hierarchy: daughters,
daughters-in-law, grandchildren, sons, other relatives, friends, and formal caregivers.
Caregiving by daughters-in-law was primarily linked to an obligation of the son inherent
in cultural traditions often associated with inheritance.
Mother and Daughter Relationships in Caregiving across the Lifespan
The caregiving research supports the observation that adult daughters predominate
as caregivers' of the elderly of whom the majority are women living in the community,
either semi-independently or with the primary caregiver (Abel, 1986; Brody, 1981;
Horowitz, 1985; Lopata, 1993, 1996; Stone, Cafferata & Sangl, 1987). There is a strong
integral dyadic relationship between mother and daughter that encompasses attachment,
conflict, mutual identity, and satisfaction over the course of the life cycle (Boyd, 1985,
1987, 1989, 1990). Transition into a caregiving role is cast against the contextual warp of
the mother-daughter relationship; it was found that the characteristics of the mother-
daughter relationship are a predictor of commitment to caregiving (Pohl, Boyd, Liang &
Given, 1995; Seltzer & Wailing Li, 1996; Walker & Allen, 1991). Often, this relationship
is characterized by deep ambivalence reflected in increased perception of burden in
caregiving (Chadorow, 1978; Luescher & Pellemer, 1998). Intergenerational caregiving
has been referred to as a role reversal (Fischer, 1986). As a life experience, it is a
developmental process in which both mother and daughter are interdependent and
interactive (Boyd, 1985).
In a qualitative study of 29 widowed mothers and their caregiving daughters,
Walker and Allen (1991), identified three relationship types: intrinsic (45%), ambivalent
(34%), and conflicted (21%). Intrinsic relationships are characterized by mutuality.
Burdens incurred in this type of relationship are reported as overshadowed by the
rewards, and conflicts are minimal and quickly resolved. Ambivalent dyads lacked
mutuality with one person, generally the mother, depending more on the other for
support. Conflicts were recurring and rarely resolved. Concern was expressed for each
other, however, was not perceived as reciprocal especially by daughters. Each person in
conflicted pair relationships was concerned about herself. The rewards were minimal and
the conflicts ongoing and unresolved. Other mediating factors in the relationships were
the duration of caregiving, and the number of children the daughter had, rewards from
partners, ability to handle conflicts and express feelings of mutual concern. There was a
tendency for mothers and daughters in the intrinsic group to live together (39%). The
percentage for ambivalent pairs was 10% and zero percent for conflicted pairs. Mothers
in intrinsic pairs were more often widowed (31%) than those in ambivalent or conflicted
relationships who were more frequently divorced, separated or abandoned. Daughters in
intrinsic relationships had fewer children and a shorter history of caregiving. Utilizing
social exchange theory, Walker, Martin, and Jones (1992) examined the outcomes of
caregiving for elderly mothers and their adult caregiving daughters. Daughters having
better relationships with their mothers reportedly perceived caregiving as less
burdensome. They also identified three factors that influenced relationship types for the
mothers: helplessness, anger and feeling loved; and three for the daughters: insufficient
time, anxiety and frustration. These three studies are among the few where the sample
included the mother-daughter dyad in the caregiving situation.
Assuming the inherent uniqueness and validity of elder caregiving by adult
daughters, Allen and Walker (1992) later applied the theory of attentive love (Ruddick,
1989) to data from interviews with twenty-nine adult daughters caring for their elderly
mothers. They explored the connections and distinctions between maternal caregiving to
young children and the related caring by adult daughters to their aging mothers. What
was evident was that daughters sought to protect their mothers, maintain their autonomy,
dignity, and acceptability in the community. While similar to mothering labor, there is a
difference. Unlike childcare where physical, emotional, and cognitive development is
fostered and anticipated, daughters labored to minimize developmental decline in their
mothers. Aging mothers with cognitive impairment were excluded from this study. A
future exploration including interviews with the aging care receiving mothers may add
additional light on this theory.
King (1993) integrated the themes evolving from a phenomenological study of the
experiences of midlife daughters caring for their mothers into a developmental
framework specific to the stages of caregiver development. The resulting Continuum of
Care model identifies three major points in the development of a daughter's care giving
experience of her mother, each with a set of sub themes. This model has implications for
nursing interventions in assisting daughters to identify needs, abilities, constraints,
realistic goals and strategies.
Caregiving as Portrayed in Literature of the Day
There is renewed attention toward a postmodern epistemology to incorporate the
context and the texture of human life in research, not as separate from, but as a part of life
experience. Narrative story is fundamental to human life reality and experience.
Storytelling has been an essential part of the human experience since the beginning of
history. Literature is the expression of the narrative nature of human beings. It reflects the
psychosocial and spiritual evolution of humankind. Artistic symbols found in early cave
dwellings among the artifacts of archeological discoveries, such as, pottery paintings and
carved figurines are the earliest evidence of communication through story patterns. As
cultures and societies developed, language became organized into the written word.
Stories, myths, and traditions were committed to paper and transcribed by hand.
Within the scientific world, with its values on objectivity and validity, anecdotal
information has been viewed as ambiguous, metaphoric, temporal, liminal and
historically and socio-culturally constrained (Sandolowski, 1991). As research
methodologies are evolving toward a postmodern epistemology there is an increased
recognition of human narrative as valid knowledge. The behavioral, social science and
nursing literature is showing an ever-increasing use of the ethnographic,
phenomenologic, hermeneutic, case history, and life narrative methods of research.
Researchers are finding the stories within the telling of personal history that reveal the
drama in the life history (Sandolowski, 1991). Story stirs a deeper curiosity about the
context and the texture of the human experience. Narrative is a way of expressing
experience. Experience is individual and cannot be compartmentalized. What is real for
each individual is shaped in the moment and is different for each. While individual, these
ordinary stories also contain shared understandings (Gubrium, 1991). Themes emerge in
story narrative as some wrinkle in the unfolding of life. These stories and themes are not
simply literary constructs. Stories and themes keep us aware of the liminality of everyday
experience, and pry open closed human understanding to view the purpose, meaning, and
vision of the paradox of life events and circumstances. The use, then, of the narrative
contextualizes meaningful events, social relations, cultural values, and historical trends.
Narrative is defined as the representation in art of an event or story; something that is
narrated: a story (Mish, Ed., 2002). One form of narrative art is found in the writings of
prose: novel, verse, biography, and autobiography. Authors often construct an imaginary
world reflecting the meaning of life experiences through the lens of cultural and
psychosocial influences and values. Characters in fiction can reveal greater complexity,
subjectivity, and diversity. In a culture governed by secularism and objectivity, fictional
narrative provides metaphor to clarify experience through literary character exemplars
(Gadow, 1986). Through stories, researchers can gain insight into the way human beings
understand and enact their lives (Sandelowski).
The literature on mothers and daughters provides narrative linkages to the
caregiving research on adult daughters and their elderly mothers; and lends understanding
of the experience. The mother-daughter relationship is complex and can only be
understood in the context of the whole of life reality. There is an increasing attention to
the quality of the mother-daughter relationship as an "a priori" influence on the dyadic
relationship at the end of life cycle caregiving.
A search of the public library computer system, fiction and non-fiction, was
conducted for exemplars of the mother-daughter relationship over the life span that bore
influence on the end of life caregiving. Phillips (1991) discusses the body of narrative
literature from the 18th and early 19th century including the works of Jane Austin, Emily
Bronte, George Eliot, Florence Nightingale and Mary Wollenstonecraft that provide a
picture of the roles of women and mother and daughter relationships in that time and
culture. The bulk of the more recent literature, aside from self-help books, was published
in the feminist and post feminist years. Writers, such as, Forster (1990), French (1987),
Lessing (1984), Sarton, (1978), and Sexton (1994) whose works are set in the climate of
the late 20th century focus on women as full participants in the economic, professional,
artistic and creative functions of society and shed light on the complexity of the
relationship between mother and daughter. The predominant themes woven into classic
and popular literature are that of attachment, identification, ambivalence, conflict and
resolution or what may be noted as transition and transformation.
The mother-daughter relationship is innately contradictory, according to sociologist
Lucy Fischer (1986). It is also pivotal for the development of a healthy self-concept and
identity of women (Boyd, 1985; Chadrow, 1978; Gilligan, 1982). Miller (1995)
developed a typology of mother-daughter relationship patterns that could be utilized not
only in future caregiving research but also in analyzing the narrative characters in
literature. She characterizes five types of dyadic mother-daughter relationships: avoiders
(ambivalent), caretakers (role reversalist), repairers (tolerant and forgiving), negotiators
(compromising and approving), and good friends (reciprocity). These relationship styles
are transitional throughout life.
The narrative literature reflects the need to resolve unfinished business of
childhood, to move through conflict and ambivalence to intrinsic healthy relationships.
There is a described tendency for renewed closeness when daughters reach adulthood and
transition into motherhood. This provides an opportunity to resolve old conflicts and to
achieve self-identity and the development of a healthy relationship (Fischer, 1986;
Patsdaughter & Killian, 1990). This opportunity is revisited and heightened when adult
daughters assume caregiving of their mothers.
Overview of Phenomenology as a Philosophy and a Method
The word phenomenology is derived from the Greek word phenomenon and means
appearance, or to put in light or manifest something that can become visible in itself
(Heidegger, 1962). Phenomenology is a both a philosophical movement and a research
method whose primary object is the direct investigation and description of phenomena as
consciously experienced without being obstructed by pre-conceptions. As a research
method it is the study of appearances, dedicated to describing the structures of experience
as presented to consciousness without recourse to theories, deductions or assumptions
from other disciplines (Spiegelberg, 1975; van Manen, 1984, 1990).
Phenomenology as a philosophy began with the work of Hegel (1770-1831). He
believed that the mind, while having a universal structure, changed its content from time
frame to time frame (Spiegelberg, 1975). Thus, reality is always becoming; and we come
to know the mind as it is in itself through studying its appearances (van Manen, 1990).
He did not, however, pursue the development of this concept as a philosophy or a
As a philosophical movement, phenomenology is rooted in the nineteenth century
and the descriptive psychology psychologistm) of Franz Bretano (1859-1938). Bretano
taught a philosophy of intentional relationship intentionalityy) to distinguish between
psychological and physical phenomena (Palmer, 1994; Spiegelberg). Intentionality
references perceiving, judging, loving and caring to their perceiving, judging, loving and
caring acts. He considered experience from both the empirical and the intuitive
The phenomenological movement evolved (Spiegelberg). In particular, it evolved
in the philosophical reflections of Edmund Husserl during the latter part of the 19th
century. Husserl (1859-1938), although a student of Bretano, rejected psychologist and
set about the study of acts in their essential structures or from a natural standpoint the
world as actually lived (Husserl, 1962). Husserl's approach as a philosophy and method
of research spread during the 20th century and influenced the arts and humanities,
architecture, law, politics, psychology, ecology and most recently medicine and nursing.
Attributed to Husserl is the expression: "To the things themselves" which is often
referred to as the natural viewpoint or the world as actually lived. For Husserl (1962) the
intentional reflection on the lived experience was the source of all knowledge.
As a philosophy, phenomenology focuses on the inward experience, the absolute
essence of an object separate from its existence. One is simply concerned with what
things are, not whether they are. The context of the experience is a given reality. It is
present in time and space. Phenomenology as a premise and methodology seeks and
accepts only the evidence that is offered by the consciousness itself. We know to the
extent that we grasp essence (Husserl). The only true knowledge of an experience comes
from those living-in-the-world of the experience. It is from personal autobiography that
meaning emerges and insight is revealed. Husserl says:
Insight, self evidence, generally, is thus an entirely distinct occurrence; at its
"centre" is the unity of a rational positing with that which essentially motivates it,
the whole situation here indicated being intelligible in terms of the noema as well
as the noesis. (p. 352)
The noesis (the interpretive act directed to an intentional object) experience is the
real content of the manifest data perceived. The material content (noema) is the object of
noesis; but displays the vast possibilities and richness of genuine meaning of the
perception in conscious intuition. A phenomenological pure experience has its real
components. One arrives at this meaning or pure essence through intentional analysis and
the suspension of all presuppositions and assumptions normally made about the
experience (bracketing). Bracketing is described by Husserl (1962) when:
We put out of action the general thesis which belongs to the essence of the natural
standpoint, we place in brackets whatever it includes respecting the nature of
Being: this entire natural world therefore is continually "there for us," "present to
our hand," and will ever remain there, is a "fact-world" of which we continue to be
conscious, even though it pleases us to put it in brackets. (p. 99-100)
The purpose of this reduction is to obtain pure and unadulterated phenomena before
they are criticized by prior interpretation and beliefs (Cohen, 1987). Bracketing is a
process by which the researcher suspends personal belief about what they think they
know about the experience and ask the participant: Tell me what the experience is like for
you (Thibodeau, 1993). Bracketing according to Munhall (1994) is an attempt to achieve
a state of mind of unknowing as a condition to openness. The process of unknowing is a
paradox in knowing that one does not know and is essential to the understanding of
subjectivity and gaining of perspective in the conduct of human science research.
