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Daily Life and Meaningful Activities at End of Life
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 commonly think of dying patients as pale, bedridden, passive, and silent. Equally commonly, we describe terminally ill persons only from the perspective of their medical condition. Although the medical perspective is important, observing and understanding a person's everyday activities and routines as a significant part of their existence also is important. Equally important, we should consider the fact that some aspects of life remain enjoyable and meaningful for these persons. We were curious and a little apprehensive about visiting people who were terminally ill because we had only hospital experiences to fall back on. We had much to learn about the last months, weeks, and days of persons with terminal illnesses.
Seale (1998)--a sociologist who studies the meaning of death in modern culture--has argued persuasively that because human life is "embodied," the daily activities involving the body are essential for remaining human. People who are dying fear a "falling out of culture"--spiraling down into an isolated, inhuman existence while they are still alive. These fears are well-founded: Chronic illness and dying directly disrupt the life of the body--particularly the customary routines of grooming and personal care, social contacts, and bodily functions such as eating and sleeping that require coordination with others. "To resist such a descent, people engage in two broad strategies to reconstruct their lives, one at the practical level, one at the symbolic level" (Seale 1998, 26). Because our study participants remained at home for most of their last days, they had many practical opportunities to maintain their social bonds through everyday life activities.
In this chapter we document the various practical strategies that these participants used to maintain their social existence and humanness through daily life. Being able to eat with someone; to walk to the bathroom and use it in private, unaided; to talk with a friend; to watch a favorite TV show; to hold a grandchild--these mundane activities of daily living at the end of life can become symbolic acts of the greatest importance. Small routines and rituals--a walk in the sunshine, a dish of favorite ice cream--take on cosmic significance as one approaches death. (Thus, some of the information in this chapter easily could have been included in chapter 9, "Personal Growth, Meaning, and Spirituality.")
As participant-observers, we found that the small details of daily living became salient and meaningful in relation to each individual's life context, age, illness, and stance or attitude toward life and death. Comparisons and generalizations across this small group of participants seemed to trivialize their experience. Hence, in this chapter we focus on the significant aspects of each participant's daily life. We pay attention (and encourage readers to do likewise) to the details involved in maintaining ordinary daily activities as death approaches. A summary at the end of this chapter indicates some of the commonalties among participants, for readers who want a quick overview of what the participants shared in common. The most important finding, however, is the degree to which participants in this study found ways to maintain connections with the people and activities that had always been meaningful to them in their own context--and in so doing to maintain their connection to the culture and social life around them.
Dennis and his mother, Carrie, both described their daily routine as "maintenance." The routine consisted, in their own words, of "stamping out fires" and "keeping him hygienic"--the latter to control spreading fungal and bacterial infections.
Stamping Out Fires and Keeping Him Hygienic
Carrie: It seems we are just chasing fires, stamping out fires. Just eating, pain control, and sponging. That's it. You asked us to keep a record of what our day is like. We decided that we couldn't. Outside of Bob Barker's "The Price is Right," if we didn't have something major at the moment, the rest of the day was maintenance, just pure maintenance. Everything was toward his comfort, his cleanliness.
Dennis: The whole day is pretty much devoted to getting the pain under control so I can have some quality of life. Since I don't want to be in the hospital, it means a lot of maintenance and a lot of vigilance.
Part of this daily maintenance that Carrie talked about had to do with washing and bathing:
My greatest concern is when and how Dennis is gonna be kept in his last days, hygienically. Cause I went through six days of this team effort just to give him a saline wash, which was in place of a shower--bed bath. Where you have to be sedated to turn a person to the side, change the bed and give the saline wash all at the same time, with suction and anesthetic. Suction to catch the water on a floatation bed that you could turn.
Perhaps because Dennis was younger than the other participants, he appeared to work hard at finding what he called "quality of life." He described his enjoyable activities as golfing, visiting, staying busy, watching television, fishing, playing slot machines, and having "little AA meetings" with his mother.
Researcher: If you had a real high spot, a good thing to happen, what would it be?
Dennis: It would be that I would feel good enough to go golfing. That's my love. It's a great release for me. It is some exercise, which I need. And it's so enjoyable for me. And I like to perform for Mom and Dad. Due to my condition, you would think that I would not be able to shoot a good game of golf. But I have actually surprised myself in that it's been real relaxing and fun, and I look forward to each time that I can get out.
Carrie: In May Dennis went out and he golfed eighteen holes. I drove the cart and he golfed eighteen holes. And I could not believe it. It was a very good day! He had been sick eighteen hours before. He’s maybe golfed seven times since then. Sometimes with his dad, sometimes with a buddy, sometimes myself.
I enjoy visitors kind of at my leisure, when I want them. I always prefer a phone call prior to somebody dropping over because I may be having a bad day and not want to talk to anybody. But I would say, on the whole, I don't like a whole lot of visitation. Some friends and golf buddies will drop over, but mostly it's been family, though.
I have a pastor who likes to drop in. I treat him as I do anybody else that I'm not really familiar with, and that is, "Please call me first." Because he has shown up at the most inopportune times. We've had quite lengthy discussions on dying, etc. And he's offered a lot of comfort in that area. But I can talk to my family about just about anything. Maybe it's the thing that there is death looming over me that loosens my tongue a little bit more, makes me braver, to be more assertive.
When you're independent, it's really hard to sit back and let people do things for you. I like to cook, fish, and play golf and all kinds of things like that. And when that's kind of taken from you, it's a hard adjustment to say, "Well, how can I entertain myself now?" or "How can I stay busy?" And without involving other people. I have to rely on them for rides or whatever.
TV has become an automatic with me. Whereas before I never watched that much television. But I really have no choice now. I don't read a whole lot. Just never have. I'm not a letter writer. I'm more of an active, outdoorsy person. I do take evening strolls if I can, because I just love this area, the mountains, nor would I want to die in a more beautiful place than this.
Fishing, God, Nature, and Children
What else lifts my spirits? Fishing. The Lord. Uh, I don't find my Lord in the church; I find Him out in the beauty in nature. And fishing--I love to fly fish. I love the different smells and sights and sounds. And I love to travel to different places where I've never been before. And my children, they give me great satisfaction to watch them grow.
Dennis recalled trying to find something pleasant to do, especially during the long weekly drives for chemotherapy treatment. He spoke of getting a hamburger at a fast food restaurant along the way, starting each day over a good cup of coffee, enjoying a lemon almond-flavored birthday cake from a Missoula bakery, or feasting on Twinkies and chocolate milk. Carrie told us that she would put a donut by his bedside during the last week of his life. She also described a Father's Day dinner for Dennis at the family ranch, a few months earlier, when she cooked Dennis's favorite meal: roast chicken, rice, and good bread.
Playing the Slots
One of the most difficult aspects of daily functioning for Dennis was to travel back and forth to Missoula for treatment. Carrie pointed out that she and Dennis worked hard to find something enjoyable about these trips. One thing was to stop and play the slot machines. As we visited on the patio outside the doctor's office in late July, Carrie elaborated on this activity:
Dennis had had a serious gambling problem. It caused great hardship in his immediate family. But we come in here and play the machines. I don't care what it takes of my finances. And this might be insane, but the doctor said today, "Have fun," because he didn't think he'd last the summer. And we talked about what you can't do that's fun anymore and that every decision is a "now" decision. How you feel "now." So it lifts our spirits. We chatter a lot the hour we spend driving in. About anything and everything. If we didn't stop at the machines on the way home, what would we do? What would be fun? What would be enjoyable about coming here? There was a time when we spent 47 days in a row for radiation. What would we do? Get a hamburger? There were months when there was nothing to do. There was no golf. Comfort was all you strove for. And not comfort but tolerable pain control is what we struggled for. And that's what we still struggle for. There's a lot to be said when the doctor says, "Have fun." Just that little prize.
