The End of Life

My mother turned 85 on Thursday. Those of us who live in the area got around to actually celebrating it with my mother yesterday (Saturday). The only one who didn’t seem happy about it was my mother. “I shouldn’t be alive,” she kept telling us. I pointed out that she had beaten the odds. The average life expectancy for a woman in the United States is 80. She’s had a five-year bonus. But from her perspective there is not much to celebrate about having five more years. The last five years have been hard on her physically and mentally. And we are all realistic that it’s not going to get much better. She is alive thanks to a dedicated husband, family and generous social benefits. But from her perspective she is existing, not living.

She had periods when she improved remarkably. Her last stay in the nursing home was not a happy one. She had plenty of incentive after she was freed to work on her physical therapy. For a while she was able to get around in her walker unescorted. For a while she was able to ascend into her walker and drop back down to a chair safely. Those days are gone again. If they return they will not return for long. She requires help to do pretty much anything. She can still do a few things for herself. She can brush her hair and teeth and once in her walker she can usually use the bathroom by herself. Since she had part of her large intestine removed she is not always aware when she needs to use the bathroom. As a result she wears Depends all the time.

She is fortunate not to be in a nursing home. Every month though it seems like it takes more and more heroics to keep her out of a nursing home. My father fills in as her 24×7 nursemaid. My father, who is six years younger than her, is in reasonably good health. But it is a wearisome time for him to be constantly on call. His sleep is usually broken several times during the night by requests from my mother to shuffle off to the bathroom. That my Dad can still manage this is nothing short of heroic.

But it is not easy. Naturally Dad goes squirrelly after a while. It’s the nature of us guys not to complain about life’s burdens. And arguably my mother has been doing most of the care giving in their marriage all these years. So there is some karmic justice in my Dad’s heroic efforts now. He cleans up lots of accidents. He helps her with her showers. He drives her to many doctor’s appointments. He shuffles her off to dinner in the dining hall. He keeps their apartment clean. He doles out her medicines. Occasionally though the cracks begin to show. He needs a respite. But there are not a whole lot of volunteers to give him time off. Unless one of my siblings fly in there are three of us. There is my sister Mary in Columbia, who had been doing most of the care taking. Then there is me. And there is my wife, who is unemployed at the moment. I have been all but ruled out as anything other than a momentary caretaker. I am, after all, a male. She had a hard enough time letting her daughters help her out with intimate acts. Although I could certainly do the job competently enough there is too much of an embarrassment factor for her to let me help. So sister Mary occasionally burns some days of her leave and sends my father out to visit his sister, son or daughter.

My wife and I live thirty miles away. But many days it might as well be a hundred. Because we live in the Washington metropolitan area there is this unfortunate fact of life called traffic. To visit them we must cross the Potomac. There is really only one bridge across and it is often a bottleneck. For much of the week the Capital Beltway is in gridlock. A thirty-five minute trip can easily turn into an hour or two each way. Unless visits can be arranged to fit our schedules it is difficult to drop in as needed.

So what is left is a woman near the end of her life simply tired by life. Much of what she says about dying is her depression talking. It would be difficult for anyone not to be depressed in her circumstances. She wants to die and not be a burden on my father. She doesn’t want to be a burden on us either. When family visits she can turn her thoughts away from herself and her problems for a while. But when she talks about her feelings most of the time it is just a cry of anguish from being so immobile, layered on with guilt feelings for being a burden on all of us.

It’s like she thinks we are all hoping she will die. Nothing could be further from the truth, of course. What we want is for her to take some pleasure in life, despite her condition. What we want is for her to enjoy the moments she has left, not to obsess about the end of her life. But at 85 the end of life is no longer an abstraction. It is very real. The freight train is about to run her over. She feels its rumbling. She sees its headlight.

Arguably we her offspring are caught up in a cycle ourselves. We cannot help but love the woman who gave us birth and nurtured us through life. But we too feel some guilt that no matter how much we try to make things good for her that we cannot change her slowly crumbling body. We may perhaps delude ourselves. Does the time we spend keeping her spirits up say more about our impending separation anxiety from our mother than it does say about how we feel about our mother? Are we all playing a complex game of “let’s pretend” that my Mother sees through? Perhaps it would be simpler and she would be more relieved if instead of saying hopeful things we acknowledged the truth. She is a hurting and guilt ridden woman. Maybe it would mean more to say that we understand how sad and hurting she is feeling. Maybe it would be better to say we understand that coming to grips with the end of life is very hard. Maybe it would be better to admit that we too are scared, for we get a preview of our own old age watching her go through it. And it is not pretty.

Perhaps some honesty on her situation would improve things. But we are all playing our assigned roles. And to some extent that includes my mother. How much of the “I don’t want to be alive” is her or some guilt-ridden persona whose script she has read from much of her life is hard to tell. But we too are perhaps acting our scripts: caring son or daughter. I don’t particularly see my mother’s decline as a burden on me. But at the same time there should be no shame in admitting that my life was a lot less complex when they lived 600 miles away instead of 30.

If we live long enough we will doubtless go through what my mother is going through now. We will all have similar feelings of depression, anguish, regret and just being scared about the whole dying process. Even if we are blessed with excellent health until death happens, dying is a fact of life none of us can escape. How do we want to die? I know I don’t want to spend that much time thinking about it right now. But with my mother in her declining years I still have to think about it at midlife anyhow. I do hope when my turn comes that I can find a way to accept that time of life gracefully. I hope I can take pleasure in the day in spite of infirmities. I don’t know if a happy death is possible, but it is perhaps a final goal for which to strive.

One response to “The End of Life”

  1. Excellent and thought-provoking entry, Mark, as always. I think it quite sad when a person is forced to outlive her time, which is what it seems has happened in the case of your mother. She is no longer able to fill the role she felt useful in. She cannot take joy from the manner of life she now has to live. It is a sad thing, and there is nothing you can do to give her happiness, not really. This makes it trying on all of you. My heart goes out to your Dad and your whole family as well as to your mom.


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