Family Caregiving Experience at End of Life by Jana Staton Roger W Shuy and Ira Byock
All the passages below are taken from the book, “A Few Months to Live: Different Paths to Life’s End” by Jana Staton, Roger W. Shuy and Ira Byock. It was published in 2001.
We were interested in everything about the family caregiving experience of our participants, particularly because most of them were being cared for at home during their illness by family members or close friends. What, exactly, was involved in caregiving for someone who was terminally ill in Missoula in 1997? What did caregivers find most valuable in the experience–while they were in the middle of it, and looking back? What aspects of this experience did they find most difficult? What kind of support and assistance did they get from others–families, or friends, or the community? What additional help, if any, did they need? What inner resources enabled them to do this, to keep going? How did the particular primary caregiver get “selected” for the job, when several might be available: Why one child of an aging parent, rather than another? Why one sister rather than another?
The picture of the end of life from the patient’s perspective that we present in chapters 2 through 6 shows that the most feared aspects of dying–great pain, loneliness, depression, meaninglessness–did not dominate the last days of most of the participants in our study. Pain and other symptoms were controlled; they were able to be with their families and have friends visit; and their preferences–particularly to stay at home–were honored.
The picture from the caregiver’s perspective, presented in this chapter, is less rosy. What made the end of life so good for the majority of these participants came from the extra efforts their families made, not just for a few weeks but for many months. The family caregivers had chosen their task, and did it willingly, but the burdens at times seemed overwhelming to them. As a result, this chapter 7 and chapter 8, though accurate and based on direct accounts and observations, may overemphasize or give more space to the family caregivers’ day-to-day concerns and the difficulties they were experiencing and underemphasize the deep meaning they found in caregiving for a family member.
In most cases, we may have been the only people who listened to the caregivers; professionals and other family members directed their attention toward the dying person, and to that person’s needs. Most of the caregivers were not “complainers,” and they seemed unlikely to talk about the difficulties with their own families as openly as they did with us. Because we asked, because we listened, and because they trusted us not to share their concerns with the patient or others in the family, we learned a great deal about how very difficult home caregiving can be, even with good support. This contemporaneous picture of family caregiving, recorded as it was occurring, may not be the picture they would paint now, a few years after the patient’s death. Perhaps these data are a bit like what one would find by asking women in the middle of labor how they feel and what their concerns are. Dying can be much like birthing: It can be very difficult and hard work for the dying person, and for their family members who support and get them through it. The value and meaning of both kinds of experiences may be perceived more clearly in retrospect.
This chapter points out that caregiver difficulties from the effects of long-term care of terminally ill loved ones were present even when good communication, open acceptance of death, excellent medical care, family consensus, and physician and family respect for the patient’s wishes about care were all present. When any of these factors were not present, the level of caregiver stress became extraordinarily high, and undesirable outcomes occurred. Some of these outcomes included unresolved grief, interference with the caregiver’s ongoing life after the loved one’s death, family conflicts and disruption persisting after death, and even legal difficulties.
This chapter 7 encompasses a wealth of data on caregivers’ experiences and perspectives, beginning with a description of caregiver tasks, a “typical day,” and the caregiver’s acquisition of competence in home care. We describe how particular family caregivers were “selected” and the values and benefits they found in this experience; then we present the most typical difficulties and troublesome symptoms of caregiving for someone who is terminally ill. Chapter 8 discusses the kinds of support caregivers received and the experience of caregivers when some of the support they needed was lacking.
Caregiving Arrangements and Routines
In the families we studied, we observed a diverse range of caregiving responsibilities and roles, as well as a variety of types of individuals who became caregivers. Table 7-1 summarizes the various family arrangements for caregiving as we encountered and observed them.
The care that family caregivers provided ranged from twenty-four-hour home nursing to managing a parent’s care while the parent lived at Hospice House and then in a board and care home. Except for one younger family, all of the primary caregivers were themselves in their sixties and seventies.
Table 7-1 Family Arrangements for Caregiving during Terminal Phase
|Living alone, no children, spouse or siblings; church friends provided some assistance||1|
|Spouse provided care at home||3|
|Cared for by mother in own home (mother in late sixties)||1|
|Cared for by adult children (late fifties to sixties), in their homes||2|
|Cared for by sister in sister’s home (sister in seventies)||1|
|Lived at Hospice House, then in a board and care home, with care management from daughter living near Missoula||1|
Tasks and Typical Daily Routines
A typical day for a caregiver begins and ends with caring: seeing that the patient is comfortable, administering medication, monitoring vital signs and systems (appetite, eating, digestion, elimination, breathing, temperature). Patients need help with moving, dressing, bathroom trips, hygiene, and bathing. They need to be fed and kept warm and comfortable, and their human and social needs (attention, conversation, stimulation, affection, and love) have to be met. These tasks are part of any home care for the chronically ill, and these family caregivers did all of this, every day. As the patients became more ill, the number and complexity of the medications typically increased, and the amount of help and attention required for any personal needs increased correspondingly–and often dramatically.
This section brings together the voices of several caregivers, whose experiences represented the typical experiences of most of the participants in this study, and of family caregivers generally:
I brushed her teeth, I combed her hair. I put makeup on, I painted her fingernails when she wanted them done. I kept her in clean pajamas every day. I put lotion on her. I gave her foot massages. I did everything that you do for a baby. I read to her. I played music for her. (Irene, Barbara’s sister)
Much of the daily schedule was determined by the medications, which required precise doses at precise times to keep the patient comfortable:
It just takes a lot of different things to keep her breathing; she has to have them. And she has long ago lost the power to keep track of her own meds. I have to think all the time. (Connie)
Another part of the daily routine was management of the dying person’s social life and visitors–including children, grandchildren, and others. For several of the participants, the summer before they died was filled with last visits home from children and grandchildren, nieces and nephews. In addition to nursing and medications, family caregivers found themselves serving as hosts for extended family:
His kids came through on Thursday, but that was a hectic day. We thought it was a day of rest, and it was four people all at once. (Carrie)
Another caregiver also found that much of her energy went into scheduling visitors. As Sharon became less able to use the phone or to remember her own schedule, her sister Connie had to take over and arrange for all visits: Sharon’s three children, a few remaining friends, her minister, the Hospice chaplain, a Senior Companion, and an MDP researcher:
But when she has company–and she has a lot of it–then to give her any privacy I have to stay out of the way. And not only that, but I have to be hostess! [Laughs] It’s not something I would have thought about at all.
For most caregivers, the most challenging task was learning to keep track of and administer all the medications needed to keep the patients as comfortable and alert as possible. Walt had twelve different medications that Dorothy had to manage for him on a daily basis. On a visit with them before he died, Dorothy was casual in talking about his medications:
Researcher: Do you have pain with this?
Walt: Lots of pain pills.
Dorothy: He’s on morphine, 45 grams, three times a day. Every eight hours. Plus Roxanal sometimes.
Walt: When it starts to hurt I take it. I say, “Give me some, what is it, Roxanal?”
Dorothy: Well, that’s what I give him when he needs it quick. The morphine I just give him every eight hours, 45 grams.
But after Walt died, Dorothy explained at length what a challenge this routine had been for her. She related that she was able to manage his daily routine only by keeping a written record of his symptoms and vital signs every day, as well as his medication schedule. She explained that this record keeping not only helped her with medications, it also allowed her to understand his decline:
I kept records of everything from day to day. I kept a record of his blood pressure. I took, I kept a record of his pulse, I kept a record of everything he’d done. I kept track of all the medications that we changed and why we changed them. And as soon as he started saying, “I can’t eat this. I can’t swallow it. My taste is leaving,” and was having difficulty going to the bathroom … and started dropping more weight–he had already gone down from 210 to 165–I knew his body was not doing what it should.
We reproduce Dorothy’s handwritten daily records (Fig. 7-1) showing the medications available to Walt and her recording of his pulse, temperature, and oxygen levels at two different times. Taking vital signs and monitoring his medications, appetite, digestion, and elimination became her paramount daily tasks.