The enjoyment Dennis and his mother got from these visits to the slots is evident in their dialogue about such events:
Dennis: And there's a chance of winning money, maybe.
Carrie: And you can take it to the grave, can't you, Dennis?
Dennis: You better believe it [laughing]. I'm gonna.
Carrie: I mean people say: “Why do you want to play the machines?” Well anybody who knows about playing machines would know it isn’t a matter of money.
Dennis: It's endorphin release; come on, I mean, you find them any way you can get them. That's what you're looking for.
Having Little AA Meetings
Carrie: And we love coffee in the morning. We love the morning.
Dennis: Get all perked up and have our little AA meetings. Solve the troubles of the world [laughs]. We had a good one on the way down today. We just have meetings where we talk back and forth.
Carrie: Today's topic was the gratefulness of a sober mind. Dennis said, "You have to offer a prayer of thanks when you're given the opportunity to... "
Dennis: ... to have that second chance.
Carrie: To have that second chance. And for us, I guess it is a sober mind.
Dennis: Absolutely. A lot of people don't get that second chance.
Later, when we asked Carrie if she ever managed to attend her AA group during that year, she noted:
There was no time to go. Either you just flopped or you were working on maintenance.
Dennis also grew cognitively, finding some meaning in this newly acquired knowledge about his disease. He learned about medicine, especially as it related to his condition. Because his illness was so unusual, he often was learning along with his doctors, and this knowledge gave him great satisfaction.
Daily Routine and Enjoyable Activities
Barbara's daily routine during the time we visited her was still that of an active woman, working whenever she felt able and taking care of her family. Except for great tiredness and the constant round of tests and doctor's visits, there was little remarkable or unusual about her days until the last month of her life. Although we did not visit with Barbara during her last month--and therefore do not have direct information from her about her daily routine--her sister Irene's account describes a rich and enjoyable time at Irene's home.
She loved classical music. I have a CD player that plays continuous CDs. I played flute music for her.
Friends and Family
Her friends came to my home, and they'd just come in and stand at the foot of her bed. They would stand there ... just to see her. And when people brought food. Although she wasn't eating, she could see us eating. I fixed a little couch in the living room, and she was in the living room with all of us. And we sat and visited and talked about her life. This is what we do. And she gets to hear it.
We also had a baby there. We had a little four-month-old baby. Barbara couldn't talk any more. But she could see the baby. This little baby did something for her. My other sister would lay the baby right by Barbara. I think that a lot of times at that point, people are afraid to touch 'em. But this little baby would just kind of grab at her and was just laying right on her. And it did something for her. It would calm her.
Her taste was not the best, but I fixed her things that would look good in the beginning. I baked things and I made soups. I would put a little for her, and she'd take two bites.
In our culture we like smudge. She was on oxygen, but we'd open up my back door and we'd light the smudge outside and we'd let some of it come in, and then we'd close the door. We didn't know if she was smelling it. But she responded to it.
I'd say, "Barbara, why don't you just sit back and close your eyes, and I'll tell you a story. Just listen." She loved to hear about our medicine bundle that we belong to. I would tell her stories that had morals in them. I hung my eagle fan above her head because our belief is that's the dream world. When you lay down to rest, that eagle spirit is going to help you to have good dreams.
Ralph seemed to have less problem filling up his days, perhaps because he was much older than Dennis or Barbara. Up to the last week of his life, although he sat in a wheelchair most of the day, he could get to the toilet by himself and could hobble short distances inside his apartment. When we first visited him in mid-August, he spoke of taking "walks" around the apartment area. Even after his walks had to be made with his walker, he was able to get outdoors-0a prime requirement for this man of the woods. He began his day by sleeping late, having breakfast, then going back to bed for a while.
Because Ralph was almost blind, Sandy would spend periods of time reading to him. He enjoyed hearing news from the weekly newspaper in the Swan as well as the daily Missoulian. Sandy also read him the Bible. Often, when we visited the television would be on. Sandy would watch, and Ralph would listen or doze off. Up to his last months, Ralph would go with Sandy on short shopping trips, remaining in the car until she returned. For the most part, however, Ralph's day consisted of medicating, eating, waiting, and sleeping.
Sleeping was one of Ralph's major daily activities at the time we began our visits with him. In September--a month after we met Ralph--Sandy commented about one of Ralph's "bad spells":
I have to do the cleaning around him, but he's asleep most of the time. He's barely been out of bed since last Friday. So we'll just have to see. He'll either come out of it, which he has done before, but now he's getting very discouraged. So I let him sleep all he wants to because when he's asleep, he isn't suffering. The nurse and the doctor have both said that he'll probably just go to sleep into a coma one of these days. 'Cause that's the disease, the progress the disease takes. When he's awake he has to go through all of this gagging and spitting and choking. The choking is the worst. Trying to get the air in. And when he can't get any air, see, he panics. All of us would do that. We gotta just take one day at a time.
Ralph's enjoyable activities were very limited physically. He whittled (even though he could hardly see what he was doing), watched television (or, more accurately, listened to it), took short walks outside the apartment, accompanied Sandy shopping, was read to, visited with friends and family who drove down to Missoula, and made the long car trip back to his beloved homestead when he could.
The last few months, Ralph spent time whittling peach seeds--making tiny baskets out of them. He did this largely by feel because his vision was so weak. This work with a natural material seemed to be a symbolic connection to his lifelong experience working with the land, the environment, and building log homes. When we visited in November, he was talking about the need to protect the environment when we asked:
Researcher: Are you making something there with that peach pit?
Ralph: Oh yeah, a little basket. It's to keep my fingers busy.
Researcher: That's neat. Have you made many of these baskets?
Ralph: Oh yeah.
Researcher: I see. You have a little saw and a file. How do you get the hole? Is the center hollow?
Ralph: Yeah, that's the hollow. You get your pocket knife and dig that out.
The television was usually on when we visited. The extent to which Ralph attended to the programs was unclear, however. Sandy noted that she, at least, watched it some, especially football games. Sandy described a typical Sunday morning in September as follows:
Yesterday morning he got up and we ate breakfast. He has a church service he likes to watch on television. Comes from Jackson, Mississippi--a Baptist minister he likes real well. We listen to that, and then we usually watch "In Touch" with Charles Stanley. He gets a little carried away, but we watch him anyway. This was Sunday morning, you know, and of course now we watch football. Well, I should say, I do. Anyway, we did that yesterday morning, and as soon as breakfast is over he says, "Can I help you with the dishes?" And I said, "No, I think I'll just put 'em in the soap for now." I had my bed made, but I hadn't made his yet. He got up from the table and had all his pills, and he says, "I think I'll go lay down for a little while." And he went in there and he slept for two hours. And then he went back in the afternoon and slept again for a couple hours or so.
Taking Walks along the River
In August and September, Ralph told us that he still tried to get out to take a walk whenever he could and the weather was good:
Researcher: Did you get your walk today?
Ralph: Yep. I walked down there half way, half way down [pointing out the patio door toward the river].
With Ralph's limited air supply, these walks were a struggle, but the river was a beautiful blue mirror, lined with cottonwood trees turning gold in the fall. Even a few steps with a walker and Sandy by his side for support were worth the effort.
Getting Out in the Car
Ralph's daily routine was largely bounded by the apartment, and he had difficulty getting out, even in the car. His one excursion was on Saturday--shopping day for Sandy. Before our first visits with Ralph in August, Sandy used to leave Ralph at the apartment while she bought groceries and made other shopping trips. After August, she was not comfortable leaving him alone:
Ever since the nurse said she would just as soon not have him alone too long, I've been loading him in the car on Saturday morning and going to the grocery store, and he sits in the car and watches the traffic and everything 'cause it was cool early in the mornings and stuff. And there was no traffic or anything, and so that took care of my problem. You know, I can leave him to sit in the car and not have to haul that stupid chair of his in my car. It won't fit in there.
