[randsp]

It is hard to describe how painful was to read about the overwhelming evidence of study manipulation by Masliah and others a few months ago. My father-in-law was diagnosed with this terrible disease in his late fifties, but before that he went through several misdiagnoses, including depression. He lost his job and i am now convinced that it was because he was on early stage of the disease, which affected his memory and ability to communicate. I later learned about this being something under study because apparently is a pattern: https://www.nytimes.com/2024/05/31/business/economy/alzheime... This triggered all kind of troubles as you might imagine.

After that, he went through a violent period and within a few months he could no longer speak or eat on his own. He now wears diapers and we had to hire a professional caregiver to help with his daily routines. Our family impact has been dramatic, we are not a large family so we had to spend a significant amount of resources to help his wife who is his main care giver. We have since received some assistance from the public healthcare system, but it took time, and the support did not keep pace with the rapid progression of his symptoms.

I have seen relatives pass away from other causes but this is by far one of the cruelest ways to die. After a few years of dealing with this disease, i cannot fathom any justification - good or bad - for the massive deception orchestrated, apparently for the sake of Masliag and others' careers. I hope they are held accountable and brought to trial soon for the damage they have caused to society and science.

[implmntatio]

if you can think of things that you or your family might have done to start managing the consequences earlier, please write them down and share.

early onset Alzheimers is a slow burn beast but you can't blame anyone for not seeing what you see or even denying the evidence.

my pops always thought his mom is just fucking with him when she showed symptoms and then (grandma) laughed about it a few minutes later ...

when I witness others or hear them talk about their parents, I'm quite often reminded of my grandma and wonder how to manage these early symptoms and set up frameworks and strategies to reduce the subliminal and subtextual reinforcement of negative reactions to triggers, both in the care-taker and the Alzheimers "patient"/ loved one ...

[randsp]

Professional advice and care are the best options but i think i can share some of our personal experience for what they are worth. I would say having a certain level of pragmatism is important without being insensitive with the person with this disease, for example one thing i wish we would have done earlier was to declare my father in law as "legally incapacitated", i am not sure what is the proper term in english but here in spain it means that they cannot legally bind themselves to anything without the consent of a tutor/guardian. This is a painful process because it takes time (judges, doctors, etc... must asses the case) and this acts as a constant reminder to the person with the disease of what is coming, making him/her feels useless. Another key aspect is being focused from the begining on what the healthcare system can provide for your relative as the disease progress, these bureucratic processes tend to be slow on my country, and since dementia progresses at different rates for each individual, it’s best to start looking into options early. Symptoms might advance rapidly in younger individuals.

Equally important is being sensitive and getting ready for what is to come, i don't think you can be optimistic so instead we focused on appreciating the time together, i started having more personal conversations with my father in law, we got closer and somehow that bond remains. We learned to be very patient because he went through a long period of aphasia, if he got stuck on certain phrases, we just gave him a bit of push completing the words he was missing. We also took long walks on nature. Being surrounded by a peaceful environment is important. As the disease advanced, he started to feel very confused, he couldn't recognize us sometimes and that made him angry, there was usually small hints before the outburst triggered, again being patient and trying to calm him down was important. Because he was relative young he was physically strong what was challenging but it is manageable, i think he needed to feel safe so focusing on that was a good strategy. Now he is not longer able to communicate, occasionally he says a few words and sometimes it can be even funny, it is fascinating how the brain still responds to humor even with dementia. When I sense he is nervous, I gently touch his back, and I can feel how much it reassures him. Support groups to share these experiences are important, take all the help you can get. When the disease reaches its final stages, seek the help of professionals. Their support can help the family maintain a sense of normalcy and be functional.

By the way, I just realized that I said it’s hard to be optimistic, but one thing I can truly say is that I value life so much more now. Every day that I wake up and feel present is a gift.

[virginwidow]

THANK YOU Pops died of Parkinson & Mum of Dementia.

My sole (selfish) aim on this matter being 500% certain my son be not burdened by my own demise. Brought a GOOD Lad into world I struggle to make sense of...

Consult:

https://www.youtube.com/watch?v=8QxIIz1yEsA

Thanks also for re-enforcing my silly notion that with few exception humanity are by nature GOOD, aside "Under Duress" ...

This is the sort of data (shove it under the rug) which profit-seeking 'studies' overlook. Inclusion could affect the bottom line, ya see.

Fossils (old folk) retired, what tax revenue do we generate?

It is terrifyin' being my age. A "dementia" diagnosis is very profitable to INSURANCE as in Medicare (EN-US) see?

Invitation for curious minds

Please AUDIT "treatment guidelines". Center for Medicare Services. FOLLOW THE MONEY

I close with HAY'LL NAW, n0t on our Watch. Should only myself stand alone, no problem at all... WE ARE NEVER ALONE

https://youtu.be/8QxIIz1yEsA

[stef25]

Make sure you always have some energy left when taking care of him. Don't burn yourself out. Like they say to new parents - regularly get a babysitter no matter what.

My pops died from Lewy body dementia about 2 months ago. It gets much rougher toward the end. The more carers you have the better, it's almost impossible by yourself. You'll never forget the period you're going through now. Make sure you have no regrets when it's all over.

[Balgair]

I'm so sorry to hear about what you are going through.

one small piece of advice from someone who had to do something similar with close family: Look into death doulas. Though your FiL is not dying, these people have a lot of resources and experience and may be able to assist you as life is so chaotic.

Again, so sorry to hear about your situation and what you're going through.

[cluckindan]

Counteradvice. Avoid seeking help from any kind of denominational spirit guides. Illusions do not relieve grief.

[Balgair]

Oh no.

No, death doulas aren't woo woo, at least the ones I've used.

They're more : Here's a the best brand of diapers, here' how to move a 200lbs man about in a bed to clean him, here's good local grief support groups, etc. In my experience, the paid home aids aren't really good at those things.