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June is Alzheimer's & Brain Awareness Month

IOnceWasLegend

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For those who don't know, June is Alzheimer's disease and brain awareness month. Over 6 million people in the US, and 57 million people worldwide, suffer from Alzheimer's disease or a related dementia. These numbers are expected to increase significantly by 2050 and, as yet, there is no disease-modifying therapy.

Those of us with a loved one that is suffering from dementia, or has passed on, know the special kind of hell this diseases cause. It tends to be an invisible and private pain, but—in light of raising awareness—I just wanted to bring it up and make an offer to talk about it. Personal stories, or - if you're interested - I did my post-doc in Alzheimer's disease and related dementias, so I'm happy to talk about the underlying science, state of the field, or anything in general.
 
Oof, hard but important topic. My mother passed earlier this year after a long battle with early-onset Alzheimers. She was diagnosed officially about 8 years ago, but there were lots of signs beforehand. She unfortunately suffered a small stroke right after, followed a couple weeks later by a large stroke, and immediately lost a lot of cognition and control of her left side arms and legs.

Even with that, she did make it a long time through the care of my dad and my one sister who watched over her for years. I think she might've been officially under a hospice regime for ... geez, multiple years. Regardless, hard still to see the slow decline and strain it caused, even from a highly decreased starting point (post-stroke).

My grandparents all had dementia before they passed, as did uncles and aunts, and my dad was starting to show signs before he just had a bad head injury, so I know it's coming for me some day. Scary stuff, and I hope for the best for those of you doing research in that area. Not just for my own selfish reasons, but just generally that's a sucky way to go.

Tying into reefing, one thing I've done a couple times is using donations as a bargaining aspect in selling on CL / FB Marketplace / ... I'll usually tell people I'll hold things for them once they send me a screenshot of having donated to a cause, or I'll take partial payment through as donations. That effectively gives them 50% off that chunk (donations being a tax write-off), and hopefully gets people thinking about this stuff and maybe will get someone eventually to become a habitual giver to a variety of charities.

"I'm asking $100, you're trying to offer $80; how about $80 plus you donate some amount to alz.org (or another charity) and screenshot it. I'll hold it for you then".
 
My grandparents all had dementia before they passed, as did uncles and aunts, and my dad was starting to show signs before he just had a bad head injury, so I know it's coming for me some day. Scary stuff, and I hope for the best for those of you doing research in that area. Not just for my own selfish reasons, but just generally that's a sucky way to go.

Tying into reefing, one thing I've done a couple times is using donations as a bargaining aspect in selling on CL / FB Marketplace / ... I'll usually tell people I'll hold things for them once they send me a screenshot of having donated to a cause, or I'll take partial payment through as donations. That effectively gives them 50% off that chunk (donations being a tax write-off), and hopefully gets people thinking about this stuff and maybe will get someone eventually to become a habitual giver to a variety of charities.

"I'm asking $100, you're trying to offer $80; how about $80 plus you donate some amount to alz.org (or another charity) and screenshot it. I'll hold it for you then".
I no longer do research in this area, but my job—and my personal interests—keep me pretty up-to-date in new developments. Plus, as I like to say, you can take the scientist out of the lab but not vice-versa. :)

I really, really like that idea. I'm gonna have to use it going forward, and thank you for the insight.
 
My mother (and our family) had a very long and horrible hell of early-onset Lewy Body dementia and who knows what else. I left work for several years to care for my parents and I am sobbing now bc dementia is so awful and I was never able to come to terms with it. I met the most awesome doctors, therapists, day program providers, skilled nursing facility staff and programs, and fellow patients but it was still all so horrible what happened to my mother. My experience with her was the exact opposite of the aging, physical decline, and natural and peaceful death of my da. I was fortunate to be his main caregiver with help from my siblings. If anyone needs to talk about what they are going through or needs to brainstorm solutions to issues or a respite, feel free to contact me. I am interested and (used to be) skilled with dealing with people with dementia, but just couldn't feel okay about it with my mother then or now.
@IOnceWasLegend you are kind to have started this thread. I find it interesting how dementia affects people in any group I am part of when the topic comes up.
 
My father has dementia, I don't know if it's really bad or not as I have no point of reference with others I suppose even a mild case is "really bad" if you've never dealt with it. It's one of those things that when we finally pegged it we realized all the signs that were staring us in the face, one of the things was he loved to go to Lowes (which was near by) and we found in his garage an absolute butt ton of weed whacker string replacements and at least 5 weed whackers all of which worked he just forgot that he had them and kept buying them.

