Showing posts with label Alzheimer's Reading Room. Show all posts
Showing posts with label Alzheimer's Reading Room. Show all posts

Friday, July 22, 2011

Overwhelming Majority of the Public Want to Know If They Have Alzheimer's

Overwhelming Majority of the Public Want to Know If They Have Alzheimer's

Be sure and click on the above link and read the article claiming people want to know if they have Alzheimer's. Then come back here and comment whether you agree.

My husband is angry now that he knows. I am wondering if I did the right thing urging him to seek help for his confusion, agitation, and rage, which was more of a problem than memory loss. I didn't care if he couldn't remember doodley-squat, as long as he didn't yell at me about it.

Another thing: articles are showing up claiming Alzheimer's is a lifestyle disease in more than half the cases:

"More than half of all Alzheimer's disease cases could be prevented through lifestyle changes and managing certain chronic medical conditions, says San Francisco VA Medical Center psychiatrist Deborah Barnes, who analyzed global data involving hundreds of thousands of participants.

The biggest "modifiable risk factors" for the disease are physical inactivity, depression, smoking, midlife hypertension, midlife obesity, low education and diabetes, which account for 51 percent of Alzheimer's cases worldwide and 54 percent in the U.S.

"What's exciting is that this suggests that some very simple lifestyle changes, such as increasing physical activity and quitting smoking, could have a tremendous impact on preventing Alzheimer's and other dementias," Dr. Barnes says.

Well, phooey on that. My husband has the APOE4 gene, one of the markers that spell big trouble ahead. My head is spinning with concerns about Alzheimer's becoming another shame-producer, when people are beginning to speak out about it. I'll bet this Dr. Barnes is a skinny blond runner who skis.

Tuesday, June 28, 2011

Learning to live by Alzheimer's rules

"It takes a lot of energy, learning, and patience to deal with Alzheimer's disease." So says Bob DeMarco, author of the Alzheimer's Reading Room.

No kidding.

One minute I'm his favorite person. The next minute I'm his worst enemy. What did I do wrong?

I left a bottle of water sitting around open.

"I just don't understand why anybody would do that!" he repeats over and over.

As his world becomes more confused, he understands less and less and wails louder and louder about trivial matters until I am agreeing with him that I'm the worst wife in the world and he is absolutely right, I'm just no damn good.

Yet it is way too early in the game to get too frustrated. At least he's not accusing me of stealing his things, or threatening to kill me. Maybe it will never come to that, but for some it does. And worse.

I read of Alzheimer's patients who remain sweet and gentle, never uttering an unkind word. My husband is not one of those.

What I should have done was not leave the bottle there. But I am messy. I am having a devil of a time obeying his new rules. Open bottles of water were not a problem before AD. And they may not be a problem tomorrow. The rules change. Every day there is a new rule.

Caregivers spend a lot of time tap dancing, trying to understand what their loved ones need. We have to hang loose and be ready to shift into their dimension at any minute. For some of them, perfect order would not be enough to allay their fears. So meeting their needs as they arise is about all we can do, while accepting that no matter what we do it will never be enough.

However, at times his dimension becomes a lovely place to be. He apparently feels happy, peaceful, grateful and content for a little while. These are the precious moments to savor. I'm going to remember them later, even though he won't.

Friday, June 24, 2011

We have a new motto at our house: Just start now...

Never had much of a heart for service.  Self-sacrifice was never my strong suit, especially when it came to men.But the mighty oak bends under a mightier wind. Solid ground gives way to rushing waters and begins anew downstream. At last I loved someone enough to try to adapt to him. Good thing. He couldn't change if he wanted to. Can't reason with him, his reasoner is broken, to quote an expert on the Alzheimer's message board, www.alz.org, my lifeline to sanity and instruction.

Bob DeMarco, author of the Alzheimer's Reading Room www.alzheimersreadingroom.com, and caregiver to his mom, says an alternative universe moves into your house. He calls it Alzheimer’s World. It has a language of its own. The other day he wrote about how when the craziness starts, you just take one step to the left, and you are out of your reality into theirs, where things make sense to both of you, where, if you can remember in time, you say the most comforting thing, which probably has very little resemblance to anything other people would recognize as truth. There is only one truth in Alzheimer's World. Theirs.

However, occasionally their truths become life lessons, such as when he walked into my office and announced he had come up with a new motto. 

I started to take one step to the left.

 "Well, you know how I have a lot of regrets...well, what if I just start now just being the best I could have always been."

Sometimes his reasoner works just fine.