OT: Alzheimers Disease

[William]

...SUCKS!!

I try not to put much personal stuff out here but I just wanted to comment...I watched my grandmother progress through the stages of AD and it was heart breaking. Now my MIL just passed with AD and it was hard to watch and ultimately horrible. Everyone did the best they could for her but ultimately there is only so much you can do.

AD sucks.


That is all.




William

[Blue Jays]

True, indeed.
I have seen it from afar with parents-of-friends and it is indeed heartbreaking.
Sorry to learn of your recent unfortunate loss. :-(

[gasman]

Yes it does. The person loses who they are and the family struggles with the continual changes and I think the family is who really suffers.

There can be some humor at times. My wife’s uncle had AD and one of his sons was driving his Dad to a good facility in Kansas near another son. One night while they stopped in a hotel for the night the father and son were talking. Dad thought he was on shore leave from the Navy in WW 2. After talking a while the Dad said “ I should introduce you to my sister, you're a great guy and you two would really hit it off.” His son went along and didn’t have the heart to tell him that his sister had died years before.
The story was small solace from the other injustices that come with the disease.

AD does suck. I’m sorry for your wife and family.

[Veloo]

Totally sucks.
What I did find interesting was how decades old memories could surface but short term stuff had no staying power.

[William]

Totally sucks.
What I did find interesting was how decades old memories could surface but short term stuff had no staying power.

Yes, in my MIL's case she had things happen to her when she was young that she would never talk about. Those memories surfacing were not good and led to extreme anxiety.







W.

[ElvisMerckx]

Not AD, but I just went through something similar with a family member. In his case it was dementia that resulted from several brain tumors. My family member went "back in time" too, which was completely spooky. He passed last Tuesday morning after an excruciating two months of active dying.

[Black Dog]

It does suck. I am going through it with my 83 year old father. He no longer recognizes my brother or myself. My mother died when I was young and he often confuses his partner with her. He struggles to comprehend what is going on around him most of the time. The anxiety and confusion are hard to watch. He still does have good moments and really spends his most lucid momemts recounting and reliving his days as a sub-mariner in the navy. Some really salty and scary tales come out. Active duty spying on Russian ports got very hairy at times, the Cold War was not just posturing. Getting depth charged by Russian and NATO ships (could not identify as friend or foe due to secrecy) in a cramped diesel electric sub was intense. These tours lasted around 16 weeks; all of it submerged.

There is no short term memory and his recall of the past continually moves back in time where there are less and less memories to draw from. You have to appreciate the few and small moments that are funny or sweet otherwise is all just dispare. It is in so many ways a death before dying. Yup, it really sucks.

[AngryScientist]

Been through this a few rounds also; and concur it sucks. It can be immensely difficult on the caregiver; I actually think it can be far too much to handle watching someone you love go through this as the primary caregiver. One feels trapped guilty sad mad and helpless all at the same time.

As hard as it is watching a parent go through this; it must be immeasurably harder as a partner; watching someone you hoped to spend the rest of your life with slipping away.

No good answers unfortunately.

[carpediemracing]

I think this kind of thing is a hidden thing in (our) society. A lot of people I know with older parents are going through similar situations.

I was lucky enough that I could quit working for a year to look after my dad during his last year. It wasn't very good - he hadn't spoken for many years, couldn't really take care of himself, etc. I took over after my brother started getting burnt out after caring for him for 6? 7? 8? years. The last year was bad enough that I told friends that if I got divorced at that time it'd be because of the stress of caring for my dad. (For the record the Missus was extremely supportive and divorce wasn't even a thought.)

Part of what sucks is that there is no structure in place for any long term care. People are struggling with the long term fiscal implications of such care. The nursing homes know this - the first question they'd ask is "does your father have any assets to his name?". It's terrible.

[verticaldoug]

CDR nails it:

'Part of what sucks is that there is no structure in place for any long term care. People are struggling with the long term fiscal implications of such care. The nursing homes know this - the first question they'd ask is "does your father have any assets to his name?". It's terrible. '

I worry there is a link between Type 2 Diabetes and AZ which means a surge in AZ in the future. Society is not set up to handle this. It's worse than terrible.

[2metalhips]

I do a lot of research into health, wellness, and nutrition. I would recommend looking into this. It's not all bad luck.

https://teamsherzai.com/

[2metalhips]

CDR nails it:

'Part of what sucks is that there is no structure in place for any long term care. People are struggling with the long term fiscal implications of such care. The nursing homes know this - the first question they'd ask is "does your father have any assets to his name?". It's terrible. '

I worry there is a link between Type 2 Diabetes and AZ which means a surge in AZ in the future. Society is not set up to handle this. It's worse than terrible.

You are correct, in some circles dementia is starting to be referred to as Type 3 diabetes.

