Braver to choose or to wait?
Saying goodbye is often too difficult. Even when we know the other person desperately wants to leave. We haven’t the right to say: Don’t go just yet, we’ll miss you. It’s their life and they know when it’s time.
A friend died this week. It was her choice. I didn’t know her as well as some others, but I liked her enormously. Her eyesight was failing, yet she regularly walked outdoors alone. Sometimes we went together. But she seemed to be fearless. Macular degeneration had made it impossible for her to recognize faces but she had a good ear for voices. She had assured me that she was safe walking outside because she could see shapes and movement. I knew she was brave.
About six weeks ago I found out just how brave she really was. She had told only a few very close friends that she had been diagnosed years earlier with Alzheimer’s disease. Most of us had no idea because she seemed to be so with it, almost always upbeat and good-natured.
When her husband lost his sight, they had moved into the assisted living wing of our building. After he died, she decided to stay on there. She told me it was just too much trouble to move back into her apartment and she was comfortable there.
Once a week she would join our balance class, where she could do almost everything except catch a ball. And often she would eat dinner with friends in our dining room. During the summer we often walked after dinner, even though she couldn’t enjoy the sunset as I did. She said she liked the soft feel of the evening air.
So I was shocked to learn from her closest friend that she had decided to end her life. The tipping point apparently came when she realized her disease had progressed to the point that she no longer could remember her husband, what he looked like and the things he had said to her.
She talked it over with her doctor although she didn’t want him to assist in any way. She would just stop eating, she said. After the first week, her children came to visit for four days and then as the weeks went on they came back again. Two flew over from the coast and the one who lives about 30 miles away was with her most of the time. She told her friend it was wonderful to have them all there, almost like being able to enjoy your own funeral.
Before we knew about Alzheimer’s, older people suffered many forms of dementia and were called senile. Sometimes they had strong constitutions and lived for years. The trouble was that often their families had them judged mentally incompetent, particularly if they were wealthy, and a court-appointed conservator would take control of their estate.
On the whole, lives were shorter then, medical interventions rare. When doctors and hospitals were fewer and farther away, people were allowed to die at home. Surviving relatives tell me that as death neared, their elderly parents simply stopped eating, instinctively hastening the process.
Now, the road to a peaceful exit seems to involve avoiding hospitals and nursing homes, where the mission is to extend life regardless of its quality. It takes careful planning, attorneys, living wills, advance directives, signatures of all living relatives, just to allow one to die in peace. Programs such as POLST and Comfort One can help to ensure that extraordinary measures are not taken. Hospice workers, who bring care to those patients expected to live no more than six months, warn them not to call 911 if they wish to avoid emergency rooms and heroic interventions. Their mission is to keep people comfortable, pain free and at home.
While laws vary among states, physician-assisted suicide is still illegal in many, one notable exception being Oregon. And people of many faiths regard hastening death in any form to be sinful or “against God’s plan.”
Alzheimer’s patients usually don’t qualify for hospice unless they also have a terminal medical condition. One elderly resident of strong constitution, who was struggling with her memory more than four years ago, lives on, still ambulatory but not recognizing anyone, robbed of both her past and her future.
My mother lived almost a year longer than she wished. Every time I went to see her in the nursing home she would say: I can’t believe I’m still here. She was Catholic and wanted to go to her “just reward” but they wouldn’t let her. After two strokes, my older sister told me her life was over and she was just waiting to die. “Don’t worry, I’m not going to harm myself,” she said. But she worries if she were to suffer another stroke, or if something happened to her caregiver, that she would wind up confined to a nursing facility. She is terrified of that prospect.
I’m wondering how a society so deeply divided by opposing views can come to a more enlightened attitude about death and quell the fears of people who are approaching it. I supported my friend’s choice and marvel at her determination. But I worry about those Alzheimer’s patients who are unable or unwilling to choose while they still can.