With the stuff going on in Medellin Colombia, the work in Denver where they’re looking at Down syndrome and Alzheimer’s, the stuff in Little Rock, the influx of money to the NIH from Congress and the big money Mr. Gates and others are investing in research. . . . . Yes, in my gut it feels right to say “Hope is on the Horizon”
As a matter of fact many folks at lots of research facilities feel we may be on the cusp of major breakthroughs.
We’ll see. I know this. There’s a lot of serious folks working on every aspect of our global fight with Alzheimer’s disease, and they will not give up.
Some Alzheimer’s caregivers that granted me an interview called themselves 24/7 caregivers and I guess they can themselves what they want, but nope, not with me. If we’re gonna talk about this stuff, let’s do it right, right? Some caregivers labeled themselves 24/7 because they were concerned about a patient all the time. But while they were concerned, they continued to go fishing, see a movie, go on vacation and so forth. Now come on folks . . .
Some that labeled themselves 24/7 were just that, but later would tell me it was sometimes for as little as 5 days a month. Even 5 days can be difficult, but . . .
There were a lot of caregivers that were with the patient all day, every day and rarely had time off. Most of those interviews were conducted in their home with the patient there with us, or we would be beside the road, with the patient in the car.
To me, the real 24/7 caregiver with very limited resources needs to be heard. Ah, but they don’t have time for that. They cut back for themselves on their food, their medication and sometimes live with stuff like incontinence, violence and family breakups alone, by themselves, no support. Just the caregiver and someone with limited or no memory.
That’s who we need to hear about, not the poor husband that is forced to fly to Europe, for a vacation, by himself. Sure, they hurt too, but lawmakers may not see a need their.
Most of the 24/7 caregivers I interviewed, when it was brought up, said they could not be an advocate concerning Alzheimer’s, because they didn’t have time to do their best at both jobs and almost all believe advocacy is extremely necessary.
In my interviews with Alzheimer’s caregivers it became apparent that many of their stories had similarities.
The biggest difference was the added stress of being poor, and that was a BIG difference . . .
The tide is changing fast here and the responsibility to deal with it is mine. It’s hard to tell what may be cognitive loss due to normal aging or the more serious decline of dementia. As the stress increases from her change, it must be decreased in other areas because this could go on for years. A lifelong attitude is a must. Minimal time off, a good mind set, eating healthy, exercise and sleep are important, as is some sort of feeling of accomplishment mixed in with the achievement of being a good caregiver.That will be accomplished by being “obsessed” with the goal of walking another 14,568 miles before October 24, 2039. That will bring the total miles walked for Alzheimer’s to 30,000. Concurrently up until July 16, 2019, 7284 miles will be walked for the Special Olympics.
“When I stand before God at the end of my life, I would hope that I would not have a single bit of talent left, and could say, ‘I used everything you gave me’ ” Erma Bombeck
“Good humor matters, optimism matters, but we cannot write the rules of life, and sometimes courage and resilience will matter most of all” Jennifer Worth
Mr. Cooper has been a hero to me since 1970.He spent about 1/2 hour with me in 2018 and signed the book.
I do get tired, but something somewhere inside of me tells me to keep going no matter what, every day.
I sit sometimes but other times I am moving, doing stuff.
I have no control over when my time to leave comes, but I hope it’s when I’m moving around.
If someone is sent to get me, I will ask for more time, because I love life. I don’t want to leave . . .
The old guy (me) is not trying to be the first to do something or break a world record.
Right now my work is to keep ma safe, keep me as healthy as possible and be of benefit to some great causes.
My year to date miles on foot is 356. That’s good stuff.