Alzheimer's It's Amazing How Many People Have The Same Story
Posted Jun 17 2010 7:52am
By Bob DeMarco Alzheimer's Reading Room
It is hard to look at and think about the future of a person suffering from Alzheimer's.
There are two parts to the equation -- the Alzheimer's patient and the Alzheimer's caregiver.
Most caregivers don't want to think about the future and what it is going to be like.
Me? I have been thinking about the end since the beginning. Wondering what it might be like? Wondering if I am going to be able to deal effectively if Dotty goes all the way with Alzheimer's.
I don't like thinking about it. I do it anyway. I need to get mentally prepared now. Its out there, somewhere in the future. I need to be ready. As ready as I can be.
I have no illusion that it will be easy. I know I will need as much support as I can find or get. You can't go it alone.
Only time will tell. This is the story of Tom DeBaggio. Eleven years and still going.
This could be your story, or my story, or the story of the many millions.
Ms. DEBAGGIO: He's truly trying to say something. There's something still in his mind. He just - it's just so heartbreaking, you don't know what's in his mind, what he's trying to say. What's so hurtful is that I don't know if he knows that's he's not communicating. Because sometimes I feel that he's disappointed in my response, 'cause he'll sort of look away in disgust sometimes.
Ms. DEBAGGIO: Not really, no. I mean, I know its Tom. It looks like Tom. I said it. I can't believe I just said it. But there's no communication. I mean, our relationship was based on communication and we talked about everything. And we talked and talked and talked, and now we can't. That's been the most difficult.
Tom in 1999
"I still talk, I still stand up on both feet, I still look the same — maybe they go out of here and say, 'Doesn't look like anything wrong with him.' And of course you don't see it," he said in 1999.
"I still don't understand why. It just happened in, I guess. I can still do things — but it's hard to do. And I sure hope that Francesco and all of those people, and everybody like that, that they wouldn't have to go through this," he said.
Tom was dressed and in a wheelchair when we got there. He can no longer walk or use his hands. His language now is gone. He's thinner than when I last saw him, his face hollow. But he had flashes of animation and smiles. And at moments, he seemed to want to express himself.
"He's truly trying to say something. There's something still in his mind. That's what's so heartbreaking, you don't know what's in his mind, what he's trying to say. What's so hurtful is I don't know if he knows that's he's not communicating. Because sometimes I feel that he's disappointed in my response because he'll sort of look away in disgust sometimes, like when I say, 'Oh yeah, yeah, OK,' in response to some babbling. Which was not the response, but I don't know what that's supposed to be because I don't know what he's saying."
Read -- A Decade Of Alzheimer's Devastating Impact -- Tom DeBaggio
Bob DeMarco is the editor of the Alzheimer's Reading Room and an Alzheimer's caregiver. Bob has written more than 1,565 articles with more than 8,000 links on the Internet. Bob resides in Delray Beach, FL.