One day I got a phone call from the San Bruno PD asking if I knew where my father was, and a bit later my mom called too, turns out dad left the day before and never came back, as it turns out he got confused and didn't know how to get home, he eventually got home about 11am (roughly 18 hours later) was really tired etc, police came talked to him and a few days later he got a summons to the DMV, I drove him there and luckily after asking him some questions, his license got forever revoked. He professes they were out to get him from the beginning but listening to his answers that he gave there was definitely something wrong and he was completely oblivious to it.. We were just thankful that he didn't injury or kill someone while driving, and luckily the DMV stepped in to stop him forever.

But yeah it's hard, my mom is over an age that she can't take care of him, and one day she got so stressed out she had to go to the ER due to all sorts of physical things, so for a few days I had to stay with my father and oh boy that was not fun. Between sleeping pretty much all day, and getting up constantly in the middle of the night to go to the bathroom, I realized very quickly that I couldn't do that either or I should say that I wanted no part of doing that. The difference between my mom and me is she's hard of hearing so doesn't hear him every time he gets up, wanders out of the house, etc, where as I do, there were also some other things I noticed that my mom didn't.

Luckily my father is in a care facility now where professionals can handle it, unfortunately the health care system of this country failed the elderly long ago when it decided that any sort of help for the elderly should be done pharmaceutically and not through actual care because it was cheaper to give pills than to pay people to care which means the cost for said care is more than most people pay for rent in the bay area, and while my mom can afford it for now if it lasts too long she won't be able to. Veterans benefits apparently won't help either because their net worth is "too much" and I'm not sure what will happen then maybe when they go through all their savings the VA will assist with care in some way not that they could afford much then.

Then there's me wondering if what he has in is anyway genetic, as there are times when I'd forget something like a common word and then wonder if these are early signs for me, and I fear putting my wife through that, truly hoping death takes me before I get to the stage my father is. Then I also feel like a horrible person for hoping my father just goes to sleep one night and doesn't wake up for the sake of my mother, as grief can be temporary but the stress of dealing with this is never ending even when he's in a care facility.
 
I lost one grandfather to complications from Alzheimer's and my other grandfather to complications from Parkinson's. My GF's father in-law has Alzheimer's, he sees a lot of people that aren't there. It drives his wife up the wall, so sometimes he'll pretend to see them just for her reaction... so at least he still has fun (in his own way).

@MolaMola my mom did the same with her dad and Alzheimer's. It was hard on her, I can only imagine how it was for you. I think its a real show of character though, you're a truly kind person!

@sfsuphysics what other warning signs did you see? My GF and I feel her mom has dementia, or some form of memory loss. More so then someone her age should be forgetting.
 
My mother (and our family) had a very long and horrible hell of early-onset Lewy Body dementia and who knows what else. I left work for several years to care for my parents and I am sobbing now bc dementia is so awful and I was never able to come to terms with it. I met the most awesome doctors, therapists, day program providers, skilled nursing facility staff and programs, and fellow patients but it was still all so horrible what happened to my mother. My experience with her was the exact opposite of the aging, physical decline, and natural and peaceful death of my da. I was fortunate to be his main caregiver with help from my siblings. If anyone needs to talk about what they are going through or needs to brainstorm solutions to issues or a respite, feel free to contact me. I am interested and (used to be) skilled with dealing with people with dementia, but just couldn't feel okay about it with my mother then or now.
@IOnceWasLegend you are kind to have started this thread. I find it interesting how dementia affects people in any group I am part of when the topic comes up.
It's so, so terrible because there's never any 'why' or coming to terms with it beyond what I call 'diet okay': you drink it long enough that you forget the taste of the real thing.

My father has dementia, I don't know if it's really bad or not as I have no point of reference with others I suppose even a mild case is "really bad" if you've never dealt with it. It's one of those things that when we finally pegged it we realized all the signs that were staring us in the face, one of the things was he loved to go to Lowes (which was near by) and we found in his garage an absolute butt ton of weed whacker string replacements and at least 5 weed whackers all of which worked he just forgot that he had them and kept buying them.

