I imagine yesterday’s NYT Magazine article, "Will We Ever Arrive at the Good Death?," will spark many blog responses. So, let me toss mine into the mix. This will be a more personal post, drawing on my experience with my mother’s death this past spring.
The line that caught my eye, and which I thought captured end-of-life struggles, was this:
During the long and public agony over the death of Terri Schiavo, debate centered on the right to make end-of-life decisions. But underlying the political posturing was a shared assumption that was barely acknowledged: the belief that dying is something over which we have some control. This death-denying culture has led to a system of care for the terminally ill that allows us to indulge the fantasy that dying is somehow optional.
It is true that we cannot control death, not in the ultimate sense of avoiding it. But it is also true that we can limit some of the more difficult aspects of death – the pain, the fear, the helplessness – and even a marginal gain in comfort at the end, for everyone concerned, is good.
I have found comfort over the years in Chuang Tzu, precisely because he tells us the we cannot control death but, rather, we must give ourselves over to it. This is just one of his many reflections:
This life we’re given comes in its own season, and then follows its vanishing away. If you’re at ease in your season, if you can dwell in its vanishing, joy and sorrow never touch you. This is what the ancients called getting free. If you can’t get free, you’re tangled in things…
My mother could not get free, and some of that was my fault. She had cancer. We did the chemo route and that did not work. The second round of drugs, in particular, really sent her down: her hair fell out, she was incontinent, sick. She was living with my sister and her sister, who has some advanced health problems of her own. When things got really bad for my mother, the household basically fell apart. It had long teetered on the edge of disaster (long accumulation of standard dysfunctional family issues), and my mother’s turn for the worse tipped it over into near squalor.
At one point, a visiting nurse came to see her and, sizing up the general situation, called an ambulance to have my mother taken to the hospital because the house was a health risk to her.
That was when I intervened. I lived three hours away by car and had been traveling weekly to take my mother for her chemo treatments and pitch in as I could. But when the nurse essentially said that the home situation was untenable, I demanded that they all move to my town, where I could help manage the household and get my mother better home-based care. It was agonizing all around: my mother had lived in the house for 48 years, she did not want to leave it; but I could not let her stay in a situation deemed by local health authorities as too risky.
The move happened last Fall. I had found a nice house, had overseen minor renovations and painting and cleaning, and had arranged for a home health aid. It was clean and bright and safe and healthy. My mother hated it. For months, right through the holidays, she did nothing but complain that this was not right or that was out of place. I brought my kids, her grandchildren, to see her and that took some of the edge off of it for her. But basically she was miserable.
A good part of her misery was rooted not in the move ("I lost my house" she would wail) but in her fervent denial of her terminal condition. By the time she got into the new house, we had stopped the chemo. Slowly but surely her hair came back, thick and wavy. She could get up and move around better. But she would not talk about or face up to the fact that she had less than a year to live.
I had Hospice come in. They were great. Whatever the contradictions pointed out in the NYT piece, the Hospice people were a saving grace. None of us – my sister, my aunt, me – really knew what to expect with the process of dying. The Hospice people did know, and they took us through it graciously and peacefully.
Any time any of the Hospice workers raised the question of funeral home services with my mother, she sharply shut them down. "Why do they only want to talk about undertakers?" she would snap. So, we did not talk about them. I made the arrangements myself.
She was angry and frustrated and resistant right to the end. This should be little surprise since one of her favorite poems was "Do Not Go Gentle Into That Good Night." She did not go gentle. And, in a way, that was a shame because we could never talk about the end, we could never just sit down and confront it and find some way of coming to terms with it and say what we had to say in the face of that finality.
She got out of bed and came out to the living room that last April Sunday to see my kids, for what turned out to be the last time. On Thursday she breathed her last, at "home," in her bed, with her sister and me right by her side. She did not suffer the terrible pain that many cancer patients do. She was comfortable, and clean, and safe.
It seems like a good death, and, with the move, I was able to create certain kinds of conditions for it – seeing the grandchildren for the last time, avoiding the hospital (which was her wish), surrounding her with her favorite possessions and her family at the very end – and Hospice certainly enabled that.
But, she was never able to get free. And that is probably something beyond hospital and Hospice and all the rest. But it may be something we can control. Just looking square into the face of death and seeing it as the inevitable turn of the season and moving with its vanishing away. That is something we can do for ourselves, if we can just get free of our fears.
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