Support and Lack of Support for Family Caregivers 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.
In chapter 7 we present the family caregiver’s experience as she or he sought to assist a dying loved one. This chapter 8 answers a new set of questions: What kind of support and assistance from others–families, friends, or community–did these caregivers receive as someone in their family was dying in Missoula in 1997? How did this support come about? What additional help, if any, did they need? What kinds of strain resulted from lack of support? What if there was no one to provide the extra help needed?
Support from Others-Family, Friends, Community
Chapter 7 illustrates that extended caregiving at the end of life can be a stressful, intense experience no matter how much support is available or given. The caregivers in this study can be divided into two groups: those who had good support from others and those who had little or none. Researchers on caregiving across the life span have used the metaphor of a “good musical ensemble” to describe a support system for caregiving. First, according to Schulz and Rau (1985), “There must be some stability to achieve a high quality performance.” Schulz and Rau go on to describe a good support system as “consisting of different actors–friends, relatives, colleagues–each of whom has assigned functions and who together cover the full range of support needs” (145).
Some of the caregivers in this study clearly preferred not to divide responsibilities for end-of-life care, even if someone was available. Our observations and the available literature on home caregiving document, however, that a division of caregiving tasks does reduce the stress and burden to the primary caregiver and draws families together. When support is provided primarily by one person and other available family members do not contribute support, for whatever reason, tension is added to already difficult situations (Silverman and Huelsman 1990).
Table 8-1 illustrates the wide range of support available in our small sample of caregivers. Some primary caregivers had four or five people regularly available in any given week to provide respite care and help them, as well as hospice support. Others had no other family members providing such help but did have hospice, which could provide volunteers to relieve them for an afternoon. Some had little or no family support and no hospice support.
Orchestrating a System of Support
One caregiver’s situation illustrates how a well-orchestrated system of care can be put into place to provide assistance to the caregiver and respite care seven days a week. In caring for her sister, Connie had organized Sharon’s family to help out as well; she also had a great deal of support from nonfamily members, in contrast to some other caregivers.
Connie had an extensive network of family support:
· Sharon’s two sons each came for an afternoon once a week to stay with their mother, to relieve Connie.
· A second cousin in Missoula, who was not employed at the time, was available to come over on short notice whenever Connie needed to run errands or wanted go out with her friends for dinner. This cousin didn’t like to drive after dark, so as fall and winter approached he was less willing to come in the evening; he was available during the day, including weekends, whenever Connie needed him. This “on-call” assistance provided enormously helpful relief.
· Sharon’s daughter, who had moved to another town several hours away, came back for long weekends twice a month, allowing Connie a more extended break.
· Connie’s own daughter, who was very close to her, lived in Missoula and was available for emotional support. She took her mother out for lunch once a week during the last difficult months. When Sharon was dying, Connie’s daughter stayed with Connie during the last 48 hours.
In addition, Connie had substantial nonfamily support:
A hospice volunteer came for an entire afternoon each week during the last four months of Sharon’s life, allowing Connie to go out or simply to relax at home without having to attend to Sharon’s needs. This volunteer provided social companionship and a kind of “healing energy” therapy that Sharon found very helpful.
· The hospice “bath lady” came twice a week for Sharon’s bath.
· A Senior Companion from Missoula Aging Services-fortuitously, someone Sharon had once known and liked-visited weekly.
· Connie arranged to pay someone to do housecleaning once a week, to free her from concern about the house when Sharon’s care was “taking every waking thought.”
The additional family caregivers had to become as competent as Connie at giving Sharon her timed doses of medication to help her breathing. As Sharon found talking more and more difficult, they also learned to keep up a running conversation without requiring much response from her.
Characteristically, Connie had become proactive in arranging for more help, beginning more than six months before Sharon’s death. The system existed because she had created it, as Connie’s own comment documents:
I decided some months ago that we just couldn’t leave her alone anymore…. That’s when I talked to the kids and told them they need to give me some support time because I had to get out. I would have to get out for air, at least. And so that’s when they set up a regular schedule.
As welcome as this support was, it meant that Connie was scheduling twenty-three different appointments each week. After Sharon’s death, Connie summed up her experience:
I think we did about as well as we could. We had a lot of support.
In contrast, Bernice–who cared for her elderly mother who was totally dependent on her–made only minimal arrangements. She had no family support on a regular basis. Bernice’s sister visited from out of town for two days, three to four times a year; her son and daughter-in-law provided no regular help. Her nonfamily support consisted only of a weekly visit from hospice nurse-until hospice had to terminate service.
Family support: “You comfort each other”
Walt’s family provided the strongest example of caregiving that everyone planned for and participated in. Dorothy’s did day-by-day caregiving for twelve months and was supported by the four of their five children, who lived in or near Missoula. Dorothy summed it up:
The kids always have participated in everything in our family. No matter what goes on, all five of them know it. My daughter in D.C. calls me at least twice a week. Lots of phone calls. The kids have always called; they always drop in, we go out to lunch, we do things together.
Walt and Dorothy’s daughter who lived next door gave her mom a day “off” each week by staying with her dad; the two sons came several times a week and spent time with Walt, visiting and keeping him company. Until Walt could no longer get into the car, their older daughter took him for rides, especially in the nearby Bitterroot Valley where he had grown up:
I tried to come in several times a week and even oftener toward the end. And last winter to early spring, I started taking him on rides once a week. Our last ride was down the Bitterroot. Down to Hamilton to a funeral for one of his relatives. So he got to see a lot of his relatives that day. After that, there was no taking him out of the house anymore.
This family’s closeness and cooperation during Walt’s illness came out of Dorothy’s mother’s strong religious tradition. Dorothy explained how her faith came about and how it had become her family’s moral vision on a daily basis:
My mother was into church, and we were raised very religious. And even through all that, she always felt like church was not the main thing. It was what you did day by day. That’s just the way we feel. And I think our children probably feel about the same. My children went to Sunday School and to church. But 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.
A Family Team: “Everyone just pitches in”
Debbie also organized a great deal of supplementary support from her family when she brought her mother Roberta to live with her. What is striking about this family’s caregiving was the willingness of Debbie, clearly the primary caregiver, to share this responsibility with others-and the willingness of other members of her family to join in. During the six months Roberta lived in her daughter’s home, she could not be left alone; she required increasing attention and care as her heart failed. Unlike Walt and Dorothy, Debbie and her family had not made explicit preparations for this time, but she described how they quickly developed a flexible team system:
I didn’t know before Mom moved in that I would need so much help. I did not know. When we first entertained the idea of Mom coming in, I thought, “Wow!” I didn’t know what to do but I just knew we could do it. Whatever we had to do, we’d deal with it. If we needed to look at something else, we’d look at something else.
Debbie emphasized that “it wouldn’t have been possible without Joe” (her husband). When Roberta began failing visibly at the nursing home in the spring and they decided to move her into their home, Joe quit his beloved summer job working outdoors at a local golf course so that he could be around during the day while Debbie was at work. She explained:
Joe has just been really wonderful with this whole thing. I tried to encourage him to continue working because we were going to hire someone to stay with Mom, until I could do it. But he felt that we needed the support, and I do need support.
Debbie and Joe understood that Debbie would worry too much about her mother if she had to leave her at home without a family member there while she was at work and that her mother was going to be difficult with anyone else, unless someone in the family who knew her was home as well. Debbie’s grandson summed it up accurately: “[Roberta] gets fussy [and] really does like to cause a hard time, with the nurse, the bath lady.” Debbie spoke about how making this kind of caregiving work “takes a family”:
It does take more than me; it takes a family. It wouldn’t work if everybody else didn’t pitch in.
So they formed a family team: Debbie, Joe, and two others: their grandson and one of Debbie’s sisters. Debbie’s grandson, who was nineteen years old, was already living with them while he attended college. He also became a companion for Roberta when he was home, sometimes fixing her breakfast and talking with her when others were not around. Debbie’s younger sister, who lived in another Montana city five hours away, came over regularly to stay for the weekend; she was the one person Debbie and Joe would allow to take over Roberta’s care for an extended time, so that they could both leave. Debbie put it this way:
The support that 1 appreciated so greatly was my sister coming over and giving me a time to get away comfortably. If I were even going to go to the stores or somewhere or go with my husband, knowing that Mom was fine with this. She wasn’t fine with everybody. To get away and know that she was comfortable, I felt great support in this. I recommend highly that people have various people come in and help.
In addition, Debbie arranged and paid for a private home health aide to come in five days a week while she was at work, even though Joe was now also at home. Debbie continued to have this aide come during the summer, even while she was on vacation and home full-time, so that she could have the same person beginning in the fall, when she went back to work in the public schools. This home health aide, who was a stranger in May, soon became part of the family and stayed with Roberta until her death; she spent Roberta’s last day and evening there as part of the family.
Debbie described her approach as very open and flexible: “If we needed to look at something else, we’d look at something else.” This flexibility helped make their home an “open house,” where visitors–even strangers doing research on end-of-life care–felt welcome.
Making Use of the System
Sandy was one of the caregivers who had no regular weekly assistance from friends or family–mostly because she and Ralph had “moved in town” from a rural part of Montana 100 miles away to get hospice care. Sandy made more extensive and intentional use of hospice services than some other caregivers; she used hospice volunteers extensively and even the two MDP researchers to get extra assistance and respite.
The other great resource supporting Sandy in her caregiving was the apartment she found. It stood on the banks of the Clark Fork, close to a grocery store, with a view of the cottonwoods along the river, the Missoula valley, and the mountains to the west.
I couldn’t believe it when I found that apartment right there on the river. I told him, “Now I’ve found an apartment on the ground floor that’s all set up for wheelchairs and handicapped people.” And I said, “It’s right on the river. It’s going to be pretty nice.”
Being forced to move from their home to a strange city, to find care for what turned out to be a long, slow dying process (sixteen months), could have been a terrible experience. Instead, their apartment, with a wheelchair-accessible bathroom, easy access to a walk along the river, and the beautiful picture windows in the front room and the bedroom, brought them joy every day and made Sandy’s caregiving far easier.
The apartment complex had been built with federal housing funds to provide housing for disabled residents of Missoula, although the complex’s planners probably did not envision end-of-life needs when they planned the complex. Its design and accessibility were central to the relative lack of stress we observed in the end-of-life care Sandy provided. The apartment reduced–to a degree–her need for assistance and support. What would have been a very difficult experience for Sandy and Ralph, because of the lack of family members or community links, became instead a time of sharing and moments of joy.
Our conclusion is that even with hospice services, and with family and friends to help, caregiving for someone who is dying is likely to be stressful and difficult for a primary home caregiver. Good palliative care may inadvertently exacerbate caregiver stress by prolonging life beyond what was expected or predicted. What a caregiver expects to be an all-out, intense effort for three to six months can turn into more than a year of all-consuming care. And when either hospice services or other family are not available to help, the difficulties of providing care and the resulting stress were correspondingly greater. Some of the caregivers had neither other family members nor hospice to support them at critical times.
Lack of Support for Caregivers: Causes and Consequences
Along with the record of substantial help from family, friends, and professional caregivers, there were several caregiving situations that lacked support from family, the kind of palliative care hospice provides, or both.
Caregiving at home for terminally ill persons can be thought of as a three-legged stool: To remain stable, caregiving requires a strong and competent primary caregiver, additional assistance from family members and friends, and adequate palliative care. The caregivers described in the preceding section–Dorothy, Sandy, Connie, Debbie–had orchestrated this support from family, friends, and community resources. Other caregivers either chose to have little assistance or through circumstances had little or none available. For some, family members and friends were potentially available, but no “family team” had ever formed. For others, using hospice services conflicted with the patient’s personal struggle for a return to health, or at least remission. The caregivers’ situations described in this section illustrate the complex interaction of individual attitudes and expectations, the caregiver’s relationship with the dying person, and external circumstances.
Interaction of Patient Preferences and Caregiver Sacrifices
This section describes the experiences of caregivers who seemed to have less support than they needed. The existence of support was related in part to roles that the caregivers took on for themselves, which seemed to fall along a continuum of sacrifice and self-preservation. Some sacrificed their own lives entirely to provide care at the end of life; others (described in the preceding section) were “self-preservers” who obtained extra help and assistance, thereby ensuring that their own life and health would be maintained during this difficult time. Two of the caregivers we discuss in this section, Carrie and Bernice, seemed willing to be sacrificers for the sake of the person who was dying. Two others, Karen and Dan, fall somewhere between in attitude: managing to preserve some of their own life but doing so without asking for more help (see Figure 8-1).
In the cases of Carrie and Bernice, lack of support appeared to come from the patient’s preference for a single caregiver available twenty-four hours a day, as well as from the caregiver’s willingness–or even need–to provide that care personally, refusing other help.
“Doing it all myself”
Carrie was required to give intense and demanding care for almost a year, and she was the caregiver who had the least outside help or support. She had neither hospice nor regular family assistance for most of Dennis’s last year. She exemplifies caregivers who “do it all” by themselves. By the end of Dennis’s illness, Carrie seemed worn out physically as well as emotionally. A month after Dennis died, Carrie admitted how difficult it was for her with no professional or personal support at the end:
Figure 8-1 Continuum of Self-Preservation and Sacrifice
It was so hard on me. The third time they upped the Fentanyl, the nurses in the chemo over there, and the doctor tried to talk him into going into the hospital. And he said “No.” And I was on their side, trying to ease this to him. He refused. I wanted to say, “Who do you think is the one that suffers through this? You’re out of it.” It was the first time I ever wanted to say, “Me, me. I need something.”
In addition to providing twenty-four-hour care for Dennis, Carrie was the only one close to her mother, who was more than ninety years old and living in a nursing home 100 miles away. Whenever Carrie had a break-generally when her daughter could come from long distance to stay-she would drive to see her mother for a day. In August, as Dennis approached the end of his life, Carrie’s mother broke her hip, and Carrie spent extra days with her.
Because Dennis’s home was in a rural area of Montana, an hour’s drive from Missoula, the location certainly reduced the choices of services available to him and to his mother. According to Carrie’s account, however, her lack of assistance appeared to be related as much to his preference for her care over anyone else’s and his total refusal to go to a hospital as to their rural isolation. Carrie had become so expert at taking care of her son that he preferred her to anyone else–even other family members:
He would say to me, “Oh, you are so gentle when you put on the Vaseline.” He said [his sister] just rubbed, the nurses rubbed. He says, “I feel like a big baby.”
Carrie was aware of her need for extra help but described her own frustration in finding the kind of help she needed in their setting:
The social worker constantly made her token visits. She’d say, “What can I do for you?” every time. And I got so I had enough to do to be innovative for myself without having to tell somebody, today we’re doing it this way. It was doubling my load to have these people. I was training them. I finally told her, “When you go out and find another Carrie–better yet, two Carries–then you come back, and. you will have done exactly what I need. Otherwise, stay away from me.”
Carrie found the task of explaining the care her son needed and “training” home health care nurses too draining on her:
I realized how impossible it was for anyone to help me because they had to be taught. This was trial and error and innovation. And they marveled at what things we came up with. I think you’d have to be with somebody as much as I was.
The only nurse from their local home health service who was really “good,” from Carrie’s perspective, took an administrative job with the service, and her replacements came in on an inconsistent, rotating basis. By the time we started visiting, they did not appear to have any extra nursing care, even on a weekly basis; they were relying solely on the outpatient visits to Dennis’s doctor for medical care, with Carrie doing the rest herself. Later in Dennis’s illness, he received IV therapy at home from a different home health care provider. They apparently never pursued any assistance that hospice could provide, however. Carrie said only this:
Hospice care was brought up, and there was some reason why it wouldn’t work out. It was because of the changeability of the schedule. Night or day meant nothing to us.
This difficulty connecting with hospice probably reflects Dennis’s desire to fight for every extra day of life and to pursue the chemotherapy that provided some extra months of life, even at great physical cost. When chemotherapy could no longer help, his reluctance to accept palliative care continued.
“I got some days where I tell Mom I just absolutely can’t stand it anymore.”
Bernice represents another example of the stress placed on family caregivers when they have no support or relief available during a protracted terminal illness. The almost complete absence of daily/weekly support for Bernice in caring for her mother was distressing to observe, even for researchers making brief visits.
Bernice’s daily schedule was controlled by her mother’s needs. Besides the major medical tasks, Mabel made constant “little” complaints and was seldom comfortable: She was too cold, she was unable to sit comfortably, nothing tasted good anymore, and so forth. Mabel’s pain patch schedule punctuated their lives. Mabel also was on oral medications, particularly to control less severe pain. She often was uncomfortable taking them or refused them outright because they upset her stomach. Bernice had to work continually to keep her mother comfortable.
Bernice’s description of her experience in brief, matter-of-fact statements reflected her own “day-to-day” approach–characterized by sheer endurance, with little planning or reflection. During the times when Mabel was in pain and more uncomfortable, Bernice was even more depressed in appearance and behavior. As she put it: “When she goes down, it puts me in a bind.”
Bernice and Mabel did not have strong social networks within their family or within the community when Mabel’s serious illness came. Although Bernice had one son who lived with his family on the outskirts of Missoula and another son and daughter-in-law who had lived in Missoula until recently, neither of them participated in any regular care for Mabel or assistance to Bernice. Their one means of involvement seemed to be visiting occasionally on Sundays:
They both work. And they’re pretty active with the kids after work. I mean, they’re into everything and church and they were coach and assistant coach for the Little League ball teams. But they remember birthdays and Mother’s Day and Christmas and Thanksgiving.
Similarly, Mabel’s other daughter, who lived two hours away in northern Idaho, visited every few months, staying for a couple of days. Bernice and Mabel regarded these visits as purely social and something of a burden, rather than for the purpose of helping Bernice in any way:
Bernice: On top of everything, my sister and niece are coming over today. They have to leave Saturday (after that visit).
Mabel: Yeah, my daughter came over for awhile. But they don’t stay only about three days, and back they go.
The family visits, especially from Bernice’s two little grandchildren–Mabel’s great-grandchildren–were the most joyous moments in these women’s lives. But they did not relieve Bernice’s unrelenting caregiving responsibilities. Some of her tasks, such as getting her mother transferred from her wheelchair into a car and out again (to go to doctor’s appointments or to Wal-Mart for new reading glasses), seemed beyond Bernice’s own physical strength and enormously stressful for her and Mabel:
It’s a big effort to get her to the doctor, and the car the way it is…. Mom and I used to go down [to see Bernice’s children] when I was working, but since Mom’s got this bad cancer, no. The way my knees are, that fibromyalgia, in my knees and just pushing her up and down in the wheelchair aggravates the knees, and the stress, that makes it worse.
Bernice could identify no regular social activities or interests to meet her own physical, emotional, or social needs, and her mother apparently had few in her own life:
Bernice: Well, Mom, she’s always been, uh, she doesn’t socialize much. And after my divorce, moving in here to Missoula, well, I got to working, and I’d come home tired, and I just really didn’t make any friends of my own, either.
Researcher: I wondered what kind of social life she’s been able to keep. You don’t have a club or church or any kind of group that you were part of?
The lack of support or assistance for this family from community resources was puzzling at first, particularly because they had chosen hospice care early and therefore had access to volunteers and other services. As we listened carefully to Bernice’s explanations for why getting help was so difficult, we began to understand.
Researcher: You said you hadn’t had much luck getting a hospice volunteer to come in yet?
Bernice: Oh no. I started with them, but Mum, she didn’t like anybody coming in. And with her losing so much control of her life, I backed off, even though it would’ve made me feel better. And well, I also told the volunteer that I really don’t want to take advantage of them, and I don’t want to make myself feel that I’m taking advantage of another person. I told the volunteer that when I absolutely had to have her, so there is an appointment that I had this week, last week, that I had to meet. So I called the nurse up and asked if D____ was still my volunteer, and she says yeah; so I called D____ up and talked, and got the recording machine. And here without me knowing it, D____ had quit volunteering through the summer. Well, I told my hospice nurse what had happened, that I would like to have a volunteer to come in and let Mum get used to her.
The hospice nurse later confirmed to us that hospice had tried for months to get volunteer help for Bernice and Mabel but had been defeated each time by the combination of Mabel’s refusal to let anyone else besides Bernice help and Bernice’s depression and inability to ask for help for herself. Over the next six months of visits and phone calls, Bernice continued to talk about plans to get a volunteer in; but as far as we know, that never happened.
Bernice gave evidence of being without any hope for herself. She had lost her job and was put on disability because of stress. This loss of work–and the loss of identity in the community that work provided–coincided with her mother’s increasing debility. Bernice complained that keeping their small apartment clean was hard because her time was taken up with caring for her mother and, even more important, because she lacked the energy to do it.
There’s sometimes where I’ll go in and lay down too. Those are days where, I mean, I got some days where I tell Mom I just absolutely can’t stand it anymore. I’ve got to go lay down. And then she’ll go lay down. To clean house, it’s kind of hit and miss, just do it when you can. Then there’s times where, the mood I’m in, I just sit and look at it. I mean, I could care less!
Later in the fall, when Mabel’s pain from bursitis and her unexplained neck pains had subsided a bit, Bernice mentioned her relief and described how difficult it had been for her “just sitting here watching her in pain.” Our field notes capture the difficulties we observed in this home:
Bernice shows signs of chronic depression/high anxiety. She complains of not sleeping well, has many small aches and pains, no energy for daily tasks, and few daily pleasures. She reports rising relatively late in the morning, another sign of not sleeping well. Her voice is flat and without emotion; she frequently looks close to tears. There are two bright spots in Bernice’s life–“hospice hugs” from the nurse who comes once a week, and the daily TV soap opera “General Hospital” at 1:00. Bernice is addicted to the soaps again, and isn’t too pleased about this, but it is the one “bright spot” in her day [field notes, July 25, 1997].
Mabel’s health and needs remained relatively stable during the period of our study, and hospice finally stopped providing care, although there was no change in the terminal diagnosis. This development left Bernice with only a monthly visit from a nurse to check medications and required Bernice to take her mother, wheelchair bound, to her physician for any medical care.
“I didn’t realize the stress it puts on the caretaker’s family”
Karen’s experience with her mother Sarah illustrates the difficulties of managing end-of-life care for someone with a terminal illness even when the person isn’t living at home. In Karen’s case, the ongoing demands on her time and energy for many years, growing financial strains, and lack of active support from her two siblings combined to make her feel overwhelmed, even though she was not providing daily care during our study. Again, Karen fit the profile of the chosen caregiver: She was not currently working, she lived in close proximity, and she was not as burdened with other caregiving. Karen’s younger sister, who also lived in Missoula, was employed outside the home and still had minor children to care for.
Karen began actively caring for her mother ten years prior to when we met them, with the first diagnosis of breast metastases. Karen has remained her mother’s “case manager” during Sarah’s advancing bone cancer. In the year they participated in our study, Karen helped her mother move from a senior residence to Karen’s home, then to Hospice House for four months, then–after her cancer appeared to be growing slowly–to a small board and care home.
During the brief time Sarah lived with Karen (after she could no longer stay at the senior residence), Karen described becoming even more distraught:
I was to a point where I was ready to just drop. Because she was up all night, just climbing walls and everything. When she went to Hospice House, it took me two weeks to get so I could start sleeping at night again.
The stress and difficulties for Karen and her own family were compounded because she had to manage her mother’s care at a distance and pay the extra medical and care bills. Keeping her mother in her small home in a rural valley outside Missoula proved impossible. Moving her mother home would have been only temporary in any case because Karen and her husband, now retired, planned to sell their home and travel south during the winter:
You know, I don’t have a room for her. So I was scared to death to bring her home [from Hospice House]. I could’ve just brought her home until I found another place, but I thought, if I bring her home she’s not gonna want to leave here. And I can’t do that. I’ve pushed my family back for 9 years now, and I’ve gotta start, I’ve gotta get back with them.
My husband is about ready to divorce me [laughs]. It’s been hard. He’s been great, but we’re going on 11 years now since I moved back and started taking care of Mom. He’s been retired for 6 years now, and he had bought our fifth-wheeler and worked like the devil to get it paid off so when he retired we could go have some fun. And we haven’t gotten to yet. Every time we plan something, Mom gets bad. It’s almost funny.
Even though Sarah lived independently or in a senior residence for eleven years rather than with Karen, Karen described continual responsibilities to see that her mother received appropriate personal and medical care, except during the time Sarah lived at Hospice House. She also visited her mother almost every day, driving twenty-five miles round-trip each time:
It’s just been steady appointments, by the time I get her eyes checked, her teeth cleaned, her toenails clipped. It’s just something steady. The biggest problem that I ran into is that Mom isn’t bad enough to be in a nursing home, and yet she needs help with some things. The home health service is coming out and helping her with her shower. And, boy, that was a relief because I knew she was okay with it–with me helping her–but I could tell it was kind of embarrassing for her. She has no problems with them.
Karen also had to manage her mother’s numerous daily medications. She “fixed boxes” of medications weekly, and the board and care home put them out for Sarah in a little cup at her plate at each meal. The difficulties of managing Sarah’s life and her own led to situations that illustrated the difficulty Karen had in meeting her own needs while taking care of her mother:
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.
As in some other families, Karen could find no bright line separating the care she gave her mother for the preceding decade from the care she provided to her mother in her last, terminal illness. The length of time that Karen’s own life was put on hold made this last period much more difficult for her.
“I’m a person that stays to myself”
In addition to direct help in caring for someone who is dying, caregivers need social and emotional support from colleagues and friends. Barbara’s husband Dan faced two kinds of loss: the impending loss of his life partner and the loss of his work identity because he had to quit his job to take care of her during her lengthy illness. Being unemployed for a sizable period of time–particularly for a healthy, able person–creates significant stress. In losing his job, Dan also lost his work identity and social connections to others. He always had been a loner; the loss of work left him more socially isolated, as he explained to us:
Dan: I got friends, but I’m picky and choosy. I got one, two friends.
Researcher: Are they helpful to you?
Dan: Yeah, well, one friend is bugging me. They’re always asking how things are going and always there to talk to me about how it is. I’m a person that stays to myself. And like I’ve said, I’ve only got two other friends. Barbara’s my best friend.
Barbara’s concern for her husband was that there was no social or emotional support for him as he dealt with her terminal diagnosis and the daily effort to provide her with food, comfort, and care. She was far more concerned about the lack of support she perceived for him than he appeared to be, when we talked with him separately. She became very emotional as she spoke of the difficulties they faced as a couple and the isolation her husband experienced:
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. They need help…. It’s very painful emotionally-for the couple, the family… .
I just am a firm believer that he’s got to find some way to air what he feels or what his experience has been. We went to a caregiver support group, and he was very apprehensive. “Are there going to be a lot of people? Do I have to say something?” I almost had to grab him by the hand and drag him in there. I told him that I felt like it was very necessary for him.
This support group–the only one meeting in Missoula at the time–had no one in it even close to matching her husband’s situation. Dan also described their one visit:
Dan: You know, we went to a support group; it meets on Tuesdays, I think, and we went in there. I was the only guy. And there wasn’t any men in there. I mentioned in there that my perspective is gonna be different from a woman’s side. I felt very uncomfortable. Barbara was with me. Good thing she went with me because I don’t think I could have sat there.
Researcher: So, would you like to be involved with a group of people like yourself who are men, who are husbands of patients who are terminal?
Dan: So, yeah, I would be interested in something like that!
Barbara agreed with Dan’s description of their visit:
Well, we got there, and it was all women … two facilitators and six older women who were taking care of elderly parents, or a spouse that might have Alzheimer’s or some other condition. So he felt like he couldn’t relate to all women, and none of them named something that was familiar to him. They were very nice ladies, but at the same time, Dan told them, “I just need to see more men that might understand how I feel, or I won’t come back.”
Throughout the period when we visited Barbara, she continued to search for social and emotional support for her husband and children as well as for herself, but she could never find the help she perceived they needed.
Dan and Barbara’s emotional dependence on each other apparently was so great that when they both needed help from others, it was difficult for others to break into their relationship. This situation may not be uncommon in couples facing physical illness and impending death. The cohesiveness that holds a couple together can prevent them from being flexible enough to adapt to changing circumstances–especially allowing others to help them both.
In chapter 5 we described the financial picture of the study participants and discusses how their finances affected and were affected by terminal illness. We now examine the financial picture from the perspective of caregivers, to make clearer the interrelatedness of support, planning, and financial concerns or problems.
Three of the eight primary caregivers had little assistance with direct caregiving from other family members and were still actively employed when illness came. This lack of available family support, combined with the demands of end-of-life care, had direct effects on the primary caregivers’ employment situations and financial resources. Again, the snapshots of two of these caregivers, in their own words, illustrate the systemic, interdependent factors that affect end-of-life care.
“This is my job, because I don’t have a job”
Barbara’s husband Dan exemplified the extreme stress placed on a family when a wife and mother faces an untimely death and the family becomes more and more isolated during an illness that extends across years. Barbara’s family was a younger, nuclear family with a husband and two children from a previous marriage still living in the home. Her illness and death interrupted the normal family life cycle, in which parents are able to raise and launch their children into adulthood, socially and financially, before dying.
Some patients and families begin their journey with many connections to community–school, work, clubs, churches–which can be sustaining even over a long period of illness. This family, however, had few connections in Missoula, outside of Barbara’s work colleagues. Dan and Barbara had moved to Missoula in the early 1990s, shortly before she was diagnosed with cancer. Her six-year illness and her husband’s decision to give up his job to provide care for her through several serious episodes further isolated them.
There is likely to be an impact for family finances when the terminally ill person is still needed to ensure the family’s survival, either as breadwinner or as the family organizer and manager. So it was in Barbara’s family. Barbara was accustomed to being the one in her family who was responsible for managing family finances, as well as working full-time to provide income. Her illness and incapacity to fill these essential roles created a void that no one else in the family could completely fill.
Barbara’s family differed markedly from other families in the study with regard to the timing of death in the family life cycle and the family role played by the person who was dying. A young family’s loss of a parent is likely to place greater stress on the family system because there will be no time to adjust to the changes.
Dan saw caregiving as his full-time “job,” particularly because the demands of his wife’s illness had caused him to give up full-time work:
You know, I don’t have a job. I’m just staying home and taking care of Barbara, when she is sick. And this is my job, because I don’t have a job. This kind of keeps me busy.
I’ve been doing this already for six, seven years. You know, sometimes it’s hard to get her to eat, a lot of time it is. With these treatments it’s hard to find the right things that she is gonna eat, even after six years.
As Dan made caregiving into his work, he found that he resented the help offered by Barbara’s teenage children-his stepchildren:
You know, they try to help, but that’s not what I’m looking for. I don’t want help that way. This is my job. Like yard work, I don’t want him doing yard work. That’s my job.
“I don’t know what I’m gonna do”
A significant part of Karen’s continuing stress comes from her worries about how to pay for her mother’s care. Karen describes how her mother had limited finances–Social Security, Medicare, and a small Medigap–that no longer covered the costs of Sarah’s care after she left Hospice House:
I’m getting a little panicky. I don’t know what I’m gonna do. Her cancer benefits just ran out, and she isn’t able to get any more till August [this in March]. We’re paying for her medicines, plus the 200 she’s short on the rent. We haven’t told Mom. I’m just debating. Every day I sit and I keep trying to figure out what I’m gonna do. I’m about out of my money that I’ve been using.
Apparently, insurance benefits for medication might have been available once but no longer were, so the financial stresses were even greater as Karen struggled to pay for required medication plus the extra costs of the board and care home where her mother moved after she left Hospice House.
Those benefits have run out for the medicine and her insurance. That’s a long story, but they messed her up on that, and she has no coverage on medicine.
Karen, in her early sixties and with a husband who had retired, found that the constant demands of caring for her mother prevented her from working. Of course, this situation only increased the financial stress on her.
I thought about going back to work, but with all the appointments nobody’s gonna let you take off every day. It amazes me; I don’t know how some of these people do it that are still working and running their folks. I’d think a lot of them would just have to quit their jobs.
Karen’s situation probably is typical of many families. Where the nature of family relationships is such that one caregiver is chosen and others do not participate, the consequence can be that the primary caregiver eventually will sacrifice work opportunities and income to continue to provide care.
When There Is No Family: Orphans
“We knew we were Kitty’s family”
Kitty represents terminally ill persons in Missoula who are effectively “orphans”–with no living family members to provide any care. Kitty had lived independently as a single professional in Missoula for almost fifty years. She had cared for her mother in her home and then lived in Missoula into her eightieth year with no husband or children, no nieces or nephews. Her church became her family, and members of the congregation tried to provide enough support that she could remain at home until she died, as she wished. Kitty’s story is particularly instructive as an example of how difficult home care really is and how much primary nonfamily caregivers may have to do to make it work.
The experience of Kitty’s church in trying to help her stay at home by providing daily visitations and other kinds of help is a paradox: The longer they were able to meet her wishes and help continue to live alone in her own home, the more conflict they felt about whether this approach was the right choice. One church member said:
[One of Kitty’s friends] saw us as neglecting her because Kitty had diarrhea, for years, and it was uncontrollable. She hid it very well, but her friend picked up on this, and told other people that Kitty wasn’t being taken care of.
In fact, the people who were caring for Kitty weren’t sure they were doing “the right thing” by helping her avoid the inevitable move to Hospice House for six months. Kitty’s priest described how the church got involved in helping her stay at home:
At that point [last spring], her doctor had talked her into going to Hospice. She was in the hospital, ready to go to Hospice. She was ready to go because I think she was afraid she couldn’t take care of herself anymore. Then she got a burst of energy that morning and said, “I’m not going.” And so her doctor and I got on the phone. “What should we do?”
So we said to her, “Somebody’s got to see you every day.” And she agreed to let Home Health do that. And I thought for weeks that was happening. It wasn’t. So then I called four parishioners–two of them nurses. And they would try to visit her each once a week. And then the assistant priest would call her five days out of the week to make sure. And we just started. As things turned up, we started plugging it in.
Kitty’s priorities were to stay in her own home and to have her dog and two cats with her. Apparently she sometimes believed that she could take them to Hospice House, although at other times she appeared to understand that they could not go. Staying in her own home was of paramount importance not only for Kitty but for her pets’ sake as well–which may have strengthened her resolve even more. So for six months, Kitty’s church sent in visitors during the week, made daily phone calls, had lay ministers visit on Sunday with communion and flowers from the altar, and stayed in contact with Hospice staff and Kitty’s doctor. When Kitty developed a serious foot infection in October–another sign that her body was failing–friends from church drove her each morning for two weeks to her physician’s office for IV antibiotic treatment.
The commitment by Kitty’s church family to honoring her preferences was impressive. But in our conversations with those involved, Kitty’s caregivers warned against thinking of their effort as a “model” for other churches-or even for the many other elderly parishioners in their church. The priest spoke of the intensive effort he had to make to set up and monitor the system, which fell to him to do:
How do we make this work? Well, that’s a tough one. That’s really the tough one–how much time do I have to put it together? We know this is our next need. We’ve got a body of people here who are about to hit that age. And we’re gonna choke on them. I can’t do it all. So we just don’t do it… .
If we had ten Kittys, we couldn’t do it. We’d have to re-create a social work staff here. We simply can’t. I think if you were to go around town you’d find that most every church, if they’ll tell you honestly, feel understaffed. At least the clergy do. They don’t have the folks to do that.
Unmet Caregiver Needs in the Subculture of Dying Persons
Among the group of caregivers we studied, several unmet needs were common, regardless of the amount of support. These unmet needs related to comfort and mobility: adequate respite care, better transportation assistance, and housekeeping assistance.
Respite from Twenty-four-Hour Care
Having someone who can be trusted to come in and take over caregiving for even a few hours is a rarity. The level of care required at the end of life means that only a trained volunteer or a family member who has been provided with some hands-on coaching can stay with the patient. Having respite care available is essential for lengthy terminal illnesses. Meeting this need is not always a straightforward matter, however, even setting aside considerations of cost. As Bernice and Mabel’s situation illustrates, some patients will not accept hospice volunteers. Adult day care settings require the patient to leave home, which generally is not an option as life draws to an end. Some patients are reluctant to have other family members come in, even if they are available.
Caregivers in this study needed help with transportation as patients–wheelchair bound and tethered to oxygen–became more difficult to get into and out of regular cars. Even a short ride to a family gathering or for a necessary doctor’s appointment was difficult. None of these caregivers knew if any transportation assistance was available to them, other than ambulances for emergency transportation.
One of the first difficulties with full-time, twenty-four-hour caregiving is that keeping a clean, orderly house becomes more essential–and much more difficult. Before the period of full-time caregiving, the person who is now ill or the primary caregiver would have handled these chores; now neither can do the housekeeping well.
When we asked Carrie what she most wanted, she answered:
I’d like to have somebody who could come and go, with their own key, who could come at their own hours, to just know what needs to be done. I said the next one through that door is gonna have their work clothes on, and I’m going to put my feet up and say, “There’s the kitchen.”
Connie admitted that as caregiving demands grew, she finally decided to hire a housekeeper at her own expense:
You know, I’m seventy. Another thing I’ve done for myself is I’ve arranged for somebody to come in and clean the house once a week.
Recently there has been a movement at some political levels to look toward churches to become the new social agents of care for welfare families, unwed mothers, and elderly persons. The one clergyperson we spoke with, who had helped orchestrate the system of care for Kitty, was emphatic in his refusal to regard the church as the answer to the unmet needs of dying persons and their caregivers, particularly given the numbers of elderly people in our society in the next few decades.
We end this chapter by reemphasizing that a complete, orchestrated system of caring is required to support family caregivers and preserve opportunities for them to experience this time as having meaning and value. A break in any link of this chain can ruin the chances for caregiving to be more than a burdensome, stressful obligation. Participants who subjectively and objectively succeeded at caregiving had the strongest, most complete chain of comfort and support available to them throughout the period of our study. [215-238]