Unknowing requires the researcher to be fully present in her/his personal world of values
and perceptions and to be, at the same time, authentically open in interacting with the
unknowingness about the life experience of the subject (Munhall). A researcher studying
a phenomenon can never completely unknown. However, through reflective journaling
and dialogue one can bring forth and examine personal beliefs and interpretations and
hold them in abeyance.
The core of the phenomenological methodology is then to fully enter into the
experience of another. It requires being intuitively present and aware of the inner
meaning for the other. In this way, one can arrive at the structure behind the content.
Because of its reflective and descriptive approach, it is sometimes referred to as
Heidegger (1889-1976), a student of Husserl, was interested in applying the
phenomenological method to the question of Being itself. He delved into the language
used to express Being and generated a phenomenological technical vocabulary.
Heidegger (1988) reinterpreted phenomenology into what is called hermeneutic or
interpretive phenomenology. Unlike his teacher, Husserl, he articulates the position that
presuppositions are what constitute the possibility of meaning.
Spiegelberg, as a historian of phenomenology, identified commonalties in
phenomenological study. These include: direct investigation analysis and description of
the phenomena as free as possible from presuppositions, perception and probing for the
essential structures and relationships of structures, being attentive to the ways phenomena
appear in different perspectives, exploring the way it takes shape in consciousness,
detachment from the phenomena of everyday experience, and interpreting hidden
meanings that are not immediate and direct. Swanson-Kauffman and Schonwald (1988)
speak of the phenomenological researcher as one who intuits the other's reality by being
open to identifying with the other's reality as a possible reality for oneself. Noddings
(1984) captures the experience of intuiting others' reality as a striving to understand "as
if'-as if the other's reality were ones' own. Qualitative research, thus, requires an ability
of the researcher to enter into an empathetic caring with the participant-partner. In the
phenomenological study, this intuitive engagement is primary.
Although there are different techniques for data analysis in phenomenological
research, LoBiondo and Hubec (1998) describe general steps in the movement from the
participant's description to the researcher's synthesis of the data. These steps include:
1. Thorough reading and sensitive presence with the transcription of the participant's
2. Identification of shifts in participant thought resulting in division of the transcript
into thought segments.
3. Specification of the significant phrases in each thought segment, using the words of
4. Distillation of each significant phrase to express the central meaning of the segment
in the words of the researcher.
5. Preliminary synthesis of central meanings of all thought segments for each
participant with a focus on the essence of the phenomenon being studied.
6. Final synthesis of the essences that have surfaced in all the participant's
descriptions, resulting in an exhaustive description of the lived experience. (p. 225)
Phenomenological investigation of phenomena important to nursing knowledge and
practice is an epistemological balance to quantitative research methods. It is a partner
with quantitative methods of research in an attempt to make sense of the world as it is
lived from the perspective of the persons living it. It provides the weft on the tapestry of
life by which experience is blended into the whole picture of research. This method
involves locating, gathering, sorting, retrieving, condensing and verifying the data
(Swanson-Kauffman & Schonwald, 1988). It promotes an understanding of human beings
in whatever environment they happen to be. There is a growing perception that the
professional must be involved in the way that people experience and live with their
health-illness challenges in different, and at times deeply personal and unique ways (van
Manen, 1984, 1990). Phenomenology shows us what worlds people live in, what ranges
of human experiences are possible, how these experiences may be described, and how
language has powers to disclose the worlds in which we live as nurses, daughters,
mothers and caregivers (van Manen, 1990). This approach into the phenomenon of elder
caregiving may provide new understanding for nurses into the experience of adult
daughters and their mothers within the environment of caregiving and give new
directions for clinical practice and research.
Personally, I can clearly remember the moment in time when I realized that mother
was less able to care for herself. Widowed at 58 years of age, she had kept house for and
resided with my single sibling for over ten years. About a year before the awareness of
increased dependency, I began to notice little things. She was less meticulous about
housekeeping that she prided herself in; she began to walk with a cane for "fear of
falling". When my sibling moved to another state for work, mother chose to remain
behind and moved to a planned subsidized retirement community. At the time, I lived 140
miles away. However, my best friend, who was like another daughter, lived within five
miles of mother. It was a gradual process. She began to negotiate with both of us for
errands, shopping, and assistance with housework. Physically, she was healthy but she
was slowing down. Her mind was and remained alert and active until her death at age 93.
These mutually negotiated tasks increased. By then, I lived only a short distance from
her, and spent more time not only in tasks to maintain her independence in the
community; but also in communication. We both found our encounters were occasions
for sharing, for being connected. I was able to direct her occasional reminiscing to
uncover a wealth and richness about the person, the human being who was my mother. At
age 81, she suffered a severe epistaxis due to the dry climate we lived in and a 60-year
history of cigarette smoking. It was frightening for her and she no longer felt safe living
by herself. While she was in the hospital, we discussed options. We agreed that she
would come to live with me for a few weeks until she felt stronger and we could re-
evaluate after that time. Subsequently, she moved into an apartment next to mine. Our
proximity gave her a sense of security and a reason for being since she could do things
for both of us while I was at work. I, in turn, could attend to those tasks that she needed
to have done to maintain her dignity, health and healing. We mutually created a bonding
and a relationship that gave new meaning to our dyadic connectedness. Inconveniences
had to be evaluated and adjustments made. These were not always easy and at times
created conflict; however the benefits and rewards transcended the "burden of care".
The effects of aging both primary (normal physiological decline) and secondary
(effects of environment and lifestyle) increased the need for caretaking. I secured
resources to assist with the "doing for" tasks, and thus was able to maintain the
connectedness of a relationship rich in rewards for each of us. Mother was in general
good health and on no medicines aside from vitamins. She did, however, have severe
osteoporosis. At 86 years of age she had bilateral hip replacement for fractures. And,
several month post rehabilitation suffered a severe reaction to a spider bite and almost
lost her leg. At ninety years of age, she suffered a cervical neck fracture with partial
quadriplegia. Although the spinal cord insult was relieved by surgery and she
rehabilitated well; it was evident to both of us that she could not be home alone safely.
We mutually made a decision that she would go to a care facility of her choice and be
able to come home as often as feasible.
My professional interest in the phenomenon of caregiving the frail elderly stems
from nursing practice and caring for the aged in long term care, home health and in
faculty practice at a university 'community nursing center' where the population was
predominately elderly. Unlike childcare, this situation has no definitive end in sight and
often goes unrecognized. Personal and professional knowledge and experience raised
questions, for the researcher, about the elder caregiving matrix. The questions asked
were: 1) What is the meaning of this experience?; 2) Can greater understanding of the
experience influence caregiving behaviors, interventions and outcomes?; 3) Can listening
to the voices of caregivers and care receivers inform care providers, public policy makers
and improve the well being and health of both?
A considerable body of literature addresses intergenerational caregiving of the
mentally compromised aged population. An extensive search of the caregiving literature
reveals a scarcity of research that directly addresses caregiving by daughters to their
aging/aged mentally competent but physically dependent mothers. There is limited
evidence of study on the caregiving experience for the frail elderly care recipient. The
elder caregiving research reveals a concentration of study of the caregiver for the
mentally compromised elderly. It has, however, been well documented that adult
daughters provide the majority of informal eldercare and that the largest cohorts of
elderly care receivers are women (Brody, 1981; Himes, 1992, Horowitz, 1985;
Neundorfer, 1991; Stoller, 1983; Stone, Cafferata & Sangl, 1987). There is an absence in
the literature of the voices of the aged themselves; and, save for a few more recent
studies, of their caregivers. We know that the majority of the elderly live in the
community (U. S. Bureau of Census, 2000), many being of sound mind but diminishing
physical ability and yet, there is a striking absence of research addressing the frail elderly
and their often invisible caregivers-adult daughters.
This phenomenological inquiry focuses on understanding the meaning of the
human experience of informal caregiving by adult daughters for their physically
dependent, aging mothers whose mental competency is intact. Through
phenomenological inquiry, a human science method, this study will seek to uncover,
describe and interpret the common essences or meanings of this special dyadic
relationship of daughters and mothers. It is the intent of this phenomenological study to
listen to the voices of aging mothers and their caregiving daughters, and to be open to the
possibilities of discovering the essence and the meaning of the dyadic caregiving
relationship between adult daughters and their frail elderly. To what end? A sense of
meaning is the foundation that contextualizes all other levels of health (Thorne, 1997).
Nurses are promoters of health, healing and quality of life for the elderly and their
caregivers. An understanding of the meanings of the experience of caregiving is essential
to effective nursing practice and health care interventions and outcomes.
Method of Inquiry
The purpose of this study was to gain an understanding of the experiences of
caregiving adult daughters and their care receiving frail mentally competent elderly
mothers who lived together. Phenomenology was used to explore the day-to-day lived
experience for adult daughters caring for their physically frail mentally competent elderly
mothers and for the mothers receiving the care. The researcher sought to uncover the
essences, interpret, and describe the meaning of this relationship of daughters and
Hermeneutic phenomenology is a method used to describe, interpret, and
understand lived experience in an effort to discover meaning rather than to explain and
predict (Morse, 1991). The phenomenological research method is a "systematic, explicit,
self-critical, and intersubjective study of its subject matter, of lived experience" (van
Manen, 1990, p. 11). Phenomenology is a way to investigate subjective phenomena, and
is based on the belief that essential truths about reality are grounded in everyday
experience (Spiegelberg, 1975; van Manen, 1984, 1990). Because phenomenology
examines the meaning that lived experience has in people's lives, it is a valuable research
method in nursing.
Several nursing theorists have attributed importance to meaning. For example,
meaning is central to Leininger's (1981) theory of transcultural nursing. Parse (1987)
defines meaning as the first principle of the theory of human becoming. Watson's (1979,
1985) theory of human caring is concerned with meaning for both the nurse and the
patient in the concept of a transpersonal moment; and Newman (1990) equates meaning
with "the pattern of the evolving whole" (p. 41) in her theory of health as human
The product of the phenomenological study is to uncover the meaning and essences
in the experience being studied and to provide rich, in depth, descriptive and interpretive
information that promotes greater understanding of a particular phenomenon. This
illumination may give direction to nursing practice, such as, the formulation of other
questions or a different way of responding to a health care situation. Above all is the
understanding that provides the "material with which to build specific plans for nursing
care" (Munhall, 1994, p. 182). Listening to adult daughters and their frail elderly mothers
experiences of caregiving and care receiving may reveal new truths and may influence
possibilities for nursing intervention and future research. "We must have a good clear
picture of the qualities of the world before we can attempt to explain it, let alone predict
or modify it" (Gubrium & Holstein, 1997). The results from this study can provide
information for future interventions and policies, generate further research questions and
enhance theory development and nursing knowledge.
Human Science Method
The human science paradigm for phenomenological study of van Manen (1984,
1990, 2000) builds on the hermeneutic approach of Heidegger. Van Manen's concept of
human science is directed at explaining the meaning of human phenomena and at
understanding the meaning in the lived experience (1990). This approach is a reflection
on the text of lived experiences as described by the participants. The intent is to increase
thoughtfulness and practical resourcefulness (van Manen, 1990). Van Manen's (1984,
1990) method of phenomenological research is predicated on the assumptions that
phenomenological research is: 1) a study of lived experience, 2) an explication of
phenomena as they present to the consciousness, 3) a study of essences, 4) a description
of experiential meanings, 5) a human scientific study of phenomena, 6) a poetizingg
activity" (van Manen, 1990, p.13), 7) an attentive practice of thoughtfulness, and 8) a
search for what it means to be human. For van Manen, doing phenomenology is a
questioning of the ways one experiences the world. The research project describes and
interprets this experience from a particular perspective (Boyd, 1993).
In the human sciences, according to van Manen (1990), and specifically in
hermeneutic phenomenological work, writing is closely bonded into the research activity
and reflection itself. The objective for van Manen in human science research is to make
some aspect of our lived world and experience more understandable and intelligible
through reflecting on the linguistics of the described phenomenon. Van Manen's method
requires a commitment to write since the process of research and reflection, reading and
writing are indistinguishable.
The American Nurses Association (2002) provides ethical guidelines for the
conduct of nursing research and the protection of human rights of research participants.
Protection of human rights includes: 1) right to self-determination, 2) right to privacy and
dignity, 3) right to anonymity and confidentiality, 4) right to fair treatment, and 5) right to
protection from harm. Special consideration for vulnerable populations needs to be
assured in areas of sensitive research. Sensitive research is that which intrudes on
personal experience and/or involves issues sacred to participants.
