Memory loss / dementia - progression and treatment

[ivinsfan]

You mentioned this earlier, and it sounds like there is mutual respect between you and the partner. That is great, but you need to also figure out how much this partner should have in the say of your dad's care and in the finances.

I have no details, and have no recommendation other than you all getting on the same page BEFORE this go south.

Well since they are the caretaker, I would say their opinion is pretty important. Money would be a separate issue. After 12 years hopefully the couple has a money plan in place.

 

[Sojourner]

This book has been an invaluable resource for us:
https://www.amazon.com/36-Hour-Day-Alzheimer-Disease-Dementias/dp/1455521159

Thanks for this recommendation. Looks like a "must read" for me and my family.

 

[Sojourner]

You mentioned this earlier, and it sounds like there is mutual respect between you and the partner. That is great, but you need to also figure out how much this partner should have in the say of your dad's care and in the finances.

I have no details, and have no recommendation other than you all getting on the same page BEFORE this go south.

Yes, there is a lot of mutual respect between us, along with a closeness and almost a family-like bond that has been forged over many years. And yes, regardless of these good relations, we (my siblings and I, with input from DF's partner) need to figure out how best to proceed with Dad's finances and other related matters. That is on our near-term agenda.

 

[Keim]

Thanks for this recommendation. Looks like a "must read" for me and my family.

Just passing on the favor an experienced friend did for my family... Best wishes.

 

[Exterous]

We managed this in literally at the last second. And I'm not entirely certain the family lawyer didn't just look the other way. He knew our family, I don't know if that made a difference. He made a point not ask my MIL any questions as the POA meeting.

We're starting down the memory loss path with my mother but we're not to the point of invoking POAs yet. I'm really grateful for the long history my mom (and father when he was alive) has with their financial guy because I know there is someone familiar with her circumstances and existing habits helping watch over her. I hadn't ever considered that angle before but if anyone gets a hold of her password, convinces her to get a large sum of money for them or she keeps asking for the same things over and over again it's a huge piece of mind to know that he'd be able to severely limit the financial damage and throw a warning to me. It's a tricky and complicated path to navigate and I'm appreciative for benefits these long relationships can provide

 

[frances]

Get POAs in place BEFORE the memory issues become much more severe.
In my state (Georgia) it gets a little sticky if someone who has recognized memory issues signs financial documents or other documents and any interested parties decide to contest them.
My mom's POA has been in place for more than 20 years.

 

[Rusa]

The companion

Is DF in a common law marriage state? The companion may have more rights than you think.

 

[jayanu]

Memory care is expensive. You might also check out Medicaid options for memory care, and when he would qualify, and what requirements they have. I think some may require a year or two at his cost before they accept Medicaid. .

Dementia, Parkinson's, etc. Neurological diseases are expensive to treat mainly because the person can easily live for 8-12 years vs. other diseases.

We chose Type-A, nonprofit Continued Care Retirement Community (CCRC) with A financial rating by Fitch so we are at peace. A or higher rating and nonprofit status are important to the financial health of the CCRC. Type-A means that you do not need long term care insurance. If and when you need medical care like assisted living, nursing home, Demita care, or Hospice you will get that at no extra cost, as long as you need it. The cost is covered in your monthly cost. Type-B and Type-C will charge the medical cost either at a discounted rate or at the market rate. And as you know Medical cost increases every year. In NJ it was $125K/year as the median for semi-private room per person. Go to Genworth's website to see the median cost in your state today and in the future.

Medicare does not cover this cost. Medicaid has a lookback period of 5 years so one must have emptied the assets and does not have more than $2,000 in assets etc., rules so tough to get that assistance. And CCRC will not admit anyone who has neurological disease symptoms, so it is important to plan ahead.

I wrote an article about what is CCRC, why we decided to move to a CCRC, and why we chose Willow Valley Communities as our CCRC in Lancaster, PA.

US News did a survey of 15,000+ nursing homes and ~2,000 CCRCs in the nation and chose the top 400. They chose forty-five top CCRC. 18 out of the top 45 (40%) are in PA and Willow Valley is rated number 1.

https://docs.google.com/document/d/1TkRo92IWiiSWGh6QrfqN-YDpq0ge34HLmz0-zvkYnU4/edit

 

[kingkarmann]

The three best word of advice?
1. P.O.A.
2. Take care of yourself
3. Patience

 

[shafer9]

That was an excellent description, thank you for that. My mother had dementia for about seven or eight years, she was on hospice for 4 1/2 years. I didn’t even know that was possible. It was not a happy time that I told myself that if and when it happened to me, I would not go through the craft my mother went through. I still mean that. I must say I really like your description of circling the drain, that’s pretty much what it was. I don’t want to go there.

