An exploration of the UK carer world

                                                          the graphic is not associated with the article

Response to "The Long Gray Tunnel: The Day-to-Day Experience of Spouse 

Caregivers of People with Alzheimer's Disease"                   Alone  Home page here     

Corbin, Juliet M. Rn, DNSc, Scholarly Inquiry for Nursing Practice  Vol. 14, No. 1, 2000


The text has been broken down and sections numbered by the website author.  There is text which overlaps with dementia.  Some of it is quoted on other pages of this website. 

The article by Mary O'Donnell note adds to our knowledge about Alzheimer's disease and chronic illnesses in general. The significance of the findings lies in the underscoring of the biographical impact of the disease upon the caregiving partner. 

Caregivers' biographies take on an uncertain future, making a series of twists and turns, shifts and changes as they move along a course set in motion by the progressively debilitating illness of a partner. All that is certain about the future is that the course will be downward. What remains unknown is how far it will go, how fast it will happen, and what daily life will be like in between.

Time is a major dimension of the concept of biography (Corbin & Strauss, 1988) and time stands out boldly in O'Donnell's article. Caregivers speak of living in the present, "taking it one day at a time" (Coughlan, 1993). Though meant to explain how caregivers manage to make it through each day, implied in that statement is something even more profound, the biographical ties that hold them to the past. 

The caregiver can't help but compare the ill partner with the person she or he was in the past. The symbolic meaning of the person and of the couple's relationship transcends time, giving meaning to the present. The attributed meaning takes the form of "fidelity" enacted through caregiving. By safeguarding the dignity and safety of the Alzheimer's person, caregivers preserve aspects of the other's self untouched by illness, thereby weaving the past into the present and future.

As the Alzheimer's trajectory moves forward, a real turning point occurs in the couples' biographies. The biographical trajectories of each partner begin to diverge, one trajectory moving upward, while the other moves progressively downward. 

Out of necessity, the caregiving partner must assume greater responsibility for making decisions and carrying out the daily activities of living. 

a) Successful encounters with the outside world,                                  More like battles.
b) handling the responsibilities at home competently,                          
c) and the ability to manage the welfare of the ill partner 
d) lead to an emerging sense of power and control in the caregiver.    This carer does not agree.

a) For many caregivers this is a period of self-discovery. 
b) Growth comes from the realization that while the downward progression of the disease is inevitable, 
c) the couple's biographies can be shaped to some extent through careful planning and management. note 3

a) By relying on routines for doing daily tasks some caregivers are able to find time for outside activities, 
    It is more of a matter of proper negotiation with social services £ staff re dom-care and respite.
b) preserving relevant aspects of self (Khurana, 1995). 
c) Unfortunately, with Alzheimer's disease, behavior is often erratic, defying the best of plans and disrupting routines.    Not only Alzheimer's disease

a) As the future moves closer and closer into the present, the caregiving spouse  carers come in many guises here
b) begins to wonder how much longer she or he can go on before also breaking down (Jepson, McCorkle, Adler, Nuamah, & Lusk, 1999). 

a)  Though there may be alternative caregiving arrangements available in a community, 
b)  use of these depends upon a couples' financial resources. Not so, in principle. [8a]  Apart from that comment,              new Dementia Meeting Centres can be seen here.
c)  Unlike the "pot of gold" at the end of the rainbow, resources, personal and financial, are not unlimited. academic-        speak for the obvious

a)The caregiver, when making decisions about the use of alternatives, is caught between the present and future. One question, for example, might be: 
b)  "Home help might ease the burden of care now, but what will happen to me later on?"  note 3

Becoming a "couple of one" is a significant finding arising out of O'Donnell's research. The concept implies that caregivers become "emotional widow/ers" long before they become actual ones. note 3

The reciprocal nature of a couple's relationship is severed by a cruel act of fate. The severing creates a state of biographical limbo in which the caregiver, entangled with the care receiver through a mutual past, is unable to fully live in the present or to plan for a future (Coughlan, 1993).  Fullynote 3.  This carer contends that unable is too strong.

a)  The full biographical impact of this realization triggers a deep sense of loss and grief,  pre-bereavement?
b)  alleviated to some extent through the use of humor  agreed
c )  and faith.  In each other?  As the caree's condition deteriorates, faith is a one-way process.  Not that the caree loses faith in the carer.  It's the caree;s later inability to assess situations, to experience faith
 If faith = belief,  this carer's caree is deeply religious.  This carer does all he can to prolong his caree's ability to appreciate her belief. more

12, 13 and 14 are used here.