One day I got a phone call from the San Bruno PD asking if I knew where my father was, and a bit later my mom called too, turns out dad left the day before and never came back, as it turns out he got confused and didn't know how to get home, he eventually got home about 11am (roughly 18 hours later) was really tired etc, police came talked to him and a few days later he got a summons to the DMV, I drove him there and luckily after asking him some questions, his license got forever revoked. He professes they were out to get him from the beginning but listening to his answers that he gave there was definitely something wrong and he was completely oblivious to it.. We were just thankful that he didn't injury or kill someone while driving, and luckily the DMV stepped in to stop him forever.

But yeah it's hard, my mom is over an age that she can't take care of him, and one day she got so stressed out she had to go to the ER due to all sorts of physical things, so for a few days I had to stay with my father and oh boy that was not fun. Between sleeping pretty much all day, and getting up constantly in the middle of the night to go to the bathroom, I realized very quickly that I couldn't do that either or I should say that I wanted no part of doing that. The difference between my mom and me is she's hard of hearing so doesn't hear him every time he gets up, wanders out of the house, etc, where as I do, there were also some other things I noticed that my mom didn't.

Luckily my father is in a care facility now where professionals can handle it, unfortunately the health care system of this country failed the elderly long ago when it decided that any sort of help for the elderly should be done pharmaceutically and not through actual care because it was cheaper to give pills than to pay people to care which means the cost for said care is more than most people pay for rent in the bay area, and while my mom can afford it for now if it lasts too long she won't be able to. Veterans benefits apparently won't help either because their net worth is "too much" and I'm not sure what will happen then maybe when they go through all their savings the VA will assist with care in some way not that they could afford much then.

Then there's me wondering if what he has in is anyway genetic, as there are times when I'd forget something like a common word and then wonder if these are early signs for me, and I fear putting my wife through that, truly hoping death takes me before I get to the stage my father is. Then I also feel like a horrible person for hoping my father just goes to sleep one night and doesn't wake up for the sake of my mother, as grief can be temporary but the stress of dealing with this is never ending even when he's in a care facility.
Those experiences mirror my own and my stepmom's.

It started for my father with aphasia/speech problems. He'd forget a word, or a descriptor, or how to say something. I remember him saying, "So...are you still, um...up there?" and it took me a bit to realize that he meant up north, in Michigan, for grad school. It progressed to him seeing people that weren't there, arguing they were, and then Capgras delusion, where he would randomly make allusions to neither I nor my stepmom being the "real" versions of ourselves.

Unlike Alzheimer's, memory problems weren't present for quite a while. It wasn't until three or four years after we realized there was a definite issue that he didn't recognize me. We took a trip up to their small vacation home for some father-son bonding time. I stopped at a gas station (like your father, @sfsuphysics , his license had been revoked at that point after he'd gotten lost driving to Fresno) and used the restroom. When I came out, he was wandering the parking lot. I asked him what he was looking for and he looked at me for a long moment before going, "I'm, uh, I'm looking for my son."

For a couple years, I would go visit my dad and stepmom every other weekend, three times a month maybe. They live near Sacramento, so it's hard to make it up as often as I'd like. Despite the disease taking his mind, his body was still in great shape for his age, and he liked to walk. So he'd get up in the middle of the night, get dressed, walk around the bedroom, go back to bed, repeat. My stepmom couldn't leave him alone for any length of time, and wasn't getting more than an hour or two of uninterrupted sleep a night. I would insist she go visit friends and get out of the house on the weekends I watched him, because that was really the only respite she had.

They did everything right. They saved for retirement, planned on selling their larger primary home, moving into their small vacation home, and traveling. Instead, because of my father's illness and the complete lack of support from our healthcare system, my stepmom has had to sell pretty much every extraneous thing she owns, pinch every penny she can, and has recently started working a retail job to help make ends meet. This is in spite of the fact my wife and I provide financial support every month, which is a luxury many people cannot afford. Instead of traveling to Italy with my father like they'd always wanted, she's weighing the pros and cons of a reverse mortgage on her home or outright selling it, renting a small studio apartment, and hoping my father passes before the money runs out and we're forced to place him in a state facility.

And you're not a horrible person for thinking that. My grandfather suffered from dementia of some kind, and - after watching him go through that - my father made it very clear that he would rather be dead than have to deal with that. That, unfortunately, is not what happened. But it's not cruel to wish they would pass on, since a painless end is likely better—both for them and their loved ones—than dealing with the illness every day.
 