Procedures for protecting the basic human rights of the participants in this study
included adhering to the standards and procedures of the Internal Review Board (IRB)
and gaining informed consent. Participants were assured of confidentiality. No
identifying information was placed on the identifying label of the audiotapes or
transcriptions of the interviews. A code letter identified each participant. Only the
researcher had the code and corresponding participant identification. Fictitious names
were used in the analysis, narrative description, and interpretation of the data in the
research report. Access to the transcripts was restricted to the researcher and members of
the research dissertation committee. Names were removed from the master copy of the
demographic information after being coded and only the researcher was able to identify
the participant. This information was analyzed using descriptive statistical methods.
Individual narratives were synthesized in the themes and anecdotal narrative to ensure
complete participant confidentiality. The same procedure was used for the assessment of
ADLs, IADLs, health care needs, and MMSE instruments. During the course of the
research, the interview tapes, demographic, assessment instruments, signed consent forms
and transcripts were kept in a locked file cabinet with access restricted to the researcher.
These records, with the exception of the tapes, will be kept for three years after the
completion of the study as evidence to support the findings of the study. The tapes will be
magnetically erased and destroyed upon completion of the research. The written research
report and publication of findings do not contain the actual name or location of the
participants. Any quotes used have been altered so the participant cannot be identified.
Sample and Setting
Purposive sampling was used for this study to obtain a sample of five dyads (n=5).
In this sampling method, the researcher selects participants who have the desired
experience in order to obtain maximal accounts of the experience, and increase
understanding of some facet of a phenomenon (Burns & Grove, 1997). The following
criteria were used for inclusion in this study:
* Mothers must be over 70 years of age.
* Daughters must be over 40 years of age.
* Daughters must be the primary caregivers.
* Mothers must have physical restrictions that require assistance with one or more
activities of daily living (ADL), such as, bathing or eating; or with two or more
instrumental activities of daily living (IADL), such as, shopping or transportation;
or one health care activity, such as, wound care or tube feedings. This will be
determined at the time of the initial interview by an assessment of ADLs, IADLs
and health care activity (Appendix A).
* Mothers and daughters must be cognitively intact as determined by a mini mental
status examination (MMSE) (Appendix B) at the time of the initial interview. A
score of 25 or above indicates no cognitive impairment; a score of 20 to 25 is
indicative of depression without cognitive impairment. Scores below 20 indicate
various levels of cognitive impairment with depression and or psychosis (Folstein,
Folstein & McHugh, 1975). Only those with scores greater than 20 will be accepted
for participation in the study.
* Mother and daughter must live in the same residence or in close proximity, such as,
side by side apartments, a mother-in-law apartment attached to but separate from
the main residence or a separate residence on the same property, or units of housing
within no greater distance than one block.
* The caregiving situation must be of one-year duration or longer.
* The daughter must be an unpaid caregiver for her mother.
* Each participant must consent to a minimum of three sessions: one initial study
inclusion interview, at least one unstructured taped interview, and possibly one visit
when the study is completed for participant confirmation that the descriptions and
interpretations captured the essence of the experience.
Newspaper advertisements and snowball sampling was used to solicit volunteers.
Snowballing or network sampling is useful in finding participants of invisible or devalued
populations. Once a researcher finds a few participants who meet the inclusion criteria
they are recruited to assist in finding participants with like characteristics. The
assumption is that, within social networks, friends share common life experiences.
Inherent in this method is a built in bias as the subjects are interrelated through
association (Burs & Grove, 1997).
The adequacy of the sample size was evaluated by the completeness and quality of
the information provided by the participants rather than by the number of interviews. This
was achieved when the researcher had information redundancy, or the information and
understanding was complete in the circular, iterative analysis of the interviews. This type
of theoretical sampling maximized access to data that represented the phenomena and
contributed to understanding (Morse, 1994).
Data Collection and Procedure
After the potential participants were identified an initial interview was scheduled at
a time and place convenient to the participants. At this interview, demographic
information (Appendix D), assessment of ADLs, IADLs and health care needs, and a
MMSE (Appendices A & B) were done that validated the inclusion criteria for the study.
The purpose of the study was explained and written IRB approved informed consent was
obtained from each mother and daughter (Appendix D).
Oral process consent was solicited throughout the interview process. Process
consent is an oral negotiation and renegotiation during the interview or series of
interviews as unexpected situations or consequences occur. Process consent reflects
sensitivity to the dynamics of phenomenological research and to the participants' human
rights in the telling of their story.
One topic for consideration in the process consent was self-disclosed secrets. Since
all data obtained was part of the study, participants' secrets were discouraged.
Disclosures of secrets pose a dilemma for the nurse researcher who also has an ethical
and therapeutic concern for the well being of the participant. Due to the personal nature
of the subject matter and the involvement of the researcher and participant in
phenomenological research, there is a fine line between the research imperative and the
therapeutic imperative. While the telling of one's story may have therapeutic value, this
is not the intent of the research process. The nurse researcher was vigilant in anticipating
problems, rendering appropriate support, providing and arranging appropriate resources
and referrals and debriefing at the conclusions of the interviews. An informational copy
of community resources was available for each participant at the time the informed
consent was obtained. In the event that an illegal situation was revealed, such as, abuse, it
would have been reported to the appropriate authorities in accordance with the laws of
the State of Florida. All of these conditions were discussed with the participants at the
beginning. No evidence was seen to require such action.
The right to self-determination allowed a participant to withdraw at any time
without penalty. Due to the possible vulnerability of the elderly being interviewed, they
were free to end an interview at any time if they were uncomfortable physically or from
the sensitive nature of the information being shared. One mother became quite fatigued
physically toward the end of the interview and the process was concluded at that time.
None choose to withdraw from the study or asked to continue the interview at another
time. There was no monetary remuneration for participation in the study. A handwritten
thank you note was sent to each participant after the interviews. On the completion of the
research a summary of the descriptive and interpretive writing was given to each
participant along with a small token of appreciation, such as, a small bouquet of flowers
or pot pourri.
The question asked of the adult caregiving daughter was: "What is the experience
like for you in caring for your mother?" The question asked of the care-receiving mother
was: "What it is the experience like for you to be cared for by your daughter?" Asking
this type of grand tour question allowed the subjects the freedom to tell their story
without constraint. During the interview prompt questions were used for clarification and
focus. Prompt questions asked when, who, where, why, how and what. Prompt questions
were not intended to lead the participant but to encourage and elicit examples and
meaning about the experience they are describing. They were oriented to specific
instances, situations, events, and persons (Munhall, 1994; van Manen, 2000).
Interviews were conducted in the participant's home environment or at a local day
care center at a time free of interruption and conducive to reflective storytelling. Mothers
and daughters were interviewed separately at different times. The length of the interviews
were not constrained; and lasted about one hour. At the end of the interview, a leading
question was asked, such as: "Is there anything more about your experience that you feel
is important that we may not have touched on?" In most instances this question elicited
no new information.
All interviews were tape recorded and transcribed verbatim by the researcher.
Participants were assured of confidentiality as explicated in the section of the consent
form on human consideration. Field notes were taken during the interview to record body
language or other contributing factors that were not reflected on the recording. These
were done so as to minimize distractions to the participant. The researcher was attentive
to the words and the gestures of the participant's reality. In the phenomenological
method, the interview is produced together. The researcher is not just doing research; but
becoming a partner working with the participant as co-researcher (Wilson & Hutchinson,
Data Management and Analysis
The researcher transcribed tape recordings as soon as possible after the interviews.
Interviews continued, as the previous ones were being transcribed and analyzed. The
analysis of data began during the interview and continued as they were transcribed to
ascertain sufficient data to represent the various dimensions of the phenomenon.
Participant dyads were added as necessary to produce exhaustive accounts of the lived
Van Manen's (1984) human science method of hermeneutic phenomenology was
used for analysis and interpretation of the transcripts (Tablel). The specific method of
van Manen has four concurrent procedural activities involving eleven steps as presented
in Table 1. The data was analyzed concurrently with collection. This concurrent and
simultaneous method allowed for critical examination and use of previous experience and
was crucial in determining the completeness of the data. When thematic analysis and
determination of themes are complete, they should grab the essence of the phenomenon
(Swanson-Kauffman & Schonwald, 1988). At this point, the esthetic of the study was
undertaken through writing and rewriting. This process uncovered the universal yet
individual experiences of each participant, simple and straightforward "like a skeleton
that can be filled in with the rich story of each informant" (Swanson-Kaufman &
Schonwald, p. 100).
During data analysis the researcher employed reflective journaling to record aspects
of the interview and personal reflections. The journaling process contributed to the
trustworthiness of the research and provided an audit trail of ethical and methodological
decision-making (Smith, 1999). It also provided an overview of the researcher's horizon
and personal experiences with this phenomenon (Gadamer, 1976). This reflective process
of journaling was the researcher's key tool to "bracketing."
Bracketing is metaphorically akin to the practice of meditation. Meditation is a
disciplined practice in which all external and internal influences are set aside, the mind is
emptied for a time, and one goes to a space of unknowingness in order to discover new
knowing, understanding, and insight about life. Accompanied by continuous reflective
writing and rewriting these introspective processes heightened the researcher's critical
awareness of possible bias in interpretation and description (van Manen, 1984, 1990).
The daily practice of meditation in conjunction with reflective journaling allowed the
researcher to be aware of beliefs, assumptions and interpretations attributed to prior
professional and personal knowledge and experience. These processes deepened
reflective thoughtfulness about the seemingly trivial, taken-for-granted aspects of
everyday life. In addition, it was a clearing house for the researcher's professional and
personal experience with the phenomena in order to assure the trustworthiness of the
results of the study.
Table 1. van Manen's method of phe
Turning to the Nature of the
1. Orienting to the phenomenon
2. Formulating the question
3. Exploring assumptions and preundertandings
4. Exploring the phenomenon: generating data
using personal experience, tracing etymological
sources and idiomatic phrases, experiential
descriptions from participants, literature, arts, etc.
5. Consulting phenomenological literature
6. Conducting thematic analysis -
uncovering themes, isolating statements,
composing linguistic transformations, gleaning
description from artistic sources
7. Determining essential themes
8. Attending to spoken language
9. Varying examples
11. Rewriting, etc.
Note: Adapted from van Manen, M. (1984). Practicing phenomenological writing.
Phenomenology and pedagogy, 2(1), p. 5.
Themes provide insights into how persons make sense of the events and situations
in their lives and, are one way of assigning meaning to an experience. Themes emerge
from the data in the telling and recording of the stories of mothers and daughters and
describe their experiences of care receiving and caregiving. The world of lived
experiences is both the object and source of phenomenological human science research
(van Manen, 1990). In human natural science themes are given from the data in the
primary sense of the word, 'datum' meaning something given or granted or admitted by
the participants themselves (Bermen, 1994; Mish, Ed., 2002). Themes are used as a
means to arrive at a "fuller description of the structure of a lived experience" (van
Manen, 1990, p. 92). In this research study, I sought a deeper understanding of the
significance for nursing of the experiences related in the shared stories of adult
caregiving daughters and their mothers.
Van Manen (1990) discussed three approaches in the identification of the
thermatics of a phenomenon: 1) a wholistic or sententious approach, 2) a selective or high
lighting approach, 3) a detailed or line by line approach. The wholistic approach looks at
the text as a whole and allows for researcher license in interpretation. The selective or
highlighting approach identifies words, phrases, and sentences that appear to stand out as
essential to the experience. The detailed approach looks at every sentence or sentence
cluster asking what it reveals about the phenomena of study. All three approaches were
used by the researcher. However, the latter two predominated in the search for themes to
shape the description of the phenomenon of study. Essential themes are those that "make
a phenomenon what it is and without which the phenomenon could not be what it is" (van
Manen, p. 107). They provide guidelines for discovery of the larger dimensions of the
Van Manen uses the word "wholistic" in all his writings. I have followed his
spelling in lieu of "holistic" when discussing his books and writings.
In the reflective reading and re-reading of the transcripts and listening to the audio
tapes words, phrases, sentences and clusters of sentences that stood out were isolated.
While it is important to glean a sense of the whole, the second and third approaches
provided more rigor in the analysis of the data. They provided material for reflective
writing to uncover "fundamental lifeworld themes" (Merleau-Ponty, 1962, van Manen,
1990, p. 101). These themes were explored within four "existentials" (p. 101) or
perspectives of: 1) spatiality (lived space); 2) corporeality (lived body); 3) temporality
(lived time) and relationality or communality (lived human relation).
Lived space or spatiality is felt space (van Manen, 1990). When one thinks of space
it is defined by such concepts as duration, atmosphere, and topology (Mish, 2002).