According to O'Donnell another relevant finding from her research was the notion of "fidelity." Yamamoto (1994), in a study of caregiving of Alzheimer's patients by Japanese women, speaks about the essential paradox inherent in the caregiving role: on one hand there is the value placed by Japanese society on caregiving, and on the other hand, the difficulties inherent in the role. 

a)This paradox permeates the entire caregiving trajectory.  academic-speak
b) Much of the strain that women face  Why only women?  17 only goes half way.
c) as time goes on arises not only from the increasing demands of caregiving and the toll it takes on their well-being but also from the sense of filial duty and emotional attachment they feel for the ill person.   

Though Yamamoto does not call this phenomenon "fidelity," many of the same elements are there. In Japanese society there is strong societal pressure for a daughter-in-law to take on the caregiver role, but woven into that role is more than a sense of duty or obligation forced by society upon a daughter-in-law. 

There is also filial attachment and a strong sense of self-worth derived through successful enactment of the caregiving role. In O'Donnell's study, participants felt an attachment to the care receiver [see 10.1 10.3  here] , a bond left over from the past. 

a) There is affection, 
b) sometimes mingled with dislike,  strongly disagreed  note 3
for the vulnerable and dependent person the Alzheimer's victim has become in the present. 

a) There is a sense of self-worth derived from successfully carrying out the caregiving role 
b) and the value placed upon that role by society.   Plenty to be said about that.  Meanwhile.
c) There is also a sense of duty or obligation, a vow to fulfill from the past: "to love and to cherish through sickness and in health." "Fidelity" is an apt descriptive term. It captures the essence of what is, in every society, a very complicated phenomenon.

The concept of "normalcy" needs clarification (Deatrick, Knafl, & Murphy- Moore, 1999). Repeatedly it is found in the literature on chronic illness. Yet, somehow-in the eyes of this author-it has never appeared to fit. I recall a Thanksgiving spent with a brother and his family some years ago. The brother's wife had amyotrophic lateral sclerosis. There was turkey on the table with all the usual side dishes. Everyone gathered around, talked, laughed, and ate. But the event was anything but "normal." Instead of the sister-in-law directing events and preparing the meal, others took over the tasks. Additionally, there was a sense of heaviness that permeated the day. It was as if everyone was engaged in a game of "mutual pretense" (Glaser & Strauss, 1965). We acted as if everything was normal, when we knew it really wasn't. Enacting symbolically important rituals and routines from the past seems to be biographically important. Normalizing, even if it requires pretense, seems to be a way of connecting the past to the present, however fragile the present might be.

O'Donnell was surprised to discover that nurses are all but invisible in the care of Alzheimer's persons and their caregivers. This finding is no surprise to those who are knowledgeable about chronic disease management in this country. 

There is a tremendous gap in health care delivery, with most of the health care resources directed at acute care. There is little if any support for the chronically ill and their caregivers living in the community unless they develop an acute condition. 

Nurses can certainly fill that gap in care. But money is not available to support nurses working as independent practitioners in the community. There, they could focus upon the prevention and management of chronic conditions.

Until major reforms in health care delivery occur, persons with chronic diseases and their caregivers will continue to struggle through the "long gray tunnel."


Corbin, J., & Strauss, A. (1988). Unending work and care: Managing chronic illness at home. San Francisco: Jossey-Bass.

Coughlan, P. B. (1993). Facing Alzheimer's: Family caregivers speak. New York: Ballantine.

Deatrick, J., Knafl, K., & Murphy-Moore, C. (1999). Clarifying the concept of normalization. Image: Journal of Nursing Scholarship 31, 209-214.

Glaser, B., & Strauss, A. (1965). Awareness of dying. Chicago: Aldine.

Jepson, C., McCorkle, R., Adler, D., Nuamah, I., & Lusk, E. (1999). Effects of home care on caregivers' psychosocial status. Image: Journal of Nursing Scholarship 31(2), 115-120.

Khurana, B. (1995). The older spousal caregiver: Paradox and pain of Alzheimer's disease. Unpublished Dissertation, Center for Psychological Studies, San Francisco, CA.

Yamamoto, N. (1994). Coming to terms with the reality of having to take care: Experience of Japanese women in caring for the elderly parent (or parent-in-law) with dementia. Unpublished Dissertation, University of California, San Francisco, CA.

[Author Affiliation]

Juliet M. Corbin, RN, DNSc

San Jose State University

Oakland, CA

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