You'd Better Not Die or I'll Kill You

by Jane Heller

  Last weekend my friend’s ninety-seven-year-old father died. He had dementia and other assorted ailments, and then he took the all-too-predictable turn for the worse by falling and breaking his hip. My friend and her brother decided their dad had been through enough and instructed the hospital to administer morphine and allow him to die peacefully.

  “The nurse told me he’d be able to hear me,” said my friend, “so I spent an hour with him telling him what a wonderful father he’d been, how much I loved him, and that it was okay to let go. It was a beautiful experience.”

  Two days later another friend’s eighty-five-year-old mother died. She had a stroke, wanted every possible kind of treatment to stay alive despite the prognosis that she would never fully recover, and languished in the hospital for weeks before finally succumbing to pneumonia.

  “My mother was the opposite of the ‘pull the plug’ type,” said my friend. “She liked to be in control of everything, and she died miserably.”

  Two deaths. Two different reactions to death.

  There is no one way to die or one way to feel when someone dies.

  Michael’s father died at fifty-eight. They’d been estranged for two years before his dad’s diagnosis of liver cancer. When the call came from his sister that death was near, Michael went to the house one last time, but his father died before he got there. He regrets that they couldn’t make amends while his father was alive.

  Michael’s mother died at eighty. She had recently moved from New York to California to live with Michael’s brother. She took a nap one afternoon, had a stroke, and died in her sleep. Everybody in the family said, “That was so like her. She wouldn’t have wanted to be a burden to anyone.”

  My father died of brain cancer, as I’ve said, but I’m not exactly sure when or how since I was only six and nobody talked about death in the 1950s—not to children, in any case. But here’s how my little-girl mind remembers it.

  My mother asked me to come into their bedroom to say good night to him. She had never done that before. I tiptoed in, because I always tiptoed once my father became bedridden and was said to be “resting.” When I approached the bed, I couldn’t tell if he was awake or not. His eyes were open, but they didn’t seem to register, and he wasn’t moving. I wondered what was up; the occasion seemed momentous somehow. My mother suggested that I take hold of his hand, which I did. She also suggested that I kiss him good night, which I did, although it felt creepy that he wasn’t acknowledging me at all. And then I tiptoed back out.

  Was he dead that night? Did my mother want me to see him one last time before they took him away? Or was he in the throes of dying, soon to breathe his last breath?

  My mother doesn’t remember, so the questions remain unanswered for me. What I do know is that there was a flurry of activity around our house soon after the good-night kiss (a funeral? a burial? people stopping by to pay condolences?) and that Grandma Rose came to live with us for a while.

  You would think that the experience of having grown up around cancer, as well as being married to a walking medical chart, would have turned me into the sort of person who constantly takes her temperature and owns a blood pressure cuff and responds to every ache and pain with dread. Not me. I never once say to myself, after hearing about somebody surrendering to this malady or that disease, “I sure hope I don’t get that.”

  And it’s not because I have some grandiose notion that I’m invulnerable to illness. It’s just that my brain goes straight to the catastrophe, the melodrama, the randomness of death—the sort of fatality that makes it onto the eleven o’clock news.

  Here are the kinds of deaths I picture for myself:

  ∗ Death by plane crash (If we were meant to fly, we’d have wings.)

  ∗ Death by lightning (I can never remember if we’re supposed to take shelter under trees or run from them.)

  ∗ Death by my car going over an embankment on a rainy night, by my car being hit head-on by a driver who was either drunk or texting, by a large object tied to the roof of the car in front of me that comes loose and slams into my windshield, decapitating me (If I’m behind a car with a mattress, a chair, or a kitchen sink strapped to the roof, I change lanes.)

  ∗ Death by a home invasion (I’m thinking of something along the lines of In Cold Blood.)

  ∗ Death by drowning (I believed my mother when she said, “Wait forty-five minutes after eating before you go in the water.”)

  ∗ Death by elevator (A cable snaps and I plummet twenty-five floors.)

