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       The Final Days 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 relied on after-death interviews with caregivers to learn about the last days of the participants in this study. With one or two exceptions, the families of our participants drew close and cut off contact with others during the last days of life, and we respected their privacy unless they specifically invited us to visit. In each case, we had seen the person who was dying within the last month; as their conditions grew more and more critical, in most instances we could keep in touch only by telephone. In many cases, caregivers had no time or energy to return our calls. After death, however, the doors to our communication with the caregivers were again open. Families welcomed the opportunity to talk about their experiences. We learned about the last days of the patients' lives through the caregivers' accounts.

Table 10-1 provides a summary of the context in which the patients died.

Home clearly was the preferred locus of care and dying for most of the patients in this study. Ralph, Barbara, and Kitty transferred to Hospice House near their very end of life, but the others died at home. Also of interest is that on the whole, family caregivers were well informed about the physical signs that would indicate the last hours of life. The notable exception was the case of Dennis and his family. They had no hospice support or other health care professionals to assist them in understanding what was happening during his dying.

 

Final Days

In this section, we present the narrative accounts provided by the closest caregiver of each patient, to provide a window into the last days as those close to the patient experienced them. We present these narratives without interruption or analysis; we have analyzed much of this information in other chapters.

 

Table 10-1 Summary of Patients' Last Days

Patient

Location

Hospice care?

Family/caregiver knew death was imminent

Dennis

Home

No

No

Barbara

Home/Hospice House(12 hours)

Last 4 days

Yes

Ralph

Hospice House

(3 days)

Yes

Yes

Sharon

Home

Yes

Somewhat

Kitty

Hospice House

(2 weeks)

Yes

Yes

Walt

Home

Yes

Yes

Sarah

Hospice House

(9 months)

Yes

Yes

Roberta

Home

Yes

Yes

Mabel

Home

Yes

 Yes

 

 

"It seems it wasn't finished right": Dennis

Dennis, a younger cancer patient, continued to insist on remaining at home as his condition grew obviously more critical. His mother reported:

 

The doctor could see through me that it would be better to put Dennis in the hospital for a few days when they were going up to this Fentanyl again.

They were trying to talk him into going to the hospital so that he could be monitored. And I told him, "Dennis, just to be monitored." He said, "I am not going to any hospital." And I never wanted it to come to that. I always wanted to be able to have him where he was most comfortable. And he looked at me and said, "We'll talk about this later." And I said, "I wish we could talk about this now in front of the professionals." And he repeated, "We'll talk about this later." But anyway, we went home, and he tried really, really hard--just broke my heart--to do things even, you know, above and beyond. All he took was water for about the last two, three days. Always if he heard somebody talk about hospital he'd say, "No." And then the last time I gave him a pill, he blew instead of swallowing.

In our minds, we didn't know how imminent death was. His brother left for work, and after work he was going to come here and help us discuss with Dennis again about taking him to the homestead.

I'd been up since about two. And about seven I told my husband, "I'm going for a little walk." I took the dog. When I came back I ate a little bit of leftover from last night. And it just stuck. And I had to go to the bathroom to throw up. Then I laid down, and that kind of relieved it. My husband was with him, reading the paper. And the next thing I knew, he came in and said, "Carrie, I think he's dying." And I went in, and he was dead. But that made me mad. Because all the time I invested, I wanted to be there.

And I've wondered over and over if Dennis made some indications of any kind. I could have talked. I would never have left him if I would have known he only had two hours. I really missed the opportunity to say to Dennis, "How do you feel differently now?" l thought it was the legacy that in the long run he might have wanted to leave. I don't know; we don't always want to leave the way we feel at a particular time. So I felt that he might say it.

And I did not recognize the signs of near-death. It would have helped if somebody would have told me. Now, some people might not be able to take it. They would either deny it or not want to hear it. But I think the nurses knew me well enough over the years to know that I was resigned.

If someone would have told me, "I think the end is pretty close now." It would have helped to know that the hearing is the last to go. It seems it wasn't finished right.

 

 

Passing Over to the Other Side: Barbara

The story of Barbara's final days comes from her sister Irene, who cared for Barbara in her home during the last two weeks of her life. Irene was able to provide Barbara with comforts from both cultures in which Barbara lived so successfully: the "white man's world" and her own Native American traditions. Irene found great meaning for herself and for their extended family in helping Barbara "pass on" to the world of her ancestors.

