Dementia and Dignity
I lost my mother about eight months ago, but she will be ninety-nine in early February. This is the result of dementia. It is an illness that has crept up on her, and us, in small, almost imperceptible steps, as fog crawls slowly up a hillside. The woman she was is gone. The mother I knew can be reached neither by her conscious awareness nor by all my wishing that I could penetrate the curtain that is descending over her mind.
At first, she just seemed to forget a name, but it would come back to her with the aid of a clue. Now, even a photo of a grandchild, who shares the same birthday with her, just produces cluelessness. Reality, sometimes, becomes what is happening on TV, as she told me one evening when she said she could not talk on the phone because she was in a program and had to watch what would happen to her. At other times, reality is what she imagines in her immediate surroundings. Yesterday, she told me her brother was sitting next to her; he died years go. But I have learned that to try to help her differentiate between imagination and fact angers and upsets her at the same time that it frustrates me – and so produces nothing of value for either of us. And so I listen and support her – her sense of dignity is one of the few things she clings to, and preserving that for her matters far more than helping her see what is real.
Some find her dementia a bit amusing, I know, because her mental connections (or lack of them) can at times seem so comically divorced from reality. But her confusion and worry are real to her, as is her pain, and there is nothing funny about that. At some level, I know she knows what has happened to her and what it means, though she cannot articulate it. Her increasingly frequent tears, however, say all that needs to be said. She may have dementia but she has not lost her capacity to feel or fear. No amount of empathy from me can fill the chasm that has opened in her life, and in her despair she is perhaps most connected to the reality that is here and the reality that awaits her.
I know I am not alone in facing both the ineptness I feel in trying to be of some help to her and in the guilt that comes with the fact I do not - perhaps cannot - do more. Many caretakers and loved ones have it far worse than I do, because I can still talk to her – though what transpires on those calls is more a monologue in which I listen to what concerns her on a given day and she ignores whatever I say in reply.
The number of older Americans with dementia will rise dramatically as the population ages. This is my future as well, I know, should I be fortunate enough to live a long life. At the same time, our ability to fight this disease and give those afflicted some additional years of mental capacity and personal dignity struggle to keep pace. We are in a war with many battles but few victories.
I know, most likely in the not too distant future, my mother will be gone in body as she now is in mind. Dementia will not only continue to overtake her but will, the nurses tell me, diminish both her will and capacity to survive. It is a handmaiden to her final days. I know this is in some way the natural course of things just as I realize that she has lived a long and full life. In that sense losing her carries nothing of the tragedy of children killed in their elementary school classroom or so many other forms of premature death. But that does not mean that losing her comes without pain.
Amidst that pain, we are finding ways to greet each day and to say goodbye. Sometimes when I call her, she hangs up on me, upset at a perceived slight from someone else or me, though it is not always clear she knows who she is hanging up on. But on some calls, she ends by saying “I love you.” I say it as well. That, if nothing else, cuts through her dementia in a way that brings us both to the reality that matters most and, thankfully, cannot be shaded by her darkening mind.
Photo Credit: Marjon Lukje