  ∗ Death by mauling from a pit bull (I know. There are those who will say, “Oh, but they’re such friendly dogs.” Tell it to someone else.)

  ∗ Death by admiring a friend’s view (I am led through the French doors of someone’s posh Manhattan high-rise apartment, onto their terrace overlooking the city, and am sent hurtling over the railing—by a gust of wind or the friend’s vigorous tap on my back—only to smash into tiny pieces once I hit the street and be run over by a taxi.)

  Yes, I have an active imagination, so the possibilities are limitless. The point I want to make is that The End comes when it comes, and sometimes it’s out of the blue and sometimes it’s expected and sometimes it’s quick and sometimes it’s lingering and sometimes it’s tragic and sometimes it’s a relief, and sometimes it requires a heavy-hearted decision made by a caregiver.

  Here’s how some of our caregivers remember the deaths of their loved ones.

  Yudi Bennett: “The day Bob died I waited until they took all the tubes out before bringing Noah, who was eight at the time, into his hospital room. Noah went over and took out the latex gloves they keep on the wall. He put them on and started massaging Bob and told me he was going to make him better. Every other time Bob had been in the hospital, he’d gotten up and come home, so Noah wanted him to wake up and come back this time too.”

  Linda Dano: “Frank knew when the end was coming. He said about a week before he died, ‘Sit down. I want to tell you something. I’m not afraid to die as long as I know you’re going to be right there with me.’ And I was. His heart stopped twice. I said, ‘Frankie, it’s okay. You can go.’ And he went. And my life came crashing down—a crash I’ve still not recovered from even after almost seven years.

  “I buried my husband on Saturday and on Sunday I found out that my mother had stopped eating. I drove up to the nursing home in Connecticut and I looked at her and said to myself, ‘She’s done. She needs to go.’ I said to the doctor, ‘I don’t want you to force feed her. I want you to give her morphine.’ I came back with people very close to me to say goodbye to my mother. She was very out of it but peaceful. Every once in awhile she’d look at us and close her eyes again. My friend Vivien was wearing a zebra-print scarf that I had designed for QVC many years before. As she and I were leaving, she kind of threw it over her shoulder and my mother’s eyes opened and she went, ‘Oh, that’s nice.’ Those were her last words. We all laughed because it was so my mother. Heading towards the light, she stopped to look at a zebra scarf. It’s a memory that I will cherish until I see her again.”

  Victor Garber: “I don’t think you’re ever really prepared for the death of a parent. It took me a long time to get over my mother’s death. I would find myself breaking down months afterward whenever there were reminders. But I was very fortunate to be with her when she took her last breath—and my dad too. That was kind of a gift. And my brother was there. My mom wasn’t really speaking then, but I think she said something like, ‘It’s time for me to go.’ ”

  Karen Prince: “Andy wasn’t even in bed until his last two days. In fact, we went to a party on the Monday night before. He wasn’t in great shape or anything, but he loved this fellow who was having the party. On the way home he wanted me to stop and get dessert, so I took him into the supermarket and he picked out éclairs. By Friday evening at seven he had passed away. The hospice nurse had been there in the afternoon and the chaplain had done a little ceremony for all our family and we all got to talk to him and
say whatever we wanted to. But it wasn’t a peaceful passing. He sat upright in bed just before he passed away and was gasping for breath. But then he closed his eyes and I told the kids it was over and he was gone.”

  Cissy Ross: “It’s a biggie when you’re in charge of making those life-and-death decisions, even though I was completely confident that I made all the decisions my mother would have wanted. She was strictly business; she paid for her cremation when she was in her fifties. But it doesn’t make it any easier when you’re at the hospital and you have to say, ‘No. I’m not doing anything.’ Watching other people go through the end is a real consolation when it’s your turn. I’d seen Jackie and her husband do it. Now it was my turn to sit in the room with my mother. I talked to her and tried to keep it fairly tranquil. It was not the dirge I’d expected.”

