Tuesday, April 10, 2007

The not-so-cheerful post

N.B. Since several people on my friend's list have been added since the last time I wrote much about my parents, here is some background: both of my parents have been seriously disabled for the past 5-6 years. My father has Alzheimer's disease, diagnosed in 2001 although he was having enough symptoms to make him stop teaching in 2000. My mother was injured in a car accident in 2002 and is quadriplegic, although she has some movement in all of her limbs and can walk short distances with a walker. She has full-time nursing care.

I talked to my mother on Easter, and she told me that my father is really going downhill. I had certainly noticed over the past year and a half that it seemed to be going faster; it used to be that I would notice from Christmas to Christmas that he had lost ground, and last year I noticed a significant change between Christmas and Easter. And by this past Christmas, it was clearly accelerating. Mom had had to hire an aide to get him dressed and fed in the morning because he needed too much help for Mom's aide to be able to take care of Mom and help him out (Mom's aides are only supposed to take care of Mom, but they all help Dad in minor ways). He could barely speak because he can't find words any more. And this past summer, he forgot his first relative when he couldn't recognize my cousin, his niece whom he had known since she was a baby. And now Mom says things are worse. She's decided they can't travel any more because it's too confusing for him, and because he needs too much help for the aide who travels with them to be able to take care of Mom and him. He can't go to the bathroom alone, because you can never be sure where he might pee. He's getting restless at night, which is a classic Alzheimer's symptom.

Things are bad enough that I decided to fly out to Michigan next month because I'm afraid if I wait until we go out in August, he won't know me any more.

That was just a hideous sentence to write. I find it's easier to think about my father dying than it is to think about him not knowing me any more. When he was first diagnosed, I found myself wishing he would get cancer, or have a heart attack or anything that would kill him quickly before his mind went. That passed as time went on and I learned to appreciate the time we had left together. But now I'm back there again. I'm torn between not wanting him to get any worse, and wanting things to go as fast as possible so we don't have to live in a limbo where his body is present but his mind is completely gone.


A while ago, my mother was teaching a class on grief, and she asked me what my reaction was when she had first told me about Dad's memory problems. My response was denial, complete and utter to the point that it was genuinely a shock to me when he was diagnosed with Alzheimer's because I had refused to let myself think of it as a possibility. And when he was diagnosed, it was like the world came crashing down, taking my nice little denial cocoon along with it. For a couple weeks, I reacted in many ways like he was already dead, getting very depressed and unable to think about anything except that my father was going to die, and in one of the most horrible ways I could think of.

But then I had a couple good conversations with him, and I realized that he was still alive, and still very much himself, so I had better appreciate it while I could. And at that point, it was pretty easy. He was losing ground in little things, but he could still take care of himself and carry on a good conversation. He even did yardwork. The fall I spent living with him while Mom was in the hospital, I took weekend trips home without much worry, although I was relieved to have the excuse of Mom needing a van to get him to stop driving. And while I would give quite a lot for Mom to never have had her accident, I'm grateful that I got that fall with Dad, while he was still doing pretty well. For a long time, it was like that. He was clearly losing ground, losing the ability to read and write, and to work mechanical things. But his personality was the same and he knew us. He even still had his sense of humor. I felt really lucky, because many Alzheimers patients develop very short tempers out of frustration. But Dad has always had a very sweet and gentle personality, and he seemed to accept his declining abilities with a calm grace.

And then last January, Mom told me that he was going into the basement and getting upset because he was convinced people were stealing from them. Paranoia is a common symptom of Alzheimer's, but it hit me a lot harder than any of his other losses. And it wasn't hard to realize why: as hard as it was to watch him lose ground, none of what was happening to him was any of the really unattractive symptoms, or changed his personality, which made it relatively easy to think that things weren't so bad. Hello again, denial. Apparently you've been with me all this time. Paranoia is a symptom that makes denial impossible. It says that yes, Alzheimer's really is that bad, and it's only going to get worse.

And since then, it's been with me, that acute knowledge that it's a steep downhill fall from here. I had to acknowledge at Christmas that it was probably the last one where he would be aware enough to appreciate it and participate. And the thoughts about his final illness and death, the practical ones like whether to put him in a nursing facility and planning his funeral, are leaving the theoretical and becoming things we really need to deal with.

The future I have been dreading is here, and it really sucks.

Edited to add: As it turns out, this was the start of my father going very rapidly downhill, and he died on July 30, 2007.