Whatever the space is, however, there is a feeling one has when in it. The awe one feels
in a great cathedral, the sense of freedom or insignificance standing on the top of a
mountain surveying a panorama of beauty in nature, the feeling of excitement or of
strangeness when being alone in the heart of an unfamiliar and busy city, and the comfort
and security we feel being at home are all examples of lived space. We attend to
providing space conducive to learning, space for healing, space for playing, and space for
living. Lived space is "the world or landscape in which human beings move and find
themselves at home (van Manen, 1990, p. 102).
Lived body or corporeality relates to existing in a physical material body (Mish,
2002). It is the spirit-self revealing and acting through a material form. Bodily presence
reveals one in their lived space. It is the vehicle by which we come to know another
Lived time or temporality is subjective (van Manen, 1990). It encompasses our
past, present and future, our way of being in the world (expectant youth, visionary elder),
our memories and past experiences, our interpretation and re-interpretation of whom we
were, who we are and who we wish to be. It is unlike clock time that has specific time
Lived other or relationality is a quality of connectedness that we share with others
in our interpersonal lived spaces (Mish, 2002; van Manen, 1990). It is in the physical
presence that we have a greater existential sense of another, of community that
encompasses life purpose, meaning, and the spiritual experience of an absolute
Standards for Evaluation
A key caution in the conduct and analysis of all research data is error. Error may
occur anywhere during the research process and can compromise the outcomes and limits
the utility of the data (Morse, 1991). Error compromises the truthfulness of the research
results. In quantitative methods there are techniques to control problems in the reliability
and validity of research. The assertion is that reliability is an indicator of validity (Bear,
1990; Bums & Grove, 1997). The strength of the design of a research study to produce
accurate, trustworthy results is determined by examining statistical methods, and internal,
external and content validity. An outcome or finding is considered valid if it represents in
an accurate and consistent way the phenomenon that it is intended to describe, explain or
theorize (Bear; Bums & Grove; Cook & Campbell, 1979; Issac & Michael, 1995).
Accurate representation of findings is no less significant in qualitative research
methods. The rigor of qualitative research is "less about adherence to the letter of the
rules and procedures, than it is about fidelity to the spirit of qualitative work"
(Sandelowski, 1993, p. 2). Truth in qualitative research depicts accurately an independent
existing reality (Guba, 1990). The criteria for judging trustworthiness in a qualitative
study may differ; however, the standards are equally rigorous. In the past several decades,
researchers (Aamodt, 1983; Bums & Grove; Leininger, 1992; LoBiondo-Woods &
Habec, 1998; Morse; Parse, Coyne, & Smith, 1985) have developed and refined criteria
for judging the scientific rigor of qualitative studies. Each presents a slightly different
orientation, however there are four essential criteria: credibility, auditability, fittingness,
and confirmability (Lincoln & Guba, 1985).
Credibility is characterized by the recognition of the truth of the findings by
participants and expert practitioners within the discipline. Validating the final results rests
with the recognition by the participants, not of their full story, but of the presence of the
phenomenon as described in their experience. When the essence of the reality of the
phenomenon has been captured, then anyone who has lived the experience and reads the
description will recognize it as if it were their own telling of the story. The extent to
which a study is judged as credible is achieved by: 1) the clear presentation of essential
descriptive information, and 2) the mutual agreement of readers of the description
(Sandolowski, 1986, 1993). Lincoln and Guba suggest that credibility is to qualitative
research what internal validity is to quantitative research. Methods for ensuring
credibility in this study were tape recording and supplementing the interviews with
process notes taken by the researcher during the interviews. The circular and iterative
analysis of data was done by listening and re-listening to the tapes, by reading and re-
reading the transcripts, and by writing and re-writing descriptive data until saturation or
redundancy occurred. The intention was to share the final results with the participants of
the study for validation. However, since mothers and daughters were interviewed
separately and confidentiality assured, and some of the descriptions were very sensitive a
decision was made to only give them a brief synopsis of the findings. This decision was
also grounded in the new federal regulations regarding privacy of information. In lieu of
sharing the descriptive findings with the participants, colleagues and friends, who had the
experience of caregiving their mothers, read and validated the experience as their own.
Auditability provides for procedural rigor, accountability and reliability. It requires
a clear presentation of all of the study elements from the development of the question to
the interpretation of the findings in such a manner that a reviewer can follow the steps of
the research process. The reporting must be in sufficient detail to allow a second
researcher, using the original data and the decision trail, to arrive at conclusions similar to
those of the original researcher (Miles & Huberman, 1994). This study was reviewed by
other researchers and committee members with expertise in qualitative research. They
critiqued the study for accountability and procedural rigor.
Fittingness or vividness of description (Burns & Grove, 1997) is closely linked to
creditability and provides for a faithful description in enough detail so that the
participants and readers have a sense of experiencing the phenomena themselves. This is
known as the phenomenologicall nod" (Munhall, 1994, p. 202). Fittingness is to
qualitative design what external validity is to quantitative design. The description should
be so vivid that "the reader can almost literally see and hear its people" (Glaser &
Strauss, 1965, p. 9). Conclusions drawn from the data analysis was verified with friends
and colleagues who had the experience of caregiving their mothers. They had an
opportunity to validate interpretations of the data and exemplars, share comments and
new insights, and clarify discrepancies and ambiguities in interpretation.
Confirmability establishes the accuracy of data information and the soundness of
decisions and judgments in the sequence of the research process from the beginning to
the end (Isaac & Michaels, 1995). The researcher demonstrated throughout the process
accurate recording of information that was reaffirmed by ongoing consultation with
committee members. In addition, an expert research reviewer attested to the integrity and
accuracy of the prior three criteria of credibility, auditability, and fittingness.
This chapter reports the analysis of a study on the care-giving experiences of five
mother-daughter dyads. This chapter will: a) review the purpose of the research, b)
provide background information on the participant sample, c) present mother-daughter
profiles with emerging themes for each dyad, d) present essential themes, e) summary
and description of themes, f) interpret the phenomenological dimensions of the themes,
and g) provide a descriptive interpretation of the phenomenon.
The purpose of this study was to explore and describe the lived experience of
daughters and their elderly mothers in a caregiving situation. The questions answered
were: "What is the experience like for you to receive care from your daughter?" and
"What is the experience like for you to care for your mother?" Understanding was sought
in the participants' stories to identify themes and dimensions that transcend the
experience. Common themes were identified to create a whole and to describe the
dimension of the phenomena to answer the question: What is the experience like for you
to give or receive care?
This section will describe the participant sample and give a generalized sense of the
whole from the interviews and transcriptions.
The participants, five mother and daughter dyads were residents of one coastal
county in Central Florida. Two dyads responded to an advertisement placed in a local
Florida senior newspaper. The nursing director of a senior center responded to a second
advertisement and recruited six other dyads for the study. Three of these dyads
participated in the study. The final number for the study was five mother-daughter dyads
Participants met all of the inclusion criteria. Mothers were over 70 years of age.
The average age of mothers was 87.5 with a range of 82 to 93. Daughters were over 40
years of age and were the primary caregivers. The average age of daughters was 55.4
with a range of 49 to 63. The mothers had physical restrictions that required assistance
with one or more activities of daily living (ADL), such as, bathing or eating; or with two
or more instrumental activities of daily living (IADL), such as, shopping or
transportation; or one health care activity, such as wound care or tube feedings. This was
determined at the time of the initial interview by an assessment of ADL's, IADL's, and
health care activity (Appendix A). Mothers and daughters were cognitively intact as
determined by a mini mental status examination (MMSE) (Appendix B). All participants
scored above 25. Thirty was the maximum possible score and 20 was the minimum for
inclusion in the study. All participants lived in the same residence or in close proximity.
Four dyads resided in the same home. One mother lived in her own home, but near her
daughter's residence. The average number of years of close or co-residing and caregiving
was 6.5 with a range of 5 to 9. Each daughter was an unpaid caregiver for her mother.
Each participant signed an IRB approved consent form (Appendix D) prior to
participation in the study.
All dyads reported a comfortable life style with the average annual household
income of 52,500 dollars, although three of the mothers would be unable to sustain
similar living conditions if living alone. All of the dyads reported their relationship as
The adequacy of the sample size was not predetermined before data collection. It
was determined by the completeness and quality of the information provided by the
participants rather than by the number of interviews. This was achieved when the
researcher had information redundancy, or the information and understanding was
complete in the circular, iterative analysis of the interviews. This type of theoretical
sampling allows maximum access to data that fully represents the phenomena and
contributes to understanding of the phenomenon (Morse, 1994).
Sense of the Whole for the Sample
"What is it like for you to be cared for by your daughter?" When asked this
question, I found the mothers reluctant to express what they were feeling. Rather, they
used broad terms to describe the experience. When I looked beyond the language, read
between the lines, I found the unspoken words alive with meaning beyond the words that
were spoken. Four of the five mothers described themselves as independent and self-
sufficient before the physical limitations came "creeping up" on them in the form of
chronic and debilitating physiological conditions which made it necessary for them to
need help. Daughters, overall, described their mothers as independent and strong willed
women. In the transition to needing care this often resulted in "a butting of heads" and
struggles to maintain their independence.
Daughters, on the other hand, were open and expressed emotions and their inner
thoughts of the caregiving experience. They described the ups and downs, the joys and
tribulations of caring for their mothers. Daughters also told of the familiar conflicts
between siblings, conflicts that often appeared to remain hidden to their mothers. Four of
the five daughters were married and expressed gratitude for "supportive husbands." The
one unmarried daughter had a sister who supported her and relieved her for respite.
Daughters described caregiving as a spiritual experience.
This section presents the individual stories and emerging themes of each mother-
daughter dyad. To protect identity and yet give a sense of the persons in the experiences,
fictitious names were assigned to each of the participants. These were chosen at random
and have no relationship to the persons they represent.
Anne has been caregiving her mother Laetitia for seven years. She was proud of
having been able to maintain Laetitia in her own home that is close to Anne's home.
Laetitia feels safe and cared for in her own home environment. She was proud of the fact
that she lived alone and felt safe knowing her daughter was close by and that there was an
intercommunication system between the homes. Laetitia was aware that the "very good
care" Anne provided allowed her to continue to live in her own home with a quality of
life she would not have had otherwise. She repeated many times with gratitude the
numerous tasks her daughter did for her. "She takes good care of me. She gives me my
food and takes me to the doctor. I don't have to worry for anything. My daughter is there
and takes care of me. She is very good to me." While Laetitia has other children who live
at a distance, she stated that Anne "is the only one I have to take care of me. She is my
family." This was spoken with an expectation that what a family does is to take care of
each other. For Laetitia the experience of receiving care on a day-to-day basis was that
her daughter was there for her and helped her with the physical tasks she could no longer
do for herself. "She is my family. She takes good care of me. Otherwise, I would have no
one to take care of me. She takes care of everything. "
Laetitia had multiple health care needs that required ongoing attentiveness on
Anne's part twenty-four hours a day, seven days a week. She required the most care of all
of the mothers' in the study. This required total commitment from Anne who also cared
for her father for five of the seven years she has been caregiving.
Caregiving for Anne was a full time job. To achieve her commitment she chose
early retirement. She was motivated by a desire to devote herself full time to providing
care for her parents. She said:
I been taking care of my mom and my dad, I would say for the last six or seven
years. I had to retire to be able to give them more of my full-time. It was difficult
working and taking care of both my mom and my dad. So, I retired to be able to
give them more care.
For the past two years since her father's death, she cared for her mother with "the
best care that I can and I know she's going to get the best care in her own home." "Best
care," for Anne, was equated with being there for her mother when she needed her to
fulfill her needs. "Best care" was reflected in her worry for her mother's safety. This
worry brought her to check on her mother every two hours and to be constantly aware of
her mother's activity even in the middle of the night via a communication system. Anne
describes this constant vigilance as follows:
I'm very tired. I don't get a full night sleep because I am up and down every two
hours. We hear her rustling, getting up and down. We hear her walker. We know
when she's up and down. My husband and I hear her. I am up and down, and I'm so
aware if she needs me or calls me. She knows I'm there if she needs my help or
care. I have a monitor in my house and I wouldn't leave her alone if she didn't have
her lifeline. I feel safe leaving her with her lifeline because I know she can just hit
that button, and she does and she has. She has a problem sleeping at night and the
problem I think is that she gets up very early to go to day care. In the evening, I
will feed her, or help her shower and then lay her in her chair to watch TV. I put
compression pumps on her legs and she falls asleep. Well, that's my time to go
home. My husband and I eat and so I'm gone sometimes for two hours. I may call
her in between but I'm gone at that time. And, I guess it's the nap that she takes, so
that when I come back over here at 830 p.m. to put her to bed, she'll take her pills
and her eye drops and I'll put her bed. Then she'll sleep for two hours, and then
she's up like every two hours. It has been constant duty everyday. I'm so aware if
she needs or calls me.