 

She came to my home from the hospital, two weeks before she crossed over. We very seldom use the word "death." We say "crossed over" because it means that we are going to see them again. She rested that night. The next day she was up cooking fry bread. She was making Indian tacos for her son and her brother who was coming to visit. She had a load of laundry in the washer, and she was pushing the vacuum around my house.

I made it comfortable. In February of '97 she called me and said, "Can you come home and help me to die with dignity?" And I reminded her of it, and she smiled at me, and she knew that we had come to fulfill what she asked.

I had help from the home health care people. They knew Barbara from before, and one of the nurses was married to a Native American, so she really felt comfortable. I've never been a nurse. I was a greenhorn.

I brushed her teeth, I combed her hair. I put makeup on, I painted her fingernails when she wanted them done. And I kept her in clean pajamas every day. I put lotion on her, I gave her foot massages. I did everything that you do for a baby. I read to her. I played music for her. She loves classical music. I have a CD player that plays continuous CDs. I went out and got plants that would be very soothing to look at.

I fixed things for her--I knew her taste was not the best, but I fixed her things that would look good in the beginning. She watched me cook. I baked. I never bake. I baked things, and I made soups. I just would put a little for her, and she'd maybe take two bites. And then I was beading these moccasins for a friend of mine.

I fixed her a real soft bed. She was always kind of a little bit chilly; I put flannel sheets on her bed, and then I put a silk pillow, you know, because she was losing her hair, you know. I bought her flannel pajamas and I got her little foot things, and I had a lot of pillows in her room.

You know in our, 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 then I knew she was. And she responded to it.

And her friends came to my home, and all they'd do is they'd just come in and just stand at the foot of her bed. They would just stand there, and all they want to do is just see her. And then people brought food. Although she wasn't eating, she could see us eating. She talked on the phone a few times, but often I would say, "Well, she's sitting right here, but she can't talk. She's doing okay" And I would tell them a little bit about how she's doing, and she would listen to me, and then I'd tell her the news that they were saying. So she didn't have to hold the phone and talk. She could just listen to what I was saying.

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 sister would lay her 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.

The day before we took her to Hospice House, our parents came, and Barbara had stopped eating and stopped drinking water. And she had this faraway look in her eye. And I'd call her and she'd look away, and then she'd focus back on me. And asked her, "Barbara, have you started your journey to the other side?"

And she looked at me, and she just smiled so big. And I told her, "I'm here with you. I'm not going to leave you. You don't have anything to be afraid of. I want to thank you for this opportunity to see through your eyes to the other side."

In our way of life, you know, we believe that our ancestors come to get us. We sensed, we felt my house was full of those many relatives. We got all kinds of little warnings that it was that time. My back door opens out to the golf course. And the last night that she was with us, we stayed up and talked. And we had the back door open. We sat there with the door open all night. And it was just like, you know, it was just like people coming and going, you know.

Toward the end, I fixed a little couch that makes into a bed 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. I mean, this is what we do. And she gets to hear it. We talked about when she was real young, and we talked about when she had her first child, and we talked about the landmarks in her life. We also talked about her, and it was also very sad. We all took turns crying.

And I read the Bible to her and played a flute music tape for her. Barbara had one foot in what we call the white man's world. But she also had her other foot in our Indian world. She always went toward what we had in common. I always read her the Psalms--Psalm 23--and then I would burn smudge for her. I hung my eagle fan above her head because our belief is that's the dream world. And that when you lay down to rest, that eagle spirit is going to help you to have good dreams.

I did everything that I would want somebody to do for me. I would say, "Barbara, why don't you just sit back and close your eyes, and I'll tell you a story. Just listen." And she would do that. She'd just close her eyes, and I'd talk about our grandma or I would talk about--she loved to hear about our medicine bundle, that we belong to. I would tell her stories that had morals in them.

I think that her passing was so peaceful. Because we all wondered what is it going to be like? And we all worried: Can we handle this? And my mother, she would go into the bathroom and she would cry, and she'd tell me, "Why don't you call the hospital and have them, you know, come and get her?" She was worried whenever Barbara would start coughing, and then I would reassure her, "Mom, we're doing everything we can for her, and they're going to do the same things that we can." And I started worrying about my mom: Can she handle this? And I would just let her cry.

