Tuesday, October 09, 2007

139 the age of "never"

In one of my favorite books, Aztec, the main character says he's come to the age of "never", when you find yourself saying things like "these stairs never seemed so steep" "my driveway never seemed so long" "I never seemed to get tired so easily".
My dad has come to another age of never. For instance, he's probably never going to see his beloved cat again. He's never going to see my grandmother again, or have dinner at her house. He'll never come over my house again, or see my birds and say "Which one is the original?" He'll never "help" me by coming to the bird or cat vet with me again. He'll never eat at a restaurant in Wallingford with my mom and me again. Never again, never again, never again. It's very like dying, isn't it, to go into a nursing home? So many other options just cease to exist.
It is doubtful he'll ever walk, or use the bathroom on his own. His speech is so degraded; it's all slurs and intonation, not words. That might not come back, not after all the anti-psychotic drugs the hospital pumped into him for 2 weeks. He doesn't really recognize my mother or me anymore--not as familiar faces. We often can't wake him when we do visit. His only expression is vacant--in the truest sense of the word, because no one's home in there, not anymore.
So honestly I'm not sure how much I can write in this little blog of mine anymore. Went to see dad, he didn't wake up. Went to see dad, he didn't know who I was. You know?
Supposedly, in the UK, their socialized medicine program doesn't pay for Alzheimer's drugs once the AD patient is in a nursing home. When I first heard that I was upset. But now I understand. All the drugs do is slow down the disease. If you're at the point where you're in a home, why would you want to live any longer than you need to? Get it over with, right? Now I understand.
This disease is fractal with layers of meaning and pain and suffering--just when you think you've gotten to the worst it can be, along comes something else to wallop you.
My mom had a meeting today at the nursing home. They are doing "occupational therapy" and physical therapy to try to get dad walking again. He is still in acute kidney failure, which my mom insists is from all the days without proper food and water in the hospital, but they say it's not. That's going to kill him, I suppose. We can't put him on dialysis. And here I am so dispassionate about it, but how else can I be? If I scream and cry and pull out my hair and rend my clothing, will that somehow make anything better?
My grandmother had a meltdown this morning; called me at 8:30 freaking out that she was dying, she was dizzy, she couldn't read (I know--huh?) and she couldn't find my mother. I knew my mom was probably walking the dog (and she was) and I got to her house just as she was telling my grandmother over the phone that she had a meeting at the nursing home and that I had to work and no one was going to come over until much later. So grandma called 911 and is now sitting in the familiar halls of the hospital ER, being ignored because she's fine. She did not have a heart attack as she claimed and she wasn't dying. So now my mom is done with my dad's thing and has to go take care of her.


Anonymous said...

I went through very similar with my Mom, including 911 as last resort to get any help at all and what a nightmare that was for my family also. My Mom died last year on Christmas day; I was with her at the end. I alternate being glad I was there and wishing I had not been. It still hurts -what she went through and how I could not make it better. And just as it seems certain there is no way it could get worse, it does. All we can do is whatever it takes to be able to say the rest of our lifes we did the best we could do. I know from reading your blog for many months that you can already say that. You and your family are in my thoughts and prayers.

Patty McNally Doherty said...

I hate this disease and what it does to families.

Marvel said...

My prayers are with you and your family and may your father make his final journey in peace.

Sangeeta said...

this is the first time i've visted your site, and i spent a very long time here, just reading... and pausing... and nodding in agreement...and fighting tears. i think you're very brave to write as you do, and your family will be in my prayers from now on.

my dad has alzheimer's too, and i hear you loud and clear. thank you from the bottom of my heart for sharing your experiences.