Tuesday, September 8, 2015

The terrible tragedy of living with Alzheimer's

My grandmother developed dementia as she grew older, the product of many tiny strokes which slowly took her away from us.  She lived across the country from us so I didn't get to see her that often, but even from afar it was a terrible tragedy to live with.  I was always a favorite with my grandmother, and seeing her decline that way, knowing that who she was was slowly being stolen from her and from all of us, was miserable.
I hoped and prayed that neither of my parents would get dementia.
A few years ago, I noticed that my mother didn't seem quite like herself.  I had noticed over the phone that she would frequently repeat herself, and that she started talking about the weather more.  It wasn't until I went home for Christmas, however, that anything seemed truly unusual.  She was more forgetful than she should have been, and learning new things was incredibly difficult.  She would misplace things easily, and not notice them even when they were right in front of her.  She couldn't even remember where to put things in her own kitchen.  It was a little scary, but I didn't know how to bring it up with my family.
I didn't have to.  My eldest brother called me several days after we both got home (him to California, me to Alaska) and asked, "Did something seem...off...about Mom?"  We talked about it and told each other what we'd each witnessed, then decided that since we'd both noticed we needed to talk to our dad.
It turns out, our dad had noticed as well but hadn't said anything just to see if we would notice.  If we didn't, then he was imagining things.  If we noticed, then clearly there was a problem which needed to be checked out.
It's been several years since my mom's diagnosis of early onset Alzheimer's, and not a day goes by that I don't think about it.  How quickly I'll lose my mother, both because it will steal away her personality and because it's a death sentence.  I think about all those prayers I, apparently, wasted in the hopes that I would never have to witness this.  I was raised religious but haven't been a church-goer since reaching adulthood.  This, however, has killed any hint of religious fervor I had left in me.  Frankly, any deity who could unleash this horrible illness upon my sweet, kind, generous, brilliant, and faithful mother isn't a God who is worthy of my worship.  I'm just so damn angry about this.
It was hard enough to deal with from afar, but seeing it up close every single day is so wearing.  I can't even imagine how it is for my dad, who thankfully has begun going to a support group for people whose loved ones have Alzheimer's.  He's quiet about it, however, because my mom is ashamed of it, like dementia is a moral failing or a sin.  So we tiptoe around the topic, never actually saying "dementia" and trying not to allude to my mom's forgetfulness.  She didn't misplace things, they've just gone walkabout on their own.  We remind her of things when she's clearly forgotten them, repeat ourselves as if it's the first time we've answered a question, and give one-step directions as if she was a child again, because she can't remember two different steps long enough to do them.
Some days are good, and other days are clearly bad days.  Sometimes even a small thing can throw her off so that the day goes downhill.  I took my mom to Costco a few weeks ago and, as it turns out, she'd forgotten her Costco card.  As I don't have one yet, we couldn't go in.  Not a big deal, but she was frantic and berating herself.  I tried to point out that I've done the same thing myself, going to the store without my wallet on a few occasions, but she couldn't be consoled.  We went to the grocery store and she was more forgetful than I'd ever seen her before.  I had to remind her three times on the way to the tomatoes that she was going to pick out tomatoes.  "What was I getting again?"  "Tomatoes, Mom."  As soon as she'd turn around, I could see her looking around at all of the produce, clearly having forgotten what I'd just said, hesitantly reaching for an onion before pulling her hand back.  "Tomatoes, Mom.  We need three."  "Oh, that's right!"  It was nighmarish, but similar scenes have played out pretty much every day.
My mom, who has always been an avid reader, can no longer follow a story long enough to read more than a magazine article.  She cleans obsessively because it's one of the few things she knows she can still do, and because it helps her to feel useful.  The down side of this is that she now has three extra people living here, three people who don't actually have places to put our stuff because this is only supposed to be a temporary place to stay until we get on our feet.  So she puts our things "away" and we have to go searching to find them.  They're never in the same place twice, and the places she thinks are logical to put things are not what make sense to the rest of us.
We're getting better and learning not to leave our things out where she will feel the need to tidy them up.  Even things which I need to put somewhere for only a few minutes until I need it again are put out of sight, or they're liable to be "cleaned up" and it will take me half an hour to find it again.
I feel really selfish complaining about how this is making my life difficult, but I often find it easier to deal with if I'm angry.  If I'm angry, at least I'm not about to start crying over the loss of my mother.  My mother who got two master's degrees and raised four children and always knew the answers to Jeaopardy! and read books like I do and sang in the church choir and sewed our costumes and baked all our bread when I was a kid and cooked dinner pretty much every night and who taught me about organization and who was the backbone of our family...that mom is not the one I have now.  I am sad and I am furious, but it's an impotent rage because there's really no one to blame.
If for no other reason, I'm glad we're living here right now because I want my daughter to know her grandmother as well as she can, and I want my mom to know her granddaughter, her very first grandbaby.  It's wonderful to see how the Munchkin lights up when she sees her Mimi, and my daughter is certainly the light of my mom's life.  That is when I get the saddest, however, seeing them together and knowing that my daughter will never get to know my mom as she was before dementia.  Too, the sneaky thought worms its way in that someday soon, my mom will start forgetting my daughter's name.  She'll start forgetting that she's a grandmother at all.  I will have to be the keeper of that memory, the one who tells my daughter about how my mom started shouting with joy when we told her she'd have a grandbaby, and danced when she found out we were having a girl.  But it will be just that, a story which my daughter might have a hard time connecting with the woman who doesn't recognize her, and it breaks my heart.
Mom has started talking to me about her death lately.  She wants to get her wishes known while she's still mostly in her right mind.  My dad had a heart attack a couple of years ago which scared her, and the rest of us, silly.  The thought that my dad might go first haunts me.  I am one of the executors on my mother's living will, if my dad isn't alive, but my mom wanted to be sure I wouldn't cut my siblings out of the decision-making process.  (As if I would!--we're all very close.)  I've promised her that I'll ensure that she's cremated, that she isn't "preserved and stuffed in a box like a cookie."  If possible, she just wants to be buried in a cardboard box, so her remains can become part of the earth again quickly, with no headstone.  She liked the idea of a tree marking her burial site, and if possible, "if it doesn't creep the rest of the family out too much", she'd like to be buried on the property of her family home.  This was a hard conversation to have, but I'm glad we did have it.  I'm glad to know that, in the end, I will be there to voice and carry out her wishes.
For now, I try to focus on the good things.  There are bad days, and days when she sits quietly and seems so alone in her own head.  But there are times when one of us gets her to double over with laughter, and times when her sense of humor comes out as she delivers a devastating one-liner that leaves the rest of us doubled over with laughter.  I know now how to help her get out of a funk, at least sometimes.  That's really all I can do.  And when despair threatens to overtake me, I go off to quietly take care of myself so that I can return with a smile and a project which she can help me with.  Today, she'll teach me how to make apple butter.  That, too, will be something I'm now the keeper of.  When I make apple butter years from now I'll teach the Munchkin and talk about my mom, and I will do my best to remember my mom in her best years.

1 comment:

  1. You are so strong friend! It is so obvious how much you love your mother. :) -Ellie