The caregivers we visited demonstrated a high degree of acquired competence in understanding and performing the tasks required for end-of-life care: monitoring and managing medications, hygiene and comfort, vital signs, and troubling symptoms. Two different caregivers’ accounts illustrate the competence they had acquired in the preceding months:
Towards the end he was infused at home with … right now I’m not thinking of it … Vancomycin. We had a Hickman catheter that had a Y, so he could have his Fentanyl, which was necessary, and the other Y for that [antibiotic]. That took about an hour and a half of time. And it entailed a saline flush beforehand, too. It was twice a day, like eight and eight. (Carrie)
Her pain patch is Duragesic. You have to change it every 72 hours. That’s when the patch is on the low side, and that’s when more of the pain breaks through. Her head didn’t feel good this morning. She’s pretty tight back there. I took the temperature and blood pressure, the blood sugar. (Bernice)
Organizing for Twenty-four-Hour Care
The high level of medication and monitoring involved in end-of-life palliative care at home means that the family caregiver’s life must be as organized as a hospital. Medications have to be given in precise amounts, sometimes at precise times. Someone must always be with the patient, to find the Roxanol or other medication and administer it when there is unexpected pain or nausea. Although the patients in our study varied greatly with regard to their needs for care and assistance, even with the same diagnosis, none of the nine participants could be left alone for more than a few minutes during the last three to six months of their lives. Even a trip to the grocery store must be carefully planned around finding someone to be in the house–or done with great stress and worry.
One caregiver who was suddenly thrust into three weeks of round-the-clock caregiving when her sister was released from the hospital into her care, was forceful in her assessment of this experience:
You know, I’ve never been a nurse. I was a greenhorn. They called me up to the hospital, and they went through all the medicines with me and they told me what time she needed to take them. And you know, I’m a fairly astute learner, but as I started giving her, her medicines, I had to make up a chart on my computer and put it on my refrigerator…. (Irene)
Another summarized the end of her sister’s life:
It’s just all-consuming at the time you’re doing it. If it went on for months I don’t think I could carry on at that level. (Connie)
This picture of the family caregiving tasks and activities comes from the caregivers’ perspectives on what caring for a terminally ill person at home, typically with weekly visits from a Hospice nurse, is like. Our impressions from observing these family caregivers were borne out by their own accounts: Caregiving for someone who is terminally ill is a full-time occupation for more than one person. A single family caregiver for someone who is terminally ill may end up doing the work done by three shifts of nurses at a hospital, nursing home, or Hospice House.
Caregivers: How Chosen?
Caregiving may begin long before the terminal diagnosis, when the ill person is elderly. In these cases, Albert notes:
Households begin their adaptation to caregiving demands [of an elderly member] long before acute illness forces a relocation of the impaired elder (or relocation of a caregiver to the parent’s home)…. This gradual decline leads future caregivers to alter schedules and begin their socialization into the role of caregiver before caregiving demands precipitate major changes in the household. With increasing parental dependence, we find that caregivers and impaired parents begin to form quasi-households (Albert 1990, 23; emphasis in original).
In our study, four of the caregivers and patients had formed quasi-households years earlier; three were existing households of couples when the person fell seriously ill. Three other situations involved households that formed rather suddenly, following a more unexpected diagnosis of terminal illness (see Table 7-2). Two of these households involved patients in their middle years.
The factors leading to the choice of a caregiver from among available family members have been well-documented in literature on the care of the chronically ill. Caregivers are most likely to be those who are “unmarried, female, not working outside the home” (Albert 1990) or “the only adult child living near, possessing a close relationship with parent in earlier years, strong set of religious/ family values” (Silverman and Huelsman 1990). Silverman and Huelsman document that some caregivers assume their role because of a family conflict, which eliminates some other candidates. Albert (1990) also found that caregivers preselect themselves by taking a greater interest in the ill person’s care, by staying or moving nearby, and by preparing their own households in advance for the parent’s relocation. Data on the individual caregivers in this study validate these findings.
Bernice (Mabel’s Caregiver)
Bernice never spoke about how she became her mother’s caregiver. Proximity seemed to be the likely answer; although Mabel’s other daughter lived in a nearby state, Bernice was living in Missoula when Mabel first had serious health problems:
We moved in with each other in ’92, when she had her mini-stroke. We lived a couple of years together over on North Avenue. And in ’94 we moved in here….
Table 7-2 Types of Caregiving Households
|Quasi-households||Existing households||Suddenly formed households|
|Debbie and Roberta||Dorothy and Walt||Barbara and Irene (3 weeks)|
|Connie and Sharon||Ralph and Sandy||Dennis and Carrie|
|Mabel and Bernice||Barbara and Dan||Kitty and friends|
|Sarah and Karen|
With her mini-stroke–that was in November–I kinda figured I would get her home, out of the hospital; well, I took her home with me. Where she was renting the landlord wasn’t very nice. And I did get a letter, telling her she had 30 days to get out of there. Okay, so that’s it, we’re moving in December. And it was so hard on her.
Bernice also appeared to have been “chosen” as the primary caregiver by default. She was less encumbered by other responsibilities or family ties than Mabel’s other daughter. Bernice had been divorced for several years when her mother became seriously ill. Bernice’s sons were grown and starting families of their own, and she was struggling to support herself financially. Within a year of moving to the new apartment with her mother, Bernice lost her job and was put on disability for three years:
I was in housekeeping, and they called me in once for an interview in distributing. And I turned that down. I still wasn’t really over the marriage, and I was like, “Just give me a wall to clean and I’ll be happy.” If I had it to do over again, I woulda went into distributing because housekeeping was just too much on my legs and my knees. And then, I should not have pushed it the way I did because it really just pushed me over the edge. And between my mind and my legs it was a, um, they had me down as a severe disability. In the meantime, she had her little mini-stroke in ’92, and we moved in together at that time. Went through a lot of hell at that time.
Caring for Mabel full-time may have been a welcome responsibility–a task Bernice could take on and do productively at a time when other opportunities seemed closed. Caring for her mother also gave her work she could do well, with a sense of pride. Bernice commented to us at one point that caregiving “is just like a job.”
Debbie (Roberta’s Caregiver)
Debbie, Roberta’s primary caregiver, was the middle of three daughters–all living in Montana, all with their own grown children. Debbie’s older sister was recently widowed and might have seemed the obvious choice for primary caregiver. We asked Debbie to tell us how she was the one “selected” in her family. Again, she mentioned proximity, gender influences, and her personal relationship with her mother as factors that helped to determine her appointment. Debbie also described how she began to form a quasi-household with her mother, helping her daily while she lived in her own home:
It started, actually, a long time ago, when Mom was living by herself. For four or five years I’ve been having to take care of her in one form or another. It seemed like I always kind of was able to tell what she needed. I always knew when she needed something. And it kind of went into the physical things of doing her shopping and taking care of her house, and it got to be more and more. The less she could do, the more we would do. And then my sisters would help, too.
In this family, Debbie’s close relationship with her mother did not mean a distant relationship with the other daughters: All three women were close to their mother. Other circumstances in the lives of her sisters, however, militated against their choice:
But my older sister lost her husband several years ago, and it’s been hard for her to do this. And she was dealing with an awful lot of those issues, more so than most people. When Mom got sick, I think she was afraid to be involved with it, with Mom’s sickness. It was hard for her to do anything like this, really difficult. And Mom knew this.
My younger sister hasn’t been around in this area too much. And I actually don’t think my younger sister’s husband would be of the mind to do it, like Joe [Debbie’s husband] is.
Debbie’s selection seems to have been by mutual consent among all three daughters and their mother. Unlike some other caregivers, Debbie felt that her selection was appropriate, not forced on her by default.
Connie (Sharon’s Caregiver)
Although we have described caregivers as “choosing” and “being chosen,” such decisions evolve slowly in most cases. Seldom are family meetings held at which someone is overtly chosen to take on the primary caregiving role without having any prior involvement. Instead, small steps of helping and assisting increase over time to bigger efforts, as one family member volunteers to do more and more. Connie exemplifies this pattern. She began “running over” to help Sharon immediately after her own husband died, four years before Sharon’s death:
She had an apartment with an upstairs bathroom. And so that made it really difficult for a long time for her. We were all keeping her going. She really hadn’t been able to [care for herself]. I did her washing and took a lot of food over. And her daughter took food often.
This pattern of going several miles across town to help her sister on a daily basis continued for two years, with Sharon’s daughter helping as well. Then Sharon’s daughter and her family moved away from Missoula to a nearby state, just as Sharon began to realize that she couldn’t live alone any more. At that point, Connie had been offering for some time to have Sharon move in with her.
From Sharon’s perspective, her sister Connie–living alone in a large, comfortable home out in the Missoula Valley–was the logical choice to take her in. Sharon told us of calling her sister one day:
I had finally admitted what people had been telling me, that I really couldn’t live alone. So Connie had several times offered to take me [laughs], and I didn’t want to lose my independence. Finally I called her up and I said, “Is that offer still open?” So she said, “Yes!”
From Connie’s perspective, having Sharon live with her made it easier at first:
When she first moved in with me, it was easier for me because I was trying to run over to her apartment all the time, and I was doing her laundry and taking her food because she was not able to be alone. So it really was easier having her here, under my roof. At first it was easier, that first year.