She expressed a value that caring for family is an expectation and obligation,
regardless of the sacrifices, the fatigue, the constancy, the worry, and the restrictions of
lifestyle that accompany caregiving. Anne spoke of all of these aspects of caregiving with
tearful emotion. She expressed being "very tired," not from the "physicalness" of the
caregiving, but from the emotional constancy of being there for her mother. She planned
all the activities in her life around her mother. Anne's own feeling validated Laetitia's
expression that her daughter was the only one she has to take care of her. Even with
outside paid help and her mother's participation in an adult day care program, Anne said
"in mother's mind no one but me can do the job. She has trust in me to take care of her."
Even when someone was with her mother and she went out for dinner with her husband,
Anne worried that Laetitia would call her; because her mother felt that, she was the only
one who knew what to do for her. Anne said:
I do have someone who comes in to help which is much appreciated. It's a help for
me. If I didn't have anyone coming in here and helping me, that would be an extra
duty that I would have to do. In fact, the girl was on vacation for three weeks and I
missed her very much, because I ended up taking care of mom's total physical
needs. The personal care aide gives her a shower three times a week on Monday,
Wednesday, and Friday. She does laundry and light housekeeping. So, that does
take some burden from me or I would have to do it. I do her shopping and her
cooking. It's a full-time job. Some days she is in day care and that's a big help. It
does give me a break because when she's not in day care I'm constantly here every
hour or two checking on her and making sure that she's okay. I do have some
respite on Mondays and Saturdays and that gives me a break if I go out to dinner
with my husband. Then, I don't have to worry for four hours that I know someone
is here taking care of her. However, even though somebody is here Mom doesn't
think anybody can take care of her but me. She still doesn't trust people is far as
giving her pills and if she gets the jitters and if she needs to take her pill, she'll call
me and see what she can take. Or, if I have her pills sitting out for dinnertime and
someone else is with her, she'll have them call me to check to see if it's okay for her
to take it. She doesn't trust. In her mind, she feels there's no one but me who can do
the job. She has trust in me to be able to take care of her. She'll tell people that if
something happens or if I have an ache or pain, or headache or my legs are hurting
me I just have to call my daughter and she knows what to give me, no matter what.
Anne found rewards in what she referred to as a "stressful job." She found
satisfaction in providing the "best care possible" for her mother at home, and in knowing
"that I'm doing a good job."
I enjoy taking care of her and I give her the best care that I can. I know she's going
to get the best care being in her own home than as if she were in a nursing home or
another facility. I know that they're unable to give her the care that I can give her.
She is comfortable. Being around family, gives her comfort. So, whenever she
needs me, I'm here to take care of her and to fulfill her needs. And, it's been a tough
time. It's been a tough road but I take a day at the time and I know that I will be
rewarded for taking care of her someday.
Anne's entire lifestyle was based on consideration of her mother's needs. There
were times when she chose not to do things with her family because she considered her
mother's happiness and ability to participate. "There are times when I can't do things
with my whole family because of my mom. I consider her and what I can do to make her
happy. But, it is stressful" (started to cry). She was grateful for having a supportive
husband and daughters of her own; however, she bore the overall responsibility for her
mother's care. She did this not only out of obligation but also for love of her mother. Her
brother has been non-participatory in the mothers care. This has been distressing for her.
I think it would have been helpful if my brother had shared part of the
responsibility. I think it would have helped physically and emotionally. He doesn't
call, doesn't come to visit, and doesn't think that what I do is a big deal. Sometimes
when I need a break, I'll ask my brother for funds to help pay for someone, and he
doesn't want to pay, to share, to give me, you know, to give me some money for
someone to sit with her. He could care less. According to him, I should put her
away. You shouldn't be doing this, just put her away. I just can't do that. There is
no way I can put her away. I know that if I put her away, she would never last.
Laetitia's physical needs require a great deal of Anne's energy and attention. While
Laetitia is unable to reciprocate physically Anne feels there is an exchange with her
She's very appreciative. She thanks me all the time for taking care of her. She
knows that I love her. We love one another. She knows that with my help and my
care that she's lived as long as she has because she knows she wouldn't get this type
of care anywhere else.
One theme that emerged from the experience of the mother in dyad one was the
deep appreciation and gratitude she felt towards her daughter. She felt her daughter's
constant presence and believed she was the only one she had to care for her, although she
did receive some assistance from a paid caregiver. She expressed feeling cared for and
had an expectation that her daughter would take care of everything as that is what family
does and she "is my family." This allowed her to remain safe in the familiar environment
of her own home.
For the daughter, there was a sense of family obligation and also a loving
commitment to provide the best care she could for her mother.
In order to accomplish this commitment she experienced restrictions on her
personal life, fatigue from the constant expectation, responsibility and worry for her
mother's safety and well being. Her life orbited about her mother's needs and making her
happy. However, she found contentment in knowing she was living her belief in the
family value of being here in a time of need and preserving her mother's integrity. She
also found solace in her faith and ability to "take one day at a time."
Pearl and her mother Ruby lived together for several years before Ruby's need for
intensive care. Ruby's world at home was confined to her recliner chair. Due to injuries
from a fall, her physical limitations prohibited her from walking alone. It was difficult for
her to navigate and she had a fear of falling. For a woman who prided herself on her
vigorous activity and independence, this was difficult.
It is difficult getting out of this chair without (my daughter) holding my arm
because I'm so, so unsteady and once I get up and turn around to go to the
bathroom I'm fine but I can't go by myself. I tried one day and I fell. Fortunately, I
didn't hurt myself. The doctor tells me I must walk. The doctor should know,
shouldn't he? I agree with him it is a good idea. I can't walk (appeared upset and
raised her voice) that much, I'll fall. I don't know what happened but a couple of
months ago I was walking by myself. It has been very difficult. I wondered if I am
giving into myself too much because I have (my daughter) here. If I wasn't living
with her, I'd have to be in a nursing home.
Ruby saw her daughter as "my remedy" and rescuer from the dreaded nursing
home. She expressed great appreciation for her daughter, and desired that her other
children and grandchildren recognize all that her caregiving daughter did for her. She
wrote to them often to reinforce this.
It is wonderful to have my daughter take care of me. I'm sure other daughters' in
this world are the same but [my daughter] is wonderful. I hope that the other girls
are the same but she is wonderful. I hope my other children realize. I was writing a
note to each one of the children to tell them how much she does for me. I am so
lucky to have her. I don't know what I would you without her. Oh, she's just great.
Could not make her any better. She is as good as they come. In fact, I couldn't pay
for her to be any better. I am lucky that I have my daughter. What would I do
without my daughter? I think I have told you how much I appreciate my daughter.
She is the most important person in my life.
Pearl viewed her experience, as a positive one that has "all in all has been positive
and gone so well." She expressed great delight in "always having a good relationship
with mother. "Not like girlfriends because I've often been away but I came home on
holidays and it's actually been very good." She was grateful that as a single woman, in a
good financial situation, she did not have to work and was able to be a full time caregiver
for her mother.
I feel appreciative that I'm in a position to do it [care for her mother]. I couldn't if I
worked. I just couldn't do it. I would probably be crazy (chuckles). And, I don't
have the responsibility of children. I'm able to do this full time and I don't mind
doing things around the house.
It saddened her to watch her mother's continued physical decline while her mind
remained active. Pearl worried about what would happen to her mother if she herself
became ill and could not care for her mother. She worried because:
She couldn't be left alone. If her balance were better, she could. [People] with
Parkinson's walk pitched forward because they feel that they're going to fall
backwards. I feel fear is a factor for her, but she is also stiff. She is doing better
with increased medication but on the other hand, it kind of knocks her out. I'm sure
there is a factor of fear. She doesn't fall that much; thank goodness, it has been a
year since she fell.
Pearl did have a sister in another state with whom her mother lived in her healthier
days and who was willing to assume the caregiving. However, her sister worked and had
children and the daily routine at her home was "more active and less conducive to
caregiving although she would have more social activity."
Day-to-day, the experience of caregiving for Pearl revolved around doing all that
she could to keep her mother as active and involved as possible and keep her safe from
We've done a lot more in the last couple of months. We're getting a routine of
going to church. I need to walk her every hour and get a routine on the physical
She worried, too, about making the "right decisions," particularly, when her mother
had bouts of acute illness. The caregiving experience engendered a "deepened spiritual
life and maturity" and "inner peace."
It helps a lot to have faith. This past year when she almost died, I was alone in the
hospital. I started to panic in asking if we were making the right decisions. She
didn't want to be inturbated. She didn't want all that stuff. She tends to be a person
to want to make things easier. And I just had a peace that came over me. It was
good. I said: "God, please help me with this decision." I don't know how people
manage when they are trying to do it on their own when tragedy or challenges hit. I
guess that is why some people drink and do drugs when they don't have a spiritual
something to fall back on.
Pearl expressed that from the living of this experience she came to a degree of
"spiritual maturity, an opportunity for growth, patience and, love."
Feelings of appreciation and gratitude were expressed by the mother in dyad two.
This was expressed not only to her daughter but to her other children who supported her
daughter in her caregiving role. A self proclaimed independent woman, she was
constrained by her inability to walk independently; and the fear of falling that in the past
had resulted in injuries. Her daughter's constant presence was a reassurance of safety for
her. She regretted her inability to do more around the house to help her daughter,
however, provided companionship and continuation of a dyadic relationship of sharing a
home together that began prior to her needing assistance with her daily living activities.
The daughter in dyad two found meaning in keeping her mother as active, and safe,
physically and mentally, as possible and in their companionable relationship. It was
difficult to observe her mother's continued, gradual physical decline. She believed her
faith sustained her in the challenging aspects of caregiving, such as, the worry about
making right decisions regarding her mother's medical care needs. For this daughter the
evolution of the caregiving experience was for her an evolution in spiritual growth and
Florence and her husband have lived with her daughter Cassandra and her husband
for five years. Florence required the least amount of care of all of the mothers. However,
in addition to her own needs she also needed assistance with caring for her terminally ill
husband. Florence thought the experience of being able to be with her daughter and
receive help from her was wonderful. Cassandra had lived with Florence in the past when
Cassandra needed help and "now the tables are turned." She characterized her
relationship with her daughter as always having been good, "the same as when she was a
little girl." Florence was happy to reciprocate with doing little things around the house,
such as, laundry, and cooking. She described her experience as:
Being with my daughter is wonderful! I like it a lot. I really like it. She's lived with
me and now the tables have turned and it's not bad at all. It is a good situation. I
like to do things for people. I like the idea that I can help them. Like little things--
doing her laundry, I don't mind doing that.
Her daughter monitored her mother's health care, her blood pressure, blood sugar,
related dietary needs, and helped her mother care for her step father.
I get [daughter] to help me with my husband. He is in a hospital bed now and
doesn't want you to leave him for very long, maybe because he is getting a little
childish. It's hard on me, and she helps when she can. But when the time comes I'll
have to have some outside help. I told him I would take care of him as long as I
Florence had several sons who while they "are all good to me, it is the girl who
does the most toward her mother." Florence talked of being a very social woman who
loved people and enjoyed doing for others all her life. For social contacts, she attended
the senior center a couple of days a week. This afforded her a degree of independent
activity and sense of autonomy in her life. It was her time to "relax a little bit."
Cassandra had a strong belief that caring for elderly parents was "part of who we
are as children." Her philosophy was that if you can, you really should do it. It doesn't
make it easy having a philosophy like that because now after five years of living with my
mother and watching, it's emotionally difficult
Among her friends, she is a minority because "they think that I am crazy to do such
a thing." She described her life as a caregiver as "emotionally difficult." It was not so
much the physical challenges of care but the observing of her mother "growing older and
older and older." In the five years, that Cassandra had assisted her mother; this emotional
worry loomed larger for her as they developed a closer relationship.
After five years of living with my mother and watching it, it's emotionally difficult.
Not so much the job of being the daughter but its difficult watching [her] growing
older and older and older. So, that part of it is emotionally not easy. And I
mentioned that as we grow closer and closer it is harder for me to get further away
without the emotional concern as she grows older. You know .. this is an
opportunity for me to be here with my mother and this is an opportunity that I will
never get again. So we're doing the back and forth being daughter and mother. At
this moment, I am feeling it is really quite a blessing. I think too, that when I was a
young girl, I kind of knew that I would be the caregiver. I've known it in my heart.
She expressed concern in maintaining a personal balance in her roles as wife, artist,
teacher, daughter, and caregiver. Cassandra was challenged to establish clear boundaries
to meet her own needs and to be the caregiver. For her, learning caregiving was learning
boundaries and learning to live together.
