Diary of a Bad Year: The End

This will be my last installment under the heading Diary of a Bad Year (two bad years, actually). It is signified by the death of Mark’s mother, from whom he was estranged when he died last year, on November 27. During this last year of her life we never discussed this estrangement, nor did we discuss anything that would force us into a place I did not want to go.

That being said, as she began to decline I did whatever I could to help, eventually moving her out of her house into a fairly nice residential facility, an “independent living” apartment. But once she made the physical move she essentially gave up: her increased dependency and loss of “control”, something she had hoarded all her life to compensate for a bad beginning, shut her down psychologically, emotionally, and physically. Her decline was dramatic: within three weeks of the move she required 24-hour care, and a week later she died.

Dealing first with Mark’s death, and now hers, has forced me to face my own mortality, which I’ve written about previously in other Diary of a Bad Year blog posts. But it has also forced me to think about not just the fact that I will die but how I will die. Not surprisingly, this is a topic that doesn’t generate much discussion in our youth obsessed society, but as we continue to live longer, buoyed by miracle drugs and interventions that may extend our life span but render us mentality and physically bereft, we better start doing some serious talking.

The so-called Death Panels that were a part of Obama’s health care reform package were quickly scuttled after that nomenclature stuck. In some more enlightened European countries there can at least be a discussion between the patient, family, and physician about “end of life” wishes, which is much more substantive than the health care directives we sign in this country saying we don’t want to be resuscitated if we’re already dying of cancer or heart disease. They don’t say anything about what our choices might be if we’re dying of old age and are so infirm that staying alive is cruel and unusual punishment. And the medical interventions that have gotten us to that state are also forms of cruel and unusual punishment. Two years ago I watched my beloved amigo y buen vecino slowly die of complications from diabetes, a stroke, and finally colon cancer. The last six months of his ordeal were in the hospital, where he was kept alive by extraordinary means, until finally he came home and said, “Ya basta, I’m tired and I’m not going back.”

While he had the wherewithal and presence of mind to refuse more hospitalization, that doesn’t really speak to the problem of those who are old and infirm and are ready to die before their bodies actually give out. There was a story in the newspaper the other day about a couple, in their nineties, who decided to stop eating and drinking because, like my neighbor, they’d simply had enough. They were kicked out of their retirement facility for taking this action. Let’s penalize those who actually make a decision to exercise choice, as opposed to default, which drains their—and everyone who loves them—physical, emotional, and yes, financial well being (the focus of Medicare on medical intervention rather than long term care is another story).

What about those who suffer from incipient Alzheimer’s, who are able to see what the future holds and don’t want to go there? What choices do these folks have who want to be the person they are instead of a person who will be unrecognizable to family and friends? Some would argue that as Alzheimer’s progresses you are unaware of the loss of identity, that it is those around you who do the losing, so that makes it OK. I don’t want my children to lose me. I’m their mother, the person with whom they share their most intimate thoughts, worries, and aspirations (caveat: I know there are tons of things they don’t tell me because it’s none of my business), but I am also a person they see in a larger context defined by my work, the way I choose to live, and how I treat them. When Mark’s mother was dying, what she talked about was not the present, her loss of control, what she suffered, or even those of us who were with her. She talked about her life when she was young, her parents, her brother who died in World War II, her youngest brother who she essentially raised, and her life with her husband, who died five years before her.

The image of the native Inuit putting the old person who can no longer contribute to society out on the ice floe remains very vivid to my generation. That is obviously not an option for today’s society (as well as the fact that there may not be many ice floes to put them on). So what are we supposed to do? I don’t have the answer, but if we can’t even have a conversation about it without a Death Panel label we are, as individuals, and as a society, complicit in what often amounts to torture.