Miles from Fenway: Maybe Sometimes It's Better Not To Know

Uncle Al's beep booming baritone would always turn my name into four syllables, instead of it's typical three. It had almost a sing-song sound to it every time he wrapped me up in those kinds of hugs that completely envelope you.

It's been a long time since I've had one of those hugs. Even longer since I've heard him say my name. Uncle Al has Alzheimer's.

I think the first time I noticed something was wrong was at my college graduation party. He was talking to The Ex about the time he spent in WWII - something he hardly ever mentioned, let alone told stories about. He was having trouble remembering specifics, and I remember thinking it was odd he was talking about it at all, but just assumed the muddled memories had something to do with it being so long ago.

Perhaps his decline was slow, but to me it seemed as if he just suddenly fell off a cliff. Living so far away, and only seeing him at the holidays, the descent into the disease appeared more pronounced to me, not seeing the day to day battle. Two Easter's ago, he knew enough to know that he should remember who I was. This Easter, I think I only heard him speak two words. He no longer has the lucidity to know that he should know me.

And perhaps that's best. I can't imagine the frustration, the confusion, that comes along with suffering from Alzheimer's. To be conscious of the fact that you're slowly losing the memories you held so dear. Maybe it's better not to know. But then again, there's no way for us to tell. By the time an Alzheimer's patient reaches that level, how are we to know what's going on in their thoughts?

I was struck by this again today, as I was volunteering at an assisted living facility on the upper west side. Most of the residents on the Alzheimer's floor are in the middle to later stages. Still cognizant enough to socialize, but who will most likely forget I was there this afternoon by the time they are sitting down to dinner.

But then there was Dess. Odessa is a recent arrival at the facility and one I had not met before today. Dess used to be a scientist with Kraft (though it wasn't called that when she worked there), and it was in those labs that she met her husband with whom she had three children - all girls. The oldest of the girls died a while back at the young age of 42. Dess holds tightly to the two that remain and the five grandchildren they've given her, though she's desperate for one of them to get married so she can meet her great grand babies.

At 85 years old, you wouldn't peg Dess as an Alzheimer's patient right away. But she occasionally forgets that she's no longer in Florida with her husband. And each time she remembers, it must be like realizing that he's died all over again.

I didn't ask Dess how recently her husband had passed away, but I am assuming it was not that long ago. Her youngest daughter is in Florida now trying to sell the house. She made it very clear that she wasn't happy being at the facility. With so many around her in the later stages - she's lonely. And she clearly knows what's in store for her.

I can't help but wonder if maybe Uncle Al doesn't have it just a little bit better right now. Maybe sometimes, it's better not to know.

Labels: Alzheimer's

posted by FINY @ Saturday, May 19, 2007

2 Comments:

At 5/20/2007, Esther said…

When my grandmother started having signs of dementia, she knew exactly what was happening and became really depressed. She couldn't help what she couldn't remember, but it was killing her. When she no longer remembered, we felt like it was making her life easier, but she never forgot completely - there were still the times of lucidity when you knew that she knew she couldn't do anything to help herself. As much as it hurts to see, it's somewhat better when they don't know anymore.
At 5/23/2007, Anonymous said…

My father passed away a week ago to the disease. i spent 4 days watching him die.....and I have to say..the other patients in the ward were a pleasure to be with...

Ugh. It's a fucking awful disease. fucking awful.