  Toni Sherman: “After my mother was diagnosed and came home with hospice, she lasted about three months. It was grippingly hard. She never spoke about death. And she never said, ‘I’ve loved you so much, and the idea of leaving you is so painful to me,’ which is what I wanted to hear so badly. The night she was dying I finally started crying. I’ve always had conflicted feelings about my mother. I couldn’t say, ‘I love you.’ The most I could say was, ‘You’ve been such a good mom.’ And she said something to the effect of, ‘You’ve grown up well.’ ”

  Diane Sylvester: “From the day I was born my mother brainwashed me to the fact that I always had to go beyond the medical procedures, do more than necessary to stay alive. Every time somebody would pull the tubes she would say, ‘Oh, they shouldn’t have done that!’ So it was harder for me to make those decisions when it was her time.”

  Jackie Walsh: “When my mother had her stroke, the doctor said, ‘What do you want to do?’ I said, ‘What are her chances?’ He said, ‘We can do as much as you want but she will probably never be able to speak or eat or feed herself.’ I said, ‘That’s no quality of life.’ She was just a couple of months shy of her ninety-eighth birthday. She had her quantity of life. I lay down in bed with her and told her what a good mother she’d been and how it was okay to go. She had fought long enough. An hour later she was gone.”

  How can we make death less of a struggle for those who are dying? How can we make death less heartbreaking for those who are left behind? Is there anything positive to say on this matter—anything at all?

  Yes, I think there is. When I was a kid, death was this deep, dark, scary subject nobody wanted to talk about. Now, people not only talk about it but they prepare for it—the caregivers, the patients, and the medical establishment. We know what to do when somebody is about to die. We have resources and options and compassionate professionals with specialties that didn’t exist when my father was sick.

  I interviewed two of those professionals for this book. Each woman in her own way has made it her life’s work to cushion the blow of losing a loved one.

  With over twenty years’ experience as a nurse in critical care and pain management, Susan E. White is now the palliative care manager at Santa Barbara Cottage Hospital. She deals with end-of-life situations with authority and grace, and I enjoyed our conversation.

  Jane: For the uninitiated, what, exactly is “palliative care”?

  Susan: Its purpose is to enhance the quality of life for people who have chronic and life-threatening illnesses by providing symptom management and psycho-social support to the patients and their families. We see patients in the hospital, and our nurses are certified in hospice and palliative nursing. We have a physician with us every day. We have social workers that see patients in the hospital and do follow-up phone calls to the family for a year after a patient dies. And then we have a nondenominational chaplain too. Basically, we’re a consult service. The attending physician—the surgeon or the medical physician or the resident—lets us know what the patient or family need and we provide it.

  Jane: I’m still not clear about the difference between palliative care and hospice.

  Susan: Hospice is tied to a diagnosis or a prognosis; people go into hospice if they have a life expectancy of six months or less. With palliative care, you can have a long period with full treatment. We often get referrals from the oncologists for people who are newly diagnosed with cancer because they may or may not be cured, so we develop long-term relationships with these patients. We get to know them and their families. We get to know what their needs are in terms of symptoms and we make recommendations for how to treat those symptoms.

  Jane: Sounds like you provide a great service.

  Susan: We do. We’ve developed what’s called “comfort care,” and it’s when there is no longer anything that can be done to treat the patient who says, “I don’t want any more chemo. I don’t want any more surgery. I’m ready to go.” We focus on doing everything we can to get them comfortable. We make sure they’re in a private room, that the family is there 24/7, whatever we can.

  Jane: How many hospitals around the country offer palliative care?

  Susan: There’s a national organization called CAPC, which is the Center to Advance Palliative Care. They have developed a registry, and there are hundreds and hundreds of programs in it. Their website has a national map and people can go there if they want to know if there’s a program in their area.

  Jane: What’s the typical way these end-of-life decisions are made? Is it the doctors that say there’s nothing more they can do? Is it the patient that says enough is enough? Or is it the family that says we don’t want our loved one to suffer any more?

