January 13, 2008

On Losing a Mother, on Losing Memories

Category: Alzheimers — Biella @ 6:07 am

For the last four years, I have left my life and home to return to my mother’s far more precarious and fragile life in Puerto Rico. I do so to visit. But I also do so to give her caretaker, Milagro, a much needed break. I returned on December 18th and found my mother nearly in the same state as she was in October. Far worse than a year ago, but she still struck me as my mother, if nothing else because she knew I was her daughter.

Over the course of a week, all of that changed. After a series of howling fits, by the end of my first week there, she no longer knew she was my mother. While I knew this would eventually happen, I was still caught off guard. You see, prior to my arrival, and since my last visit in late October, she asked me on the phone, and my sister and Milagro in PR, *nearly everyday,* when I was coming back. So even though she asked when her daughter, who she knew lived and worked in the city of New York, was coming back over and over again for 8 weeks, this seemingly hard-wired thought quickly vaporized thanks to what is a disease of the brain, but what strikes experientially as a cruel disease of the soul and personality.

So while 2007 was overall a pretty good year, it is also the year when in certain respects my mother died, at least for me in so far she has morphed into someone remarkably different from the person I once knew. Now she only remembers small scraps of her life. She knows she is from Russia, she knows that she lives in the “Casa de Vera” (which she thinks is her bed), she knows she loves the dog, she knows that she had parents (and she would like to return to them but does not know where they are), she knows she has a good friend who is a painter (I think she had a massive crush on him if she still remembers him and not me ;-) but otherwise, everything is so twisted, so jumbled or so gone, it is beyond stunning. She certainly knew I was around and helping for she got upset when she knew I was leaving, often bursting in tears, asking me to take her to New York. But she just knew me as Gabriella from Nueva York who brought “her novio bueno to PR” and not as anyone else.

It is certainly not easy to see this, to experience it day in and out but it is what it is and there is no running from it. Logistically it is also beyond hard to take care of my mom. To get her to eat, to calm down after one of her morning fits (she always, always, always had a raging fit in the morning, the afternoon and evenings being far more calm periods), to convince her to wear her dentures (which is the only remedy to stop her from spitting all over the place), to dress her, to deal with her in the middle of the night, often twice, are all extraordinarily challenging. Very quickly, your waking hours fill up with seemingly endless tasks and this I guess is, in some respects, a hidden blessing; there is just a lot less time to ruminate over how all of this, frankly, sucks. It is only later, late at night, early in the morning, or on the plane ride home where the darkness of her life would set deeply into my own.

It may be obvious why this state and experience is tough but there are two parts that I find particularly rough. If my mother’s state is one of near total chaos and entropy, there is one thing that is utterly clear. She knows she is suffering and she wants out. On particularly bad days, she would mutter or sometimes yell loudly that she wants to die and would ask for the medicine that would accomplish this. She would even sometimes call me “mala” for not giving her this medicine. It is certainly not the case that everyone with Alzheimers goes through what my mother does. Apparently, some experience the illness quietly and peacefully. This is so not the case for my mother, who lived a particularly hard yet vibrant life. Donning a difficult personality, she lived lived as fully as she could and it is clear that as life leaves her, she would rather not be around to experience what is a cruel exorcism of self. Thankfully, she is not constantly or not even mostly in a suicidal state. I think she at times forgets how lousy she feels and rather enjoys the rather limited life she has. And at this point, I just hope that she continues to have calm or even happy moments.

The second surprise concerns my own memories. My mother has had this rare form of Alzheimers, Posterior Cortical Atrophy, for at least 6, possible 7 years now, though we only received the official diagnosis 2003, which is the year when when I first started to write the occasional post about my experiences with her. In 2003 and 2004, she was pretty functionally in tact and it has only been the last 2.5 years when the persistent decline has set in, whittling her capacities and memories to what seems to be a bare minimum. But because her presence and reality is nothing short of totally enveloping and drowning, I am starting to lose my own memory of my mother prior to her illness. If Alzheimers robs people of their memories, I have come to realize, that if you are not careful, it is a thief that can also rob your own memories. I think it is for this reason that I have become so attached to my mother’s stuff—her furniture, her paintings—some of which I have taken back with me. They are material vehicles that transport me back to the past when my mother was in a different state and place. Now it is clear that if the challenge is to deal with the emotional toll this illness causes, it as much summoning the will and performing the labor to retain and recall my older memories of her.

1 Comment »

  1. “…a cruel exorcism of self” is exactly how I remember it when my grandmother slowly succumbed to Alzheimer’s over a decade ago. In those days I volunteered to spend my nights there, to help her get to the bathroom or otherwise assist so that her eldest daughter (my aunt) would be able to get a little more rest.

    My experience was not quite so cruel as yours, as while my grandmother could not remember my name, she did remember me as “that boy” and seemed to have some remaining context concerning who I was.

    Now, years later, what I remember most of my grandmother are all the days when she was more alert and cognizant than I was. Hopefully the same will hold true of your memories of your mother.

    As for what I fear today, it’s that my mother will develop Alzheimer’s as her mother did.

    Comment by Chris — January 13, 2008 @ 7:05 am

RSS feed for comments on this post. | TrackBack URI

Leave a comment

XHTML ( You can use these tags):
<a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <strike> <strong> .