@BAYMAC First I would say if possible, get involved with her primary care doctor and push to get some level of memory diagnosis done. Kaiser for all their faults of largely being pill pushers actually have a pretty decent memory clinic where they do routinely test him (and yeah those tests have gotten progressively worse), granted there's no cure or anything but knowing there's a problem is a first step of preparation for what typically just gets worse. That said, in addition to constantly feeling the need to buy stuff he already had, he also tended reminisce about long ago quite often very typically saying the same thing multiple times in the span of spending the day with him, he did also have a lot to talk about being in the war which is did serve in Vietnam but before he never talked about yet couldn't stop talking about certain things like how the army ruined his feet, lastly it would be how any conversation would change to something he did in the past even if it wasn't relevant to the subject at hand, e.g. Me: "So I have to replace my water heater because it has a leak and need to borrow your dolly to move the tank" Him: "Sure no problem, so how are your cats doing?"

There were also issues with how he built stuff in his shop, but he never was a good carpenter or anything like kid making ashtray in arts & craft class level of horrible, but my uncle noticed a couple times where he did some universally stupid things with the table saw like reaching over the blade to grab something, and those we just attributed to him being horrible at using tools, but yeah now that I think of it may have been more to it than that.
 
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The problem we've run into, is her mom says "its just old age, I'm fine" and won't let it go further then that. I'm unsure how we get around that hurdle :(
 
Yeah that's a tough one, before all this stuff went down my parents told me F-all about any of their health issues except when it was so critical that they were hospitalized and I was notified out of courtesy of "hey Mike I need you to do all this stuff now!"

If she is receptive I would try to do one of the number of tests you can find online if anything just to get a baseline, it may simply be a matter of her not believing and not wanting to be bothered with making an appointment/going to the doctor so if you can do a test and it may show sign of concern it may convince her. Of course if she's anything like my parents they only go to the doctor when there is something wrong instead of getting regular checkups where a GP can maybe see some pattern of worsening progression. So give a look for MMSE test, I think they have ones you can print out too, but again she has to be receptive to it.
 
Financial stuff is a freaking maddening maze in addition to health care issues. When we finally placed my mother in long-term care (waited too long, actually - there are some amazing places and programs out there that I think can actually be better than in-home care where she basically just interacted with us and lived in an environment she perceived as confusing and unpredictable), we were thrown into the financial stuff and how to pay for it, which would eventually be Medi-Cal. No idea how much savings your parents have and what technically belongs to whom, but unless Medi-Cal rules have changed it, the primary residence is exempt from wealth calculations and belongs to the non-disabled spouse and does not count toward $ threshold. We were worried my parents would have to get a divorce on paper in order to separate their assets as people used to do, but not needed. Once she was of retirement age (early onset, remember), my mother rec'd social security and some employment pension payments. She entered LT care fully paying the crazy high amount, "spending down" non-retirement savings until she qualified for Medi-Cal. From that point, her pension and retirement account required distributions automatically went to her facility and that was all she paid. My father's finances remained separate. Mind you, they did not have much saved compared to a lot of people, but that was the system then. House title is a big deal but I know laws have changed since then so what we did is likely irrelevant.

I suggest anyone looking into LT care for a loved one check out the placement agencies advertised and/or do some visiting yourself if you have the interest, time, and can handle the stress. I went so far as to go undercover and apply for a couple entry-level care jobs and every place I visited I stalked employees in the parking lot and having breaks. My interest was not in the presentations by the admission suits, but the low wage workers who would deal with her 24/7 during feeding, hygiene, outbursts, etc. Learned A LOT from the conversations with and observations of those workers. Some places have high expectations of staff and have amazing people who treat the residents like grandparents; some do not.

My parents were much older than my peers' parents and our story began a little over 20 years ago (dragged on really long), so medical care, treatments, and people's knowledge of and fears of dementia are more widespread. I suspect most people we think have issues have already worried about it themselves and if not too far along may be scared to death about it. They may have friends who have declined from it. Depending on the relationship, a caring conversation and invitation to spend the day together to go out somewhere pleasant and also have an appt with a specialist could work. Expressing concern and that doctors can try some things to help, like with other conditions, may be acceptable to them. Definitely have someone go with them to an evaluation. Try to be patient, slow down, and remain calm. If your person is stubborn, you may lose the opportunity if you confront and try to reverse the parent-child roles. (Our experience with stopping my mother from driving was awful, and that and lots of other issues were made more difficult by family members who tried a direct, forceful approach.) My mother didn't have close friends this would have worked with, but for my best friend's mother's issue, her father's buddy and his wife were able to discuss concerns with the couple and she agreed to go to an eval, whereas she refused when my friend and her siblings suggested it.
 
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