And, those are not easy when there is an intense merging, and then sort of the
disengagement of that in order for me to have a life and to sort that out. At what
point do I have to not be taking care of my mother and take care of myself? So my
concern is now, well, how do I get away and how do I continue to have a life and
still be here for her. I have never had the experience of mothering a child. So, in
some way maybe that has been diverted into mothering my mother. And so, those
are the questions that I ask myself. When is it time to nurture, and when to have
some clear boundaries? That's a real challenge--in any caregiving situation. It's a
challenge. It is a complex relationship, very complex. The caregiver, care receiver
relationship but also the mother-daughter relationship.
Another challenge was learning to live together in a small house. She likened it to
roommates adapting to each other's little idiosyncrasies with the accompanying
emotional struggles and battle of wills.
The challenges are daily in terms of the little things that really don't mean a lot, like
the cooking in the kitchen. It is sort of my way or her way. I suppose that it is like
any problem you would have with a roommate. Of course, it's also maddening
when [there are] emotional struggles and power plays and all those things that, you
know, the battle of wills that can happen. I just pray everyday for strength to be
able to do it. She is still physically capable of doing her own laundry, some
cooking, and I take over in areas where she can't do and that's taking care of her.
So, I help in the ways that I can. I take care of her health needs; I'm very much
there for her. I also do laying on of hands. So, I do a lot of the alternative health
care with her. I make sure she gets to the acupuncturist instead of always running to
the allopathic (medical doctor). I help her to keep her blood pressure down and
monitor her blood sugar for her. In that way it gives me an opportunity to practice
all those things I tell everybody else to do in workshops.
In spite of these challenges, she characterized her caregiving experience as a
blessing that led to self-discovery.
It has really been a blessing in many, many ways because I'm able to find out who I
am through my mother, and getting to enjoy the moments which I know aren't
going to last forever. So, it actually has been a blessing because at this time my
mother has actually been able to help me. It has been quite beautiful in a deep and
Cassandra knew in her heart from the time she was a young girl that there was an
"unspoken, unwritten contract" for her role as primary caretaker for her mother. She
described her experience of caring for her mother as having been "a transforming
experience rooted in my personal spiritual beliefs of loving kindness and striving to live
in the present moment." For Cassandra this created a "profound spiritual connectedness
that has been a deeply blessed way of being that goes beyond scientific reasoning, a
mystery." The following is her description of this connectedness.
Kindness is an important part of my spirituality and being in the moment which is
oftentimes unreal and not easy to do. But, sometimes we're sitting together and
playing cards, or just a few moments ago; I sensed a deep connection between my
mother and me and in that way I felt connected to everything. Part of my
spirituality is the goddess tradition that has a very profound connection to the
mother. I believe she is my creator, my creatoress that I came from her. So, I think
that sense of connectedness and oneness, that feeling at one happens when we're
together. I get these profoundly connected experiences that I've also had in nature
and to me that's a very deeply blessed way of being. So, sometimes we're playing
cards and I think, it's just a beautiful day or it's just a beautiful moment and I think I
will remember this forever. And, I don't think I would get these things with just a
once a year visit or twice a year visit. I think living with my mother on a day-to-day
basis allows that to happen. We have these connections that are beyond scientific
research, but to me are spiritual connections. It is a little scary too; because of how
connected you can be to somebody and [how] to sort out the sense of self.
Cassandra had uncertainty and worry about the future and her ability to provide for
her mother's increasing physical needs, the possibility of uprooting her with a
geographical move and the isolation of caregiving. She spoke passionately about the need
for intentional communities to care for our elderly.
If I had children or was closer to families with children, I would get to balance
watching the end [of life] with new life and children. That would bring balance to
what seems to be lopsided living. It is difficult to be isolated as we grow older and
care for our elderly parents. The isolation is very difficult. It would be a lot easier
in community, intentional communities, where everyone really understands the
other. In village life, people are together, share wisdom and community. For just as
it takes a village to raise our children; it takes a community to care for our elderly.
The mother and daughter in dyad three had great appreciation for each other. The
mother relied upon her daughter to provide a safe environment for her and her terminally
ill husband. The daughter, in addition to attending to her mother's health care needs,
assisted her mother in caring for her terminally ill step-father. For the mother, the
experience of her daughter's caregiving allowed her to maintain a quality of life that
would have been very difficult otherwise. She reciprocates by assisting to a great degree
in the household chores she is capable to do.
The daughter in the third dyad found that the experience of watching her mother's
aging process was emotionally difficult as was the challenge of learning to live together.
She did have a dominant experience of connectedness that was for her a spiritual one and
a "blessed way of being." She did, have to work at balancing her caregiving role with her
other life roles. She struggled to know when and how to set boundaries to nurture herself
and her mother. This daughter worried about providing for her mother's increasing
physical needs and being ill prepared to meet those. Overall, her experience had a
profound spiritual dimension.
The caregiving relationship of Naomi with her mother, Ruth, grew out of Naomi's
concern for her mother's safety in her environment. Naomi had helped her mother live
independently for about three years, however, Ruth had increasing health care needs, and
the neighborhood in which she lived had become unsafe.
I began to care for my mother about 10 years ago. She lived on her own in a little
house. Gradually she began to need more care. She is a diabetic and was having
more and more problems with her feet and her walking. One Sunday, several years
ago, my husband and I went to see her after church on Sunday and found a
homeless person sleeping on her back porch. We realized that her safety was at risk
and so we asked her to come live with us. The experience that I've had taking care
of my mom has been very rewarding for me, because I'm here and she is very
In the beginning of the co-residential arrangement, Ruth was reluctant to move in
with her daughter and son-in-law. She admitted that it was hard to give up her own home
and being her "own boss." The initial adjustment was "very hard" for both mother and
Another decision that Naomi and her husband made was to invite a friend of
Ruth's, who was alone and needed some assistance to move in with them. Naomi's
friends thought she was "crazy" to do this. However, this proved to be a good decision
since Naomi is employed full time, and the two women were companions for each other
and shared some of the minor household tasks. Naomi said:
A friend, who had lost her husband, moved in with my mom about four years ago.
Everyone thought we were crazy when my husband and I let another elderly person
move in. But, they're so mentally alert and both help each other in the physical
capacity. When my husband and I would choose to go out for a date--Mom wasn't
left alone and feeling neglected because they had companionship and friendship.
So, that helped tremendously. Not that I would move a friend in earlier so that
they'd have that buddy system. But, I think that made her feel that she sort of had
someone she could talk over her problems and concerns with. They have the same
concerns and problems. She didn't feel that she was the only old person in the
home. She had someone to go through that process with.
Ruth characterized her relationship with Naomi as "getting along very well." For
her, after the initial adjustment, the experience of living with and being cared for by her
daughter was a "good and wonderful experience." Although she had multiple health care
needs, she was ambulatory and relatively independent. Ruth delighted and prided herself
in being able to do the household chores while her daughter worked fulltime. She was
able to cook, do the dishes and laundry, and walk the dogs. Now, wheelchair bound,
Ruth's body language portrayed a calmness and serenity. She expressed gratitude for all
the things her daughter did for her and for her ability to live a good life. Ruth's greatest
challenge was the loss of her ability to get around, to do what she wanted, to care for
herself and to help her daughter.
The physical care has been so much because I can't get around. This means so
much to me, because I can't get around and do what I want to do. [She] makes sure
I take all my pills. I am on so many pills. She tucks me in and kisses me goodnight.
And the same thing in the morning, she comes in. I'm usually up and I try to wash
and dress myself and get ready for breakfast. Her time is so limited. It's very hard
for her to get sick. That would be disastrous. She is the main cog in the wheel.
She continued to do as much as she could to "hold the fort down." She folded
clothes and did the dishes with the help of her elderly friend, Connie, who came to live
with them several years prior. Although older in age, Connie had more robust health and
fewer physical limitations. Together they made a team to lighten the burden on Naomi.
I still try to do as much as I can for her, which isn't much, folding clothes. And I
have the dishes being washed now. I get them out and my friend will put them
away because I can't stand up on my legs. I can't get up to do the things I did
before like cook dinner and do everything so she wouldn't have to do it. Now she's
chief cook and bottle washer. Like the wash and I do try and take care of the
dishes. I'll get the dishes out of the dishwasher and she'll [her friend] dry them and
put them away. I can't get up and walk around. So she [her friend] helps. It helps.
Then she feeds the dogs for lunch, takes them out for a run. It helps a lot. I go to
Easter Seal and I make things. I like wood. I paint wood, I fix wood, and I give it to
her. She [daughter] takes it to work and gives it away for Christmas gifts. So, I've
done quite a bit. I've fallen four times and it's very hard for me to adjust to that.
I've had a lot of pain. I broke too many bones and it's hard for me to get around.
The biggest problem is that I can't get up and do the things I did before like cook
dinner and do everything so that she won't have to do it. Falling four times is a
grind, you know. I still kind of do a few things around here. I dust and put the
magazines away on the table. Try to keep up with the news and let her know what's
going on. (Chuckled).
Ruth was attuned to her environment and prided herself in keeping up with the
world news. No longer able to reciprocate by doing many of the household chores she did
at one time; she kept abreast of current events so that she could brief her daughter when
she came home from work. She recognized the responsibilities that accompanied her
daughter's caregiving role while also working full time. She wanted to do all that she
could to lighten her daughter's heavy load.
Loss, a sense of time passing quickly, and a deep sense of gratitude to God was
evident throughout the telling of Ruth's story of her "being better every day" because of
the wonderful care she received from her daughter. She was proud of all her daughter had
accomplished. She admired Naomi as a professional, a daughter, and a caregiver.
The challenge for Naomi in the transition to caring for her mother in her home was
in establishing their roles as mother and daughter, caregiver and care receiver. Her
concern and worry was to allow her mother to have "control of her own life and
decisions" while Naomi continued as the authority in her own home. She portrayed her
mother as a strong person, always used to being "the boss," a woman with good coping
skills who raised her children alone "scrapping and scraping her way through the world."
This "take charge attitude," however, at times led to conflicts with her mother. Naomi's
approach to this was to have what she referred to as "frank talks" with her mother. She
wanted to assure her mother that she was still in control of her own life decisions.
However, at times, Ruth would have to accept help; and that Naomi was the authority
when it came to matters of their home. The talks were ongoing and "helped
tremendously" to keep roles clear. Speaking of this Naomi said:
Naomi was able to provide for paid caregiver help several days a week for Ruth's
personal care, doctor's visits, and other daily activities. This freed Naomi from some of
the physical caregiving and allowed her to maintain her relationship as a daughter with
If Naomi could change one thing in her caregiving experience, it would be to was
have "active support in the caregiving process by her sibling," an older brother. Naomi
was tearful when she spoke of this. The pain that Naomi experienced from the "excuses"
for his lack of attention and unwillingness to participate both financially and emotionally.
She felt that she "set herself up" for this situation since she did not involve him in the
decision regarding Ruth's need for more supervised care. Over time, Naomi has used this
as an opportunity to understand and forgive and, a "letting go of the hurt." They have
since mended their relationship. Her realization was that "it needs to be a family
decision" when considering elder caregiving.
If I could change anything I would like to have both siblings share the
responsibility and that didn't happen. If not an equal share, at least where both
siblings took an active part in the caregiving process. That has caused a lot of
tension and friction (sad and tearful). I think when you take on the responsibility of
being a caregiver you need to understand that unless it is a family decision with all
the siblings--I think you need to understand and get in your mind that there may or
may not be help. But you cannot let that influence you're succeeding at what you
are attempting to do. Once I worked it out and understood that I could let that hurt
go--things have been much better. I have a much greater peace about what is going
During episodes of acute illness, when her mother was "medically needy," Naomi
felt "the physicalness, the medicalness" of caregiving was overwhelming. These times
were very hard and speaking of them evoked tears. She had home health nurses coming
in to help, but "not at two o'clock in the morning when mother was in severe pain".
Naomi did what she did out of love. She believed that she needed more information and
preparation for the nursing skills required. Naomi also believed she had to do it all, to be
So, the medicalness of the caregiving aspects were overwhelming. I think if I were
to go back and know what I know now during that period of time when she was so
medically needy--it would have been better if she had been placed where there was
full time nursing staff. I was doing a job that I was not qualified to do out of love
for my Mom. It was hard. It was really hard (tearful). No one really taught you how
to do those things. It was just medically overwhelming and I'm not trained to do
that. Since then, one of the frank talks I have had with her is that as much as I love
you--when the time comes that medically you need more care then you and I will
find a place where you feel really cared for. And, that was very hard to do because I
didn't want her to feel threatened. And, that as she got more needy that she would
become such a burden that I couldn't give her care. That was a real fine thing to try
and work out to have conversations about I've had that conversation with her
several times to try and work things out and to let her know that I am not a nurse. I
am her daughter and the feelings of trying to care for her and not making the right
decisions cause me great fear and great guilt. What if she were to die in my care
when if she had been a facility where they had a nurse she wouldn't die. You know
they would be able to give her the right kind of care. Those kinds of conversations
are ongoing. Of course, she doesn't understand as fully as I would like her to
understand. She may feel that she may just be too much for me to take care of and
that's just a way out of my taking care of her, I hope not, but that's a concern. I
know that God will help us cross that bridge when we come to it.
