Many people, I’ve found, avoid talking about — or even thinking about — what happens at the end of life. I’d say that they also avoid discussing end-of-life care. It’s uncomfortable, it’s disturbing, and it’s emotional. What was once a matter of fact, faced quite naturally, and handled at home became something we distanced. Death took place not at home but in hospitals or nursing homes, and thus divorced from what for hundreds of years — thousands — was part of everyday life. Instead of happening in familiar surroundings, with loved ones around, it happened in sterile environments. We do not ask our loved ones what their thoughts are; we do not ask what their wishes are. We don’t talk about our own thoughts and wishes, either.
That distancing has been our loss, not our gain. And our failure to face the end of life conversations means that too often we are unprepared for that which happens to all of us.
Perhaps my attitude is different. Our family never “protected” its children from death. Though we certainly weren’t face to face with it, we knew when grandparents were ill and dying. Between 4th grade and 9th grade, I lost a great-grandmother, a grandfather, and a grandmother. I also lost a classmate when I was entering high school, and while I wasn’t that close to her, I well remember going to her funeral. When I was in college, my great-grandfather died. My father came close to death after surgery.
But it was the mid-1980s that we faced something quite different. When my maternal grandmother was in the hospital once, near death because her C02 levels were high and 02 levels were low, she was well on her way to sleeping her way to death. She’d been clear to her doctor and to us that she didn’t want heroic measures. My mother and I were in the hospital room with her, ready to let her drift quietly into a painless death. A nurse refused to let that happen. Instead, she told us, if we didn’t wake her up and keep her awake, she’d bring in others who would. She didn’t care what my grandmother’s wishes were. She didn’t care what the doctor knew. So my mother and I stood on either side of the bed and kept my grandmother awake. She hated it. She blamed us vocally. She did not want that to happen.
She lived for another couple of years, much diminished both in body and in spirit, and it was not what she wanted. My mother and I vowed that we would never do that again.
Less than 10 years later, my mother was dying. She was not one who talked about her thoughts on dying (at least, not about her own death). My dad and I talked a great deal about it, though, and when her dialysis was no longer really working and she was beyond speech, we agreed that it was time to stop dialysis. I’m sure he talked about it to my siblings as well. She was lingering, until the day my brother came in from Florida, held her hand, brushed her hair, rubbed her feet, and kissed her. She died that night.
By that time (July 1993), my brother, Phil, had already had cancer twice –colon cancer at 26, and then a melanoma on his arm by the time he was 33. Two years after Mother died, Phil had a new cancer — the melanoma had emerged in his brain. Radiation and surgery were “successful” in that he lived a bit longer, but neither he nor I was under the illusion that this was permanent. Not that we talked about it. Not at all. Yet when the fourth occurrence was diagnosed in summer 1995, I was the only one who knew what he’d been told at Sloan Kettering in New York — and what they’d told him, that the experimental treatment he would soon undergo would, at best, extend his life a matter of months. I was sworn to secrecy, not to tell Dad. Phil and I had this conversation over the phone, not face to face.
Phil had told me, face to face, about his original cancer in 1982. When I began to cry, he quickly ordered me to stop and told me I’d have to be strong for Mother and Dad. He did not want me to be emotional. That was that. I learned to talk about my own feelings with friends. He never talked about his own feelings. He did, however, lash out. He was frequently angry with me. For a long time I was so hurt and angry in turn. It took me years to realize that I was the safe place — maybe the only place — where he could express the anger, albeit not in a discussion but in lashing out at me.
Yet by the last months of his life, he was explicit in discussing with me what he wanted after he died — not a funeral service, not embalming. He wanted cremation and he wanted to be buried next to Mother in the cemetery in East Texas near our farm. Every weekend, shortly after I arrived at MD Anderson, and whenever Dad was out of the room, Phil drilled me on this.
Where we’d had to extrapolate Mother’s wishes from our experiences with her mother’s illness and death (no direct discussions for Irene!), Phil was direct in ordering what he wanted. He didn’t give up easily; he kept fighting. The day after Christmas, his doctor told us that the treatments had worked, but not enough, and that there wasn’t really any point in continuing, but in going home and spending our time together. By that time, Phil was often not clear in thought, but he was concerned — not about himself, about whether the doctor might need “more numbers” for his lab results. I was the one he asked this of, not the doctor. When I answered “I think that he has all the ‘numbers’ he needs, Phil,” my brother then asked me “Now what, Cheryl?” Dad was right there. Phil’s fiancé was right there. But he asked me. I was once more “Cheryl Lynn” to him — and he hadn’t called me that since he was maybe 8. I glanced at Dad and at Dr. Papadopoulos, and at Darcy, then looked at Phil and said, “It’s time for us to go home and spend what time we have together there, honey.” He simply said “OK.”