The last day, I would always say, "Barbara, can you close your eyes? Rest your eyes, Barbara." And then she'd close her eyes. She knew my voice, and I felt good about that. Pretty soon her eyes would be open again, and I'd go over and tell her who I was, tell her what time of the day it was, what kind of weather it was outside, who was all there.

We thought Barbara was leaving us several times. Her breathing was just really getting erratic, and she'd hold her breath. We thought that she was leaving. And then all of a sudden, I told my mom, "You know, I think Barbara's waiting for something. I don't know what it is, but maybe she doesn't want to leave here at my home." Because she knows I have to live here. So then Hospice called, and Mom answered, and said, "The hospice (house) has an opening. What do you think?" I said, "I think we should take her. We've done as much as we can do. And I think that we need a little bit more skilled people that know more about the end." And so we agreed. And so they said, "We'll send the ambulance." So we started getting her ready. We bathed her and changed her pajamas and everything, and then we all went out there. We took her there at 1:00 in the afternoon, and she passed on that night at 11:30, 12:30.
     And I called for the harp, the people that play the harp--the Chalice of Repose. They had come to my house when she was there. And it not only helped Barbara, but it helped us. My mother didn't care for it because she felt it was too morbid [laughs]. They came [to Hospice House] at six o'clock, and I just felt a real peace, peace for her.

I was tired, and I told my mom, "I'm going go home and rest. I'll come back in the morning." This was about maybe 7:00. We were talking in her room, and so Mom said, "We'll stay for awhile. We'll see how she's doing." We had been up for the last five days. Then the nurse came in and said, "We're going to turn her. Can you all, you know, step out for a little bit? We're going to change her and turn her." And so we all went into the front room, and I told mom, "Well, okay. We're going to go into town." We were all getting ready to leave. And the nurse came, and she said, "I don't think you guys should leave. I think it's time."

We all went back in, and then her breathing came back again. Then that's when we all started laughing, and tears were just coming to our eyes. We were laughing because we were saying, "She's just keeping us here. You know, she doesn't want any one of us to leave." So that was about 9:00. Then I said, "Well, I'm going to go home at ten, because really I am just beat." So she heard us say that again. So we went into the front room, and then the nurse came back, and she said, "I hate to keep doing this to you, but I think you need to come back."

So we went back, and that was the first time I felt her hands. They were cold, and the back of her legs were cold. Right there I just knew that it was close. But yet I really didn't know. Then my aunt came and went in to see her. And her daughter went in and was holding her. And she left us.

 

 

"Now you can go see your kids": Ralph

Ralph, an older emphysema patient, was rational up to the last week of his life, when he finally became too much for Sandy, his caregiver, to handle alone. The hospice nurse had made Ralph and Sandy aware what the signs of his last days would be:

 

The hospice nurse has been telling him for months that this is what's gonna happen to him. That eventually he would just get sleepier and sleepier and sleepier, until one of these days he'll quit.

 

Two weeks before Ralph's death, Sandy told us that Ralph often prayed to die:

 

So all I hear now is, "I pray and I pray and I pray, let me die--but He won't let me." It's gettin' so he hates to get up in the morning now: another day! I can't leave him alone. He's too weak. Now he's gettin' quite a few cold--the bogwobbles, he calls it. It's something horses get. They get wobbly on their feet, and so they call them bogwobbles.

 

The week of Ralph's death, Sandy reported to us that Ralph had been "in kind of a little half-way coma" and had lost three pints of blood. He wouldn't take his medicine; worse yet, oxygen deprivation caused him to distrust Sandy and even to accuse her of trying to kill him. Sandy finally called the hospice nurse at 4:00 in the morning. The nurse came quickly, sedated Ralph, and made arrangements to transfer him to Hospice House immediately. Once Ralph was there, his awareness faded in and out: Sometimes he remembered things, but mostly did not, as Sandy reports:

 

He had a couple of moments when he was conscious and could talk. He told me, he says, "You know, this is just about over with." And I said, "Yeah." He knew he was dying, you know. And he says, "The first thing you're gonna do is go see your kids, aren't you?" And I said, "Yeah, okay." That's what he wanted me to do first--was to go see them because I had gone a long time without seeing them so that I could be with Ralph. As sick as he was, I wouldn't have left him.