I wanted to be superwoman and that took a major toll on me. The medical attention
she needed was overwhelming. There would be days when I wouldn't sleep at night
because we had an intercom system at home and I would keep it on. As the
infection spread up her leg, of course, the pain was excruciating. She was on a lot
of painkillers so her mind was not normal. I thought I was losing my mind. I think
at that point I really needed to get medical help for her and I didn't. And, that was a
mistake on my part. Now, we did have home health. We did have nurses coming in,
but it wasn't on a daily basis, and of course, that certainly wasn't at two in the
morning. You know, my husband found me one time at two a.m. in the morning
leaning against the counter in the kitchen asleep just waiting to hear the next cry of
pain. One time she was sick with a cold and she was having trouble breathing. It
was late afternoon and my husband and I said--if you need to go to the doctor, let's
go now. No, No. Then, she waited until 0200 in the morning and decided she
needed to go to the ER. I said no--you have waited this long--you can wait until
0900 in the morning. No, I'm going now. And, I can honestly remember driving her
to the hospital at 2 a.m. in the morning thinking this is my all time low. That was
the start of the period in those 5 years where I about got physically worn out. That's
when our family doctor got involved. I was physically worn out. I was emotionally
worn out. You should never let yourself get to that point. That's my advice for other
daughters who are going through this. You need to recognize the signs that
caregiving has taken over 99%. I think that was the dramatic turn around. Then our
family doctor hospitalized mom. I got a rest for almost four months that time and
kind of regrouped.
It was a constant worry that she was not trained to do it all and to make the right
decisions. This created great fear and anxiety for her. She feared her error might hasten
her mother's death. She considered placing her mother in a nursing home. At one point,
when her mother needed hospitalization and post-hospitalization rehabilitation, she had a
break to reevaluate the situation. However, after she and her husband visited several
facilities they came home, cried, and said: "We can't do this to Mom." Since then, she
engaged outside help, asked for, and listened to the advice of professionals. Naomi
realized caring for her mother was a team effort and that she did not always have the best
answers. If she was faced with the choice of caregiving her mother again, Naomi would
do it "in a heart beat." "Caregiving," Naomi said, "is a biblical calling that one needs to
follow for as long as one is able."
I strongly feel biblically that you're called to take care of your parents as long as
you are able to give that kind of care. I feel very strongly about doing what I do. To
me it was not easy in the beginning. It [caregiving] is a wonderful gift of love. My
mother blesses me every day. She [her mother] is a trial and a blessing every day.
It was for her a "wonderful gift of love" by which her mother "blesses her every
day." With laughter she said that her mother was "a trial and a blessing every day." Her
one regret was that she felt that the focus of their relationship switched from mother-
daughter to care receiver-caregiver and that the mother-daughter relationship was not as
strong as it once was. She expressed that "caregiving love is deeper than mother-daughter
love. Caregiving love is rooted in nurture, worry, and safety. Mother-daughter love is
more rooted in memories and the fun you have as a mother and daughter." To preserve
this mother-daughter love, Naomi attempted to take her mother out for dinner and to do
fun activities dissociated from the caregiving. Naomi was reflective in stating her need to
"know I am still her daughter." She found it hard to balance being a caregiver and a
daughter. Through the experience, however, Naomi came to a "real sense of who I am as
She always has been a very strong person. When she first came, she played the
mother in charge and I was the child. I had to talk with her and tell her that
although she was still my mother, however, now some things had changed. I'm kind
of the adult in charge of you. Simply saying that to her, I also let her know that I
would never take away her decisions. I would always try to talk through decisions.
I would never take that away from her. She has always been used to being the boss
because she is very strong willed. She raised us alone and always had to sort of
scrap and scrape her way through the world. So, she knows how. She has some real
good coping skills. So, to try and turn that around and, yes, to let her know that she
was still in control of her own life and her own decisions but, that there would be
times when I would have to help her guide those decisions. I was real frank about
that; and there would be times when she would have to abide by my decisions,
because I realized that this is our home and that somebody had to establish the
authority. I just had to talk with her real frankly about those things and most of the
time it went real well. Sometimes we would butt heads, and I would say if you are
not comfortable we need to find a place where you feel safe and if this is not it then
let me help you find another place. Those kinds of frank talks would benefit the
caregiver a lot sooner (laughs). That just made a world of difference.
I really need to know that I am still the daughter. At home, I'm on the phone, and
she needs to go to the potty whereas in a mother-daughter relationship it wouldn't
be that way. So, it's important for me to have the mother-daughter type of love.
Now, she maybe not feels that that's missing. I feel that with me being the caregiver
that the mother-daughter bond is not as strong. I have to weigh that if she was in an
assisted care place I could just pick her up and have fun and wouldn't have to take
care. You know, in some ways it's like dealing with a toddler but, I have to respect
her as my mother. Trying to balance that, that's tough. That's really hard. What I
mean is that if I was just in the mother-daughter situation, I wouldn't have to do
those caregiving things. I wouldn't have to go in and scrounge through her
underwear dresser to look for aspirin or Sudafed, and I have to and then she gets
mad (laughter). I have to make sure she is okay. I have to make sure that she is
mentally okay too. That's hard. It takes away from the mother-daughter
If I had one fear, it's that the mother daughter relationship is not as strong.
Sometimes I wonder that if she had been in an assisted living facility and I just took
her and we went to lunch if it would have been a different type of love than this
caregiving love. This caregiving love is a different type of love than the mother-
daughter love. The mother-daughter relationship has switched to me kind of being
the mother and she being the daughter. I tried for a while but it's my fault. I am so
busy. I tried for a while to do it once a month sounds like so long, and I can't even
do that. We would do a mother-daughter dinner and go to Red Lobster for dinner,
just she and I. And we did pretty good. But now it's not once a month. You know, I
have to clean the house, do the laundry, do the grocery shopping, pay the bills, and
do all those things. I think the mother-daughter love is just kind of not as deep as
the caregiving love. It is based more on fun and memories, where the caregiving
love is based more on nurturing and making them feel safe and secure like a
mother-child love versus the fun you have as a mother-daughter. I try to make the
caregiving fun. I try to make Mom an active part of her care and encourage her to
do things that she does really well. But the relationship definitely switches. I'm
being left in charge and this brings all sorts of relationships and feelings for her as
for me. On Saturday's when I take her to Sam's or we go to the Flea Market or like
even when I come home from work in the afternoon--I'll get her wheelchair and
we'll walk outside and sit on the park bench. And, that doesn't have any of the
caregiving elements in it. That's really important. I don't know if it is important for
her but it is really important for me (reflective). I love her and that gives me great
Safety of environment was for mother and daughter of dyad four, what brought
them together in co-residence. For five years, the mother participated fully in helping her
daughter, who worked full time with caring for the home and their many rescued animals.
The acute illness led to chronic disabilities and a need for intensive caregiving by the
daughter. This mother expressed appreciation and gratitude for her daughter and
continued in small ways to reciprocate and to "hold the fort down." Now, confined to a
wheelchair, safety of her person is a concern.
The daughter was perhaps the most eloquent of all of the participants. The
emerging themes for the daughter in dyad four were similar to other participants;
however, she was more descriptive in the telling of her story. The challenges for Naomi
in her caregiving experience were balancing the roles of caregiver and being a daughter,
concern that caregiving love was stronger than mother-daughter love, maintaining and
preserving her mother's integrity and autonomy within her present abilities, realizing that
she could not do it all, and coping with the overwhelming fatigue of constancy of
caregiving. She worried about making right decisions and most particular about her lack
of knowledge and skills to provide safe and effective care for her mother. The balancing
factors that reduced the stresses of caregiving where her belief that caring for her mother
was a biblical calling, a wonderful gift of love that was a blessing by which she came to a
greater sense of who she (Naomi) was as a person.
Rebecca had cared for her mother, Eve, for nine years. Eve was an active
nonagenarian who claimed she always had a great relationship with her daughter.
Without her daughter, she "would not know what to do." For Eve, the care receiving
experience provided great comfort because "she just knows all that I need." Her
daughter's care was care that she "could not pay for." She felt she did not have to worry
because her daughter took care of everything. She worried; however, about what would
happen to her if something untoward befell her daughter. She became tearful and her
voice was stressed when she spoke of this possibility. Her grandsons and son-in-law have
assured her that they would do their best to care for her; however, Eve felt that it was
"not the same as having a daughter care for you." She expressed concern that she took
her daughter for granted and did not give enough in return for all her daughter did for her.
Although Eve is active in a senior day care program, she claimed that her daughter was
the most important person in her life.
[My daughter] takes care of everything. She takes care of everything so I don't
have to worry. I do wonder what I would do without her. I asked my son-in-law the
other day what I would do without my daughter. He said, "I don't know." But, what
if anything happened to her, what would I do? (Her voice sounded stressed and she
was near tears). He said he would try and my grandsons say I can live with them.
But, it is not the same, not the same as having a daughter do for you. It is very nice
[having my daughter care for me] because if I want to go anywhere, anyplace, she
takes me. She takes me everywhere. She just knows all that I need. I have so much
medication, so many pills. So, in the morning, when I get out of bed she puts drops
in my eyes. I am so lucky to have her. I don't know what I would do without her.
She's everything, everything I ever thought about in someone taking care for me.
Oh, she's just great. Could not make her any better. In fact, I couldn't pay her to be
any better. For one thing, I do not have to worry. She takes care of everything. I
don't have to worry for anything. My daughter is there and takes care of me. She is
very good to me.
Rebecca believed that her experience of caregiving her mother brought them into a
close relationship, one that they did not have when she was younger. "I really consider it
a blessing that the Lord has given me in this time with my Mom to just really do some
bonding. The Lord knew and I really feel that it has brought us closer. It certainly has
done that." Although the caregiving is confining and at times frustrating, she found the
rewards outweighed the difficulties. A "religious person," Rebecca questioned why, in
retirement years, her life and that of her husband, was limited by caregiving. "To me, it
was not easy to understand because we felt that the Lord had called us to a mission and
after we accepted Mom fell and had to have brain surgery. It was hard for me to
understand why the Lord would have called us."
The constancy of caregiving limited their activities. Caregiving limits me as to
what I can do. If we go on vacation, if we go anywhere then I have to take her with us,
which is not always good. It's not as easy for us to have things taken care of here when
we go somewhere. Sometimes my husband and I would like to do something together and
that is not real conducive with the situation. As far as frustrating, that would be the most
frustrating. Thank God, there is day-care. That has just been the most helpful. Before I
had gotten day-care, I was doing this all on my own and it was just very hard. Although
daycare for her mother did ease the burden, there were limits to what Rebecca and her
husband could do.
Rebecca believed that the spiritual lessons she had to learn was patience and to find
good in every situation. She worried about not being attentive and patient enough. She
focused on things that her mother enjoyed.
She is so easy to care for. It's easy to forget to do things for her because she doesn't
demand. One of the rewards is that I have learned patience. I have to really stop
myself sometimes because I would get frustrated and I would have to stop and
think, okay, this is really a very little thing and, you know, just be patient. You
need a lot of patience.
You need to look for the good in the situation, not look at how it is going to disrupt
your life but at how it will enhance the life of the one you are caring for. It is hard
for her. She had a total change of lifestyle, whereas, for us we just had to expand
our lives to include her. She had to totally change the way she lived. I am sure that
was very frustrating and she never complained. And, not to make them feel guilty
about what you are doing for them. I think, a lot of the time that is what happens
with elderly people who is being cared for. You just need to focus, to zero in on the
things that they enjoy doing and make that available even though it may not fit in
your schedule. You know, the years that someone spent raising you may not have
always been good. But, you're here and someone took a lot of time to do that,
usually it was your parents. I don't have anything else to go on other than being a
parent. There are so many benefits to helping out at a time when your parents are in
need. The other blessing and reward would be the patience that I have gained from
The mother in dyad five found great comfort and security in her daughter's care.
She felt cared for in that her daughter knew all she needed. She worried about the future
if something befell her daughter, although she had sons and grandsons who were
supportive. For her, as other mothers in the study, the daughter was the most important
person in her life and she was effusive in her praise and appreciation.
