Mar 29, 2011

Throw down over Alzheimer's

All through the long process of losing my mother to cancer, I thought at first that I could not take the stress.  After a couple of years I realized that I could indeed take the stress and wondered if I would ever "go back" to the way I used to be, once it was over.

Isn't that funny?  I don't know if everybody thinks that or not, but if you do, I can tell you the answer.  The answer is no.  You won't "go back" to the way you used to be; not after you start your period, move from home, have a baby, lose a loved one, or go through hard things.  I used to be so amazed at the changes in me and try to imagine the person I was before in the new situation, whatever it was.  The answer was always obvious.  You will never "go back", because what you will be at the end of the process will be just another piece of the total package that will be "you" then.  Now.  At this moment.  There is no "going back" in the course of daily life.  Las Vegas was built to be able to fulfill that wish, within reason and for cold hard cash, for a very limited piece of time.  It's as close as you will ever get, unless you have the misfortune to suffer from Alzheimer's.  In that case, you may not know it, but you will indeed "go back" and experience things with no more wisdom or mercy than you had at the time.  Be careful what you wish for.

A very good friend of mine who I grew up with has a mother, whose home I spent a lot of time in, who is in the last stage of Alzheimer's now.  It has been a long, painful, heartbreaking process for everyone involved.  But what can you do?  You have to go through it.  There is no way around it.  There are the usual defenses, oblivion, denial, rationalization, anger, but none work very well for very long.  What starts out as Mom not remembering your name (and what mother ALWAYS calls you the right name??) gets steadily worse until medications are messed up badly enough to get some attention.  This usually leads to an inspection of the home, which very quickly reveals that things are not as they were, and they won't ever be "going back" to the way they used to be, either.  Things are MUCH worse than they have ever been before.  Whether you are a spouse, a chld, a sibling, or a parent of this person who is obviously not the way they were doesn't matter.  You feel betrayed, helpless, angry and heartbroken.  And that's just the beginning, folks. 
This is a disease that has no time frame for when it will be "over", and most likely their bodies will be in much better shape than their minds for years to come.  It drags on for years, getting slowly, slowly worse until that beloved personality is gone from the body that housed it for so long that you were fool enough to think were inseperable.  You can spend a small fortune on slippers and clothes that just get lost as fast as they are replaced.  I won't even go into what can happen to the teeth.  You learn to make peace with seeing your mother tied up because that way she can't hurt herself.  Or anyone else.  You have to cut your more tender feelings off because they will do nothing but enable your loved one's husk to hurt itself even more, and make you person non grata in the one Rest Home you could stand to put her in!  It is not for the faint hearted, and you don't get invited to join, or a chance to decline.  It comes to you unannounced, unrepentant, and unlikely to leave any time soon.  All you know is that it is going to get a lot worse before it gets better, (what would "better" be, by now?  Don't think too hard about that, just keep moving), and you lower your sights in order to survive it because you already know one of you isn't coming out of this horrible mess alive.  This goes on and on for what seems an endless amount of time.

My friend's mother was a very beautiful and great lady.  She was a wife and a mother to 6 cihldren, and gardened to feed them.  She made many beautiful quilts as well as lots of her families clothes, and had a welcoming home. She was famous for her potato rolls.  She was funny and wise and out spoken, especially if you came into her house in the middle of the night smelling of "beer and cigarettes!".  She scolded you heavily but never without respecting you, and would defend you like a grizzly bear if she thought you needed it.  When she really laughed, she threw her head back and really, really laughed.  I laughed with her many times until I cried.  She held my babies when they were small and adored them, remarking on every detail.  Sometimes I would catch her looking at me and have the strongest feeling that she knew everything I was thinking and feeling as a young woman and I would be so GLAD that there was nothing I could do about that.  She was a woman with whom you felt your secrets were safe. You felt understood as opposed to judged.  I miss her so very much, and she is not even actually gone, except in every way that really counts.  It is a grief that feels premature and incomplete, like a betrayal and so wrong, but when the end finally comes, what will be left to mourn?  It is as she disappears that we all mourn what is gone, and then what has been gone for 1 year......2 long.  And still it does not end.

It is getting rarer that she recognizes anyone, now, but for years I would listen to my friend mourn her mother's gradual disappearing.  At first I offered ideas like crossword puzzles and that Suduko thing, Then it was those alarms you could get for your doors and windows in case someone got out of the house.  Eventually, all I could do was listen and sympathize and cry and search the Bible for comforting passages.  I began to realize how many times in our lives we change and never "go back" to the way we used to be.  I began to see myself not as the daughter in the situation, but the mother.  It was the most horrifying thing I have ever thought about.  I knew that this great lady would rather be dead than ever have anyone see her like this.  I knew that she would have NEVER wanted to put her husband or her children through this.  I knew that she was completely helpless and blameless and trapped.  I wondered if she ever knew it.  I hoped she didn't.