 

Sandy did not feel guilty about giving up her constant care of him at the very end:

 

I couldn't do it. There was no way I could do it. You know, with the pump and everything, I just couldn't do it. It's so hard to see him gasping for air that way. He didn't even know I was there today. He never even asked for me. But he knows that I know that what he's saying to me now he doesn't mean. I can pray just as hard at home.

 

The next day--the day before Ralph died--Sandy had a long visit with him:

 

He looked at me, and I asked him if he was still mad at me. He said, "No, no." He was just so confused about everything, and that was the main thing that he was angry about, you know.

 

That night, Ralph had another episode of internal bleeding. He died the next day. Sandy observed:

 

They called and the Hospice chaplain came and got me, and I went out there. But I--by the time I got there he was gone. I wasn't there when he died, but I don't think he woulda known it anyway.

 

Following Ralph's wishes, within a month after his death Sandy flew to Colorado to visit the children and grandchildren she had not seen for three years.

 

 

"Twelve hours to make the transition": Sharon

Sharon's last day came very suddenly--less than seventy-two hours after her last visit with one of her sons and a niece. Even her daughter, who lived several hours away, was not able to come back in time. Sharon died at her sister Connie's home. Connie tells the story of the sudden "turning point," which no one in her family quite expected or recognized when it came.

 

The turning point was very sudden and very dramatic. Her hospice nurse said there'd be no question. We'd know when that came....

Terry, her son, was here Saturday, and that's the day my daughter came. I picked her up at the airport and we went shopping, and we were gone a couple of hours. When we came home, Sharon was still fine. She and my daughter hugged and visited a little bit. But she was tired, which is normal after visiting a lot--first with Terry and then with my daughter. She went to lie down, and then it was hard to wake her up. She was just so deeply asleep. And the next day it was still that kind of thing. She would get up to use the commode. She'd wake up enough to that, then she went right back to sleep again....

I guess I didn't call her kids right away. I was confused because she said that night that her stomach was upset. And I told her that we could do two things. She could either take a pill, which made her very sleepy, or she could take food. And either of those would help her stomach. And she chose the pill. So I wasn't sure all weekend if she was reacting to that....

I called hospice. But it was a weekend, so I talked to the other nurse. She didn't know Sharon that well and just gave some general advice, but she didn't come out. But when the nurse came on Monday morning, she knew that she had pneumonia. She recognized it.

Sunday night, she fell in her room. She got out of bed herself, and I think that she collapsed as soon as she put her feet to the floor. I didn't find her until I got up early morning. She'd been there awhile because her feet were cold, but the rest of her was warm because the house wasn't very cold and she was in the warm nightie. She was deeply asleep that time. My daughter was there, so together we were able to get her back to bed.

Sometimes she'd come to, kind of half-conscious, and talk a little bit. But she didn't make sense. I wondered if she'd had a little stroke, too. Because she would either just repeat a phrase over and over or else say nonsense words. She didn't stay awake at all. She'd just emerge a little bit and then sink back down again. She had one drenching sweat....

When the hospice nurse came Monday morning, she thought Sharon probably would be with us 2 or 3 days. She knew that she had turned that corner. She kept talking about that corner.... She ordered the hospital bed and the catheter and morphine pump. And we settled her comfortably in bed, and she just never moved again. We moved her, turned her over once, but she didn't ever wake up again. It was during the night that she died. My daughter was here with me.

Don [Sharon's other son] came after work on Monday. I don't think Terry was back again. I called and asked them if they wanted to see her. Don was here, too, when the mortician came....

She died in the early morning Tuesday, and we kept her until mid-afternoon. I read that you want to give a person twelve hours to make the transition. With my husband [who died at home four years previously] I felt I had to call the mortuary. We'd washed him and had fresh pajamas on, and he looked so nice. But we had agreed that we'd call Five Valleys when he died, and I just seemed to think that I had to do it. And they came in 20 minutes! I could have waited until the kids came to see him.
 

 

Getting Permission to Die: Walt

Walt had suffered through many heart attacks and hospitalizations over the previous eleven years. During the most recent one, about a year before he died, he apparently hung on mostly because his family was not ready to let him go quite yet. His wife and caregiver, Dorothy, told us:

 

I guess he had to make his children be willing to accept his dying. They were very close to him, and at the end they had to let him go. That was his main thing. He had to get to the point where the children could let him go. And he realized that. I don't think people realize how much they have to do this. And you're lucky if you can go on long enough for the family to release you. The entire family has to be willing to let go.

 

Dorothy described how the family managed to release Walt:

 

The children came in, and they talked to him and told him everything was all right. They all talked about his wishes after he was gone. The boys told him how they would divide up his tools. The girls told him which one would get his books. So everything was discussed, and the children did not feel bad about taking the things. I think that people close themselves up too much when someone is ready to pass away, until there's too much confusion.

 

One of Walt's sons elaborated a bit:

 

Dad wanted to make sure that I got his oxi-acetylene tanks. So I did. Which was not a problem for my brother. He took pretty much all of Dad's wood tools, and I took pretty much what was metal. We assured Dad that there wouldn't be no fighting over nothing. I mean, we both told him we loved him. His stuff really wasn't that valuable. You know, mainly the thing both of us wanted was a piece of him, personality wise. One thing Dad wanted me to have was a dust pan, believe it or not, that I made in seventh grade metal shop. He kept that dust pan over the years and wanted me to have it back.

 

 

A Gift to Her: Kitty

Kitty's final days were spent in the place she had worked so hard to avoid: Hospice House. She was taken there at the insistence of her Hospice nurse, after the nurse found her disoriented, incontinent, and clearly no longer able to care for herself, on a Monday morning one month before Kitty's death. During the first two weeks at Hospice House, Kitty was able to eat in the common dining area, visit with others, enjoy her tapes in the family room, and read "all the time." She said to the staff, "This was a good move for me."

During her last week she declined rapidly and became comatose. She struggled to make some last changes in her will, with great difficulty. At one point, she roused out of her coma and said to a nurse and visitors in her room, "I have an announcement. We're all equally alive." The staff who reported this statement inferred that it was a sign of her movement toward death with comfort.
     During one visit, Kitty’s priest saw that she kept having more pain, and he finally said to the hospice nurse, “She really does seem to be uncomfortable.” The nurse came in and took Kitty’s face in both her hands; she held it close and whispered in Kitty’s ear, “Sweetheart, I won’t let the pain get the best of you.” The nurse stroked Kitty’s forehead, gave her a kiss, got a syringe, and gave her an injection.

In her last days, Kitty was in and out of consciousness. She recognized friends, but she was on heavy medication to control the pain from an infected foot.

Several friends from Kitty’s church, as well as the woman who had cleaned her house faithfully for several years, visited her regularly during the last week. All three priests from her parish came out to be with her. Kitty was seldom alone during this time. One friend brought her dogs out to visit, so that Kitty could have animals around her in her final days. On Kitty’s last day, the assistant priest visited her twenty minutes before she died, and another friend from church was there sharing a letter from a friend who had moved away.

At Kitty’s memorial service, the parish priest summarized her end:

 

This fiercely independent woman in the end had to do exactly what she didn’t want to do. She wanted to die at home, and she did not. She had to give the care of her last days over to complete strangers. But it was a gift for her. Hospice took the things she feared most and made it a blessing. They gave her a feeling of safety and compassion. She died with dignity and peace and grace.

 

 

We were all in the room”: Roberta

    Four days before Roberta’s death, her hip fractured sometime during the night. She had been able to get up and dress each day until this point, and she was conscious and able to interact. After Roberta was admitted to the hospital and prepared for a hip replacement, her kidneys failed, she became comatose, and the family and her physician agreed that she could go home to die. She was transferred by ambulance back to her daughter Debbie’s home late in the afternoon on the day before her death. Debbie narrates the story of her mother’s last twenty-four hours:

 

The day we took her home, before the ambulance ride, I said, “Mom, you’re going home with us.” And she had a big smile on her face, and she had a twinkle in her eye, and she was so happy. She knew that she was coming home. We had everything set up, thanks to our hospice nurse. We had the bed set up when she got here by ambulance, and her nurse was waiting for her. She had a new morphine pump for her.

We sat and visited for a little while with Mom, and we talked about Chalice of Repose. And my sister and I kind of decided that we would try the Chalice. We decided to do it right then. So we called and made arrangements for them to come over that evening. My husband, and my sister husband, were upset with this decision. They felt that it would upset Mom. That it would be a signal to her that she might be dying, and they couldn’t deal with this. But we went ahead and decided yes, we could try this. The Chalice people assured us; they told us exactly what they would be doing, and we were very comfortable with this. They assured us that if she was in distress with this, they would leave.