For the daughter in dyad five, the experience of caregiving was bittersweet, a
blessing and a frustration. Caregiving afforded a bonding and closeness with her mother,
however, the constancy of caregiving limited her personal lifestyle. Daycare helped to
relieve the day-to-day stresses of caregiving. She too had a deep spiritual belief and that
she had learned the virtue of patience.
Essential themes are the infrastructure for the descriptive and interpretive
dimension of the lived experiences of adult caregiving daughters and their elderly
mothers. They are fundamental to the experience and understanding of the total
phenomenological dimension. They are the "aspects or qualities that make a phenomenon
what it is and without which the phenomenon could not be what it is" (van Manen, 1990,
The following are the essential themes fundamental to the caregiving, care
receiving experiences of mothers and daughters in this study. In response to the question,
"What is the experience like for you being cared for by your daughter or in caring for
your mother?" major themes emerged from the data within each of the existential
perspectives (van Manen, 1990) described in the chapter on methodology. The
fundamental themes that emerged for mothers were: 1) feeling safe, comforted and
protected, 2) feelings of gratitude, appreciation, and desire to do in return.
For the daughters, the themes were: 1) concern and worry for mothers' safety, 2)
fatigue in the constancy of caregiving, 3) commitment to loving attention, 4) balancing
roles, and 5) spiritual growth.
Feeling Safe, Comforted and Protected
One emerging theme for mothers was that of feeling safe with their caregiving
daughters. This was linked to feeling comfort from the caregiving of their daughters.
Being in an environment that was safe and in which all their day-to-day needs were met
provided comfort and protection. Three of the five mothers could not walk without
assistance and one needed some assistance. They had a pervasive fear of falling. Unless
one is incapacitated, walking is taken for granted. One can move about at will, go to the
bathroom, answer the doorbell or phone, feed a cherished pet, and walk outside to
experience the warmth or coolness of fresh air. Confined by loss of physical ability, the
mothers' world is restricted and they become dependent on another, in this case, a
daughter. Mothers expressed an expectation that their daughters would always be there
for them to care for them, protect them from falls and preserve their quality of life in a
comfortable and familiar environment.
Feelings of Gratitude, Appreciation, and Desire to Reciprocate
Mothers also expressed gratitude for all their daughters did and a worry that they
were robbing her of her life. Each recognized and appreciated the constancy of the
caregiving of the daughter. Mothers were quick to tell of the many tasks daughters
performed that allowed them to have the quality of life they would not have if they were
in a nursing home. At the same time, each of the mothers in some way attempted to
reciprocate for the care. No longer able to do many physical chores around the house, one
mother listened to the news and read the daily paper and capsulated the day's news and
shared it with her daughter when she came home from work. Mothers expressed
frustration with the physical limitations that restricted their activities and ability to "help
Concern and Worry for Mothers' Safety
Daughters expressed worry and concern for their mothers' environmental and
personal safety. Concern for personal safety was centered about their mother's continuing
decline from the normal aging process and associated disabilities from chronic diseases.
The move into the caregiving role was in most cases initiated because of concern for their
mother's environmental safety. They worried too about their lack of knowledge and skills
to provide safe and effective care for their mothers during acute episodes of illness.
Fatigue in the Constancy of Caregiving
Daughters spoke of an overwhelming fatigue that at times pervaded their
caregiving. Four of the five daughters had paid caretaker help; however, they spoke of the
fatigue not only of providing physical care, but also of the constancy of the mental and
emotional responsibility for their mother's health and well-being. There was the
bittersweet burden of being the primary care provider
Commitment to Loving Attention
Daughters spoke with emotions of joy and worry about caregiving their mothers.
While they expressed a filial obligation, it was an obligation chosen with love and a
desire to provide all they could to their mothers in return for all their mothers had done
for them throughout their lifetime.
Daughters were challenged in balancing their roles as daughter and caregiver along
with the other roles in their lives, such as, wife, sister, friend, and professional. Daughters
recognized their responsibility in the shifting of role balance to honor and respect their
mothers' selfhood while still needing appropriate caretaking
Each of the daughters' stories reflected to a greater or lesser degree their belief that
caregiving was a spiritual gift or blessing that enriched their lives. The experience
fostered a connectedness that enhanced personal growth and self discovery.
Summary and Description of Themes
Mothers and daughters share the same joys and worries, from different
perspectives. All shared a worry for safety. For most of the mothers, their disabilities
limited their mobility. They worried about falling and injuring themselves. They felt safe
and comfortable knowing that their daughter was there to "take care of everything." For
them, their daughters protected them and were a safe haven. Mothers felt secure and
found comfort in the attentive care of their daughters in whom they had unconditional
trust. They worried about their fate in the event something would happen to their
daughters, and the possibility of being in a nursing home. Living in her own or daughters'
home was comfortable and comforting. The sense gleaned from the interviews was that
they felt safe and protected not only in their environment but in the watchful, loving
attention of their daughters.
For daughters, safety had a broader scope than just providing a safe environment
and protecting their mothers from physical harm and injury. It encompassed a worry and
need to preserve their mothers' autonomy and integrity as a person and as their mothers.
Thus, for daughters caring provided not only comfort and quality of life but allowed them
to protect and preserve their mothers' life. Daughters were committed to providing a safe
environment and the best care possible that allowed their mothers' optimal health and
well-being. Daughters worried about making right decisions that affected their mothers'
health and that might hasten their demise because they did not have a mastery of
caregiving skills. While similar to what a mother would do for a child, daughters also
expressed a need to preserve their mothers' autonomy and involvement in the decisions
regarding their care whereas, in mothering a child, the mother is the primary decision
maker. Childcare also has an expected developmental time frame at which point
adulthood and emancipation is achieved. Elder care is fraught with uncertainty as to the
end point, as daughters watch their mothers "growing older and older and older."
Daughters had a desire to know they were still the daughter and made efforts to
maintain the mother-daughter relationship. However, like a mother towards a child,
daughters were knowingly perceptive about their mothers' vulnerabilities and responded
in caring for them in the best manner they could.
The mothers testified, through their stories, to the loving attention and caring they
received. Overall, they believed that no one else could care for them as well as their
daughters. They spoke with gratitude of the daily tasks of caring their daughters
performed. They also felt cared for. They worried only about what would happen to them
if their daughters became ill. The thought of institutionalization was frightening for them.
According to Warren (1994), feeling cared for differs from being cared for. The latter
implies a service or perfunctory act of instrumental care. Although not mutually
exclusive, the essence of feeling cared for is in having one's needs met without asking.
It saddened and frustrated mothers that they no longer were able to fully reciprocate
in sharing the day-to-day chores about the house. All but one mother contributed in some
small way to lighten the caregiving of their daughters. One mother often writes to her
other children to remind them that she remains as healthy as she is because of the care
she receives from her caregiving daughter.
The themes of balancing roles for daughters and the need of the mothers to
reciprocate are linked. Daughters worry and struggle to balance roles as caregiver,
daughter, wife, sibling, mother, friend, and professional. In caregiving, they still need to
be "the daughter" and find nurturance in their relationship with their mothers. Mothers
desire to do all they could to help their daughters reflected a need to still be "the mother."
Mothers provided mothering by their expressions of gratitude and appreciation for all
their daughters do for them. They also provided maternal nurturing within their physical
limitations by reciprocating in doing whatever they can to lighten their daughters'
responsibilities, and in worry about their daughters health and well-being.
Daughters were committed, out of love for their mothers and duty as children, to
respect and preserve their mothers' health and dignity. They felt that the rewards
outweighed the burdens of overwhelming fatigue, worry about making right decisions,
efforts to acquire mastery in performing the physical tasks of caregiving, the struggle to
keep perspective in balancing many roles, and maintaining some personal space for
themselves. The rewards were found in the appreciative recognition by their mothers for
all they did, the personal satisfaction from knowing their mothers were receiving the best
care they could provide, and the strengthening of the relationship with their mothers.
Daughters expressed sadness and worry as they watched their mothers continuing
decline of health. For two of the daughters this was linked to feelings of abandonment by
another sibling who did not provide, even upon request, physical, emotional, or financial
support. However, they remained totally committed to provide loving attention and care
for their mothers and to move past the disappointment and hurt.
In addition, daughters attested to a personal spiritual growth dimension that
accompanied their caregiving. This included a search for meaning in the experience, the
developing of the virtue of patience, a sense of inner peace, the practice of living in the
present moment and a realization of spiritual connectedness.
The preceding reflective thematic analysis was extrapolated from the data and field
notes, and portrayed the experiences of adult caregiving daughters and their mothers from
their personal stories. It allowed the researcher to enter into the text, so to speak, and to
allow for interpretation of the overall dimensions of the experience of caregiving and care
The purpose of the phenomenological reflection is to grasp the meaning of an
experience as a whole. Understanding of an experience is arrived at through the analysis
of the themes. Each emergent theme is a statement of a concept or category, and provides
structure for a fuller description of the larger phenomenological dimension of the lived
experience (van Manen, 1990). "The meaning of the text resides in its themes, but the
meaning of the text also resides in its connection with the larger discourse" (Berman,
1990). Themes provide insights into the beliefs and values that instill powerful
experiences and motivations and shape how individuals plan, make sense of, and respond
to events" (Lubosky, 1994). The phenomenological dimension is that which goes
"beyond the data" (Coffey & Atkinson, 1996, p. 153). From the themes that emerged
from the stories of the mother-daughter dyads in this study, the following interpretative
dimensions portray the lived experience of caregiving for mothers and daughters in this
The experience of caregiving and care receiving was, for mothers and daughters in
this study, inspired by an enduring respect and love that balanced the difficulties, worries
and sacrifices in the day-to-day lived experience. Difficulties and worry give rise to
opportunities to see others-in-situation in a new light and to cherish (appreciate) what
may have previously been hidden. Mothers experienced the comforting presence of
daughters as strength, protection, and resting in a safe haven. They felt cared for,
nourished, and cherished. Daughters discovered unexpected revelations of self and the
other (mother) in striving to create balance in the existential dance of caregiving. Loving
attention was a living presence of comfort and safety.
They co-created a new bonding and relationship that was a blessing expressed in
mutual concern, loving attention and appreciation amidst the uncertainties of the future.
Living with the uncertainties of aging and its inevitable but unknown course opens new
ways of being for caregiver and care receiver. Being with the "what if" gives rise to being
in the present moment and giving expression of appreciation for the "what is."
Meaning was found in reciprocal loving connections and spiritual growth in
seeking to transcend the day-to-day vicissitudes of caregiving and care receiving.
Connectedness as a state of being opens ways to rising above the ever changing life
situations of caregiving and care receiving and enhances discovery of new meaning in
One daughter speaks of caregiving as a "gift of love." Others discovered the
opportunity to care for their mother as a blessing. The worries, sacrifices, and fatigue of
constant care giving are challenges in the day-to-day fulfillment of a commitment to the
"invisible work" (Bower, 1987, p. 24) of caregiving. There is a shifting and balancing of
roles between being a daughter and being caregiver. One mother refers to this as a
"turning of the tables." The necessity for and commitment to caregiving does not,
however, negate the desire to be recognized as a daughter. Daughters search to equalize
the mother-daughter relationship, then the relationship shifts.
Mora's (1991) poetry describes this as a "tug-of-war that started in the womb, the
fight for space, the sharp jab deep inside as the weight shifts" (p 79). As a baby shifting
in the mother's womb, there is a shifting of maternal nurturing between mothers and
daughters, a mutual mothering. Daughters care for their mothers in appropriate ways.
They are committed to protecting and preserving their mothers' integrity, not to swapping
places with them. Daughters maternal nurturing reflects the modeling they learned from
their mothers early in life. Remembrance of care given evokes an imperative to care.
When once daughters sought to create boundaries and establish independence they
are now a source of knowledge, strength, and nurturance for their mothers. Now, as
caregivers, they strive to preserve and protect their mothers' integrity and independence
(Allen & Walker, 1992; McFarland & Watson-Rouslen, 1997).
In addition to a desire to reciprocate, mothering by mothers' is evident in their
desire to remain in control of their lives, expressing a desire to "not to bother her" and
wanting to do things on their own schedules that may be in conflict with the daughters'.
This stance of "because I am the mother" at times creates tension in the relationship.
These occasions of tension rather than being a burden for daughters were opportunities
for redefining their relationship with their mothers, creating a mutual constructive
relationship and for finding meaning in their caregiving. For mothers, there is a deep
sense of serenity in knowing there is someone they trust to turn to when they cannot do
for themselves. For daughters, there is a deep sense of self-fulfillment and connectedness
overriding the fatigue, the sacrifices, and the worry of being ill prepared for the job of
caregiving. Daughters portray an inner strength and resilience, perhaps a reflection of
their mothers, for as the poet May Sarton (1974) writes: