Support and Lack of Support for Family Caregivers All the passages below are taken from the book, “A Few Months to Live: Different Paths to Lifes End” by Jana Staton, Roger W. Shuy and Ira Byock. It was published in 2001. In chapter 7 we present the family caregivers 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 caregivers 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 Sharons 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: · Sharons 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 didnt 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. · Sharons daughter, who had moved to another town several hours away, came back for long weekends twice a month, allowing Connie a more extended break. · Connies 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, Connies 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 Sharons life, allowing Connie to go out or simply to relax at home without having to attend to Sharons 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 Sharons 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 Sharons 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 Sharons death. The system existed because she had created it, as Connies own comment documents: I decided some months ago that we just couldnt leave her alone anymore.... Thats 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 thats 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 Sharons 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. Bernices 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 Walts family provided the strongest example of caregiving that everyone planned for and participated in. Dorothys 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 Dorothys 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 familys closeness and cooperation during Walts illness came out of Dorothys mothers strong religious tradition. Dorothy explained how her faith came about and how it had become her familys 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. Thats 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 youve 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 familys 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 daughters 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 didnt 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 didnt know what to do but I just knew we could do it. Whatever we had to do, wed deal with it. If we needed to look at something else, wed look at something else. Debbie emphasized that it wouldnt 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. Debbies 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 wouldnt work if everybody else didnt pitch in. So they formed a family team: Debbie, Joe, and two others: their grandson and one of Debbies sisters. Debbies 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. Debbies 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 Robertas 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 wasnt 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 Robertas 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, wed 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 couldnt believe it when I found that apartment right there on the river. I told him, Now Ive found an apartment on the ground floor thats all set up for wheelchairs and handicapped people. And I said, Its right on the river. Its 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 Sandys caregiving far easier. The apartment complex had been built with federal housing funds to provide housing for disabled residents of Missoula, although the complexs 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 patients 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 caregivers 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 patients preference for a single caregiver available twenty-four hours a day, as well as from the caregivers 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 Denniss last year. She exemplifies caregivers who do it all by themselves. By the end of Denniss 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
Posted on: Sat, 02 Aug 2014 11:44:08 +0000
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