Again, Connie’s selection as caregiver was by default and occurred more gradually than it might appear, if one heard only Sharon’s story of “calling her up.” Other potential family caregivers were less available. Sharon’s two sons who lived in or near Missoula had complicated family lives, small homes, or teenage children still at home. Her daughter had moved away, and Sharon showed no interest in going with her and moving from the only part of the world she had ever lived. Her only other close family, a sister, lived in California. Although Sharon’s children or her other sister might have “taken her in” if necessary, Connie had the fewest barriers and was already socialized into caregiving for her. Because Connie volunteered to take Sharon in, Sharon’s sons who still lived in the Missoula area never volunteered any concerns in their conversations with us about not doing so.
Karen (Sarah’s Caregiver)
Sarah explained how her daughter Karen had come to be the primary caregiver among her three children during the ten years she had had cancer:
Researcher: Is there one daughter that’s been particularly around to take care of you?
Sarah: Yeah, just one. The other one’s working, and the other one is in Washington.
Researcher: So the one that wasn’t working got more time with Mom?
From Karen’s perspective, there was resentment about the unequal burden:
I’ve got two sisters, but you’d never know it. I’m finding out that’s the way it is in a lot of families.
As in most other families, the daughter who wasn’t working and who lived nearby became the primary caregiver, responsible physically and eventually financially.
“The guys just can’t deal with this”
In Missoula in 1997, caregiving clearly was still a “woman’s job”; men were not spoken of or thought of as primary caregivers. In fact, one participant made the point very bluntly:
I think one of the things that I speak firsthand about is that with chronic and terminal illness, that if there’s a couple dealing with it, depending on who is ill, I think women are greater caretakers than men are. And men will do it, but only if they freak out. And they’ll hide their fear. And they’ll find diversions. So they need help.
Another caregiver described the difficulty the men in her family had at the death of her mother–specifically, over having the Chalice of Repose come:
My husband and my sister’s husband, well, they were most upset with this decision. They felt that it would upset Mom; it would not be fair to her to have to feel this withdrawal in this manner and be frightened by it. The guys couldn’t deal with this. My sister’s husband went back the next morning. He just can’t deal with these things.
Value and Meaning: “I wouldn’t miss this time”
Most of our families, caught up in caring for someone who is terminally ill, had difficulty articulating the value or meaning they found in this last time together. Value and meaning came to them later, as they reflected on it, rather than during the intense, arduous, emotionally charged period itself. Each person and family found their own kind of value in what they were doing. Our observations and conversations brought out very different kinds of values expressed by families and friends providing care:
· Being able to avoid nursing home care
· Family benefits and greater family cohesion
· Renewed relationship between caregiver and dying person
· Affirmation of church as a caring community
· Personal growth on the caregiver’s part
· Doing one’s duty.
Avoiding Nursing Home or Hospital: “Please don’t ever make me go”
Avoiding the nursing home or rest home was a paramount value in most of our families with elderly members in 1997. Many had memories of parents or grandparents being placed in a “rest home” at the end of their lives and wanted to avoid that scenario at all costs. And most patients wanted to avoid hospitalization. So a major positive benefit of caregiving, no matter how great the burden, was that the dying person could be at home during their last months and days. The caregivers’ pride in honoring their loved one’s preference was evident in their statements:
I was thinking the other day that I don’t know what else could work. A nursing home couldn’t begin to give her the care that she really needs. And anyway, I’m glad to be with her day by day through this.
I wanted to keep him at home. He wanted to stay at home. He said, “Please don’t ever make me go. I just couldn’t, I just couldn’t stand it.” Walt clung to being here.
Debbie said of her mother, “She would never want to go to a rest home. I intend to leave her here until the end.” When Roberta was admitted to the hospital with a broken hip, Debbie and her sisters debated whether to leave her there or send her to Hospice House or a nursing home:
We brought her home. They said, “Do you want to take her to the Hospice House or a nursing home, or what’s your choice?” And I said, “Home.” I said, “There’s no other choice.”
Mabel’s fear of a nursing home also motivated her daughter Bernice:
I plan to keep her here. That’s what she wants. She doesn’t want to go into a nursing home. That’s one of her biggest fears.
Debbie had placed her mother in a nursing home when she got out of the hospital, just to see if it would work for her. Her observations of the effects on Roberta strengthened Debbie’s resolve to keep her mother at home and helped give meaning to their last six months together:
Over time I saw her not responding to anyone. I saw her coming into a shell. I saw some strange interactions with her and the nurses, where I could tell that she had been causing problems. I could see that she was not happy, I could see her sitting in the corners all the time, hating to be in her room. And pretty soon I saw a lot of sadness, tears, whether we were there or not.
The assertion that most patients would prefer not to go into a nursing home may seem obvious. Many patients experience entering an institution as a kind of “social burial” (Seale 1998, 170) because it involves the rupturing of everyday social activities with friends and families. Although none of these families could have articulated this concept, it supports the determination of many families to maintain their loved ones at home as long as they were cognizant. From the caregiver’s perspective, what seems to have mattered was keeping the promise made to the patient. On the most difficult days, when the burdens of twenty-four-hour care were (to an outside observer) overwhelming, what gave caregivers strength was the knowledge that the alternative would have been institutionalized care for someone still cognizant and resistant to the notion.
“This has been an excellent process for my family”
For two families with grown children, grandchildren, and great-grandchildren, the value of family caregiving was that everyone could become involved–in caring, in being present as the person was dying, and in letting go. The experience of sharing in the dying of a family member created greater cohesion among the surviving family members and was regarded as a positive and lasting benefit.
Roberta’s family was infused with an awareness of the reason they were caring for her at home as she was dying–of how important it was to all of them as a family task and a family experience–even while they were doing it. Two months before Roberta died, Debbie said:
We have fun. We have enjoyed this part of it, actually. This has been an excellent process for my family, for the kids. For my family, I really feel strongly, absolutely, there has been some value. And for me, it’s more so. I think it’s an understanding of a full circle of life.
Three months later, Debbie described the family standing together in a circle around their mother/grandmother/great-grandmother as she lay dying:
We were all in the room, holding her hand, telling her we loved her. We thanked her for letting us be a part of her transition, which was so beautiful–to see her peaceful, to hold her hand and feel this great powerful comfort of doing this. We felt so much love and warmth that time in the bonding that we all had with each other.
Learning to Let Go: “The entire family has to be willing”
Another caregiver, Dorothy, regarded her husband’s final year of life as valuable and necessary for their family–despite his physical and emotional difficulties–because their children “weren’t willing to let him go yet.” She described herself as determined to get all five children to understand and accept Walt’s impending death and to allow him to leave:
I think the entire family has to be willing to let go. I think there has to be an acceptance all the way around. And that keeps the family going. It keeps them happy with each other. Afterward they can go on living.
When Walt was in the hospital a year before he died, the family had resolved not to intervene; they told the doctors, “don’t do anything”–expecting him to die that night. According to Dorothy, however, at least one of Walt’s children wasn’t ready:
My son sat by him and said, “Oh, Dad, you just can’t leave now. You just can’t leave now.” And the following morning when Walt came to in the room, I said, “What do you remember?” And he said, “Well, I can remember just a real bright light in a tunnel. I could hear those boys, but mainly I could hear one of them yelling, ‘Dad, it isn’t time for you to go.”‘
Dorothy described how she encouraged him to be patient after this near-fatal heart attack because his children weren’t yet willing for him to die:
His main thing was, he’d say, “Why do I have to go on? Isn’t there just some way that I can leave?” I’d say, “Walt, when your time comes and your body and your spirit says it’s time for you to go, you will go.”
So there was some struggle, that he wanted to go. And it’s like I told him: It’s good that you’re still here because now your children are going to be happier when you go than they would’ve been otherwise. So he had to satisfy, I guess, he had to make his children be willing to accept it, so they could let him go. I think that was his main thing, that he had to get to the point where the children could let him go. And he realized that.
On Walt’s last day, Dorothy sent their children into his room to tell him he could go, that the boys had his tools, the girls had his books, and his work was done. This process of building a consensus to “let Dad go” reflected this family’s way of being. This family works together to help each other, even to the point of creating a legal family partnership among the five siblings to provide for their parents’ last years. Their dad’s dying had to be by mutual consent: As Walt’s near-death experience a year earlier demonstrated, he couldn’t just die until everyone was ready.