Being Read To
During an October visit Sandy told us that what's "drivin' him nuts right now" was that his vision was growing worse and worse:
If he could read, then he could read what he wanted to read, you know. But he can't do that, and he's so dependent on me to read to him every day and every night before we go to bed. We read something from the Bible. I have inspirational guides that I've been using, and when the paper comes from home, I read that to him too. But, you know, if I was to sit down and read him a book, it would bore him to death. He's never been one to sit down and read novels and stuff.
One of the problems that Ralph had was that in Missoula he was isolated from his many friends back home, in the Swan Valley. Sandy commented to us that in Missoula they didn't really have a network of friends to help out or even visit. Ralph often spoke of his love of simply visiting with people. Most of Ralph's visitors were hospice workers, nurses, volunteers, and, of course, the doctor and chaplain. If Ralph couldn't see his home friends often, he made up for it by claiming these people as his friends as well:
I really do enjoy visiting with people. That is something that I've talked with the hospice about, and they asked me my opinion. I said there's sure a whole lot to being able to talk to somebody, to get their opinions. Might set you on a little better road to go down too, you know, if you want to listen a little bit, you know. If people come in and talk and tell you about some of their experiences and stuff, like we're doin' here, you know. These people that come in here with me, why, I've gotten a lot of good out of that, a whole bunch of good. Some people say that you don't know how lucky you are about the people you got and that care about you. I didn't know this either until they started comin' out of the woodwork.
Ralph also often spoke to us about his friends back home. A visit from a neighbor was an automatic topic in his conversations with us. In an October visit, for example, he described such a visit:
I had a nice surprise this morning here. It was right after lunchtime, I guess, somewhere right there. I was settin' here and Sandy had stepped out, and there was a knock at the door. And I wondered what in the heck's goin' on. Didn't have no nurses or anything comin' in to look after me, and you people weren't supposed to be here yet. I went over and opened the door, and it was a little girl I know back home. And she had a baby, and she brought the little baby down to show me. I thought that's pretty nice. There's people out there care. It's pretty hard not to cry there. Yeah, I wouldn'ta cared if I'd a cried a drop or two. 'Cause that's quite a little bit of effort to drive down, come down here.
Making Visits Back Home
Ralph didn't get to go back to visit his homestead and friends there very often, but the visits he did make certainly were highlights in his life, despite the difficulty he had getting there and back by car. After Ralph's death, Sandy told us:
I brought him up here as many times as he was able to come. The last time I brought him here he said, "I can't ever do this again. It's too hard on me." So I never tried to bring him back again.
When we saw him in October--just after this trip and about a month before he died--Ralph told us:
I made it up there yesterday. It about played me out. But I said, "What difference does it make? I live from morning 'till night anyway. I'm gonna try one more time. I'll be real extra careful." Sandy drove me up there. I had a nice dinner with my sister and her husband and got to look at the old place. Couldn't see it well, but you could feel it all. You could smell it. All that pretty smell of the timber--and from what I could see, I got to look at the clean-up job that the good people had done, and it looked good to me. And the Reliance forester had already looked at it, and he said it was an excellent job that they had done, cleaning it up. So that made me feel good. So I got a day of it. I got a good day. We went up in the morning and stopped several times along it. There's this mountain--looked at things, you know. And went on, on old stops and a few of the places I wanted to see. Especially to see people I was really fond of, the people that have our little store and post office up there. I went especially down to see her 'cause she was a real dear friend of mine. Yeah, it was worth the added....
Ralph stopped his narrative in mid-sentence. Perhaps he realized that he had been doing all the talking, so he said, "Now it's your turn. Tell me a story," noting that he was "out of air." We tried to introduce a new topic, but he quickly interrupted us and recycled his own favorite topic--the Montana Land Reliance and our need to take care of the land. When Ralph had visitors, he seemed to be able to ignore his physical limitations.
As a result of Sharon's advanced emphysema, her daily routine began with several hours of struggling for breath. She would awake early, at five, and then wake and doze fitfully until after 9:00 A.M. or even later. Her sister Connie would get up to help her in her struggle to breathe. Connie would give Sharon her medications, but some mornings Sharon could not get out to the dining room and her recliner until 11:00. She read the paper while she ate breakfast, then stayed in her big chair--eating a little, watching television, and visiting--most of the day. She remained alert and able to be part of conversations during the afternoon. In the evening, she ate in her recliner, watched television, and was in bed by 9:00.
This routine was punctuated by a great number of visitors, including Sharon's three grown children, some grandchildren, friends, and hospice staff and volunteers. "There are enough people coming in," in Sharon's judgment. Connie said that she had to keep track of twenty-three appointments a week.
With chronic emphysema, Sharon had been sedentary for years, so her increasing immobility and limitations did not seem to bother her. Connie remarked, "I thought I'd take her out a lot this summer, but I couldn't get her to go. She really never wants to go."
Visitors--family and friends--were the mainstay and most important part of Sharon's week. The "twenty-three appointments" Connie described included a Senior Companion who turned out to be an old friend of Sharon's, her three adult children, a hospice volunteer, one or two friends from her former church, a second cousin who lived nearby, and eventually, this researcher. Connie's home was open and accessible. We felt comfortable calling in the morning to ask if we could "stop by"; the coffee was always on, and Connie provided a plate of cookies at any hour as a sign of their hospitality. Sharon's ability to talk often was limited, but she enjoyed hearing people talk around her and was an engaged and interested listener, telling us, "I have full days; there's a lot going on."
The pattern of having people come in to share coffee and talk with Sharon while she listened had been part of her life for a long time. Her son describes the "counseling" she used to do at her kitchen table in the rural hamlet they lived in:
Most of the years I remember her sittin' at the table, the kitchen table. You never knew who'd come and visit. And I mean they had problems, big problems. The wife would come over at times, and then the husband, and she'd spend all day talking to different people, just like a bartender.
Among Sharon's special visitors were some young people she had cared for as a babysitter ten years earlier; these visitors were now in their teens. Sharon reported that one came to visit regularly and played the flute for her during her last months of life:
When I came to Missoula, I did some babysitting. 'Cause I really enjoyed that. And I didn't have any babies in my family. And they've been a real joy now; I mean, they get to come back and visit me. Some of those babies are grown up.
Parties--Birthday and Other
Sharon's family had two big parties for her during her last months of life; she also planned a third one on her own. The first party was four months before her death, in July, when Sharon's grown children and Connie's children, plus assorted other family, got together to celebrate Sharon's life at Connie's house. A ceremonial four-generation family photograph was taken, stories were told, food shared. Sharon and her family referred to this gathering openly as a kind of memorial service celebrating her life.
Sharon's last birthday was in October, and Connie planned a party for the weekend, with a special cake. She invited different friends and family to visit at different times, so that Sharon wouldn't be overwhelmed. Sharon's daughter came from out of town for the weekend with her teenage son; both of Sharon's sons were there, as was one granddaughter, along with the girlfriend of her other son--also clearly a part of this family. Sharon was in good humor and clearly pleased with her birthday party, despite joking with us a week earlier about hoping she "wouldn't make it." She smoked a cigarette with her son and talked with everyone. There was much joking and teasing and little family strain evident among Sharon's close family one month before her death.