 

[ExFlyBoy5]

People expect a pill to fix everything. A pill rarely fixes anything.

The effects of a plant based diet are supported by studies for years.

I tend to doubt you will believe me.

I toss it out so people can do their own research.

I forgot to add to my list above more on the microbiome. It has been proven that dementia and related disorders are often linked to dysbiosis. There are many studies on this. Here is one: "Our findings highlight the role of gut microbiota dysbiosis‐promoted neuroinflammation and neurodegeneration in AD progression, and further suggest a novel strategy for AD therapy by targeting gut‐brain axis." https://alz-journals.onlinelibrary.wiley.com/doi/abs/10.1002/alz.044151

There are also many studies on how to have a healthy gut microbiome and self tests you can order on Amazon for $100 - $200 that tell you the major types of bacteria in your gut and what you can do to improve your microbiome. The last doctor ordered medical test I had was $7K and told me nothing of value. I'm going to order a load of these kinds of inexpensive at home gut and metabolite tests on my own and tweak my diet until they come out as good as I can get them. That is my 2021 plan.

I started with the Food Marble breath analyzer and it is amazing. I am pretty convinced microbiome and related testing is going to be the future of modern medicine. It is wild how many diseases already have been linked to specific kinds of altered gut microbiomes.

Thanks for the detailed response. I will take a gander at some of the stuff you have posted! Unlike a lot of folks...I try to stay away from the echo chambers and am very open to learning new things. I like information, not affirmation.

 

[WestUniversity]

Fortunately he is not in denial but nobody hassles him over not remembering so maybe he doesn't notice.

From my experience, nothing is gained by trying to correct the patient. They remember what they remember and they believe what they believe. Attempts to correct or challenge them on various matters of fact, as they see them, always end up bad. Keep the conversation light and deflect to other safe topics as necessary. If the conversation suddenly took a sharp right turn my parent never noticed it when it happened...

 

[Sunset]

Dementia, Parkinson's, etc. Neurological diseases are expensive to treat mainly because the person can easily live for 8-12 years vs. other diseases.

We chose Type-A, nonprofit Continued Care Retirement Community (CCRC) with A financial rating by Fitch so we are at peace. A or higher rating and nonprofit status are important to the financial health of the CCRC. Type-A means that you do not need long term care insurance. If and when you need medical care like assisted living, nursing home, Demita care, or Hospice you will get that at no extra cost, as long as you need it. The cost is covered in your monthly cost. Type-B and Type-C will charge the medical cost either at a discounted rate or at the market rate. And as you know Medical cost increases every year. In NJ it was $125K/year as the median for semi-private room per person. Go to Genworth's website to see the median cost in your state today and in the future.

Medicare does not cover this cost. Medicaid has a lookback period of 5 years so one must have emptied the assets and does not have more than $2,000 in assets etc., rules so tough to get that assistance. And CCRC will not admit anyone who has neurological disease symptoms, so it is important to plan ahead.

I wrote an article about what is CCRC, why we decided to move to a CCRC, and why we chose Willow Valley Communities as our CCRC in Lancaster, PA.

US News did a survey of 15,000+ nursing homes and ~2,000 CCRCs in the nation and chose the top 400. They chose forty-five top CCRC. 18 out of the top 45 (40%) are in PA and Willow Valley is rated number 1.

https://docs.google.com/document/d/1TkRo92IWiiSWGh6QrfqN-YDpq0ge34HLmz0-zvkYnU4/edit

Really appreciate this write up.
It will make interesting reading, and give us something to think about.

 

[twaddle]

I hope this isn't too controversial, but ketogenic diets have been shown to help. I bring this up now because a new study was just published, and it was an RCT (gold standard):
https://alzres.biomedcentral.com/track/pdf/10.1186/s13195-021-00783-x.pdf

 

[jayanu]

Yes, several studies have shown that a Ketogenic diet is good for memory loss slowdown.

 

[twaddle]

Yes, several studies have shown that a Ketogenic diet is good for memory loss slowdown.

This one also showed that compliance was good, and that surprised me a little bit. I could never sell my parents on the idea.