It was during a long phone conversation, which is the only kind my friend and I ever have, :) that I ended up going on a rant and pretty much bawling out my poor wonderful old best friend who I had only ever comforted before.  It was---galling for me.  I mean, I really didn't want to do it but I just couldn't not point out this thing from her mother's point of view.  I had to do it for mother's everywhere.  For WOMEN everywhere.  I had to do let this mother's daughter have it just like her mother would have if she had still been, well, aware. 

My friend calls me and she is mad at her mother.  MAD.  This is understandable and I am sympathetic.  The story is, Mom was MAD at Dad, REALLY mad, and cussed him out like a dog because she said Dad had bought her Brother beer.  (Now, Dad was in his 80's at the time, Brother was in his 70's, and of course could drink all the beer he wanted to, BUT in her mind, at that moment, everyone was apparently MUCH younger and Brother had had some problems with alcohol during his life).  Now, even though everybody involved except Mom knew that she was not "herself", Dad's feelings were hurt to the point that he was really really upset and now Friend is PO'd at Mom because it's not Dad's fault.  I do not expect this to make logical sense, OK?  It's all emotion, that horrible, inconvenient, illogical DOWNER that will not leave you alone.  I was quiet for awhile, listening to her story, wondering if this was an actual, factual thing that had taken place 50 years or so ago or if it just drifted through her mind and stuck.  And then I thought about all the things I could reveal about myself that I probably didn't even remember anymore, and how a person can't really be blamed for that kind of thing, at least not unless it's God blaming you at the end of this impossibly long am sometimes miserable road called life.  And that's when I said "Listen! (finger went into the air at that point.  This is a sign that I have had enough, anybody will tell you) Let me tell you something as a mother!!  (Friend does not have any children of her own)  When you become a mother, you start living your life differently, like a filter, so that your children will have a picture of what a "mother" and a "home and "decent" are supposed to be.  Do you want to do this?  NOT PARTICULARLY, but you DO it, because, you HAVE to, because it's the RIGHT thing to do, because you have to set an EXAMPLE.  But nobody is just a mother, and your mother may be different ages in her mind right now, and she might be fighting mad AT THIS MOMENT about something that actually did happen, and IS happening for her, right then.  It's nobody's fault, but Dad and you, Friend, are just going to have to suck it up!  Because she can't help it!  Do you ever think that at one time in her life she was just a girl, who had yet to meet her husband, and she may have had other boyfriends, and NOW she might just tell that in front of the one person who would be hurt by it even though he has been married to her for over 50 years?!!!  DO YOU KNOW WHAT THAT WOULD DO TO HER IF SHE KNEW???"

By now, I was sobbing.  So was my Friend.  My poor Friend, who had done plenty of stuff when she was just a girl, I happened to know, as all girls do, myself included, and was now remembering (thanks to me) not only that she had to be strong for Dad, but that Mom was a girl and therefore on the same side as Friend, eternally, and deserved a little loyalty too.  You might think that it was a low point for us, but not really.  The thing about Alzheimer's is that it just goes on and on and you just have to cope with it and along with coping comes emotional detachment, if you want to survive it.  It's like war, that way. She knew I might hate this crappy mess we were in but I would not leave her alone in it, even if it meant letting her have it.  Just like a mother!!  She saw it my way.  She saw it Dad's way, and she saw it Mom's way. Talk about your multi-tasking.

If there is any blessing in this, for this family, it is that they are many.  Six children have grown into quite a crowd.  She is a great-grandmother several times over now, although she doesn't know it.  The last time she went to a family gathering she asked her husband "Who are all these people"?  He replied, "Well, don't ask me, you started all this", and she told him she wanted to go home.  I didn't really blame her.  You know how you secretly dread having everybody over when you are young and it's so much work and wears you out so bad,  and it has yet to occur to you that you will ever have Alzheimer's?  Well, someday you might announce that to all of your family, thinking they are strangers who would not be hurt by that information.  Don't worry, though.  Dad got her out of there before she did that, her partner in crime, her keeper of secrets, her hero to the end, whether she knows it or not.  I really love them both and the family they made.  They have much to be proud of.

She is receiving hospice care in the nursing home now.  She is a woman well loved, leaving a life well lived.