“We hardly go anywhere, and nobody comes here”
August 8, 2017 6:21 AM   Subscribe

 
I'm seeing a lot of these articles these days, which is a very encouraging sign, but (outside of major population centers) I'm not seeing a lot of practical help short of extended care homes. Which is frustrating, as the articles nail why homecare is a major problem and is only going to get worse.

A sidenote on the support groups: I finally had to stop going to them, as other people's stories about the advanced stages of dementia were demoralizing me. One on one emotional support from someone who wasn't a dementia caregiver, though, helped a lot.
posted by Mogur at 7:05 AM on August 8 [7 favorites]


Thanks for posting. I don't know why this particular issue has become such a Thing for me but it just gets me so riled up. Perhaps because I grew up around and working in memory care facilities and I've seen just how impossible this type of care is and how taxing it is even for people who get to clock out at the end of the day. The Alzheimer's association always puts out a great facts and figures document every year that highlights the enormity of this issue

*In 2016, 15.9 million family and friends provided 18.2 billion hours of unpaid assistance to those with Alzheimer's and other dementias, a contribution to the nation valued at $230.1 billion.

*Approximately two-thirds of caregivers are women, and 34 percent are age 65 or older.

*41 percent of caregivers have a household income of $50,000 or less.

*Approximately one quarter of dementia caregivers are "sandwich generation" caregivers — meaning that they care not only for an aging parent, but also for children under age 18.

*35% of people caring for people with Alzheimer's report their health has gotten worse since becoming a caregiver.

This problem is only going to get so, so much worse in the next 20 years.

It's another egregious example of women doing a whole shit ton of unpaid labor.

My crazy (non-economist) solution is this: a whole bunch of these people with Alzheimer's who are being cared for by family members could quality for Medicaid-paid nursing home care. The average annual cost for a shared room in a nursing home is $81,000. So I figure these caregivers are saving the gov't that much money every year, which doesn't even take into account the detriment to their health and that cost. What if we just, I don't know, paid these people? Pay them half even. Your income goes from 50,000 to 90,000 a year, that makes a difference. Now you can even afford to hire some at-home care help (which is another problem - most home visit caretakers are minority single mothers who make $17,000 a year but that's another issue). Seems to me that the outcome of this would be 1) better health for the patient; 2) better health for the caretaker; 3) cheaper; 4) more overall efficiency in the system. Isn't that the goal of all health care reform?

Anyway, keep beating this drum. It's important.
posted by Lutoslawski at 7:11 AM on August 8 [23 favorites]


My crazy (non-economist) solution is this: a whole bunch of these people with Alzheimer's who are being cared for by family members could quality for Medicaid-paid nursing home care.

The biggest problem is that there are very few Medi-cal (medi-caid) beds available. My mom's board and care is $1600/month, which medi-cal will pick up eventually. But if you can afford an 80,000/year facility I don't think you'd qualify for medi-cal? $1600 is the cheapest available, and the social worker found three beds in all of So Cal to choose from; two were right out of One Flew Over The Cukoo's nest. (The third was some kind of non-religious miracle and my mom is very happy there.)

There's a Jewish home here with renowned Alzheimer's care. It's 10K a month, with a three-year wait for a medi-cal bed.
posted by Room 641-A at 7:28 AM on August 8 [5 favorites]


The article absolutely nails the situation my wife and I are in. We care for her mother who has Alzheimer's. She has lived with us for 12 years now, and we anticipate she'll be with us until she passes - whenever that is (probably years from now). Two passages captured our situation. First:
“Caregiving is done with a lot of love and affection, but there’s a lot of loss involved,” said Carey Wexler Sherman, a gerontologist at the University of Michigan Institute for Social Research. “People talk about friends disappearing, about even family members not wanting to be involved. It’s a lonely business.”
We - my wife more than I - are the team caring for my MiL. Other family has pulled away, and rarely engages. While I get to escape to go to work, my wife focuses the majority of her time as the primary caregiver. My MiL is isn't bad (yet) but can't cook, can't operate the television, can't turn on the CD player. We have to watch to make sure she doesn't fall, and that she handles the toilet properly.

Second:
Sometimes, caregivers isolate themselves. Barbara Moscowitz, senior geriatric social worker at Massachusetts General Hospital, hears clients lament that with a loved one whose dementia-related behavior can be startling, venturing out in public creates more apprehension than pleasure.
We're both introverted as it is, and having to ramp up to get my MiL out in public is taxing. Adding in the challenge of how she'll behave, her energy level with walking, explaining what's going on and countless other worries, it's easier to stay home. We feel comfortable with leaving her alone for a couple hours, but that just gives time to do grocery shopping or run some quick errands. No time to relax, and not worry how she's doing.

We are committed and devoted to her care, but it absolutely is a lonely business.
posted by jazon at 8:22 AM on August 8 [9 favorites]


The article absolutely nails the situation my wife and I are in. We care for her mother who has Alzheimer's. She has lived with us for 12 years now ...

12 YEARS?!?

My mom, who has dementia, has lived with my wife and I for two years, and I can't even fathom 12. Mom has dementia, and I'm a wheelchair-user with chronic health issues. I have no idea how my wife -- herself suffering from knee and ankle problems -- manages.
posted by DrAstroZoom at 9:22 AM on August 8 [7 favorites]


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