The third party is one that Sharon planned in a conversation with her hospice nurse, during a regular visit. Sharon said that she hoped the nurse "would be here" when she died, and the nurse asked, "Do you want to have a party ... right at the end?" Sharon's eyes lit up, and she said yes. They began talking about whether to have cocktails, balloons, streamers. Sharon decided on an angel food cake as the most fitting. This planning was done with much laughter and even excitement. Sharon's death was sudden, so there was no time for the actual party, but the planning was as enjoyable for that moment as the party might have been.
Reading Newspapers and Books
Sharon loved to read; she called it her "number one hobby." She often had the local newspaper on her lap, and she seemed to enjoy keeping up with the news. She had assumed that as she became more and more ill, she'd have more time to read. She showed us a pile of books by her chair but said that she found reading more difficult as she grew more ill:
I'm just real disappointed. I figured that I was gonna have lots of reading time, and I can't. Just can't focus on it.
As Sharon's ability to concentrate lessened, she learned to listen to books on tape. Humorous books by Irma Bombeck were her favorite.
Coffee and Food--"Eat what I want"
Sharon lost much of her taste for food during her last six months, but coffee still tasted good on her seventy-fourth birthday, six weeks before her death: "I can't imagine having too much coffee." As she lost her taste for food, she enjoyed the idea of "eating what I want," rather than having to worry about a balanced diet. Sweets and cakes and other treats still brought her pleasure. Finding a bright side to her loss of appetite and limited intake--and the portents of her system shutting down--was typical of Sharon. She elaborated on this point:
It really doesn't matter if I eat or not. From now on it's for fun. I can eat what I want!
Smoking cigarettes had been Sharon's way of declaring her maturity as a teenager in the late 1930s:
The first thing I did to declare my independence was to start smoking. And I wanted to from the time I was--nobody smoked in our house, but I always wanted to. Smoking and movies were restricted in our lives. And the only things that I wanted to do was smoke and go to the movies.
Unlike Ralph, Sharon never spoke of regretting that she had smoked. She sometimes would light up a cigarette as she talked with visitors:
I never did stop smoking. Somebody says they remembered me saying I was going to, but I ... [lights up] I don't remember that.
Sharon may have had only one or two cigarettes a day at the end, but she enjoyed every one. She would carefully unhook the oxygen clip and slip it off while she smoked, then put it back on.
TV--Especially the Gaithers
TV was Sharon's remaining source of entertainment, apart from her visitors, and she watched it whenever nothing else was happening. She had recently discovered the Gaithers' gospel music program on Sunday afternoons. Connie said she never missed their program: "She loved those old hymns."
Walt was in bed every time we visited him. He could manage to get to the bathroom, but that was all. He spent his waking hours on his back. More than once Walt complained that his biggest problem was boredom. He claimed that he did not like to watch television very much, but he later admitted that he did like to watch baseball games once in a while. His wife, Dorothy, described Walt's daily activities as follows:
Some days he's practically out for 24 hours. And other days, now like today, he was up for a while and was in the chair a little bit. Sometimes he can't get up at all. I get him awake for the pain medication. And the rest of the day he can sleep until he feels like getting up for a break. Some days he's sick at his stomach and can't eat. Some days he can. It just depends on how he feels. He's in diapers sometimes, and sometimes he isn't. We don't usually have lunch. He usually just has a dish of ice cream. That's usually his afternoon fare.
By the time we began visiting Walt, he was almost entirely confined to his bed. According to Dorothy, Walt knew that he would die soon and wished that death would come quickly. Under such conditions, finding enjoyable activities is difficult. Walt's family was very closely knit, and it seemed to provide him with most of the joy that he needed. Therefore, visiting--especially with his family--stands out as providing his most enjoyable moments during his last few months. Previously, he had enjoyed getting out, taking rides with his daughter, and seeing the outdoors he loved so much. By the time of our visits, however, he clung to his family most.
Visiting, Especially with Family
It is clear from both Walt and Dorothy that what Walt enjoyed most was having visitors, mostly family members. Dorothy told us, "I wake him up whenever he has 'em coming. I wake him up because that's more important." In our first August visit, Walt's eyes gleamed as he told us about family members coming to see him:
Well, one of the boys came in this morning and he was here all of a minute. But he was here! Said, "Dad, how you doing?" and "I'm going over to so-and-so, you wanna go with me?" I like to have people come and talk if they don't stay too long. You know what I mean?
Some days all four of 'em is here. One son will come in the middle of the afternoon if he gets the chance. "Well, Dad, I'm not going to bother you." Then he lays down in the bed next to me and takes a nap. Even my daughter in [Eastern city] has been here twice this spring.
Later, also in August, the first topic Walt brought up was about a visit from his nephew and his triplets. Then he recycled this topic three times throughout our visit:
My wife's nephew was here with his triplet girls. Two girls and one boy they were. Two years old, I think. Boy, they are something! This was a lot of family here.
Dorothy prompted Walt about visits from his granddaughter:
Dorothy: Your kids come to see you all the time. What more do you want in life?
Walt: I’ll tell you, they are swell about it. They are really grand.
Dorothy: And when your granddaughter came home from her trip, the first thing she did was to come in and hug you, what more do you want?
Walt: And she didn't even go home to greet her dog first.
After Walt's death, Dorothy reiterated how Walt had loved visitors:
And when he had company, he was good. But when they left, then he was bad. After the kids left, terribly bad.
Walt had been a plumber who was used to getting out on the job every day. Being cooped up in bed was very difficult for him. Walt and Dorothy's duplex was in a neighborhood with continuous construction going on. Walt could hear the construction, but his bedroom was placed in such a way that he could not get to a window and see it. He lamented this fact to us in an early visit.
One of Walt's daughters, in an after-death visit with us, told us that up to six months before he died, she had taken him out on drives through the town:
I started taking him on a ride once a week, somewhere. And our last ride was down the Bitterroot, to a funeral of one of his relatives. So he got to see a lot of the relatives the day of the funeral. Plus we had gone down to visit some of his uncles that are still alive down in Corvallis. So I was trying to make an effort to take him out to see things. I had to go to Phoenix the middle of March, and I told Dad that when I came back, we'd go up and see some of his friends that he'd been wanting to see up around Arlee. But we never got that far. By the time I got back from Phoenix he couldn't make another trip. There was no taking him out of the house any more.
During the time we visited Sarah, she lived in several different settings, including a senior residence, Hospice House, a regular nursing home, and finally, a private home that takes care of eight elderly women (mostly Alzheimer's patients). Consequently, the information we got about daily routines varied from setting to setting. She mentioned the "entertainments" at her former senior residence several times during our visits with her at more recent settings. She made close friends there, especially with a blind lady who cropped up in her conversation several times. Sarah was pretty much on her own there, except for group meals served in the dining room. We got the impression that she liked this setting, except for the fact that the food was not as good as at Hospice House.
Our first visit with Sarah was after she had left this assisted living facility and moved to Hospice House. She dearly loved her new setting, telling us proudly:
This is my home now. It's just actually an awful lot like home. Can't say enough for it. The other place [the senior residence] felt more like a restaurant or something like that. You eat there, then you go back to your room and sit for a while. But they did have some entertainments. But they didn't have a kitchen and living room and things like that to go to.
Although Sarah did not specifically describe her daily routine, the field notes of our visits to Hospice House described a setting that suggested things the residents could do there:
We arrived at 2:00 P.M. and were greeted by a friendly hospice worker who went to Sarah's room to get her. We were ushered into a large and well-appointed, homey living room. Hospice House is just that: a house. It looks like a home in almost every way, except for wheelchairs and walkers in various corners. The living room has a wonderful view of the mountains from the windows. All bedrooms seem to have such views. Residents are not captive to their own rooms here and seem to move around at will. The table in the dining area was set for dinner with four or five placemats for those who could walk (field notes, August 20, 1997).
After Sarah had to leave Hospice House, her daughter, Karen, tried more than one nursing home. She finally settled on a licensed personal care home setting in Missoula, which our field notes describe as follows:
It is an older, ranch-style home, partly log and added onto, which houses eight ladies. It is very pleasant and clean. There are several large eating tables, lots of sitting room and home decorations. It has NO appearance of being an institution. Each lady has her own private room, with bed, table, chairs, dresser, and television. Sarah's room has a glass patio door leading onto a nice patio and a very large back yard. There were also two very nice dogs that lived with the host family. Sarah says it's very expensive and that she can't afford to stay there much longer. Sarah likes the family that runs it. A younger couple had to take care of their parents and so they decided to expand and take in other older people as well.
There appears to be no skilled nursing here, and Sarah reports that Medicare "was not available" (perhaps meaning that Medicare did not cover all of the costs). She has just had her last radiation treatment and was a bit fatigued. Her leg has not functioned properly for several months. She hopes that it will improve enough for her to be readmitted to the senior residence where she lived before she went to Hospice House. Residents there are required to be able to get around better than she has been able to lately (field notes, March 24,1998).
Sarah's days were sedentary at this phase of her life. She was very easygoing and not at all demanding. She told us that she most enjoyed visiting with people, helping whenever she could, and watching television.
Like most of our participants, Sarah often spoke fondly of having visitors come to see her, especially people from her church:
Oh, I've had lots of visitors. The pastor visits all the time. Yeah, well, he's pretty busy. And whenever he can make it. He might come in the evening, or he might come in the afternoon or morning. But whenever he can. But he got out the other day. He was out. Yep.
By early September, Sarah was a bit more precise about the timing of her pastor's visits:
Well, he tries to make it once every two weeks, but he can't always make it. He was so busy.
Other church friends brought the communion elements to Sarah at Hospice House from her church.
It always makes you feel better that somebody cared enough to come. Another thing they do is bring me the flowers from the altar. Real often they bring them, and then I have 'em for another week. And there's somebody that gets to visit, too, that way.
In March, after Sarah had moved to the board-and-care setting, her church friends continued to visit her:
A lady came here a couple days ago. I still see 'em, and they all tell me, "We're coming," but I'm anxious to see the church now they've done it over. I'm anxious to see the inside. They brought a pink bouquet the other day, a plant.
In this care setting, where the other residents had Alzheimer's disease, Sarah found that she could not engage in the kind of visiting that she did at Hospice House or at her other recent homes. The people who ran the facility provided her with enjoyable conversation, kidding, and chit-chat, however. Sarah also enjoyed visits to her daughter's home. Karen still brought her mother home for dinners whenever possible. Each time we visited, Sarah talked about these dinners at Karen's. After the Christmas holidays, Sarah spoke glowingly about spending Christmas eve at Karen's home along with her other daughter and that daughter's stepchildren.
Helping Other Patients
At our first visit in August, Sarah described how she got to Hospice House--at the same time revealing how much she enjoyed helping other people:
The doctor called them [Hospice House] and asked them if I could come here. He said that he thought I would be real good for the people here. 'Cause I'm not down in bed like, well, most of them are. And if they need the bell or something like that, there's two of us in the room. I was just in a room with this other lady that passed away. I can get around, so there's a lot I can do. That lady wasn't with it, and she'd start to crawl out of bed, you know, and I could always get her to stop. I mean, it was nothing much on my part, but it helped her....
At the other place there was one lady that had a bad foot and leg, and she still calls me. I'd run and get help for her most of the time. It wasn't much different there than it is here, but on a smaller scale.
At the private-care setting, Sarah did not mention helping other residents. The other seven ladies were Alzheimer's patients, all ambulatory. In addition, there were four members of the host family to watch over the eight women, reducing the potential for Sarah to help others.
Only on our last visit to Sarah, in March, did she mention watching television. Her other homes had television in a lobby but not in each room. Now, at the private-care setting, she had her very own television set and not much else to fill her days. So she gave it a try, noting:
Over the years I couldn't watch a TV program because I was always taking care of the little kids, day care and foster care. So I don't mind settin' and watchin' TV. I like country music and the news. Or just about whatever's on. Oh, there's some that I don't like. And now I can lay down and watch it.
Kitty's day followed a regular and simple pattern. Her dog, Beau, came in to wake her up each morning, and after Kitty got dressed she would unlock the door for her daily visitors. For several months, a home health care aide came in each morning at 9:30 to check on her. The cats and her dog had doors to go in and out of the house by themselves, and she kept fresh water and food for them in the kitchen.
Kitty spent her days in her favorite chair in the living room, with the TV, radio, and her classical music tapes. The Meals on Wheels delivery came about 11:30; the delivery person put the food in the refrigerator for her, so she wouldn't have to get up from her chair. Other visitors from church came on a daily basis. When Kitty was alone, she watched TV and napped in her chair, getting up only to fix lunch and dinner. Kitty described her days this way--an accurate picture:
Days now are pretty much alike. I get up and have my breakfast, watch a little TV, or listen to the music on KUFM, and sleep. I take naps during the day, anytime I haven't got anything else to do. I'm like an animal, you know. If they haven't got anything else to do, they just curl up and go to sleep. That's the way I am.
Kitty's analogy of being "like an animal," holed up during her last days, was telling. Her small house was cozy and comfortably informal when we first visited, with big overstuffed chairs for visitors and a special chair for her dog. Kitty took a nap in bed in the afternoon and watched the news and other cable channels on TV after dinner. With no one to look after her, she ate "when I get hungry; there's always something in the refrigerator to eat." At night she listened to radio in bed until she fell asleep.
Visitors: "I like company"
Visitors were the highlight of Kitty's life. With no family as caregivers, she was entirely dependent on people "stopping by" to provide companionship and ensure that her needs were met. On our first visit, Kitty made very clear that we were welcome—and welcome to come back:
I'm glad to see anybody. I get awful tired of dogs and cats. Conversation with them is a bit limiting.... I always welcome visitors because it breaks the monotony. You don't like to just talk to your cats and the dog all day long. [Laugh] Or be alone. I like company. You're my third visitor today.
The visits Kitty wanted were purely social; she had no interest in philosophical introspection or developing new friendships. Unlike some of our other study participants--with whom we developed friendly relations and who talked more openly with us about their fears and their death--Kitty was always guarded and cautious in her conversation. As she grew more ill and confused, she became even more guarded. But her enjoyment of "having a visit" continued, even as she became less able to participate in it. She reiterated this point throughout her last months, even as she became more confused and had more difficulty actually taking part in a conversation or even responding to topics:
I always enjoy company. People say, "Can we come and visit?" I say, "Of course; you know you always are welcome."
Until Kitty went to Hospice House, her church continued to send in daily visitors or called her during the week, and someone came with communion on Sunday. These daily visits kept Kitty connected to the world she loved and valued most and to the community where she had lived for sixty years, even as she became unable to participate in it actively.
Animals and Birds
Kitty's animals were the center of her emotional life. She spoke of her worry about their fate if anything should happen to her, and much of our conversation centered around the activities of her dog and the two cats:
I'm very content now, that I can be in my own home and with my animals. This one has a black spot on the nostril. And the other one has practically the same markings except a black chin. They're littermates, I think. I got them at the Humane Society. I'm a great believer in it. These little waifs at the Humane Society, they're the ones that need the help.
After Kitty's dog died (just six weeks before her own death), she talked of getting another one:
When my foot's all healed up, I'm going to get another one. I've never been without a dog, and I can't imagine living without one. The cats are just angelic, but it's not the same.
One of the barriers to going to Hospice House for Kitty was that she could not take all her animals. Earlier in the summer, she seemed aware that she would have to find other homes for them, but as she lost more mental ability to remember and make judgments, she became convinced that her animals could go with her. Fortunately, in her last weeks at Hospice House, a friend from church began to visit her with her own dog, providing Kitty with an opportunity to have animals in her room even as she was dying. Her priest commented on the importance of this last gift: "That was a wonderful thing for Kitty because animals were her life."
Kitty had a bird feeder outside the large picture window, so that she could see the birds coming to feed. She spoke of a tanager that stopped by in the winter, but as fall drew on, she no longer wanted to open the blinds and kept them closed. In her last months, she enjoyed just looking at the pictures of birds hanging on the wall by her fireplace.
I listen to a lot of music. I listen to KUFM, particularly if they have some good music on that I like--mainly classical. I sometimes go to sleep with it on. They have a lot of nice classical music from time to time that I like to listen to.
Kitty also had hundreds of classical music tapes and a portable tape deck in her home. After she went to Hospice House, she had two weeks of relative comfort and alertness and was able to spend much of her time listening to her tapes on her "boom box."
Dining Out and the Weekly Breakfast Club
For years Kitty had gone to breakfast once a week with a group of women from her church. Amazingly enough, her weekly breakfasts continued throughout her illness, with her friends coming by faithfully to pick her up each week. She had always enjoyed going out to eat, and the breakfast club allowed her to continue until four weeks before she died.
I like to go out with people, to restaurants or casinos. Any place to get out. I don't care. I'm not proud. I used to like to dine out.... I still like that. Now everybody has to take me out.
TV: Animal, Travel, A&E Channels
If there's anything good on, I'll be watching TV. The animal channel, travel channel, and there's another one ... A&E [Arts & Entertainment channel on cable].
If there isn't anything good on TV, I'll probably be lying in on the bed, listening to KUFM. I listen to Prairie Home Companion every Saturday night. Yeah.
I like whodunits. Light stuff. I used to read a lot of theology and stuff like that, but I'm kind of letting go to that now and just relaxing. I read quite a bit.
At her daughter Debbie's home, Roberta's daily routine remained the same for six months, until the week she died. Each morning she would get up by 9:00 and get dressed. During the first months she wore a pants suit; later in her illness, she wore an elegant dressing robe. Debbie remembers how her mother was about getting dressed:
She does not want to be in bed. It's a bad thing to be in bed in the daytime, even if you don't feel well. When she's up, that's it, regardless of how bad she feels.
Roberta ate breakfast in the dining room, near her canary's cage, while he sang for her. Sometimes her grandson would fix breakfast for her; more often it was her daughter or son-in-law.
Roberta had a large, comfortable chair in the living room, looking out a large bay window over the street. Watching what was going on, inside and outside the house, was the most important part of her day. When Debbie was at work, a home health aide came in to be with Roberta; the bath aide provided through hospice came once a week to help her with bathing.
Roberta needed assistance with her heart medications but had few other medical needs: no pain medications or oxygen until the end. Her day revolved around waiting for her daughter to come home from her job at 4:00. Evenings were spent in family conversations and watching TV. The house was a social gathering place for Debbie's children and grandchildren, and there was "always something going on."
Roberta remained an impressive, elegant woman--upright and commanding--until the very last week of her life. She enjoyed personal care. Our field notes record one such instance:
When I came at 4:00, Roberta had just returned from having her hair done. It was cut a bit shorter and not curled, and looked like a young woman's short cut--very youthful. She had enjoyed it thoroughly and spoke of always feeling better after she gets her hair cut (field notes, August 18, 1997).
Roberta's home health aide does her fingernails regularly. Roberta has beautiful hands and long nails (field notes, September 17, 1997).
Waldo the Canary
Waldo was a canary that Roberta brought with her from her home. His cage was in the corner of dining room, so that he could see into the kitchen and the large living room. He sang with good cheer on a regular basis for Roberta and for her visitors. The home health aide remarked:
He'll start when Roberta is at the table in the morning. He'll usually start to whistle for her then. He whistles more when she's there.
Roberta talked about Waldo's importance in her life:
I didn't have other pets. Just a bird. That's all I ever had. I don't like cats. I can't stand cats, and I don't like dogs. I like somebody else's dog, but I don't like to own a dog, that gets in the house and all. Birds are easy, heck. Just make sure they've got water, fresh water and food, and they're happy.
TV, Knitting, Reading
Roberta: I watch TV in my room, and if there's nothing on I turn it off and read a book. Let's see, what did I read last that I enjoyed so much? I can't remember. I have to wear glasses when I read, so I don't read too constantly, but I read enough to enjoy it. I like to knit and crochet and things like that.
Debbie: She knits once in a while. She's busy knitting scarves for the little people at school where I work because a lot of them don't have scarves, or they forget them.
Roberta: I like to put jigsaw puzzles together [laughs]. "Oh yippee! I found a piece!" I can be by myself and be pretty happy.
Debbie: We always have a puzzle going for her.
Being able to sit and look out the large front window, with a view of Mt. Sentinel and the neighborhood street, remained a daily pleasure for Roberta throughout her illness:
I love bay windows. There's nothing like bay windows, believe me. They're so nice, and we got such a pretty view of the mountains. I've always said if I ever had a house or were going to buy a house it would have to have a big bay window in it.
Family Get-Togethers and Social Connections
Debbie's home was the social center of a large family. Most weekends, some of Debbie's children or grandchildren (young adults themselves), nieces and nephews would come over for a lunch or dinner. There was a casual, open quality to this family, and Roberta was always at the center of it for the last six months of her life:
This house is the busiest house on the block--and probably in the city. That's what's fun about it. I've got more to think about than myself. It's fun to have different people coming and going in here. They all just come over here, and we have dinner here. We don't plan ahead at all.
Roberta's daughter Debbie and Roberta's great-grandson, who was living with his grandparents while he attended college, filled in the picture of the family context that surrounded Roberta. Her great-grandson described the family home:
This house gets full on weekends. That's always been true. People from all over will be coming in. My grandmother has a sister that lives in Bozeman, and then one that moved up to the lake. Her sister in Bozeman and her husband stay here fairly frequently. And I have another great uncle, Roberta's brother, who comes up quite a bit. And my dad, my uncles, people from all over, seems like.
Debbie confirmed this picture for us:
We have four sons, and they come in and out; two of them come into town constantly. Earlier this year, our grandson and his dad were both living here because they were both going to school at the same time, so they stayed here. And then we had a lot of company this year. We had Jess from Calcutta, that I had never met before. We housed some people, and it was just fun. I just loved it.
Roberta had never been very comfortable in social settings with people other than her own close family. Debbie described her as reclusive after her move back to Missoula (twenty years earlier, after her husband's death and her retirement). Roberta's family understood and accepted this reclusiveness and lack of social comfort. Debbie spoke of her mom having a "barrier" to close friendships, to letting people outside her family ever get to know her. In Roberta's last illness, she had no friends her age to visit her; her family was enough--and was all she wanted:
I don't have a group of people at all. I mean, I have a few friends, but I don't see them very often. I'm just content with my daughter and her friends, and her husband and kids. They're all very nice.
Birthday Dinners and Other Outings
My birthday was last week. And everybody was so nice. They took me out for dinner, and I was very pleased, and they were just so nice to me. My family are lovely people. Every once in a while we got out to dinner. It's fun. Nice to get out and get something different. And Debbie doesn't have to cook.
Pumpkin Ice Cream and Lollipops
Eating became difficult for Roberta as she grew ill, and during her short stay in a nursing home, she stopped eating much at all. Debbie reported to us:
She was not eating very well the last several years. Well, this summer she ate; she couldn't get enough food this summer. It was so fun, I just loved it. She always wanted watermelon, and her lollipops.
For Debbie, Roberta's lack of interest in a favorite ice cream during her last week of life was the most telling symptom during her last week of life that she was dying:
When I tried to give her pumpkin ice cream and she couldn't eat it, I thought that was it. If there was thing that would rouse her, it was the pumpkin ice cream.
With limited sight, hearing, and mobility, Mabel had few pleasures left, and her daily routine did not vary much. She awakened by 9:00 and took care of her bathroom needs herself. She usually wore a brightly colored robe over her nightgown, rather than dressing. Her daughter, Bernice, fixed breakfast for her between 9:30 and 10:00. Mabel usually ate her meals in her large recliner in the front room of the apartment.
Mabel listened to TV and watched the squirrels and birds that crossed the lawn in front of the large patio doors in the living room. Lunch was at 12:30, and Mabel took a nap other afternoons--sometimes going into her bedroom to lie down, often dozing in her chair. The weekly hospice nurse visit was in the afternoon, once a week. There seemed to be no other regular weekly visitors.
Dinner was at 5:30. With increasing difficulty moving and some pain, Mabel no longer sat at the kitchen table but ate on a tray in her chair. After dinner she napped in the chair or watched a favorite TV program until 10:00. Mabel was determined to stay awake until the local news came on. She could not see the TV well, but she could hear it if it was turned up loud. Then she went to bed.
Mabel had few pleasurable activities left. Her eyesight was rapidly diminishing because of macular degeneration, and her hearing, even with hearing aids, was not good. The bone cancer and consistent pain she experienced made movement difficult. On our visits, Mabel generally complained that she "can't see, can't hear, can't read or write," and had little enjoyment left to her; our field notes recorded some small pleasures that made her days better, however.
Mabel spoke of liking to listen to music. Bernice had a record player, and Mabel had a Sony Walkman that allowed her to listen to tapes without bothering her daughter.
What gives me joy? The only thing that gives me joy anymore is my grandkids. They come to see me. They haven't been coming lately, though, because they're moving. But they come down a lot.
That little guy there [pointing to pictures on wall behind her], I've only seen him twice. They're coming over some time this month, for a couple of days. He'll be three years old. Ain't he, Bernice?
He's a pretty little thing. He's pretty, all right. And Bernice's son, his wife just had another one. He's got two girls now.
Throughout our months of visiting, Mabel never wavered from her delight and joy in her "grandchildren" (actually great-grandchildren). Only one family lived nearby, in Missoula; other grandchildren and great-grandchildren were scattered from Idaho to Minnesota. Sitting in her chair, Mabel could no longer see the family photographs arranged on the wall, but she had them memorized and could describe each one from memory.
Mabel and her daughter had few visitors, outside of occasional family visits from Mabel's other daughter and granddaughter, who lived in Idaho, and from Bernice's son and daughter-in-law and their children, who lived in Missoula. One former neighbor from Mabel's former home town came a few times during the year. On the other hand, the large sliding glass door opened onto an outside lawn bordered by a small drainage ditch. This area attracted a variety of small animals, pigeons, squirrels, a groundhog, and an occasional duck. Some scampered up to the door looking for food. Despite Mabel's poor vision, she seemed to be able to see these small visitors, and they brightened up her day:
I was seeing that little pigeon the other day. There's two on the porch. That's the first time I've ever heard them coo. Well, I can see 'em, but it's dim too. Sure had a lot of pigeons out there this morning. Bernice took some food out there and fed them. There sure was a lot. And they fight. We used to have a gopher, and he just disappeared. We think somebody did away with the poor little thing. He was out there every day, looking for somethin' to eat.
On our visits, Mabel usually began her conversations with a litany of her recent complaints, but our notes show that she "remained engaged in our conversation for 45 minutes, seemed bright and alert." Despite her complaints, she enjoyed company. When she felt good, she was able to hear well enough to join in on topics that Bernice was discussing or to interrupt the conversation to introduce her own topics--usually about news of her family or about local disasters she had heard about.
The happiest time we observed at Mabel's was the day before Christmas. Bernice was planning to cook a full Christmas dinner for her son, daughter-in-law, and their two little girls. Mabel was wheelchair bound and unable to get out without special assistance. Having the family come to their small apartment brought an unusual sense of excitement to their lives.
"Walker, Texas Ranger"
Although Mabel complained that she couldn't see or hear, she unfailingly watched some favorite TV shows, including "Walker, Texas Ranger," and she always watched the 10:00 news at night.
Phone Calls from Her Sister
During one of our visits, the phone next to Mabel's chair rang and she answered it, while we continued to talk with Bernice. The caller was Mabel's older sister, also homebound and ill but still living by herself in another part of Missoula. When we telephoned their home, Mabel usually answered, but deafness interfered with her ability to understand us, and she would quickly get Bernice on the phone. In contrast, Mabel seemed to have no difficulty hearing and talking at length with her sister. One conversation we observed lasted ten minutes; it consisted of talk about doctors and ailments and about their families and great-grandchildren. They also discussed a recent fire and accidental death in Missoula, which Mabel had heard about on the radio. She also told her sister about our visit and accurately described our ongoing conversation with her daughter. She was very animated and engaged during that telephone conversation and, not surprisingly, showed much more involvement and less confusion than she did in conversations with us, relative strangers.
This phone link with her family appeared to be an important and enjoyable part of Mabel's day. It was one remaining way in which her isolation was lessened.
Mabel often complained that her poor vision limited her world and was the greatest loss she experienced. Her daughter read the daily newspaper to her, and between listening to Bernice reading the newspaper and listening to the nightly local news, Mabel was able to keep up with local events. She particularly remembered and focused on local disasters, fires, roof cave-ins, and deaths. Local events provided some of the excitement that Mabel seemed to want and found missing in her daily life:
Mabel: I guess they caved that one roof in, right down on the corner.
Researcher: Where is that?
Bernice: Right down there at the Exchange.
Researcher: Oh, I didn't know that.
Mabel: It was in the paper.
On one visit, when Mabel was feeling particularly good, she offered to show the researcher her file of newspaper clippings at our next visit:
Researcher: I'll come back and see you in a couple of weeks. Will that be okay?
Mabel: Probably won’t have anything new to tell ya.
Researcher: Well, you never know. If you do--
Mabel: Might have some pictures to show you, just clippings I've cut out of the paper about different things.
Researcher: Oh, okay. Things you're interested in.
Mabel: You probably wouldn't be interested in that.
Researcher: Oh, I might be.
Mabel: 'Bout old Barney Wilkenson, he fought in the last Big Hole Battle that they had over at Wisdom. I got quite a few pictures. I clip 'em out of the newspaper and save them.
Mabel usually complained about her present state or told "tales of woe" about bad things that had happened in the past. On one topic, however, her eyes lit up, and memories of good times returned: dancing:
What do I like about Hamilton? I know me and my sister used to go to the dances all the time at McCormicks. Everybody I know always went out there on Saturday night. Everybody was friendly up there....
Well, I'll tell you, if I was out and going, I'd go out and get me a boyfriend. We'd go out dancing. Well, that hope's gone forever. With my pain and legs....
I can remember they had a street dance and [laughs] some boys; they had put on wooden shoes, and he wanted to dance with me and I stood up there; heck, I couldn't dance with him with them wooden shoes on, and so I just got off on his feet.
Memories of dancing, and dreams of going dancing again, transformed Mabel's face for a moment. Then the pains and the boredom of her present state returned.
Our participants' daily routines were similar in matters of medication and sleep or rest. Dennis's day was more taken up with controlling pain and hygiene; Ralph's, Sharon's, and Walt's days were more absorbed in sleep. The others fell somewhere between these extremes, depending on their age, illness, and disease trajectory. One thing to expect in the daily routines of the more elderly population close to death is the increased pattern of sleeping much of the time.
The enjoyable activities mentioned by the participants provide a picture of what they considered to be positive and meaningful in their last days of life. This finding offers implications for the expectations of caregivers and visitors alike.
The foregoing data suggest that watching television, eating, and having visitors--especially young children--appear to be among the broadly enjoyable activities available to persons who are terminally ill. Not surprisingly, male participants in our study hung on to whatever outdoor activities they could, whereas female participants engaged in more indoor activities. Some of the women found ways to bring nature indoors: For example, Roberta had her canary and a view of the mountains from the window, Kitty her pets and the Nature Channel on TV. Books and music were favored by females; eating remained an enjoyable activity for those whose condition permitted it.
Finding enjoyable activities seemed to be more important to Dennis, the patient who seemed most wracked with constant and less controllable pain. All three males in our study found some enjoyment in getting out in nature. Dennis had actual physical activities, such as golfing and fishing. Ralph was satisfied just to get outside the house and visit the homestead or sit in the car while Sandy went shopping. Walt loved being taken for car rides as long as his health permitted.
The females in our study seemed less concerned about getting outside physically. Kitty was quite content in her little nest at home. Even when asked if they would enjoy being taken out--for example, to see the Christmas lights--the female participants were unenthusiastic. All of the participants expressed enjoyment in visiting, but Dennis added the caveat that he preferred that visitors make appointments. Dorothy, Walt's wife, said that anyone could visit Walt any time; she would wake him up if necessary because this activity was so important. Likewise, Kitty's, Ralph's, and Sarah's doors were always open to visitors.
Walt complained of boredom. Dennis seemed to be able to keep busy enough to be satisfied. Ralph complained of his uselessness and prayed that God would find some work for him to do in heaven. In contrast, the females in our study did not openly complain of being bored, although some--such as Mabel and Sarah--clearly had little to occupy them during the day.
Sharing of meals is a particular sign of the social bond and membership in the social community (Seale 1998). Thus, at the end of life, participants and their families focused particularly on eating--how well the dying person could still eat. The daily life of participants was marked by significant food "events," large and small: birthday parties for Sharon and Roberta; cooking fry bread during Barbara's last two weeks of life at her sister's home; ice cream for Roberta; Ralph making the long drive back to the homestead for a Sunday dinner with his brother; Dennis and his mother sharing a cup of coffee and a hamburger on their painful trips from his home to the doctor's office in Missoula. For others, such as Walt, loss of interest in food and inability to eat at all was a sign of death's nearness.
Daily Life and Meaningful Activities in the Subculture of the Dying
The participants in this study illustrate that members of the subculture of the dying have difficulty achieving former levels of comfort, growth, hope, continuity, control, dignity, mobility, and wide social networks. Their comfort and mobility are, by definition, deeply affected by physical illness. For this group, we observed little remaining energy for active growth, although there was evidence of growth toward meaningful resolution of issues during their past year of life (see chapter 11). Unless there has been careful planning, economic security quickly decays. Hope of living is denied, of course, along with at least some concepts of continuity. Even a person's sense of dignity may come into question. By examining how these participants dealt with their sudden move to the subculture of the dying, we can see different patterns of behavior and thought.
Dennis, the youngest participant in our study, strove valiantly to preserve a sense of hope, continuity, control, mobility, and dignity. He did so by flying in the face of the odds--going out on the golf course and shooting very respectable rounds of golf even in his last months of life. He also ate Twinkies, donuts, and whatever else he wanted. In so doing, he made a statement that he still had control of things, he still had personal value, he was still mobile, he still had some hope. And because he had been an athlete and a golf pro, he also made a statement about his continuity in this field. He was telling the world that it wasn't over quite yet.
Likewise, when Dennis played the slots he expressed his sense of control over the world. He had mastered his gambling problem and could no longer be tempted. In any case, what difference did it make? Just as some dying patients do not worry about becoming addicted to narcotics, Dennis did not worry about a relapse into addictive gambling.
Was this a form of folly on Dennis's part? Didn't he know that he could not stop the onslaught of death even though he acted, temporarily, as though everything was indeed okay? Should he, like Mabel, have just stayed inside and recognized the hopelessness of his plight? Fortunately, this study need not answer these questions.
Most older, terminally ill patients do not fight as hard as Dennis did. Their expressions of control, hope, dignity, and continuity are couched in abstract rather than physical terms. For example, Ralph made a statement about his continuing mobility by talking short walks. He expressed his sense of dignity and continuity by his putting his homestead and ranch into the Montana Land Reliance. He was extremely proud of this action; in his mind, it guaranteed that his land would never come into the hands of real estate developers. This plan also gave Ralph a sense of hope at a time when there was absolutely no hope for the continuation of his own life. This hope, coupled with his belief in life after death, gave Ralph something to look forward to in spite of his impending death.
Walt, Ralph, Sharon, and Sarah had no apparent need for control at this stage of their lives. Walt had surrendered all control to his wife. He was not even humiliated by his need to wear diapers--perhaps the ultimate embarrassment; he cheerfully told us, "It sure does beat the alternative." Ralph was painfully aware that his body was shutting down. In his last weeks, his walks--perhaps the last vestige of a formerly very physical man--were made in a wheelchair. Ralph had no illusions that he could still control his body. Sarah, who had been so active in earlier days, seemed content to let others make decisions for her. Dennis continued to fight, however, for whatever sense of control he might salvage as his body was shutting down. He needed the hope such a fight would bring. He needed the self-dignity that shooting a good round of golf would afford.
The subculture of the dying is characterized by a shrinking social network, especially among the most elderly. Older persons commonly complain that all their friends are gone. This fact in itself obviously reduces the social network. Moreover, some elderly patients seem to prefer isolation. They also can become cranky--as much from not feeling well as from flaws in temperament--leading to further reduction in friends.
These participants reveal a spectrum of positions on the issue of social network. The majority culture often has a wide social network. Minority subcultures often do not. In this sense, the subculture of the dying is like a minority subculture. Loss of mobility alone can reduce social networks. Loss of dignity, control, hope, and economic security also contribute.
In Ralph's case, the need to leave his home area and move 60 miles away to get needed treatment greatly diminished his accessibility to his lifelong social network. In fact, Sandy once told us that they didn't know anybody in Missoula when they first moved there. Ralph's solution to this problem was to make an effort to add locals to his extant network, while maintaining contact with the more distant network back home.
A quite different phenomenon seems to characterize Dennis and Walt, although it is unclear exactly how broad their nonfamily social networks were before they became terminally ill. What we could see during the time we visited them, however, was a narrowing of social networks almost exclusively to their immediate families, especially to their caregivers. Mabel professed to never having many friends, which seems to have contributed to her isolation. Apparently, some terminally ill people and their caregivers expand their social networks at the time of crisis; others contract their friendship circles to focus on their problems.
We have seen how dying persons' everyday, practical strategies for affirming the social bond also become symbolic strategies for transcending its rupture. These participants, by continuing with as many of their daily activities as they could, were able to assert their identity and their continued existence even after being labeled "terminal." Rather than having one "last wish" for a unique experience, they mostly wanted nothing so much as the ordinary, for the ordinary daily activities affirmed their social existence. As chapter 4 shows, these participants were mostly openly "aware" and recognized that they were dying, but they spent very little time dwelling on the presence of that reality in their lives.
Seale (1998) has stressed the centrality of the body to our experience of life itself. Thus, the activities of daily living--which we take for granted when the body is healthy--become of major concern and value when the body is dying. Debbie's observation about her mother's lack of interest in pumpkin ice cream as a signal of her impending death appears to have been accurate. Simple everyday events--such as favorite foods, music, rides in a car, or views of nature--are symbols of life itself to the dying. [135-172]
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