Dementia and Alzheimer's

[SHOOTER12 8800]

My dad passed away in 1980 and never showed any problems neurologically. My mother however was a completely different story. She passed away a little over 20 years ago and was suffering from both Alzheimer's and dementia. I guess our minds and spirit allow us to forget things to prevent something from being as painful as it is. It wasn't until I read this thread I realized I had forgotten how bad of a shape mom have gotten into. My mother never used a curse word in her life until she got sick. My big introduction into how vile her language had gotten was when my sister and I were driving her to a doctor's appointment in San Antonio. My sister is in the front passenger seat and my mom was in the back. Of course I was a smoker and without thinking lit a cigarette while driving and my mother saw it. She hadn't smoked for years but constantly craved them.  I immediately caught my mistake when she started asking me for a cigarette so I threw mine out that she continued to ask. Then I got called every name in the book the coup de gras being you c*********** mother f***** give me a cigarette. I couldn't help it it's horrible as it was I busted out laughing, thank God we were pulling into the parking garage at about 2 mph because my mother suddenly went to beating the hell out of the back of my head.

God bless all of you who are trying to live through this ordeal without going crazy. Life ain't easy and sometimes it just flat sucks when you have to watch your loved ones go downhill.

 

Edited September 27, 2021 by SHOOTER12

[gaspar 102]

5 hours ago, HouTex said:

My dad has Parkinson’s and this is pretty much our current situation. It’s just horrible.

Sorry to hear about that HouTex, it’s very tough to watch your dad (and family) go through that.  If you need to reach out to chat, feel free to DM. 

[MaybeACoordinator 8349]

I am wondering about the dangers of certain cooking metals....Nobody in my family has had dementia, ever, save for my late paternal grandmother, and that was the result of a brain tumor that jumped from her lungs.

My soon-to-be-ex's dad was an extremely healthy 70-year-old and now he's been slipping into darkness for a few years now. His diagnosis has baffled doctors so far, but his condition is grim and it is horribly tragic. He really is one of the most admirable men I've met -- kind of like Jimmy Carter, without the failed presidency. (No CR.)

And now his wife is showing alarming signs too. She is also very healthy. Neither of them smoked or drank to excess except on extremely rare occasions. She is a ninja on early '60s style "home economics" and a big believer in the healthy diets of those times. 

And also, all of their cooking pans are non-stick or aluminum. And the same with my soon to be ex, who I am still very friendly with. She is kind of staggered with the recent decline of her mom, and I don't know if I should stick my nose in with unproven theories about teflon (especially) and aluminum when there is so much contradictory evidence out there. I just happen to believe that teflon is no bueno, and the anecdotal evidence from her family is supportive of that position. 

[dcbc 14465]

On 5/17/2021 at 5:13 PM, HouTex said:

We are battling Parkinson’s and dementia for both my father and my MIL. Both at 90. In many cases people are living too long. My father is living his greatest nightmare. Not being independent is way worse than death.

My mom was diagnosed with Parkinson's a  few years ago.  Some recent medical events have aggravated the dementia/confusion/whatever part of it.  We are about to get her into another assisted living facility with a memory care option.  She's strong, but mostly wheelchair bound.  It sucks watching her decline.  She always has been an amazing woman.  She was Miss Houston 1960*

Edited May 27, 2021 by dcbc

[Nonbryan 173]

Anyone have experience with hiring a in home full time care giver for an Alz patient?  If so, I'm in need of a crash course.

 

Thx

[mdmost 42999]

Topical thread is topical. My mom may be showing the early signs of dementia. She's 78 on Monday, widowed since 2015, lives with 2 caregivers who alternate every 7 days due to previous falls that necessitated a collar she has to wear around her neck due to a spinal fracture that's non-operable. She has a shunt in her head that was implanted to help her with balance.

Recently, she's been slurring when she talks, has trouble walking without shuffling her feet, and had numerous falls that we at first chalked up to balance issues but now think are more from her impulsively getting up out of bed or her chair without asking the caregivers to assist her. We took her to the hospital her neurologist was at so she could be seen by his team and checked out for things like a possible stroke. At the hospital, her demeanor changed and she was combative with the staff, refused medicines and food, and was not at all like she normally is.