Others also spoke of changes in their family because of their awareness that this period was the end of life for one of them. Decisions that had long been avoided were made, when life was short–as Carrie, Dennis’s mother, described:
It has brought an awareness to our whole family. And there’s been a lot of good come out of this. It was almost like there was no other way that his brother would’ve ever gotten out of that hell hole in California. It’s almost as though Dennis was the sacrificial lamb, that his suffering had to happen. Dennis always wanted his brother to come back, and his brother knew that, but he was stuck. What made him decide to do it was that death was close, that Dennis was getting worse. He called up and said, “Ready.” So there has been an awful lot of good.
Researchers studying home caregiving have pointed out that for some families, lengthy caregiving has the positive benefit of bringing about a “pooling of family support” (Silverman and Huelsman 1990), as well as greater cohesiveness and a more unified system of care–which may benefit all family members. These two families appeared to have found the task of caring for a dying member helpful as a stimulus for more conscious and, in one case, formalized arrangements for mutual support among the remaining members to meet each other’s needs as well.
New Closeness/Renewed Relationship
A mother caring for her son and two sisters caring for their sisters found new closeness in caregiving. It allowed them to restore family relationships stretched thin by adult lives separately lived and participate consciously as partners in dying.
“A privilege to be able to be present”
Carrie: I feel at times a privilege to be able to be present with somebody that’s easy to be with. I didn’t know it would be that way.
Researcher: You got to know him differently now?
Carrie: Yes, much better. How lucky I was to get to know him so well. He was always so lucid. His mind was good. We could have humor and family time.
For this mother, even with her physical exhaustion, the year of caregiving was a year of reconnection with her firstborn son as a new adult friend. They shared a new spirituality in Alcoholics Anonymous, holding “little meetings” in the car as they drove to the doctor; they shared the blessings of a sober mind, jokes, and the small pleasures of coffee in the morning; and they shared “living moment to moment.” They both talked of being “joined at the hip”; by the time we met them, they seemed to have become truly each other’s best friend. Shortly before Dennis died, his mother compared herself to a friend whose son had died rather suddenly of pancreatic cancer and who was filled with regret for things she hadn’t said. Because of this year spent together, Carrie said, “I don’t think I’m gonna regret, or wish I could say ‘I love you’ one more time.”After Dennis’s death, she said:
There is no way that anyone who wasn’t there could ever understand what goes on. I saw a phrase the other day I thought was so appropriate: Finding the real self of the other is like making a soul visible. The soul becomes visible. And that’s what I felt like; it was like soul to soul with Dennis. It became that.
“I wouldn’t miss this time”
Caring for Sharon was important to Connie for two reasons: her love and admiration for her older sibling and her hope that this death would heal some of the wounds left by her husband’s recent death. Connie explained how she saw the situation:
I’m glad to be doing it. I mean, I wouldn’t miss this time. I’m glad to be part of the end of her life. And I was thinking the other day that I don’t know what else could work. A nursing home couldn’t begin to give her the care that she really needs. And anyway, I’m glad to be with her day by day through this.
I really want to do this for Sharon and for all of us. It is very important for me to help her through the end of her life.
“I did everything I would want somebody to do for me”
Barbara’s sister-caregiver Irene rejoiced in the opportunity to walk part of the way with her sister on her “journey to the other side”:
I told her, “I want to thank you for this opportunity to see through your eyes to the other side.”
I love classical music, and she loves classical music. The music was really soothing to her. I fixed things that would look good. I knew her taste was not the best. I did everything that I would want somebody to do for me. I would say, “Barbara, why don’t you just sit back and close your eyes, and I’ll tell you a story. Just listen.” I would tell her stories that had morals in them. And I’d talk about our grandma or our medicine bundle that we belong to.
Connecting the Church Family
For a local minister and a group of church members, the extraordinary effort to help one elderly parishioner stay in her own home, with her beloved animals, for six long months, was a symbol of their own connectedness to each other. This particular Missoula parish and its leaders–ordained and lay–have a tradition of active concern for the elderly, and their church events stress intergenerational ties. Thus, their effort to help Kitty was willingly begun out of an explicit tradition of caring for their older members–particularly those, like Kitty, who had no siblings, spouse, or children and who had made the church their family over many years. A member of the church described their tradition:
Cherishing the elderly has been a long tradition of this parish. They don’t stop coming to church until they absolutely can’t. But we started to notice that we lost them without knowing that we lost them. There was no way knowing whether they’ve decided to take the summer off and garden, or whether they’re sick, or whether it’s aging. So we thought, we have to pay deliberate attention to the elderly people. So we’ve had a whole series of programs, and one of our parish leaders spent two summers going from house to house visiting people, particularly older people. We spent a lot of time at that sort of thing. And so when Kitty started to pull away about three years ago little by little, and dropped out of Altar Guild, we knew.
The parish priest, who had orchestrated the system of care for Kitty, also spoke of the personal value to him of helping her in her last months:
I came here as a young priest. They took me in and taught me, and then they became my friends, and now I have to take care of them. It’s that whole cycle of the child beginning to take care of the parent, and so for me it’s been a blessing, because I know all of them.
Personal Growth for Caregivers: “What a privilege it is”
Several caregivers also pointed out that being with someone at the end became an opportunity for their own personal growth. Debbie mentioned the personal value to her of “learning to be sensitive” to her mother’s needs, to “always try and put myself in her place.” She said:
It would be really easy to get wrapped up in what you’re doing for them instead of how they’re feeling about things. I had a hard time trying not to tell Mom what she needed, when actually she was fine. She could have told me what she needed, and I should listen to her a little bit more about some things. So I finally learned. I think it took me a while to realize that her needs were more important than mine.
Carrie, despite facing the imminent loss of her son, still spoke of the benefits–of being aware of impending death as an opportunity to understand death and to learn how to appreciate each moment:
Other people would say, “What a tragedy.” But in there, someplace, comes a knowledge of what a privilege it is. We’re all going to die, but few people have the privilege of a dress rehearsal for my own death. That’s putting it poorly, maybe, but it’s a knowledge, an appreciation of life….
I think you really get to know your own soul and the soul of another pretty well. Nothing else carries the importance that it used to. In the midst of a lot of pain, suffering, and the knowledge of having a terminal condition, in the midst of that you find so much more to be grateful for. The things that are possible, the things that are enjoyable crop up. Whereas before, the mind would be on tomorrow, probably, instead of now. It’s much, much deeper now….
Being told or given the time of awareness before death is an opportunity not everyone gets. Pretty soon you start to realize the pluses that there are.
Barbara’s sister Irene spoke of what she had learned from being present at her sister’s struggle, using the language of a warrior facing battle:
Eventually you get to a point where the illness begins to teach you about yourself. Like we say in our language, you learn to dig deeper, to really know yourself. To really know what your strengths are, what your limitations are, and then how you’re going to go about attacking the challenge. You’re never done learning.
For these three women, caring for someone at the end of life brought personal growth, and they recognized that the pain they experienced came from the lessons they needed to learn.
Balancing this picture, some family caregivers–those with more financial difficulties and less family support, as well as those who themselves were struggling with personal issues, particularly other losses–did not speak with us of the “meaningfulness” of this time. Compounded losses and physical, financial, and psychological stresses may have made it more difficult for them to identify anything of positive value or meaning in this time of caring at the end of life.
Barbara’s husband Dan had difficulty describing anything of “value” or meaning in Barbara’s dying. His experience was marked by loss and fear. Dan and Barbara shared the hope that her remission would last a long time.
Dan: What am I afraid of? Oh, not having Barbara around, of course. Barbara’s my best friend. I don’t have any specific plans. I hope that she gets better. That she beats this.
Researcher: Well, I guess one of the things that we’re interested in is what kind of things you’re learning? From all this experience.
Researcher: Yeah. What’s different about your life? Insightful of anything?
Dan: Heh-heh. (Pause) Oh man!
Researcher: I guess it’s providing an opportunity to see life differently? Or … [long pause]
Dan: Yeah. There’s a lot of things that you can’t do [pause] together, like on trips and stuff like that we might do together. But we can’t because if she’s sick, somewhere when we’re on a trip, the things to take care of her aren’t there, so our kind of life together, to do things together, is not as much.
For Dan, the experiences and pleasures he and his wife had shared–camping, fishing, car trips to visit friends–were no longer possible. He could articulate his losses–of his best friend, of their times together, of his work–but could not find anything positive in this time as compensation.
Two other caregivers, Karen and Bernice–both caring for mothers with breast cancer that had spread to the bone–also never directly mentioned any positive values of caregiving or responded when the topic was brought up. From what they did want to talk about, however, we can infer that one value for both of them was in being the “good daughter.” Each seemed to regard herself as the one who was willing to put her own life on hold to care for an aging parent–in contrast to siblings who did not. Each of them spoke of her duty and commitment to “care for Mom,” despite the difficulties and disruption in each one’s personal life.
In this section we focus on aspects of caregiving that most of caregivers mentioned as most difficult or burdensome. We have made no attempt to judge or compare the degree of stress or burden; we simply report how caregivers described their difficulties. Among the issues caregivers identified are the following:
· Physiological stress
· Being “on a short leash”
· Living someone else’s life–no privacy or time for oneself
· Scheduling, management of care
· Difficulty of setting limits
· Separation from other family
· Difficult symptoms
· Effects of a prior death.
From this limited sample, the identified caregiver difficulties appear to have as much to do with the cumulative physical and psychological burden of caring for someone who is chronically ill over a long time as with the existential experience of facing a loved one’s impending death. Twentieth-century advances in medical technology and treatment mean that individuals with terminal diagnoses are surviving longer–sometimes much longer–than in earlier times. This longer survival increases the length of time prior to death that patients require daily care, in institutions or at home with family.
When we called to schedule visits, we quickly found that home care was a busy, sometimes exhausting experience for most families. Participants said, “Come back anytime; we’re not going anywhere.” In fact, however, caregivers did not find it easy to fit us into their schedule: Their weeks already were filled with nurse visits, other therapists, the hospice “bath lady,” and visits from family and friends.
Most of our caregivers seemed not to have anticipated the all-consuming nature of twenty-four-hour care for someone who is terminally ill. The amount of help actually available to caregivers in this study varied greatly (see chapter 8). The remainder of this section discusses the difficulties shared by most family caregivers, regardless of circumstances or amount of assistance. The section that follows provides some snapshots of caregiving when adequate personal or financial support was not available.
Physiological Stress Reactions: Chest Pains
Some caregivers spoke openly about the “downside” of their caregiving. Months and years of caring for someone with a chronic illness had already worn them down. Now the final “push” was needed, and their resilience and strength were already worn thin. Connie had spent years caring for a diabetic husband on home kidney dialysis; after eighteen months of caring for her sister, she began having chest pains. When the pains occurred, Connie remembered that they had happened to her before:
Before my husband died, probably in the year before, I began to have chest pains. And I had them thoroughly checked out, because sometimes I would faint. And the doctor told me that the kind where you pass out is the kind where you die. So I took that very seriously, and we had heart tests made, and my heart was fine. So it was always just a mystery what was causing those pains. But they started again for me now, before I had all this help. I haven’t had any since this extra help. It was just stress.
The “extra help” was hospice care and services, which had begun five weeks before this conversation. Without hospice assistance, Connie recognized that she was at risk of serious physical stress reactions to the burdens of caregiving.
Connie was one of the “resilient,” strong caregivers. She had a good deal of help from family and friends, as well as from hospice. Even so, she found the lengthy, unpredictable experience of caring for her dying sister difficult.
“I’m on a short leash”
One constraint that every caregiver mentioned was the lack of physical and psychological freedom because they could not leave the dying person alone, even for short periods of time. Perhaps because home caregiving has only recently (after several generations) become a part of family life again, most of the caregivers in this study had little or no previous life experience with long-term care at home–and thus had no basis for anticipating how constrained their lives would become when someone stayed home to die. There also was no way for them to know when their responsibilities would end. Connie described her situation this way:
Because of the services we have, I am able to get out some, but it’s hard. It’s hard. I don’t have any trouble getting out to do the errands I need to do because there’s enough help for that. I decided some months ago that we just couldn’t leave her alone anymore. She kept having these little fractures. And I could picture her on the floor, unable to move for a long time. And when you go out, it always takes longer than you think it will, just to do a quick errand….
I guess probably once or twice a week I go out to lunch with friends, or my daughter, but otherwise I don’t. I do have a group of friends that I usually go to dinner with. And they usually go to a movie or something afterward. And lately I haven’t felt like I wanted to do that. I just–I’m on this short leash. I have to hurry back home.
Another caregiver, Debbie, talked about her surprise at how “unfree” she felt while her mother lived with her:
Another thing I wasn’t prepared for, when Mom came to live with us, was losing the independence that my husband and I had. We found that we were limited; we couldn’t go anywhere as we did before. We’d just pick up and go golfing, or just go, without thinking ahead or planning. I was not quite prepared for this. We tried leaving her alone a couple of times when we ran to the store, and we couldn’t do it…. I couldn’t just pick up and leave and do what I want to do and come back. And this went on for months.
Caregivers who had no other person living with them and no family or friends to call on had to develop specific strategies for surviving and meeting their needs. Sandy would struggle to get Ralph and his portable oxygen supply into the car to go with her to the grocery store if she needed something unexpectedly, leaving him sitting outside while she ran in. She counted on weekly visits from Ralph’s sister or brother (who lived 100 miles away) and visits from her hospice volunteer to cut down on the number of times a week she had to do this. Even with two or three visits a week, however, Sandy’s freedom to do anything else was severely limited during the 16 months she and Ralph lived in Missoula.
Bernice received no help from her family or friends in caring for her mother. Mabel disliked having anyone else take care of her (thus, Bernice had no help or respite from other family members or hospice volunteers) and did not seem to understand that she couldn’t be left alone for long. So Bernice would leave her mother napping in the chair and rush to the grocery store or drugstore on essential errands. She felt she couldn’t be gone more than twenty minutes. Bernice described how the situation affected her:
The hospice nurse got me a volunteer, and I used her just once! Mom says, “I don’t need nobody here.” But she doesn’t realize that for me to go out and hurry around and come home, it’s stressful on me. Because nobody knows if one of her weight-bearing bones are gonna fracture.
In the six months we visited Bernice and Mabel regularly, Bernice talked about being able to leave their apartment for one half-hour shopping trip in any given week.
Another caregiver reflected on the loss of her hobbies during the last years of her husband’s life:
I used to belong to lots of things. I’ve taught flower arranging and landscaping. But even before he got so ill, I really couldn’t do what I wanted to do.
“I’m living her life”
One of the caregivers (Connie) was very insightful and articulate about the constraints of caregiving, particularly in a newly formed household (i.e., a household formed by family members for the purpose of caregiving, in contrast to an existing household in which one member becomes terminally ill). Connie identified two areas in which full-time caregiving particularly affected her own life: interference with her ability to manage own needs and tasks, and the loss of her home and privacy.
I guess one more thing I would say is how hard it is for me to settle down to the things I need to do, paperwork, to concentrate on my own work. And I forget to take my own vitamins and stuff [laugh]; I’m just living her life! She takes every waking thought!
In the same breath that Connie talked about how glad she was to be sharing the end of her sister’s life, she began to explain the downside: the loss of her own personal life. During their first year together, before Sharon “officially” became terminally ill, Connie had enjoyed having her sister live with her. They could play board games, go for car rides, and watch TV together. But the final months of Sharon’s life were taken over by the demands of the illness, and the end-of-life “last things”:
What I’m feeling is that I’m really living HER life [laugh]. And my home is HER home [laugh]. I didn’t feel I was living her life before. But from the time she moved in, I felt that my home became her home. I mean, I had expected to share it, but I hadn’t realized that her kids come so much!
What posed an unexpected difficulty for Connie–besides having to become her sister’s mind, think for her, and plan her care–was losing the privacy of her own home. This aspect of caregiving surprised her:
Her kids do visit her, and it’s wonderful. But, you know, when they’re here, I like to give them some privacy. So it means I have to stay in my room or something. That was the surprising feeling to me. Because there’s plenty of room here for the two of us, to have space and privacy. But when she has company–and she has a lot of it–then to give her any privacy I have to stay out of the way. And not only that, but I have to be hostess! [Laughs] It’s not something I would have thought about at all.
The constraints of end-of-life caregiving, with its constant life-and-death aspect, affect even caregivers who do not have their family members at home. One caregiver, Karen, whose mother was at Hospice House for five months and then moved to a board and care home, described her difficulties in living her own life. Karen had constant responsibility to see that her mother received her medical care, except during the time Sarah lived at Hospice House.
It’s just been steady appointments. I finally got a perm myself. I felt so good yesterday [laughs]. I canceled three times because they would change her radiation or her appointments, so it’s easier for me to change mine.
If these few families can provide the basis for a tentative generalization, we might say that more burden is felt by non-spouse caregivers, such as siblings or adult children, who bring a terminally ill family member into their home for an extended period of time. Spouses already are accustomed to “living each other’s lives” and have developed patterns of privacy and of meeting their own needs within the relationship. A terminal illness may not be as disruptive to the life and needs of a spouse as to a non-spouse caregiver. In this regard, we stress that what matters is the perception or subjective experience of a burden. As with pain, each person has his or her own tolerance level. Exploring the differing needs of spousal and nonspousal caregivers–even though they appear to have the same degree of responsibility–may be useful for those planning support services and respite care.
Scheduling and Managing Nursing Care
Connie pointed out the difficulties of managing nursing care for a terminally ill patient at home:
I really wouldn’t be able to do this endlessly. She takes every waking thought. I have to keep track of. It just takes a lot of different things to keep her breathing; she has to have them… .
Even though I do understand it, and I can do it, I still make mistakes. Sometimes I forget and miss, and she’s an hour or two late getting a med or something…. After giving herself inhalations for years and years, she doesn’t remember how to do it. You would think it would be second nature. I just can’t believe that we have to instruct her each time. She has to take them exactly five minutes apart, and she has to be instructed again.
Family caregivers were required to perform some kinds of skilled nursing care and to be on call twenty-four hours a day, with only minimal training. If the patient has been referred to or requested hospice care, there was the additional support of a weekly thirty-minute nurse visit and phone assistance. Connie’s assessment of this experience was stark:
It’s just all-consuming at the time you’re doing it. If it went on for months, I don’t think I could carry on at that level.
Other caregivers also mentioned how difficult it was to schedule every minute to sustain another person’s life. Connie counted the number of appointments and visits she organized on a weekly basis: twenty-three, or three-four every day. This kind of schedule required a high level of management, as Debbie found out:
I had to plan ahead, and I’m not a good planner; I’m not a good scheduler.
Setting limits on care is one of the impossible tasks facing caregivers: With someone hovering close to death, every minute is precious; every cough can be significant.
This uncertainty regarding the limits of one’s obligation to render care is perhaps the greatest source of disruption in household organization. If one is always on call, always expected to do more, and never sure one is doing enough, it is impossible to plan for the future or maintain any interest outside caregiving. Caregiving in this case absorbs all household resources. (Albert 1990, 26)
Knowing when one has “done enough” was just as stressful and difficult for the caregivers in our study as the literature on caregiving describes. Even caregivers with extra help from family for respite care found they were limited:
It is hard to balance. Because of the services we have, I am able to get out some, but it’s hard; it’s hard. Our cousin doesn’t like to drive at night. So as it gets dark earlier, I’m going to be more limited in getting out. (Connie)
Another caregiver found that the psychological concerns for her mother became more intense as the time went on, even with a husband who stayed home and the resources to bring in a health care aide five days a week to stay with her mother while she worked. It was easier for Debbie to see in retrospect that she could–and perhaps should–have set limits on her personal caregiving and gotten more help:
I think we needed to get different care people in here. I think it was too much for me to take care of her all the time. And Mom not being willing to adjust to people was a difficult thing. I think it would have been smart to have two or three people with a schedule….
It got easier for me during the summer when I was home. I found it harder when I went back to work–wondering at work what was going on at home, you know, having the need to be here and help her was very, very hard. Not just in worrying about it, but in not having a handle on things. It seemed like I was kind of out of control of the household.
We observed that some caregivers were not able to find any time for themselves, to set any limits on the amount of time and care they would provide. Their observable symptoms of stress–physical complaints, emotional instability, depressive reactions–were correspondingly greater.
The caregivers spoke about their sense of being exhausted as much by the unending and uncertain demands as by the physical care itself. Because of the great difficulty of setting limits when someone is dying, they tended to put off their own needs, and those of their families, until death occurred. Sometimes this feeling led to a new fear: that caregiving would never end, as one caregiver said:
I just don’t know what to think about the future. Seeing her so well, this could be years, and I really don’t want to do it for years…. I don’t want to wish for, for her death, but it’s the only way you have.
This ambivalence and internal conflict may be common among caregivers, even though most cannot articulate it so clearly. Once a goal has been set, a period of time for a task marked off, the human instinct to complete the task is strong, and this motivation provides energy. Finding that there is no end in sight can drain this energy away. So it seemed for these caregivers as we visited with them.
“I haven’t seen my kids in three years”
For caregivers who were not caring for long-time spouses and therefore did not share children, one of the hardest part of caring was isolation from their own children and grandchildren. Two caregivers (Sandy and Bernice) were unable to visit their own children or grandchildren for years because of care for a mate in one case and a parent in the other.
Sandy had expected Ralph to die in the summer or fall of 1996, soon after they moved to Missoula. For two years, Sandy had put off leaving him to visit her three children in Colorado. As Ralph grew sicker, Sandy wouldn’t consider going even for a short period of time. Missing holidays and the children’s birthdays weighed on her, and she referred to it frequently in our conversations. In our first conversation, she said, “He knows I haven’t seen my kids for going on three years, you know.” Later, she amended that period to five years for some of her grandchildren:
Now my family, of course, they all live in Denver. And I’ve got, well, let’s see. I’ve got five grandsons down there that I haven’t seen for five years. It was Thanksgiving of ’92–so five years I haven’t seen ’em. One is going to be 16 the first of January. He’s my daughter’s oldest boy. I saw my daughter and her youngest one at my mother’s funeral. That was three years ago September. And my son and his wife were up here, when was that? It was either the summer of ’93 or ’94 that they were here. And the following year I went to see my son and his wife. And I haven’t been anywhere since. Because Ralph hasn’t been feeling up to me leaving since then, so. And my youngest daughter and her husband and kids were up here a year ago June.
Sandy was bothered most by the uncertainty of Ralph’s illness, which put her relationship with her children on hold while she faithfully cared for him.
What bothered Bernice about the seemingly endless task of taking care of her mother was the new granddaughter she had never seen, who was born in Minnesota after her son and daughter-in-law moved there from Missoula:
I’ve seen videos of this little girl, but I haven’t been able to visit them. She said in her letter that little Kayla is starting to choose her words to the point where she can sound real grown up. She was born in December, so she is about 8 months old.
Just before Thanksgiving 1997, Bernice was still hopeful that her son might be able to bring his family out for a visit, but that proved impossible. At Easter 1998, she mentioned again her sorrow that she had not been able to go to visit them. Lack of money and the daily demands of caring for her mother seemed to have defeated her hopes.
Most Difficult Symptoms
Each illness exacts its own price on a caregiver’s daily routine. For one, it was hygiene–struggling to keep her son clean as cancer spread everywhere on his skin, causing open sores and constant infections.
He had edema so bad he couldn’t even stand in the tub and do it. Sometimes it was very hard to just raise his arms…. So we had to do what we could as far as washing. And it ended up the last washing we could do was a saline solution. I’d mix it up, and then I’d take lap sponges. And he’d put his arms up, and I’d just run this salt water [over him]. He couldn’t stand the shower. There was no rubbing… .
My big concern was in the end how would he be able to be kept clean. And nobody was able to help me on that. Of course, his disease is not common. I was the one who had learned as I went along.
For another caregiver, the most difficult aspect was waking up every morning at 5:00 to help her sister struggle for breath.
It’s terrible, terrible. Her pattern now is she sleeps pretty well, but then she wakes up about five. She used to not wake up until eight or nine. But now she’s awake every morning at five, struggling to breathe. And so we go through all the things she can have to relieve breathing. So the time is shortening between rest for her and for me. We go back to bed, we go back to sleep after that.
For two caregivers, the “most difficult thing” was not physical symptoms but when the person they loved became depressed:
What was it like? Well, it was much harder when he was sick than it is now. Because we went through days when he had terrible depression, lots of tears, and that was the hardest. It was for six, eight months, and it just got worse and worse. And I think that was far harder. We went through stages where he threw things and went through an angry stage. After he was gone, it was relief. He was free, and life could go on. (Dorothy)
The worst thing in the world is this part where he’s suffering over something … and he does this to himself. It just agonizes me because I don’t know what to say to him. I don’t know what to do. It’s hard. (Sandy)
The end of life can be accompanied by a loss of mental abilities, resulting from symptoms of the illness as well as from the medications needed to control symptoms. Thus, “dementia”–including subtle or pronounced impairment in cognitive reasoning, short- or long-term memory, and judgment–is a frequent syndrome. Families find this symptom particularly distressing in someone they know better, and who knows them better, than anyone else:
I think Mom’s vacillating in her dementia was something that caught us off guard. I wasn’t prepared for that. Like the time we were having some work done on the house here, and she told the gentleman when he came to the door that the people that owned this house would have to make the decision. It was just the divorcing herself from the fact that she was living with us. It did come and go. That’s what caught us off guard. (Debbie)
Effects of a Prior Death: “I thought I’d get it right this time”
Connie was an emotionally strong, physically healthy, and intelligent woman who was close to her children and had many ties to friends in the community from years of working in the school system. Unlike some other caregivers in our study, she had as much support as she needed as she cared for her sister Sharon. Her description of her difficulties provides an in-depth glimpse, however, of the corrosive effect of a prior experience with dying that did not go well. Her emotional responses of guilt, anger, and sadness and her sense of feeling trapped were puzzling to her at first, when they came up in conversation, even though she confirmed our observation that everything was going well. Sharon’s needs and wishes were being respected; the sisters were open in their communication and close emotionally. If Connie was “doing everything right this time,” in her words, why wasn’t she feeling better about it?
The subtext of further conversations with Connie and Sharon provided insight into their feelings about this experience and about each other. Connie was torn by two desires in direct conflict: hope that her sister would live longer and hope that she would die soon. In tears, Connie reflected on her sister’s death in relation to her husband’s death:
[Crying] I’ve been thinking, I don’t want to wish for, for her death, but–I felt that way with my husband too–it’s the only way you have to get your life back, is when she’s gone, and yet you don’t want it to be. Hoping their life will be shorter so….
The significance of comments such as this became clearer as Connie began to describe her husband’s death four years earlier. He had suddenly chosen to speed his eventual dying by having his treatment stopped after seven years of home dialysis. He had not asked her advice or given her time to adjust: “What hit me was he chose to die.”
Connie described her anger at his choice to hasten his death and her guilt that her secret wishes for his death during those seven years may have led to his decision to stop treatment, so he would not burden her more. She had never processed or shared these emotions with him or anyone else at the time of his death, and they resurfaced as she cared for her dying sister.
After the foregoing conversation, in which Connie found herself crying suddenly and unexpectedly, she wrote to her other sister by e-mail about the conversation and her feelings. Connie subsequently shared her e-mail message with us, as a way of explaining her ambivalence and conflict:
Talking about caretaking for Sharon reminded me of [Connie’s husband]. Sometimes I have thought that maybe I am supposed to get it right this time, but I have the same despairs.
I get tired of the dependency, frequent calls or sirens, and the difficulty of getting out or even getting things done in the house. And feeling guilty here in front of the computer because I know she wants me in watching TV with her. Most of all I hate that the only way out for all of us is her death, and I don’t want to be in the position of wishing it would come.
Connie added a written note to us about her e-mail:
I really want to do this for Sharon and for all of us. It is very important to me to help her through the end of her life. Don’t think that I am bitter or hostile about it–it is my choice. It just has a downside, too.
Connie’s reactions to Sharon’s slow dying were an unpleasant rerun of her experience with her husband’s dying. Thus, in our first after-death interview, she said again, “I thought I was going to get it right this time.” “Getting it right” meant that this time her emotions would be appropriate, that she would be able to manage the conflicting demands of home caregiving better, that she would have time to say goodbye, and that she wouldn’t be overwhelmed by guilt afterward. A month after Sharon’s death, however, Connie was feeling guilty–especially for having openly wished that Sharon would die in October, when Sharon had rallied and seemed to be doing better.
Sharon seemed to be aware of Connie’s feelings. She mentioned to us in our first visit that she was “hanging on too long.” Sharon knew that her life at times was a burden to her sister and said her major concern was that “[my] caregivers won’t last”–that they will “burn out.” Sharon also said that Connie, not herself, should be the subject of our research. To find the will to remain alive, Sharon needed Connie’s reassurance that Connie also wanted her to live longer. Connie told us that she tried to provide this reassurance. For example, after they called hospice in, in June, and Sharon began making preparations for an immediate departure, Connie assured Sharon that her death wasn’t imminent, and Sharon relaxed for a while. The paradox of end-of-life care for someone who is dying at home is that it can demand that someone else give up his or her own life for a while, to help the dying person go on living.
Both sisters were conflicted in their love for each other and their own needs. What each needed–her own life–was thwarted by what the other needed from her: They lived in a far too common caregiver paradox:
· To go on living, Sharon needed Connie’s care and support, which Connie experienced at the loss of her own life.
· To go on living, Connie needed Sharon’s death: “It’s the only way you get to get your life back.”
To summarize this discussion of typical difficulties, what seemed most difficult for caregivers in this study was being asked to perform the equivalent of skilled nursing care and to be on call twenty-four hours a day, with only minimal training and the support of a weekly thirty-minute nurse visit, for an indefinite but often lengthy period of time. A hospice staff person, in a reflective moment, said:
Part of the good work that we do is to make it seem not as scary, but maybe we’re thinking that it isn’t as hard as it really, really is because we’re just more used to it.
The inner resources that caregivers brought to their task, beyond the support that they may have had from others, was a major source of their success. Some brought religious traditions of caring and comfort; some brought more personal family traditions that helped them see even the most difficult days as meaningful. Others had an attitude of accepting each day or prior experience to help them through the difficult times. In this section, we examine their inner resources.
Acceptance: “You don’t question the way the Lord works”
Sandy explained to us that she believed there was “some meaning” in all of this, although she didn’t know what it was. Her straightforward, unquestioning faith in the face of adversity and the unfairness of illness and death was unswerving. (Ralph became ill with emphysema the month he retired, and they had never been able to enjoy being together in his retirement.) Sandy summarized her faith in these words:
Yeah, I learned a long time ago that you don’t question the way the Lord works. You just don’t do that. You just go on your little way, and no questions. Because things are gonna be the way they’re gonna be. You change what you can change, and what you can’t, why….
All I hear now from him is, “I pray and I pray and I pray to let me die, and He won’t let me.” Well, I keep telling him, “You know, the day you were born, you were appointed a time to die.” And I said, “Well, until you live to that time, you’re not going to die.”
Each family has a particular ethos–a set of values by which actions of individual members are governed. Family caregiving is strengthened and guided by these unwritten and sometimes unspoken family values. Most family members probably could not readily state their unwritten rules that tell them what should be done. One of the families in our study, however, explained some of their hidden family history that helped shape their current actions.
Connie’s willingness to care for her sister Sharon certainly came from a lifetime of love and affection between them. In an offhand comment, however, Connie revealed that the two sisters had another connection that further strengthened her resolve and saw her through the tough times, even with the stress of caregiving for a second long period right after her husband’s death. The way she put it was simple:
My son is coming, will be here for week. You know, Sharon’s son gave my son a kidney. So we always like to get those two kidneys together.
Connie’s husband had lived for seven years with kidney failure on home dialysis, and one of their sons inherited his father’s kidney problem. Sharon’s son, who was about the same age, had been the donor who gave his cousin a new and better life several years earlier. Connie and Sharon’s children’s lives were now physically interwoven; through this gift of life, the disease that had killed Connie’s husband could no longer harm her son. Thus, gratitude toward Sharon’s family gave Connie extra energy in caring for Sharon at the end of her life and made this time even more meaningful for her. Sharon’s kidney donor son could not easily take his mother in because of his own living situation. Thus, Connie’s willingness to take Sharon in without resentment, despite her own stress, became more understandable as an act of gratitude to her nephew as well as an act of love for her sister.
Dorothy and her family also spoke of a strong moral vision, which involved a “day-to-day” life of cooperation and continued support–not just while the children were young but as they moved into adulthood. This inner family ethos provided the basis for the strong external family support system they constructed to help their father during his last year of life. Dorothy was clear that their beliefs came from a personal family tradition, passed down from her mother, rather than from an external authority:
The main thing was what you did day by day. That’s just the way we feel. And I think our children probably feel about the same. I still feel that a minister can do nothing for you except comfort you. And if you’ve done your life right, you comfort each other.
“One day at a time”
Sandy seems to have brought her own inner resources to caregiving. She spoke of having to take it “one day at a time.” Ralph worried about tomorrow, about whether he would be alive or not. Sandy’s response was to focus on today and make each day a good one:
We gotta take one day at a time, and then go to bed and go to sleep. And the next day we get up. If the next day is here, then we’ll deal with that day. Because I think that dealing with one day at a time is enough.
This attitude, as much as any other factor Sandy could identify, helped her cope with sixteen months of living in an apartment in Missoula, away from friends and family in their small community, struggling to help Ralph breathe.
Carrie also had a “one day at a time” attitude, drawing on the teachings of Alcoholics Anonymous, to get her through the many difficult days she faced:
Where we have been is living moment to moment. I think that we kind of realize that we really don’t have the power we always thought we had. A belief in a Higher Power can take an awful lot of burden.