[el cheapo]

Was a caregiver for my mom for two years while battling A.L.S. At the time, my 88 year old father was there every step of the way helping as much as he could. After my mom passed it was my Dad who needed help. I've been a caregiver almost ten years which is hard to believe. Thankfully my father is still able to live on his own with lots of help from me. We have had "the talk" about him possibly losing his mental faculties as he ages. He says it will never happen to him. As for help taking care of my parents...my brother choose not to. Another hard lesson of life.

[seanile]

He says it will never happen to him. i'm trying to have these talks with my parents while they're in their mid-60s now. they're more receptive than some it seems, but it's hard to have these talks when the only times i am home are for holidays, birthdays, or celebrations...bit of a downer.
i commend your efforts, and you need to keep trying to crack him of this position. it's an unfortunate measure of pride/ego that won't help you both prepare for it if it does come about..

[Rpoole8537]

My mom had AD but died from a blood clot in her brain. She had not known me for two years, so I saw the blood clot as somewhat of a blessing. Her quality of life was sinking very quickly. It felt strange to me that I lost her over a four year period. After the memorial service, I felt that the person that we buried was not really my mom. The grief period was prolonged. I was fortunate to have a sister was was strong and supportive. AD took a lot out of the two of us for four years. Yes, it sucks.

[2LeftCleats]

Any form of dementia sucks. Maybe more so for the caregivers. It’s frightening to watch it consume a parent. We can’t help but fear the same loss of control at the end of our own lives and what it could mean for our children. Dying of most other conditions generally allows for more planning and clarifying an exit strategy. Dementia steals that choice.

[Cantdog]

This thread is a reminder to complete advance care planning with loved ones, including discussions of nominating a health care proxy, sharif with loved ones and your medical team your values, goals and wishes, and thinking ahead in regards to decisions about feeding, antibiotic usage, code status, etc.

Resources: https://fivewishes.org/shop/order/product/five-wishes
http://www.gowish.org/
https://www.alz.org/help-support/caregiving/care-options/hospice-care
https://dementia-directive.org/
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6393818/
https://www.marcusinstituteforaging.org/sites/default/files/files/DementiaGuideForFamilies.pdf

[Kingfisher]

It is indeed a horrible disease. It just ended for my wife of 24 years. She was diagnosed 5 years ago with mild memory loss. All of the family could see it, especially me. We were a very active couple, cycling, kayaking etc. It got to the point where I would try and go out on a ride with her but she had forgotten how to mount the bike. It was heartbreaking for her and myself. I retired early to care for her at home. I did the best I could for 4 years and then it became too much. I almost went to the ER myself due to the stress. I found a nursing home alzheimers unit about a year and half ago and it was one of the hardest things I've ever done. Fortunately, she did not really know what was happening and didn't quite understand her new living conditions. I know it was harder on me. She remained happy throughout her stay there but did take a turn for the worse about two months ago and passed away peacefully. It was truly a blessing. If you've ever visited a place like this you will know exactly what I mean. The facility was fine, but this is not the kind of life anyone should have to experience.

[oldpotatoe]

Any form of dementia sucks. Maybe more so for the caregivers. It’s frightening to watch it consume a parent. We can’t help but fear the same loss of control at the end of our own lives and what it could mean for our children. Dying of most other conditions generally allows for more planning and clarifying an exit strategy. Dementia steals that choice.

Wife was her mom's primary caregiver as she descended into Alzheimers..Mom in law was in a good place, she literally didn't know how well off she was..but seemed happy till the end, which in a lot of ways, was a blessing...

For Kingfisher right above..so sorry for your loss..it's tough on any caregiver but caring for a spouse for a spouse, must be doubly tough..

[wc1934]

It is indeed a horrible disease. It just ended for my wife of 24 years. She was diagnosed 5 years ago with mild memory loss. All of the family could see it, especially me. We were a very active couple, cycling, kayaking etc. It got to the point where I would try and go out on a ride with her but she had forgotten how to mount the bike. It was heartbreaking for her and myself. I retired early to care for her at home. I did the best I could for 4 years and then it became too much. I almost went to the ER myself due to the stress. I found a nursing home alzheimers unit about a year and half ago and it was one of the hardest things I've ever done. Fortunately, she did not really know what was happening and didn't quite understand her new living conditions. I know it was harder on me. She remained happy throughout her stay there but did take a turn for the worse about two months ago and passed away peacefully. It was truly a blessing. If you've ever visited a place like this you will know exactly what I mean. The facility was fine, but this is not the kind of life anyone should have to experience.

Peace be with you, Kingfisher!

[Mzilliox]

i cant imagine this with a spouse. Im taking care of my AD dad now because my sister was taking a bit more from the cookie pot than the cookie pot had. its sad to see a relative turn into a different person, even more sad to watch a relative take advantage of a relative who cant take care of themselves.

you guys said it, i would never have imagined these stress levels, my riding is way down this summer.