The Results are in

concerned_sister

https://alzconnected.org/discussion/comment/204217#Comment_204217

I called DAV earlier this morning. I had hoped I could get farther with them armed with the MRI results and it being "suggestive of Alzheimer's". I got a call back a few moments ago. Bottom line I had a false impression of the advocacy they could provide.

I can say you told me so.🙂

Thanks for the advice to check the experience of the collective group here.

Phoenix1966

@concerned_sister Do a forum search for the term “catastrophic”. That will bring up some of the previous VA threads like this one discussing the process of getting that disability designation and some of what it may cover:

https://alzconnected.org/discussion/60138/va-catastrophically-disabled

Iris L.

Regarding DAV and other such organizations: my impression is that they have to follow a script which allows them to say only so much. Whereas the members here will post about their pitfalls and their successes, i.e., the real nitty-gritty.

Phoenix1966 has a great idea about a search term, with an example from member Shardy. This is another reason why I say the members are the gold standard of advice and help. You won't find better help anywhere on the internet, IMO!

Iris

concerned_sister

https://alzconnected.org/discussion/comment/204242#Comment_204242

Thank you.

concerned_sister

Thank you, Iris.

The advice and education here have been tremendous. I experience it repeatedly when speaking with my brothers (not PWD). I often get why don't we tell him (DB) this, or ask DB that. I have to explain about not asking DB to do a multi-step process, or to try to have a conversation around his decreasing abilities. I'm not good with the official word but I explain it's a symptom of the disease that as you get worse you no longer recognize you're getting worse. Let me also take a moment to give Kudos to SIL. Yesterday being in their home for Easter she brought a tablet over and started asking me about info at a Veterans Site…it was one I had visited earier in the day, so we were able to discuss the information there. She had various questions about her strategy to continue working and at what point they may need to bring in help, how they might plan their finances etc. I mostly told her that these are questions we can ask the CELA or the doctor. She asked about progression, I gave the honest answer that with Early Onset, it often goes faster than being diagnosed later in life, but there's no way to know yet, and that isn't true in every case. This is the most assertive she's been about getting answers and that's a good sign.

I'll try that search with "catastrophic". Just searching with the word Veterans gave me a lot of hits, but it was used in lots of other contexts other than benefits.

harshedbuzz

@concerned_sister

One caveat— the gold standard can shift. I know certain things have shifted since my dad was diagnosed in 2016.

Dad did have a PET scan back in 2016. Mom's a retired teacher so insurance did cover it after pre-authorization. It was useful for us. His neurologist was looking to differentiate between Alzheimer's, Wernicke-Korsakoff's (an alcohol-related dementia which can be, and he was, treated to some degree) and FTD- behavior variant. Results were consistent with ALZ and WKS which meant abstinence was critical but that with ALZ he would progress.

Does your younger brother have the same health insurance? If he does, he could call the number on the ID card and ask if a PET would be covered.

HB