There’s been a lot of stories in the news this week about NAPA and a push to find a cure for Alzheimer’s disease by 2025. USA Today had an article entitled, U.S. Launches National War on Alzheimer’s.
Well, we’ve seen what happens when America goes to war.
I absolutely applaud the push towards massive action against this disease, I applaud the draft frame work put together by the Department of Health and Human Services, but — insert glass-half-empty-HERE — I can’t help but think it’s just not enough and we’re not addressing the big issues…………….
Caregiving right now. Today.
There simply are not enough resources for primary caregivers NOW. There is simply not enough emphasis on dementia, dementia care, behaviors, etc TODAY. Let’s be honest, we have yet to develop a “cure” for cancer or for AIDS. We have wonderfully beneficial treatments that help prolong life, and yes, we can eradicate certain cancers, but it’s often a brutal treatment process that can take time and a serious toll on one’s health.
I am scared that we are giving desperate caregivers false hope about a cure…………….. I am scared that we are giving young adult caregivers who may develop the disease themselves FALSE HOPE. And if we do find a cure, how much will it cost? Will insurance actually cover your cure? I wonder…………………
I see so many desperate people on Facebook, begging for help, for a cure………………….. WE ARE DESPERATE!
Science has a very primitive understanding of the human brain…………..if you ask me. But then, I’m just a writer…………… still, I say everyone is different. No two bodies are alike. Some treatments work; others don’t or won’t. The human brain is complex. A disease like Alzheimer or FTD affect people differently. You mom may exhibit classic symptoms whereas mine never did. Think about something as simple as Aspirin……………….. it may work to treat your headache, but it won’t put a dent in mine — thank God for Advil.
And what about those individuals dying from some other grotesque form of dementia?
Frontotemporal dementia / Pick’s disease
Dementia with Lewy bodies
The other thing I can’t help but think about is cost. Our current Congress refuses to pay for ANYTHING unless we CUT. So, seriously, how are we going to pay for this? Dementia care costs A LOT of money…………of course, if you’re in Congress this is probably a moot point for you since you have the best health care my tax dollars can afford and a pension to boot…………… In-home care is not free. Most middle-class families cannot balance a full-time job and be a full-time caregiver, and frankly, FMLA is simply not enough time……………….Dementia care is a family disease. It takes a village to care for a demented loved one, and yet, many of us are scattered…………….. strangers come and go………………. they have no real investment in your loved one.
My dad retired to be a full-time caregiver. My mother’s type of dementia, FTD, made it difficult to have a random stranger care for her and she certainly would not let anyone except her husband bathe her — even that was a challenge. She could be combative. She would try to leave the house. She was, at times, very difficult to care for………………. and what about other solutions, you say? Well, the adult day care center said she could not come back because she spit on the floor — not very hygienic. We had little choice about how we could care for my mom. I tried to take her to another adult day care that focused on dementia care……………. it was a no-go. She would not sit still as they read the daily newspaper. She wanted to go home. At least she liked the other place. She enjoyed going.
Dementia patients are not alike. Some will sit quietly. MOST will not.
I am scared for the people who will soon be dealing with this disease because the majority of Americans will not be able to afford adequate care. No one can afford to pay for a nursing home out of pocket, especially if you have a severely demented loved one. My dream nursing home (hey, you might have a dream pre-school for your kid) runs around $7,000 a MONTH. Even if you have Medicaid, services are often limited………. and then let’s talk about the kind of care you get. Most state-approved caregivers/babysitters are not trained to deal with behaviors. And frankly, if you’re making minimum-wage or around that, who would want the job?
Thank you Uncle Sam for putting together a rough draft of what WE the People need when it comes to dementia care and support. Your draft covered pretty much everything. Now let’s see how you’re going to make it a reality; and let’s see if our ineffective (I see no change coming anytime soon) Congress will actually pay for it.
Good post. I agree completely.
I am traversing this same awful path. I was sideswiped and now am struggling to wander this maze of information, some good, most bad. I am having to become a medical expert, dementia expert, law expert, financial expert, and now…the incredibly dysfunctional world of Medicare…. Forms, requirements and a INSAINE system. Why is this process of ‘old’ so quiet- why are people not up in arms about the process….we speak of dignity, ease, and pretty pictures of autumn- but WTF! It’s not like that…..
I will continue to try to do the right thing(s) for my mom…..and slug a martini down (not the idiot behind the counter)