Fading away

The Experience of Transition in Families with Terminal Illness

Betty Davies PhD.

• Publisher: Routledge
• Year: 2020
• eBook ISBN: 9781351854191
• Edition: 1
• Topic: Psychology
• Subtopic: Mental Health in Psychology
• Index: Psychology

This book comes out of an in-depth, qualitative study of the experiences of twenty-three families in which one parent was dying of cancer. The study attempted to better understand the impact of terminal illness on the entire family system and sought to develop a theoretical framework that would guide the assessment of and services to such families. As a result of interviews with patients, spouses and their adult children over three phases of the study, the process of ""fading away"" was identified and conceptualized in terms of various phases which contributed to this process. The book is not a research report but rather presents more generally the ideas that developed from the study, with two purposes: to increase the reader's understanding of particular experiences that families encounter when dealing with terminal illness, specifically cancer. The intended readership also includes families themselves: to propose guidelines for care to be considered by practitioners working with such families.

CHAPTER 1

Fading Away

There’s been a decline in her mobility and in her bodily functions … her physical being is fading. Her mental capacity is fading …

Mr. B. referring to his wife, now bedridden

Families with a member who has terminal cancer are in transition: the transition from living with cancer to experiencing a death from cancer. During this experience, some families describe the patient as “fading away.” The physiological changes limit or alter how they experience the essence of the person who is dying, and how the dying person experiences life. In other words, fading away encompasses more than the physiological changes—these are important but not sufficient to understand the experience. The physiological changes inhibit the expression of other aspects of the person.

The transition of fading away involves several components which occur over time, not necessarily in the sequence described in this book. The components include redefining, burdening, struggling with paradox, contending with change, searching for meaning, living day-to-day, and preparing for death. The components accumulate, overlap, and recur but must begin with the patient’s redefinition of self and the family’s redefinition of the patient. Without this, the family cannot come to terms with the other components of the fading away process. In an essential first step, the patient and family adjust or redefine their views to fit the reality of how the patient now looks and what the patient can presently do. All members of the family must adjust their view of the patient, themselves, each other, and the family as a unit.

Redefining continues throughout the experience with no clear ending, but once the family begins this process other components of the fading away process come into play. The patient confronts the possibility of being a burden and other family members confront being burdened with extra responsibility. The family struggles with the paradox of the patient living with cancer but at the same time dying from cancer. All members of the family unit face major changes in their lives and search for meaning in the experiences that confront them. Toward the end of these experiences the patient and family live day-to-day and prepare for death.

The trigger for the fading away process comes when the family members recognize, separately or together, the decline in the patient’s condition. They realize he or she will not recover. The patient’s condition worsens in such a way that the inevitable can no longer be denied. As long as the patient maintains some sense of normalcy, or rallies (for example, going for a drive or eating more), some hope for recovery exists. The apparent normality makes it easier to believe that the patient is still all right. In the words of one daughter as she spoke about her mother, “… I can continue to deceive myself … she tells me that it has spread, but because she continues to look good and doesn’t seem much more tired … that piece of information slides downstream.”

A change in the patient’s physical appearance signals a decline in the patient’s condition. The patient may lose weight, become weaker, less mobile or less mentally able. However, recognition of this comes as an assault for family members: “It struck me hard;” “It was a jolt;” “It hit me … POW! This is definitely not going to get better.” The realization often comes suddenly even though there may have been clues all along. And, from this point on, family members acknowledge to themselves that the patient is, in fact, fading away.

Patients poignantly describe the changes in their own bodies: “I’ve shrunk a lot, not a little bit … I have thought of myself as starting to disappear … my nose is getting closer to my toes because of the disintegration of vertebrae and bones …” Patients describe the decline and change in their physical appearance as being like an “Ethiopian famine victim,” or “feeling eroded.” As one said, “I get weaker and weaker … I can’t eat as much … I’m fading, I know I’m fading.” And another, “I’m sitting. I’ve sat in this living room more in the last two months than I think I have in the last two years.”

Decreased mental ability presents, perhaps, the most devastating indication of decline. A woman who used to be a teacher said with emotion in her voice,

I have loss of memory, a terrible memory for things that happened today and yesterday … I find it really hard to do the bank books and math. Subtracting just takes me ages, and I was good at things like that, doing the banking and so on.

The decline in the patient’s condition impacts profoundly on the emotions of the adult children. They expect their parents will always be vital and capable and more competent than themselves. The patient’s decline alters the image the children have of their parent from “strong” to “frail,” from “big” to “wasted.” They see their parent as incapable of handling even the smallest task and this devastates them. “Things that were so easy for him at one time are so difficult for him now … getting out of the car, having to lift his legs. And I know he’s not going to get better.” And, again, “He wants to visit but he knows he has to lie down, and if that isn’t fading, I don’t know what is.”

More so than spouses, the children remain sensitive to the patient’s loss of independence in personal care:

I notice that all the things I am used to as far as social niceties and personal grooming habits (which) I took for granted … start to disappear, and I have to do (them) for him … and his lack of concern … I feel badly for him that he’s lost his composure.

Although difficult, the acknowledgment that the patient will not recover enables the patient and family members to face the challenges that lie ahead in the transition of fading away.

CHAPTER 2

Redefining

I have begun to redefine myself as someone who cannot walk alone, but I have not yet redefined myself as someone who needs a wheelchair—I can manage with a walker.

Mrs. W., age fifty housewife and mother with cancer of the pancreas

The realization that a loved one is dying results in a major change for the entire family. This demands that family members adjust not only outwardly, but also inwardly where they keep connections to the people and places that act as definitions of self. Families need to redefine their life situation.

Redefining involves a shift in terms of what used to be and what is now and leads to an adjustment in how individuals view themselves and each other, as well as how they define the family unit. The family accommodates to changes in the patient’s status through redefining and copes with the losses and gains incurred. This process goes on throughout the transition of fading away with no clear ending, and is the basis for the other components of the fading away process.

Family members’ readiness to redefine the patient as different is critical to their accommodating to changes imposed by the illness. They need to relinquish former views of themselves as well as of others in the family and adjust their behavior and patterns of living. The patient’s redefinition of self is the central factor in this process. When patients succeed at redefining themselves, they ease the process for others in the family. If any member of the family triad (patient, spouse, and adult child) remains unwilling to redefine the patient, this impedes redefinition for the other family members and results in resistance to changes in patterns of living. This causes tension as family members try to evade the effects of the progressing illness and act as if little has changed. Although family members may redefine at different times, personal and interpersonal frustration results if disjunction persists.

PATIENTS

Redefining for patients means they let go of their view of who they used to be and develop a new view of themselves and others. Patients alter their identity over time. As their capacities become more limited, their identity narrows. They relinquish certain aspects of themselves. A man redefined his work identity in this way:

I can’t do the physical work any more. I’d like to, but I know I can’t. It’s the same with my job. I was a supervisor at a gas plant … but I had to accept the fact that with the seizures I was having, I couldn’t go back to that role.

As a central strategy, patients often maintain their normal patterns for as long as possible, and then implement feasible alternatives. One patient who was a teacher, brought in a stool with wheels so she could retain some mobility in her classroom. When her condition deteriorated, she took sick leave. “I had to stop with the year incomplete. That was a very hard psychological blow … I’m just so glad I didn’t have to resign at that point because it was just too hard.” It was as if she were saying, “I can redefine myself as not teaching the way I used to do, but I am still a teacher.” This same woman found new ways of expressing herself as her condition deteriorated. When she could not work any more, she took up watercoloring. When she could not sit any more, she began to knit while propped up in bed. When she could not do that, she read. When her vision failed, she continued to think and to explore questions in discussion with friends.

In another strategy, patients pay attention to details. One woman who could not hike any more, focused on her immediate environment: “I am more alert to the ordinary things. Now, I will often lie on the chesterfield and look out at an old wind vane … I’ve never really appreciated that old wind vane and it’s been there for years and years.” She goes on to say, “I’ve thoroughly enjoyed watching the sparrows and the little ones learning to fly, and I’ve really had a lot more pleasure out of things like that because of having the time to do it.”