  Susan: It’s different in every case. Sometimes, the patient has had a traumatic brain injury and is brain-dead. Then it takes a conversation—maybe several conversations—between the physicians and the family about the fact that there’s really nothing that we can do, that only the machines are keeping the patient alive, that he is gone already. That’s a case when it’s more clear-cut. There are other times when the same thing could happen and the family will say, “I don’t care. I don’t believe you. We’re waiting for the miracle. Keep going and do everything, everything, everything.” That’s very difficult.

  Jane: But I understand their motivation. There must be a lot of conflict that goes along with making such a huge decision.

  Susan: Yes, and we’ve seen a lot of people who have had broken family relationships. They hear Mom is dying and they cannot accept it. They say, “Do everything possible.” And it’s coming from their need to try to fix whatever it is that was broken. But even when you know it’s the right thing to do, there is always a niggling doubt in your mind: Am I doing the right thing? It was the same for me, and I do this for a living.

  Jane: What happened in your case?

  Susan: Two and a half years ago, I asked for palliative care for my father. He had end-stage dementia and was wheelchair bound in a nursing home and had his third or fourth bout of pneumonia. They thought he had a heart attack and they were going to send him down for a procedure, and I said, “Why? He’s eighty-eight years old. Why are we doing this?” He died several days later very comfortably. And then I took care of my mother for the last three months of her life, so I was a caregiver. I can tell you that I have never ever gotten to the level of fatigue and exhaustion as I did taking care of my mom. I couldn’t talk. I couldn’t even put words together.

  Jane: Welcome to one of the reasons for this book. Caregiving is not a walk in the park.

  Susan: No, it isn’t. That’s why we spend so much time talking to families. We get them connected with hospice counseling for anticipatory grief. We get kids connected with grief groups. We try to move them towards acceptance or a decision they can live with. It is a process—a sacred moment—and we have to allow it to play out.

  Jane: How do you stay positive when you’re surrounded by death? Are there moments of joy for you in this work?

  Susan: Oh, yeah. There are the patients that are so miserable with their symptoms, and then we come in and are able to make a huge difference by making them comfortable. That’s alwa
ys rewarding. And then there are the people you remember because they’re special in some way.

  One of my very favorite patient stories involves a husband and wife who were in their eighties. The first time I saw her I thought, Holy cow. She was dressed so inappropriately for an eighty-year-old in this black velvet floppy hat, a jeans jacket, and a little skirt that came to her knees and had pink hearts all over it. They were homeless. He was driving them up and down the coast in their van, and he had been having pain in his shoulders. They got an x-ray and were told it was probably cancer, but they didn’t do anything about it. By the time they ended up here he had severe pain.

  We got his pain under control and it turned out he had widely metastatic cancer and died within a couple of weeks. They had no money, so we were talking to her about what to do. We gave her this little list of the mortuaries and the costs of cremation and all of that. She took one look at it and put it right in the trashcan. She said, “What would happen if I just left him here?” I said, “Well, let me look into that.” We found out that his remains could become property of the county, and they would take care of cremating him and spreading his ashes at sea. I said, “But what are you going to do now?”

  She said, “I have a brother who lives in Oregon, so if I could get there I can stay with him and I’ll be okay.” We got her a taxi voucher to get her down to the train station. She was able—I don’t know how—to have enough money to get on the train and go to Oregon. About two weeks later we got this card from her, and in her big flowery handwriting she thanked us for everything we had done for her and for making the last couple of weeks of her husband’s life as good as it could be. It was very satisfying to be there for both of them.

  Jane: Do you have a better understanding of death since it’s such a big part of your job?

  Susan: I’ve seen the pretty amazing ways people pass. Some people wait until everybody gets there and then they die. It’s as if they have to have permission from everybody. We tell families that sometimes their loved one needs to hear it from you that it’s okay to go. And then there are other patients who wait until they’re alone. Their daughter is hanging in there, staying in the room all day and night, and the minute she goes to the bathroom they die. I now understand better what an incredible mystery death is.