Monday, December 30, 2013

Mussings during the last days of December 2013

Our mom turned 87 in December but we lost the essence of who she was about four years ago.She started repeating things over and over and forgetting where her beauty shop was and small things like that. Then she'd forget a name and could not recognize people that she did not see often. Then June 30, 2012 she did not know who I was and that hurt, a lot.   Now she often does not know who we are but she forgets who she is and does not recognize herself in the mirror or in pictures.  Reality for her has become what she imagines in her head. More than once she has gotten up in the morning and looked for her husband (our dad died almost ten years ago) and she told me her brother was coming to get her; he too has died, many years go. My family and I have learned just to accept and not try and  understand her world because if you try to help her or correct the facts for her she just gets angry and upset. Sometimes in a violent way.   So we listen and do what we can to help her maintain some sense of dignity.
Some find her dementia a bit amusing, I know, because her mental connections (or lack of them) can at times become decidedly different from reality. But her confusion and worry are real to her, as is her pain, and there is nothing comical about that. On some level, I know she knows something is wrong with her though she cannot articulate it. Her increasingly frequent paranoia, delusions, and hallucinations, 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 deep hole 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 helplessness I feel in trying to be of some aid 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 a daily basis is more a monologue in which I listen to what she is saying and she ignores whatever I say.
The number of people, some young but mostly elderly, with dementia will rise dramatically as the population ages. This may be my future as well,  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 a good quality of life is sorely lacking. Sadly, at this time no cure exists.
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 medical professionals tell me, diminish both her will and capacity to live. I hang on to the thought during the twilight of her life that this is 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 those killed in wars or horrid events such as the many school shootings we have had that cut young promising lives short But that does not mean that losing her will come without pain. Amidst the sorrow, we will find ways to let her go and celebrate her life.