Mom 1915-2007

Five years ago today I lost my mother.  On the 27th of January of that year, I made this drawing of her as I sat by her bedside.  At the end, she rarely even opened her eyes, so she always seemed to be asleep.  That was funny because when she was still at home, she told me that she hated sleeping, and I remember writing a poem about it.  I have no idea where it is now, and the only bit of it I recall was the line how she would meet Death, sitting up in a chair, refusing to close her eyes.  I couldn't have been more wrong, could I?

She had suffered from a peculiar form of dementia for years.  Lewy-body dementia, it's called.  You can look it up; it's not an attractive disease.  I'm only now beginning to realize how long she'd been ill, and I find it disconcerting that we could have gone so many years without actually realizing that what was happening to her actually had a name, a diagnosis.  It wasn't just Mom getting old and difficult.  It wasn't just the diabetic retinopathy affecting her vision.  It wasn't just age-related incontinence on a grand scale, or persistent allergies or an essential tremor, or any of a hundred other little indignities that this fucking disease visited on her.  (I still, to this day, wish it was a person so I could peel it like a grape and roll it in salt before I stabbed it to death.  That's the level of anger I still feel over what it did to her.)

The dementia was so demanding, so draining that until I realized that my father didn't have a clue how to use the ice dispenser on the door of the freezer, something he'd used every day for years, I didn't realize that he was suffering from Alzheimer's.  That's how much of my time and attention Lewy-body dementia demanded.  I short-changed him because I couldn't not focus on her.  I spent fifteen years watching her die of this.  Fifteen years that I knew about.  It was churning away in her brain even before I became a caregiver.

I remember that there were days when she seemed fine, when the only sign that there was something wrong was that she couldn't remember things too well.  And sometimes I'd tell her a joke, usually the same one because she never remembered that I'd told it to her.  I'd say, "Mom, do you know why cats lick their own butts?" and she'd say, "No, I don't.  Why?"  And I'd say, "Because they can."  And every damn time she'd giggle a little and say, "Oh, you!"  Every time.  It got funnier with each telling.

What wasn't funny were the middle-of-the-night hallucinations, the tantrums, the spite and the anger.  What wasn't funny was the day she said to me, "I'm losing my mind, aren't I?"  And I lied.  I lied and kept on lying because I couldn't ever say to my mother, "Yes, you're losing your mind.  You're going to end up sitting and staring until you finally just stop."  I swear to you that if I could have stood between her and this thing that was eating her up I'd have done it.  I couldn't.

I did what I could to make things better.  I brought her a tray of snow when she couldn't go out, and watched her build a little snowman.  When she could go out, I pushed her around the block in her wheelchair.  Later, when she was in the nursing home, I brought her ice cream and took her  out to sit in the sun.  Most of the time she closed her eyes and didn't speak.  When she did talk, it was about the distant past.  She thought I was her mother.

 

 

One day I sat down with her at the nursing home -- this was after I'd started taking anti-depressants and had begun decompressing -- and apologized to her.  I had no hope of her understanding anything I was talking about.  She could rarely concentrate on what she was hearing, much less comprehend the meaning.  I told her that I was sorry I'd been short-tempered, and mean, that I hadn't understood things, that I hurt her feelings and said things that I didn't mean.  The whole time I was talking she was looking around aimlessly as if she saw things that I couldn't.  I very nearly stopped because it seemed so pointless, but I pressed on because it had to be said. It was the right thing to do.  When I finished she looked right at me which she hadn't done in... probably months, and said, "Thank you for that."  And then she was gone again, lost in that odd, narrow world she inhabited.

 

 

 

The day she died, I'd come to the nursing home for one of those meetings they ask you to attend where they tell you what they're doing and how the resident is responding, and honestly I knew it would be the last time I'd see her, but I didn't say so.  Then I went to her room and sat down with her.  She was restless; I hadn't seen her that active in years.  I held her hand and talked to her.  I talked for a long time and I said a lot of things that I needed to say to her.  Not apologies this time, other stuff.  She stopped moving around and she looked at me.  I don't know what she was seeing, but she grew calmer.  And then she closed her eyes.

I left the room to go have a little cry, and while I was gone she died.

Eleanor C. 1935

Mom was beautiful.  She didn't deserve the end she got, but none of us have a choice about that.   She was the finest woman I ever knew, and I will miss her every day of my life.

If there's someone you love, tell them.  Whenever you can, as often as you can.  You think there'll be time; you think tomorrow is soon enough.  It's not.  It's a lifetime of tomorrows, all of them missing the things that make today special.

 

Related articles

• Early Signs of Dementia For Family Caregivers to Watch For (steponacrack.wordpress.com)
• Getting Over Your Anxiety to Visit the Nursing Home (lifefoneblog.com)
• Denial challenges families in Alzheimer's caregiving (mayoclinic.com)
• Mysticism in Dementia (cynthiawh.wordpress.com)