So after talked to the doctor in the hall about hospice and what to expect, I left for Egan while the doctor made the arrangements. I went to Egan. I dismantled and moved a double bed and moved the mattress/foundation set. I vacuumed. The next morning, a hospital bed was delivered and set up. When the ambulance arrived, and Dad and Darcy arrived, the hospice people also arrived. Our new experience had begun.
From December 27, 1995-January 4, 1996, we cared for Phil at home, with great help from hospice. They were there daily, often several times a day. He could talk for a few days, and then had a stroke (fluid build-up in the spinal column, untapped and unrelieved, built up and resulted in this, which we’d been told would happen. That happened a couple of days before he died. But regardless, we continued to hold his hands, stroke his face, kiss him, talk to him, even sing to him. One of us sat in a chair by his bed. One always slept on a cot in the room. The third would sleep in a bed in another room. My sister, Kay, came in when she could, but wasn’t there when Phil died.
That was a very quiet event. I was sleeping on the cot. Dad woke me up, and he and Darcy and I stood there, around him, touching him, kissing him, telling him he was loved and that it was alright to go, that we’d be alright. From one breath to the next, he simply left us.
Then Dad was on his own. In the following years, he aged, he mourned, but he kept going. We talked a lot about Mother and Phil, and about their illnesses and deaths. When Dad was 80 or so, he had stents, and soon had to have a triple coronary bypass. As we prepared for that, he was very clear-eyed in planning. We visited our attorney. Dad signed a durable power of attorney, allowing for medical decisions, and made sure that I knew what he wanted if I had to use that power of attorney. He signed DNR papers in the hospital. I didn’t have to use it then.
Dad was very ill in the last months of his life. He was in a nursing home for physical rehabilitation after surgery. He came home; he died two weeks later. By the time Dad was dying, we once more called for hospice. Kay and I were there together. The last day he was alive, Kay was out running errands for a few hours, and in that short amount of time, Dad was in great pain and no longer cognizant of where he was. He talked to his mother, often directing his remarks to me. “Mama, can we go home now?” Over and over. And the pain couldn’t be helped with the pain medications we had. I already had the morphine, and what had worked that morning simply no longer did. Hospice helped when I called, and through a couple of hours, kept calling to guide me and support me. The morphine dosage had to greatly increased, but finally (several hours later) he was comfortable and no longer conscious. Kay came home later and I told her what had gone on. I went to bed about 11:30, and she sat up. A couple of hours later, she woke me, crying. She’d fallen asleep and when she awakened, he was already gone. I came in and confirmed that. I got her to call hospice, and then we called our neighbor Charles and our friend Billie. They came to be with us. The hospice nurse came and was wonderful.
There’s a major news issue in the U.K. now about the Liverpool Care Pathway, designed to allow patients a dignified end-of-life experience in hospitals and nursing homes, As I’ve followed this in recent weeks in The Times of London, it’s been clear that what was designed isn’t what has been followed. So many horror stories abound about utter neglect and outright inhumane treatment. Indeed, chances are that within months, the Health Secretary will probably recommend the termination of the LCP.
What a horrible example of end-of-life care. Hospice as we have experienced it has been the antithesis — it has been caring, supportive, and dignified, even spiritual. This is the ideal.
Kay and I continue to talk about what we’ve experienced, and we talk about what we think and want for ourselves. That’s not morbid. Not at all. Rather, I think it’s comforting, healthy, and wise.
As I was writing a draft of this earlier today, I ran across a CNN story about Scott Simon, host of Weekend Edition Saturday for NPR, who tweeted as his mother was dying this past weekend. As I read about it, and read his tweets, I found myself weeping in memory. I know what he was feeling, and what one bloggist wrote: “We do not talk enough, I believe, with each other and with our parents about the end of life, especially when there is still time to discuss some of the issues involved.” Such truth — and such a need for openness.
Scott Simon’s tweets are worth reading. He was allowing readers to be there as he participated in the most meaningful of experiences.
So I find myself saying to everyone : Don’t be afraid. You need to know what to expect, and what to plan for. Will it be difficult? Painful? Probably. Worth it? It certainly has been for me.
I know that not everyone can have these conversations. Our culture certainly doesn’t encourage it. I can only say that I have been enriched by it. I have wonderful memories of precious moments that I cherish. Do what you can, though.
And I remind myself — I’ve made a will. But I need a power of attorney, one that allows someone else to speak for me if I can’t.
My dad would expect no less of me.
This week I need to make that phone call.