Archive for the 'dementia' category

Living life without regrets

Feb 04 2015 Published by under Alzheimer's disease, dementia, Uncategorized

On the tweets this morning:
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With older parents we must have "difficultdiscussions." What do you do when your parent says, "fuckyou, I don't want to think about it."

— Doctor_Strange(@StrangeSource) February 4, 2015

  I've been there. My father died about 4 years ago at the age of 91 and a half. As he used to say, the half is very important to the old and the young. My mother is still alive, in end stage Alzheimer's and just turned 89. She is in a place where she is safe, and well cared for. I could not take care of someone who need 24 hr care. But getting to this point was hard. I did most of the work, and spent long hours resenting my brother and sister.  I lived near my parents, my sibs did not. In fact, I took a job nearer to my parents (lots of other reasons to, but this was one) about 10 years before my father died, at the point when it was clear my mother had dementia. In the beginning my sibs would tell me what to do, and that precipitated problems. In the beginning my parents were resentful and difficult and told me what to do. That also caused problems. I've got sad stories and funny stories and painful stories.

I'm not sure I've got anything resembling useful advice.

I did a huge amount for them (and still do for my mother). I did not get much in the way of thanks, appreciation or even acknowledgement. I made some hard choices, and as a result a number of things in my life were very different.

But what I absolutely do not have is any regrets.  But the end of my parent's life was far, far better because of what I did. It is easy to be good to little children when they are cute and charming. Old people are never charming the way children are. It is easy to help a friend when its someone who will help you, or someone with whom you have an ongoing relationship. But even if you love your parents, even if your childhood was not difficult and fraught with stuff you Don't Want To Talk About, it is much harder. If you parents are not sweet, kindly grandparents, but nasty and irascible, it becomes much hard to do anything, to go out of your way, let alone keep your temper. But still, you have to get up with yourself in the morning. Live your life without regrets.  

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Dreams and Mothers

Oct 12 2014 Published by under Alzheimer's disease, dementia, Uncategorized

I read a marvelous post by activist Deborah Jiang-Stein which is an excerpt from her new book. I don't want to give away the punch line, which is very powerful.

Part of that power was to make me think about lost children and lost mothers. No, not think, feel. I've written some about my mother, who was a powerful mentor to me from when I first thought I wanted to be a scientist. Aside 1: here is a difference between a boomer & a younger: My instinct is to say "when thought I wanted to be ..." and my junior colleagues would say "when I knew I was going to be...". Moving on.

My mother has end-stage Alzheimer's disease. When I moved to my new almost-MRU, I brought her with me. I had taken my last job at the old-MRU to be in the same city as my parents at the ends of their lives. My mother now needs 24-care, and I am extremely lucky that she saved enough money for this wretched end of life. Aside 2: anyone struggling with this issue who would like advice and suggestions based on my history, email me, we can talk. Right now, my mother is not the person who mentored me, fought with me, and over the years said many hurtful things. The person she is now is a different person. This is very hard for my sibs to understand, and they seldom visit her any more.

It's not entirely wretched. She has a little speech, but no language. She cannot feed herself but she loves ice cream. She smiles at me, sometimes. She gets angry, still. And she will occasionally kiss me, though she gets kissing and eating mixed up sometimes. And once when I laid my head down on her shoulder and started crying, she put her arms around me and made soothing noises.

One memory of her, of something that infuriated me at the time. Earlier in her disease, she'd have no time sense and call at all hours. She went through a couple of months where she'd call in the middle of the night and ask about the "little ones" or "my small ones". Sometimes she would be in a panic, not knowing where they were. I learned to say "Mom, I have the little ones. They are with me tonight. They are sleeping but they love you". Sometimes she would ask "are they safe?". Sometimes, she would say "that's good" and then just hang up. Now I hold onto this memory like a worn-out good luck charm.

I am friends with some of her friends, now in their 90's. Women of that generation at any MRU all knew each other. Most are sharp and insightful and a joy to talk with. They tell me stories about my Mom, and often those stories will trigger dreams. In my dreams my mother is intact, and talks to me. We fight a lot, which we did before. But she's there. She's talking to me. And that is enough.

Oh, one of my mother's best comments to me:

Get a PhD, not a husband. A PhD is more useful.

 

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