So we set them up, and they started playing. And Mom was quite shocked, I’m sure. She jumped, and she was making very strange hand gestures. But as time went on with the music I could see her relaxing, and I could see this transition in her, and it was very, very soothing, very lovely for all of us. . . .

And all of a sudden her bird decided that he likes this music. Now, he never sings past 6:00 at night. And he was just out here singing up a storm while the harps were playing in Mom’s room. We had a house full of people, too. My two sisters were here, and my grandson, one of our sons, and our husbands, my sister’s daughter and her children. Everybody was here. And Betty [Roberta’s day care nurse] came in. They were all in the room. We were all in there, and it was just beautiful. And then our minister came and listened to the last part of it. Someone had called him to let him know that Mom had come home. . .

So when they left we sat and visited for awhile, and my sister and I kept taking turns and checking on Mom, and there was a great peace about her. . .

Then that night I got this harebrained idea. I thought, “Why do we think that her kidneys are failing? How do we know for sure? Why don’t we give her an IV? Why can’t we give her some kind of something to make sure that she’s you know, not shutting down?” I really wanted to do everything I could to help sustain some more life in her. And I was having a real difficult time adjusting to this possibility that she wasn’t functioning, that I’m not doing anything to help her. It was hard. And I worked with this all night. My sister and I took turns and sat up all night with Mum. . .

And I thought, okay, I need to ask hospice about this. So when the nurse called the next day and said, “How are things going?” I said, “She seems to be fine, she comfortable, but I need to talk to you,” I said. So she came about 6:00 to 6:30 in the evening. I said, “Come on, I want to visit with you.” And I shared with her my thoughts. “Can we give her an IV? Can we try and make sure that her kidneys haven’t shut down? What can we do for her?” And this dear person said, “Yes. Yes, we can do that.” Not telling me no, we couldn’t do that. I knew that this was the answer. But she said, “Yes, we can do that. But let me tell you a little more about what’s happening to her.” So I listened to her, and she carefully explained things to me for 15, 20 minutes that made me understand this process that was happening to Mom and why it was important for me to let go of her. And I told her, I said, “I’m having a hard time letting go. I can’t let go of her.” And she says, “Well, this is difficult for your mom, too.” . .

And she was very, very kind, and I felt a lot of compassion from her and from her explanation of what was happening to Mom’s system and everything and medically why it would be harmful for them to start giving her fluids. And how if they started pumping fluids, her system wouldn’t absorb it and she would get all this fluid back into her again, and it would cause more problems and I . . . I could understand that. . .

I couldn’t even begin to relate the dialogue. It took about 15, 20 minutes. I looked over to my sister, and I said, “Okay, I can let go of her now. I can let her go.” I asked my sister, “This is okay with you?” And she said, “Yes.” And I said, “Okay, how much time do you think she has?” And she said, “I’ve seldom known people to live like this, dehydrating, for very long. I would give your mom through the weekend maybe, at the most.” I felt better knowing that I could release Mom. . . .

When this conversation ended, Deanna went in the bedroom, and she came out and she said, “Oh, we’re losing Mom. Come quickly.” And we went in there, and the hospice nurse could not believe the change in her breathing. I mean, it was just incredibly different. We had just been in there a half hour before and she was fine. She had intervals of breathing, holding her breath, and then would start breathing again. . . . .

And so we realized then that it was a change. And then my niece showed up. She has four children; two of them were with her, one of them is a little 2-year-old, and one is 3. And they came in and held Grandma’s hand. And the little girl cried a little bit; the little boy held her hand and said, “Bye-bye, bye-bye.” We don’t know why. . . .

And it was just an incredible thing that was happening. And we knew right then we were going to be losing Grandma. And so I called my sister at the lake and get things, and [that] was an amazing thing. Because my sister just lost her husband a few years ago, and the pain-—it was so painful. . . .

So then the hospice nurse suggested we could call my sister and let her talk to Mom. And so we did this. I called her at the lake and told her that we were losing Mom, and---and would she like to say something to her? And we put the phone to Mom’s ear, and she talked to her on the phone. It was wonderful. Then we called Rick in Kentucky, and he talked to Grandma on the phone. And then we called her other grandson in Texas, and he got to say good-bye to Grandma. She definitely had made a decision to leave us. .  .

We were all in the room, holding her hand, telling her we loved her, telling her, thanking her for letting us be a part of her transition, which was so beautiful-—to see her peaceful and to know that it was okay to hold her hand and feel this great powerful comfort of doing this. It was-—it was beautiful. We all felt this; every one of us felt this. Every one of us was so touched, celebrating and thanking her for her life. And it was truly most beautiful. She was so light there, just like a little feather on the breath. . .

And we felt a great peace for her, and we felt so much love and warmth that time in the bonding that we all had with each other. It was just incredible. . . .

So we stayed with her for a few minutes, and then this wonderful hospice nurse said, “I need to do some things here, some work. Would you like to stay with her or would you like to wait till I’m done?” And I said, “You go ahead and do your work, and we’ll be back.” And she came and got us, and we went back into Mom’s room and she had fixed her up so beautifully. She had her hands folded, and she had her bed made up. It was just a beautiful gesture, the things she’d done. She made Mom look so nice, and we were so happy that the nurse could be here with us and be part of this.

 

Debbie: It was beautiful, a beautiful feeling to be with Mom and to be . . .be a part of her passing. It was about 9:30 at night. We kept her till 1:30 in the morning.

 

Researcher: You didn’t feel the need to call the mortuary right away and rush her out? How did you know that?

 

Debbie: I just felt I could do anything I wanted to do. I just didn’t want them to come until we were ready to let her go. We talked, we visited, we went back in and visited with her.

 

 

Final Days and the Subculture of the Dying

    Of all the features that characterized the subculture that surrounds terminally ill people, issues of control, social networks, comfort, and growth seem to be most salient during the final days of life.

     Although dying people do not have much control as life ebbs from them, their caregivers and families—-who have teamed with them throughout this period—-still struggle with an effort to maintain their choices and control and to honor the wishes of the dying. The eight caregivers present different pictures of this loss of power and control.

 

     Carrie, who had been “joined at the hip” for a year with her dying son, Dennis, expressed her sense of loss because she was not present with Dennis when he died. “With all the time I invested, I wanted to be there.” Missing this last moment affected her deeply for months after Dennis’s death. She had been in control up to that timed now felt that she was not.

 

     The only other caregiver who was not immediately with the patient when he died was Sandy, Ralph’s mate; she had reed to her own home from Hospice House, although she knew he probably would die that evening. Unlike Carrie, Sandy had no regrets about not being with Ralph in his last moments, noting that he probably wouldn’t have known he anyway. Sandy appeared to feel no loss of control from missing Ralph’s last breath. She felt she had said her goodbyes earlier and could do nothing more.

 

     The other dying patients were surrounded by family or friends at their moments of death. The shrunken social network that often accompanies terminal illness suddenly expanded in each of these cases. Barbara, Sharon and Roberta were surrounded by loved ones of all generations. Walt, who had close family throughout his illness, continued to have them with him to the end. Kitty, who had no family, was attended to by her many church friends. The decreased social networks of terminally ill patients were reversed, in a sense, as people came deliberately to gather round the dying person.

 

     One aspect of the social networks surrounding the participants who were dying is worth mentioning: They deliberately included children and pets. In addition to close family, several of our participants spent their last hours in the presence of young children and beloved animals. Irene describes how Barbara was transformed by having a baby near her; Roberta’s great-granddaughter was brought to visit with her the night of her death; Walt’s grandchildren lived next door and were there during his last days. A friend of Kitty’s brought her own dogs to visit Kitty at Hospice House a day before she died, knowing Kitty’s deep love for animals. Walt’s dog stayed in his bedroom until his death. And Waldo, Roberta’s pet canary, burst forth with song when the Chalice of Repose played for her.

 

     Personal growth is apparent in caregivers and patients in these accounts. Barbara’s sister Irene explicitly describes Barbara as finding peace after the long struggle and enjoying her last days of being cared for as she waited to go over to the other side. For others, growth at the very end toward accepting death and finding meaning is more evident in the family itself. Descriptions of the final days of Walt, Sharon, and Roberta offer evidence of growing family unity and the making of meaning. Some families--notably Walt’s and Roberta’s--said good-bye opening as the person was dying, even calling children and grandchildren on the phone to be part of the farewell. [271-289]

  

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