“I knew from past experience”
Alone among the caregivers in our study, Dorothy had a long history of caring for terminally ill family members, including her mother and both of her husband’s parents:
I took care of Walt’s folks, his mother and father. They had a woman in there, and when it got too much for her, I would go up and stay for a couple of weeks…. And then if she called me in the middle of the night, and his mother needed to be changed and moved to another bed, I would drive up in the middle of the night and take care of her and then come back to Missoula. So we worked this out for quite a few years. Twenty years ago was when I started taking care of them. I had five [years] with his mother, and then his dad.
These years of caring for Walt’s parents, both of whom also died of congestive heart failure, gave Dorothy a wealth of practical knowledge about the disease and its symptoms, as well as a sense of competence and confidence about the difficult task of caring for her husband:
I knew from past experience with his mother that when they get quite terminal that their taste buds aren’t working right. Their bowels don’t always work right. The kidneys don’t work right…. When they’re unable to do things, then you know that they’re going down.
Dorothy had been with her mother as well as her husband’s parents as they were dying; she wasn’t frightened by dying and death. She understood the emotional ups and downs of the dying person, as well as their physical needs and their final readiness to go.
My mother was afraid up until the end. At the very end, I was with her till midnight in the hospital, and she looked at me and she said, “You go on home.” She said, “I’m ready to go. I’ve talked to all my family, and they’re waiting for me.” And before I got home, she was gone. She was ready. And I think people reach that point. Walt’s dad pulled all the tubes out of himself. They had him wrapped up with a straight jacket when he broke his hip. And he said, “I’m not living any longer.” He got out of the straight jacket, pulled all the tubes out, and that was it. So I think people reach that stage: “This is it.”
Sandy also had some experience caring for her own mother, also dying of emphysema three years earlier. She moved back home to the Midwest, but she found her step-father so resistant to calling in outside help that she could do little to make the situation better. After several months, she left her mother in his care and the care of her step-sister. In the months Sandy stayed with her mother, however, she came to understand what end-stage emphysema could be like and what kind of care is needed. When Ralph became ill, Sandy knew how difficult it would be for him and for her, yet she was determined to make his final days comfortable and meaningful. Knowing that Ralph’s last year was better than her mother’s had been provided Sandy with strength to continue and helped prevent her from feeling guilty when she finally could no longer care for him and transferred him to Hospice House.
The Caregiving Experience in the Subculture of Dying Persons
Families, especially the primary caregivers–as well as the dying person–found themselves participating in a new subculture. For some, the changes were subtle because home caregiving had been going on for a long time. For other caregivers, the terminal stages of illness brought marked changes.
Much of the tension experienced by family members providing end-of-life care arose from their dual membership: They still belonged fully to the culture of the living, but they also were living within a new subculture that surrounds those close to dying. Connie made the point most succinctly for us: “I’m living her life.” Without necessarily being conscious of doing so, family caregivers had to struggle to maintain control over their own lives and connection with their social networks and the life they had led (and would lead again). As a result, they faced issues involving their own economic security, comfort, and sometimes health. Meanwhile, they were helping a spouse, parent, or child deal with these same issues, in the context of impending death–joining with them in the psychological tasks of life closure and saying goodbye. Having to bridge two cultures and maintain a foot in both added to their stress. The data also point to the difficulty for some caregivers of having experienced the effects of this subculture for years because of a chronically ill, dependent parent, without any of the extra support, however minimal, reserved for those who are obviously dying.
This view of caregivers as being required to straddle two cultures helps clarify the underlying reasons for two different approaches taken by families. Some families, particularly primary caregivers, had the attitude that their home was an “open house.” They made us, as researchers–as well as their own friends and family–feel welcome, even as death drew very near. These caregivers also maintained some of their normal activities. Other homes were closed to most outsiders; outside activities and work stopped during this period, as the caregivers sacrificed their own needs and let go of connections to the culture of the living.
Caregivers whom we characterize as having an open house encouraged others from the majority culture to visit and to help with care. They appeared to be willing to let go of trying to control events; they neither avoided nor focused all their attention on the nearness of death. Letting others come to visit, to be part of the last months and weeks of someone’s life, correlated very closely with an openness and acceptance of death by the caregiver and patient, which should come as no surprise. “Last” visits are difficult for patient and visitor if there is no acknowledgment that this visit may be the last, that life is ending very soon rather than later. An explicit and openly communicated acknowledgment of the dual nature of their situation–of this “bicultural” position–seemed to help these caregivers.
The Need for Preparation and Knowledge
Our observations suggest that the major need of all caregivers entering the subculture that surrounds persons who are expected to die is simply knowledge–about what end-of-life care involves; about the degree of help they need; about what to expect as the illness progresses; about managing the balance between the patient’s needs and their own; about organizing medication schedules, respite care, and extra help; and about the process of dying itself. Caregivers such as Dorothy who came to their task with prior experience caring for others with a similar illness brought a schema that not only included relevant knowledge but prepared them for acquiring additional knowledge. Those who were confronted suddenly with this new world of end-of-life care at home had to learn a great deal of critical information and skills very quickly.
Even the most competent caregivers in this study had difficulty understanding procedures for an increasing number of medications. Other areas in which knowledge was lacking included signs that death was imminent and how to determine that death had actually arrived. Given that signs of impending death (i.e. that death is only a few days away) may be clear to medical professionals only in retrospect, it is difficult to know how much caregivers can learn in advance. In some cases, however–such as Carrie’s, for example–more information and preparation would have been welcomed; she needed someone to answer her questions during the last few days of Dennis’s life.
Recently, a new concept–“anticipatory guidance”–has emerged in studies of chronic illness in children. This concept refers to the entire process of providing the information families need when a child has a chronic illness or syndrome that requires long-term care (Battaglia and Carey 1999; Green 1999). Anticipatory guidance describes the process of providing information in advance about what the experience of caregiving for and experiencing the illness will be like, from the caregiver’s perspective rather than the health professional’s. Although receiving a list of medications and dosages to be administered daily certainly involves information, hearing from another caregiver’s experienced point of view what the daily schedule of administering those medications will be like and what that process will require of a family caregiver is different. This kind of knowledge and guidance, in anticipation of need and driven by changing needs and situations during the dying process, is what our caregivers wanted when they spoke of needing more “information.” Anticipatory guidance for family caregivers is an interactive process of information-sharing over time, driven by the amount of knowledge that individual caregivers already have and accessible at the time and in a format that meets caregivers’ needs.
Many patients and families clearly prefer family caregiving, but it is a complex, demanding, full-time job. Families need opportunities to learn enough to do this job well. One fruitful avenue for further investigation is what kinds of knowledge, along the lines of anticipatory guidance, are needed to prepare families to take on this job, and who should provide it. Hospice staff can provide much of this information, but they generally are available to assist a family only for a short period of time each week.
The Paradox of Caregivers’ Future Expectations
One assumption among persons seeking to improve end-of-life care is that caregivers who have the most support and provide peace and comfort to the person dying will emerge from this experience with a reasonable expectation that their own end of life can be similar: that they will be loved and cared for by family members during their own dying. The caregiving experiences we studied, however, did not always give caregivers the hope that the circle of giving would continue in the next generation of their family. For some participants in our study, the experience of caregiving led to very different expectations for themselves or did not change expectations that were based on earlier experiences. Five of the eight caregivers spoke of their expectations concerning their own life’s end; the other three had nothing to say.
· Two caregivers (Debbie and Sandy) reported that they had begun conversations with their families about their own expectations and needs in ten or twenty years. These two caregivers appeared to assume that their children will want and be willing to provide for their care–in a home setting if possible.
· One caregiver (Carrie) doesn’t expect her children to care for her and hopes to go into a hospital or institutional setting. Having taken care of her dying son at home for more than a year in accordance with his wishes, she now expects to start caring for her husband as his emphysema worsens.
· Two strong, competent caregivers (Dorothy and Connie) had long considered assisted suicide for themselves. Nothing about their recent caregiving experience had changed their views. Neither spoke of expecting that their own children/family will care for them. One talked of liking Jack Kevorkian. Her family plans to pay for nursing home care for mom “if she needs it” but did not speak of taking care of her themselves. The other has a DPOA and a living will, which appoint a friend to help her with suicide if she develops Alzheimer’s disease, so that her own children won’t be burdened. In her case, she fears the particularly debilitating effects of this disease more than she fears dying.
In this respect, research in Great Britain by Seale and Addington-Hall (1994) demonstrates that women in the last year of life were less likely to have people close to them who were emotionally dependent or invested in their existence–and thus were more likely to ask for euthanasia. Although both Dorothy and Connie appear to be years away from their own deaths, they may have been affected by the prospect of being without a caregiver such as themselves, rather than hopeful from their own direct experience of the value of the end of life. Ironically, Dorothy’s and Connie’s experiences as caregivers were among the best we observed. [173-213]