In another approach, patients reinforce the fact that their internal characteristics remain the same while their physical aspects change. One patient told visitors, “I’m still D. Don’t treat me any differently than you did before. My soul and my spirit are the same. People tell me my personality hasn’t changed, so that’s good.” Another woman described the change in her spiritual identity: “I always used to think of people as the frame; I wasn’t all that deep about it, about one’s soul or spirit and so on. That’s been a pretty major change for me. I’ve become much more interested in spiritual matters.” Although patients talk of changes in themselves, they emphasize that they remain the same person. Their bodies change, and their capabilities change, but the essence of the person stays the same: “The physical me is no longer here as I was … it seems that I’m trapped in this sort of helpless little carcass. But my mind and my soul, I think, are the same.”

Patients accept the limitations imposed by the disease with difficulty. They speak about their new selves with sadness and a sense of loss. They see no alternative. One patient indicated a friend’s advice helped him with this acceptance:

… you’ve got to let it go for now … you have to drop that … and if you can, at a later time, look back at it, but for right now, the way you’re going through things, you have to be concerned with what’s going on, and let other people do those things that you used to do.

When the patient redefines himself or herself as someone who still has accomplishments, still sees the “essence” of self, shifts in the way he or she meets the world, or discovers a different way of meeting the world, then he or she achieves reasonable contentment. Patients make the adjustments that their declining state demands. They seem to accept their situation and make the best of it. Although they redefine themselves, they differentiate those aspects which remain intact and those which have changed. They convey this to others and continue to receive support.

When patients cannot redefine themselves, they experience a sense of anger, worthlessness and frustration with the altered situation. When they recognize the changes in themselves, but do not allow these to alter their regular patterns, then they redefine themselves, but to a lesser degree. For example, Mr. M. recognized his weakness, but continued his workaholic pattern: “… I stuccoed part of the garage with a finished pattern. I did that Friday. It was all I could do … It just about killed me. I couldn’t hold up anything, I was so weak. …”

Another patient who rigidly maintained his normal activities and self-perceptions said: “If I get worse and worse, I’ll just get through it … I’ve made up my mind.” He described few strategies beyond his usual pattern which put his safety at risk. “… every step I take is a struggle so there are times I break down, but very, very seldom.” These patients experience discontent, frustration, and anger which distances others from them. They often feel abandoned, isolated, and unsupported.

The perceptions of other people affect the redefining process for patients and reinforce their perceptions of the physical changes:

Some people get scared when they look at me. I can see it in their eyes. They don’t really know quite what to say and I think they are distressed at the physical changes. It’s uncomfortable to be around a person who is terribly ill.

SPOUSES

When spouses redefine the patient they acknowledge the physical changes, but take these in stride. They remain aware of the changing nature of the patient’s condition. They see subtle changes daily which take away hope for recovery:

When I get very depressed, it is usually when I am sitting here alone with him, and I see how very weak he is. I see how he falls asleep at a moment’s notice … it’s difficult to see him getting so weak when he was such a strong person before. … I suppose that hope is fading.

They see the changes as a result of the disease process or treatment complications, rather than a conscious decision on the part of the patient to behave in a certain way. As one husband said,

You really have to be able to bend with the wind … to understand that sometimes a person’s pain or reaction to a drug … can cause her to say or do some stupid things. But if you realize that it’s really not her doing it … I think that you can cope with that.

Spouses rationalize patients’ behavior so as to be empathetic and continue with their care. One wife said of her husband,

Once people are ill, all their bad ...

Table of contents

• Cover
• Title Page
• Copyright Page
• Preface
• Acknowledgments
• Table of Contents
• Introduction
• Chapter 1 Fading Away
• Chapter 2 Redefining
• Chapter 3 Burdening
• Chapter 4 Struggling with Paradox
• Chapter 5 Contending with Change
• Chapter 6 Searching for Meaning
• Chapter 7 Living Day-to-Day
• Chapter 8 Preparing for Death
• Chapter 9 When the Children are Teenagers
• Chapter 10 Family Functioning
• Chapter 11 Location of Care
• Chapter 12 Challenges of Conducting Research in Palliative Care
• Appendix I Research Design
• Appendix II Interview Guidelines
• Appendix III Case Studies
• Author Biographies
• Series Page