As many readers of this blog know, I tend not to shy away from writing about my mother’s struggle with Alzheimers. But in the last 6 months and especially since I paid my last visit to my mother, I have found it much harder to sit and write about her current state of affairs. If we think of Alzheimers as a journey to a new place, she is almost at the point of reaching that place of great loneliness and inhospitality, which is not only new and different—both for her and those around her—but is a virtual prison, for it rarely allows you to leave and visit the places of your past.
More than ever, her memory and understanding of her life as she (as I and many others), once knew it, is fading fast; Of course, this was to be expected but it is quite difficult to imagine what it will be like until the actual experience unmistakably knocks on the door of present time and unfortunately, when it knocks, you can’t do anything but open the door and let it in.
Unsurprisingly, it is incredibly difficult to witness and interact with a person who is losing most all recollections, the stuff of which, you come to realize, is what defines a person and allows you to more or less have the opportunity to seamlessly interact with him or her.
In the last number of months, I have perhaps been more silent than usual because there is only so much I can and want to think about when it comes to my mother’s decline. I talk to her nearly every day and I have decided for now, that is enough.
But I am retreating out of my silence after reading a refreshingly honest, though still somewhat timid piece on Alzheimer in the NYTimes, entitled Zen and the Art of Coping With Alzheimer’s
The piece is striking because it offers a more realistic portrayal of the disease than most mainstream media accounts and it provides some really sound advice about the importance of just letting go and going with the flow when interacting with those with Alzheimers.
At the same time, it lacks a certain window into just how disheartening and hard it can be to witness the decline, and how hard it can be to manage those conversations and interactions.
On the whole, I try to go with the flow. For example, I recently returned from a visit and soon after I left, my mother forgot I was even there. She started to ask me over and over again when I was coming home for a visit and when I told her I was just there, her semi-humorous reaction was “well, why didn’t anyone tell me?” (and then proceeded to castigate her caretaker for not telling her!!).
Perhaps I did not stay long enough, or perhaps her lack of recall would happen no matter what. To hear she forgot shook me hard and deeply. The first time I realized she could not remember I had just visited, I was able to jog her memory by listing off all that we did together. Finally, when I mentioned that I bought a new refrigerator while in PR, something clicked. She is still worried about money, so buying a refrigerator was enough to remind her I had spent a lot of money.
But after it was clear that she felt quite bad about not remembering, I knew that was the first and last time I would try to “jog” her memory. Instead, I will merge and mold my reality to her reality, as much as I can and assure her that I will soon visit.
For example, I always ask about the dog and upon mentioning her name “Isabela” (a.k.a. Gordita, a.k.a. Pucha), my mom delves into an ecstatic “I LOVEEEEEEEEEEEEE Pucha,” and then tells me that I “must meet her.” Instead of explaining that I have met her innumerable times (and am quite fond of the dog myself), the conversation is more enjoyable for her if I get excited at the prospect of meeting this loveable dog and if she gets to tell me about her beautiful eyes (and the odd fact that she can’t talk ).
But sometimes it is more difficult to let go and just go with the so called proverbial flow. For example, experiences from World War II have stubbornly remained with her. For example, she asks whether I came from the war, or whether the house has something to do with the war. I tend to say I came after the war and let her know that the house was indeed built during the war and not of the war. She seems satisfied with those answers and I hope it remains as such.
You see, after leaving Russia, she was a refugee from the age of 5-10, and what happened then, so many moons ago, has been nearly impossible to forget. Trauma is not only an interruption in your life, but imprints something new in the psyche, forming something like a rocky crevasse that will likely remain for a long time.
And I have to say, the persistence of war memories really upset me. It is hard to accept that, as her memories are being emptied from the vessel of life, the last drops are some of the most painful. If you need an argument/example as to why war is a Bad Thing, well, here it is. Even Alzheimers—the otherwise robust all-purpose memory scrubber—has trouble erasing memories of war. War may actually happen in a certain frame of time, but it is quite radioactive: it sticks around for an eternity.
At this point all I hope is for the continuation of the possibility of interaction. So long as we can even talk, even if everything is contorted and distorted, it is a connection that I find valuable. But of course, everything can go, so that the afflicted person can’t even speak anymore and that is always very real possibility. So until the next stage emerges, I will just enjoy the art that is coping.
Biella, I must tell you you are a _very_ brave person – Not only for coping with this (every person close to an affected one must do so, in whatever way possible), but on rationalizing and writing this over. Yes, I know you -after all- study humans and their collective behaviour – but it is quite hard to study yourself, on an aspect so dear and intimate.
Now, regarding what you mention about the war, about the prevalence of the topic in her mind… Remember she didn’t only suffer the war while at the war – A trauma is repeated over and over your whole life. For something as traumatic as being a child persecuted and later a refugee to a totally strange land as Puerto Rico must have been for a Russian, the war trauma is repeated throughout your life, every day. How often did she get questioned where she was from, why had she come, how was it there? When she remembers teaching you who she was, she will also remember the war – So the war is woven all over her brain. Maybe not the war itself, but -as you say- experiences related to it. She came to Puerto Rico because of the war. You went to visit her some weeks ago. Maybe it was also because of the war?
Terrible as it seems… Illnesses such as the one you have to deal with can be a very interesting, breathtaking way to learn how our brains really work, how is information really structured in it.
… Hugs.
Comment by Gunnar — August 20, 2007 @ 7:41 am