My friend just got diagnosed

Renee68779

My last post disappeared, so I'll try to keep this one brief. Betty is a sweet friend of mine. An ex-school teacher, she is very smart, very kind and upbeat. I've been providing paid "companion care" for her this past year or so, 2 to 4 days a week. Her memory has been getting progressively worse for the last year or two, and finally, last week, her neurologist reviewed her recent pet scan and told us, she has "early onset Alzheimer's."

You can suspect it, but it still feels like a blow. I worry for my friend and I worry for me, because...I feel very inadequate indeed for whatever the future may hold. I love Betty and mean never to abandon her, but I just wonder about "what happens next."

She is 80 years old. No family to speak of. Financially secure. Has a good social circle of dear church friends, but they are all old too. Has a great primary care physician. Is set to begin twice monthly infusion treatments with something called LEQEMBI or something like that.

So what is next? What should I be doing, what should I expect to see, what...I don't know. Any any any advice whatsoever is desperately desired. Thank you!

dancsfo

It's complex, but given Betty has no family to speak of, you may want to look into a power of attorney so medical or financial decisions can be made. As the disease progresses, it may place additional complex burdens on you, so reading about caregiving is useful. Once you can no longer care on your own, getting additional help and/or placement into a facility may need to be planned for. It's still early stage (mild), but it can degrade, even with the infusion treatment (which isn't a cure, but more of a way to forestall decline)

H1235

Welcome, I’m glad you found us. What a great friend. Are legal matters in order? Someone should be appointed DPOA. If she seems hesitant you might just suggest it is something necessary for down the road. This is very important. Many with dementia don’t recognize their symptoms or limitations and if left to make their own decisions they may not get the care they need (because they don’t think they need any). We have a saying here, never try to reason with a person with dementia. If she just can’t understand why, let it go and do what needs to be done without her approval. You will only upset her and yourself. How much control does she have of her finances? A lack of good judgment is common with dementia and she is also very vulnerable to scams (be careful !). There are people here that can tell you horror stories of a loved one losing an entire life saving or buying a new car when they are not even capable of driving. A dpoa would allow you to step in more freely even if you are helping her out a bit now. We were told at diagnosis mom was not safe to live alone and she was not diagnosed late. If she is able I would discuss with her plans for the future. She probably won’t be able to recognize how quickly decisions will need to be made and might struggle a bit with some logistics. If a conversation doesn’t go well, the DPOA may just need to make the necessary decisions. In home 24/7 care is very expensive, can be difficult to coordinate and may lack the activities and companionship that assisted living would provide. There is a lot of work to do even when someone is in assisted living. Some facilities may have a waiting list. I will add a few resources that may be helpful.

Anosognosia and Dementia - AgingCare.com.pdf

DBAT.pdf

https://iona.org/therapeutic-fibs-ok/

https://www.creditkarma.com/credit/i/how-to-freeze-credit

https://www.consumerfinance.gov/consumer-tools/managing-someone-elses-money/

understanding-the-dementia-experience.pdf

ARIL

You have been given good advice. I’ll add a couple of observations.

First, the term “early onset” refers to people who are diagnosed with symptoms before age 65. It seems likely that Betty’s doctor meant to say “early stage Alzheimer’s.” So don’t start your search by googling “early onset”; that’s not the info you need.

There is as yet no cure for this disease, and each person has a different experience. That said, there are certainly patterns and trends, and you can learn what Betty may experience. This is a hard road for everyone.

Betty is so lucky to have you in her life!

Victoriaredux

"What should I be doing?" Perfect question . I'd read the articles you've been given , jump around on this board to get a flavor of the ways the disease process can go- it is fatal to date , meds don't cure , but each person's journey varies.

Then decide how much you want to be involved in seeing her through the process. Do you want to be the go to person or have a professional conservator or case manager handle the finances , medical issues etc and you be a good friend visiting? The disease can go on for years and could consume your life if you do hands on .

I am confused are you paid for you currently providing her with care or paying so that she has another person caregiving? You'll want to talk to an elder law attorney asap especially if you are a friend/employee now so that if she elects you to be her DPOA and health care proxy it will be clear she still has informed intent that she wants you in that role and what that means.

If the medical file and lawyer's impressions are she really isn't capable of deciding that anymore, then you could look into a court appointment as her conservator . Probate court would investigate and recommend a way forward for her oversight. The attorney can explain that process. Betty would have a lawyer and you may need one at that point to prepare your petition. If appointed then the court may allow your legal costs to be paid for out of Betty's funds.

You are very kind to be worried about your friend's future .

Renee68779

https://alzconnected.org/discussion/comment/281324#Comment_281324

Thanks! and yes, thankfully Betty has a trusted attorney that we are consulting now.

Renee68779

https://alzconnected.org/discussion/comment/281325#Comment_281325

These articles are very helpful! And funny you say that, about scams. Last month Betty's cousin from out-of-state came down and almost immediately went through all her papers. Within one week, he had her signing a new will! He came across as though he's "helping" her, but I've been appalled to learn that he tried twice to get power of attorney over her bank accounts (I saw the denial forms the bank issued) and he sent a notary public friend of his to get Betty to make him, the cousin, the new beneficiary of her bank accounts. We are right now working with her attorney to undo as much as we can. (that's a story for another day.) But here's the maddening thing. While she seemed to understand for a while that her cousin was behaving suspiciously, and without integrity, and she was ready to write him off—last night he called her and cried boo-hoo, and said how he hurt he is because he thinks Betty is no longer trusts him. Sweet Betty is now saying, "Maybe I was too quick to judge him…." Arrrgh! We are trying to get all her accounts put in a trust, and then name a trustee so that Cousin can no longer manipulate her. I just can't get over how crazy this situation is!

Marigold Starcrown

https://alzconnected.org/discussion/76999/my-friend-just-got-diagnosed

I'm sorry to hear all of same. 😞

And, I do wish all the very best for you and Betty. 😊

That said, I am sure that they must have meant "early stages", and not, "early onset".

"Early onset" is a reference to, it began earlier than age 65.

But, anyway, I hope that you and Betty will both be okay through everything and that you and she will indeed stick together forever like glue. 👍 👍

Friendship is very important for both of you and especially at such a difficult time.

Cheers. 🍻 👏 ✌️ 🥂 🍻

dcare45

Another quick resource to give you an idea of what is coming are videos on you tube. Tepa Snow, Natile Edwards Care Blazers come to mind but there are a few more. They are reasonably short and cover a lot of different behaviors you could expect. There is a post on here for suggested books about care giving that has good references. Just type in books in the search at the top of the page. Sorry I don't know how to link it here. Read a lot of the posts on this site as well to see what others are dealing with. It may get time consuming but so is caregiving.

I would be sure of what you are getting into before you leap. As @Victoriaredux said, "The disease can go on for years and could consume your life if you do hands on". Nothing truer than that.

You obviously have a good heart, care for your friend and she is lucky to have you in her life. Good luck to both of you. Keep us posted.

PS: I just saw your other post again, so it is still out there.