The doctor believes she was suffering from delirium and was curious if we noticed any signs of dementia. She's never been the greatest at remembering specifics like dates but there have been signs that we probably should've taken better note of. She can't get a full evaluation until the delirium passes.

She's now back at the skilled nursing facility she previously had to attend because of the fall that resulted in the spinal fracture. My worry is she's not currently capable of having a conversation with us. She can start one but then trails off or gets hung up trying to find the word. She also repeats something over and over. She was reading things that were being put up on the TV in her room which was a rotating screen of resident birthdays or other info. She's had good days and bad days so far. I asked her what she had for breakfast today and she said she didn't want to eat the chicken. The chicken was the lunch item she refused. I asked her if she wanted me to bring her some snacks and she told me she wanted me to bring her "Hallmark" which was a reference to the Hallmark Channel that I put on for her as I was about to leave. She then said something about snacks as I was leaving. So it's like she's delayed in her responses. It's fairly depressing to see. I have a really good friend who went through this with his mom so he's giving me some good advice on how to handle things and what to possibly look out for. I feel bad for her older sister as she visited her today and was almost in tears when I saw her. It can't be easy watching the person you were closest to in the world get to this state. 

We need to get her to a decent baseline so we can then take her back for the 3 hour testing required to figure out if she has dementia. My fear is we may never get back to that decent baseline. Plus, the skilled nursing place is just depressing as hell. 

[Reagan1k 3024]

Seems to be some signs.  They can compensate and make you question yourself and if you are over reacting but something is up.  The docs will have some tests they can do which can show the deficiencies or compensation.

Best to get a diagnosis now.  It will only get worse- never better. 

[BabaYaga 15286]

Lost my grandmother to dementia.  Now my aunt is in a home with the same signs and fading fast.  It's tragic.  Doesn't help that small town W. Texas care/homes are crap.  More than once they mixed up her meds and sent her into a frenzy.  

[Armybrat 40822]

The dementia that runs in my family comes on at a slow rate over the years, 

Started noticing my symptoms about three years ago. The memory blips are just annoying at this point, but  the mood swings can be pretty disconcerting. Seems that I can get triggered easily and take it out on Mrs. Brat, who in turn gets upset. Maybe I’m just a natural asshole at heart?

[SurlyGator 865]

1 hour ago, Armybrat said:

Maybe I’m just a natural asshole at heart?

Well, you fit in around here, so….

[Nonbryan 173]

Are there any memory care facilities in the Central Texas area that anyone knows to be outstanding?  Or any to avoid for that matter?

[The Original Greaser Bob 2819]

Hey guys, I will read this thread, but any recommendations on good resources for just dealing with the two main issues that kids have to deal with?  The patient themselves and the spouse who doesn't want to give up control?    Any good resources would be appreciated.

I've been in denial myself and am way behind the eight ball in terms of educating myself. 

So anything touching on "How to Deal with Dementia"

 

[Nice Guy Eddie 13508]

@The Original Greaser Bob I don't know what stage you're dealing with or the current symptoms of the person but I would include professional help ASAP. It doesn't mean the physician is always 100% right but it never hurts to have as much info as you can gather. 

There are pharmaceutical and therapy options that can help or at least slow down progression.

A spouse or adult child might think it's their duty to care for their loved one, so perhaps easing into assistance can help the situation. Bring someone in for 4 hours a few times per week for specific duties and/or to give them a break.  Then expand the care even up to moving into a facility. Some people even move into a facility early in the disease.

 

[The Original Greaser Bob 2819]

We are all good on the physician care.  We are at the stage of trying to assist with in home care and trying to get the parents open to assisted living/memory care.  So the reading/books are more about understanding the issues and trying to get perspectives on the patient, the spouse who can no longer handle the patient, caregivers, and mostly to just give us siblings some things to understand/think about as we go through the process. 

The real issue we have is that non-dementia spouse does not want to accept any help.  Has a bit of a martyr complex that we need to work through.  That's the kind of stuff that the siblings need help on.

 

[Message Board User 12395]

This should have been the lead story on every newscast this weekend when one thinks about how many people and their families are suffering from this insidious disease.

A 6-month investigation by Science provided strong support for Schrag’s suspicions and raised questions about Lesné’s research. A leading independent image analyst and several top Alzheimer’s researchers—including George Perry of the University of Texas, San Antonio, and John Forsayeth of the University of California, San Francisco (UCSF)—reviewed most of Schrag’s findings at Science’s request. They concurred with his overall conclusions, which cast doubt on hundreds of images, including more than 70 in Lesné’s papers. Some look like “shockingly blatant” examples of image tampering, says Donna Wilcock, an Alzheimer’s expert at the University of Kentucky.

The authors “appeared to have composed figures by piecing together parts of photos from different experiments,” says Elisabeth Bik, a molecular biologist and well-known forensic image consultant. “The obtained experimental results might not have been the desired results, and that data might have been changed to … better fit a hypothesis.”

tldr - The last 16 years of Alzheimers research and all the money spent on that research and developing drugs is based on data that is extremely likely to be fraudulent.  So the state of the research is set back about 16 years.

Edited July 26, 2022 by Message Board User

[Nicole44 22057]

Fuck! Watching my aunt slowly die from this is heartbreaking. Fuckers! 
 

I hope karma is swift. For these bastards. Omg…

[Message Board User 12395]

When there's a metric shit-ton of money involved in grants and pharma profits, there's going to be plenty of motivation for thieves to get involved, even well-educated thieves.  

Another story from earlier this year about crooked Alzheimers swindlers researchers.

 

[torre 1285]

Saw this article today which may be beneficial to those with family members affected by Alzheimer's/ Dementia.    Fortunately,  my family has yet to be affected (knock on wood) but this article seems to offer good advice.   Very lengthy,  but worth the read.

(excerpt)

"Are you watching 60 Minutes?" she asked.

I paused. I hadn't watched the news-magazine show in decades, but I knew it aired on Sunday nights, not Thursdays. I also knew how confused Alzheimer's had made my mother-in-law. 

But Alzheimer's had robbed her of her focus, and often her words. I knew how hard that was for her, how she became frustrated to the point of tears when she couldn't make herself understood. If she thought she was watching 60 Minutes on a night it wasn't on, I was not about to disagree with her.

"Yes, I'm watching 60 Minutes!" I said instantly.

It was the right answer. In a happy, satisfied voice, she said, "They're a nice couple, aren't they?"

 

Couple? Who was the couple? Mike Wallace and Morley Safer? Weren't they dead? It didn't matter.

"Yes!" I said.

https://www.cnet.com/science/how-to-talk-to-a-loved-one-who-has-dementia-never-say-no/

[fattyflattie 4639]

We're finally at the stage where my Dad is asking my Mom who's the nice lady that's been driving him around lately.  Just an unbelievably rapid decline over the last 2 years or so.  Thoughts going out to any of yall dealing with this shit.  

[ABSR 5308]

On 7/19/2022 at 10:19 AM, The Original Greaser Bob said:

Hey guys, I will read this thread, but any recommendations on good resources for just dealing with the two main issues that kids have to deal with?  The patient themselves and the spouse who doesn't want to give up control?    Any good resources would be appreciated.

I've been in denial myself and am way behind the eight ball in terms of educating myself. 

So anything touching on "How to Deal with Dementia"

 

Late to see the question and reply, but "The 36-Hour Day: A Family Guide to Caring for People Who Have Alzheimer Disease and Other Dementias (A Johns Hopkins Press Health Book)" is highly recommended in general, and my Dad thought it was very insightful (as he dealt with my Mom).

[CleverNickname 1308]

Anyone willing to share (central Texas) what they pay for various levels of care? 

[Texzilla58 4731]

It is endemic on my dad’s side. He died at 71 but his four siblings all had it. My grandfather had fairly early onset around 65 and all of his eight siblings had it. The family homestead was out at Munday and Lipan and I wonder if that high calcium water they lived on had something g to do with it. So far none of my 14 cousins have symptoms.

Runs on my moms side as well. Her sister had it. Her mother and most of her sisters had it. Her brothers mostly died younger of the drink.

I will not inflict long term care costs on my family if I have symptoms. I was stupid and didn’t buy long term care insurance when I could. I don’t want to be in a dementia warehouse.

[Willfully Horn 8000]

My father died from early onset Alzheimer’s. My heart is with all who confront this gawdawful specter. Fuck Alzheimer’s!

So, it is fucking fantastic to be able to post the following, which will undoubtedly help humanity in our battle against this scourge. 
 

Brain Images Just Got 64 Million Times Sharper

https://today.duke.edu/2023/04/brain-images-just-got-64-million-times-sharper

[HiggyBaby 2529]

https://www.cbsnews.com/news/first-alzheimers-drug-slow-disease-leqembi-gets-full-fda-approval/

[Nicole44 22057]

My aunt is in an Alzheimer’s home. My uncle, her husband, passed away unexpectedly in May of this year. She’s in the final stages having been diagnosed in 2019. She had seizures this April and is no longer able to feed herself. She stopped eating today. They are feeding her like baby food type stuff and she has a DNR and all that. It’s just sad. I have prayed for her to be free from this and join my uncle in heaven. His death from a heart attack on May 7th, I have reasoned, was so he could get up there first. Show her around. That may be simple and stupid but like the line in Steel Magnolias that’s how I get through stuff like this. This is a horrible and hideous disease. Fuck Alzheimer’s and fuck Dementia. 

[Gladeite 375]

My MIL died of early onset Alzheimers when she was in her early 70's.  Started exhibiting signs in her mid 60's and full memory care by late 60's.  Also a family history on her side.  My wife has the APOE -e4 gene and is in her late 50 's.  We were starting to get some early warning signs during the flu bug of 2020-2021.  Read Dale Bredesen's book End of Alzheimers as recommended by a MD friend.   It makes a lot of sense and I pretty well have it memorized.  We changed diets completely to limit insulin resistance, inflammatory chemicals, etc...  Simply put, we eat a lot of natural fats, brightly colored vegetables, fish, pasture raised eggs, no processed flour or sugar and 85% chocolate and/or red wine as a treat.   It makes a real difference and has really helped with mood swings, overall cognitive ability, and outlook.  We have friends that are on the same journey and they have also experienced a "roll back of the clock".  We are all aware that the end game is fixed, but quality of life is without a doubt better.

[Willfully Horn 8000]

Well, fingers crossed.

 

”Donanemab, if approved, would compete with Eisai and Biogen's  Leqembi. Both drugs are designed to remove toxic beta amyloid plaques from the brains of people with early Alzheimer's disease.

The antibody treatments, which succeeded in slowing disease progression in clinical trials, follow three decades of failed attempts to find drugs to fight the fatal, mind-wasting disease.”

 

https://www.reuters.com/business/healthcare-pharmaceuticals/us-fda-advisers-review-eli-lilly-alzheimers-drug-2024-06-10/

[Serak The Preparer 3431]

2 hours ago, Willfully Horn said:

Well, fingers crossed.

 

”Donanemab, if approved, would compete with Eisai and Biogen's  Leqembi. Both drugs are designed to remove toxic beta amyloid plaques from the brains of people with early Alzheimer's disease.

The antibody treatments, which succeeded in slowing disease progression in clinical trials, follow three decades of failed attempts to find drugs to fight the fatal, mind-wasting disease.”

 

https://www.reuters.com/business/healthcare-pharmaceuticals/us-fda-advisers-review-eli-lilly-alzheimers-drug-2024-06-10/

Unfortunately I wouldn't hold my breath on that one, the beta amyloid connection with Alzheimer's may not be there after all. The landmark paper that all of the beta amyloid research is based on is being retracted due to manipulated data.

It really sucks, that is an incredible amount of research dollars and time being potentially poured down the drain.