Trying to learn how to navigate these discussions

northernlady

Hi all,

It's wonderful being here, and feeling the love and respect you all have for each other. I hope to become better conversant in the language and acronyms used in discussion threads so I can more easily understand.

We just started this journey in October 2023. Found out in November 2023 that my DH's primary care doc had concerns about his in January 2023! Almost a year I went without a clue that there might be something going on. I had chalked up my frustrations with DH's quirks to my very busy life, and the fact that he's always been an odd duck (one of the reasons I love him!)

As soon as we discovered what was going on, I had to make sure all our finances were jointly held, and who the beneficiaries were on our accounts. (Second marriage for both of us) We sold our rental property in October (before the testing began) because I no longer wanted to deal with being a landlord. I now realize I must have had a premonition. We sold our second car (although he is sad not to drive anymore) he only reminisces about driving.

I have always taken care of our investments and immediately took over all our finances. I worried that should his agreement be needed, would our being joint tenants and tenants in common on all our property allow me to sign, and so far that's been the case. I do worry about our finances long-term, as he has a pension, but I do not. My retirement will be my savings (jobs, investments, inheritances), and should he need residential care, I will have to spend down my retirement savings. ugh

I do worry about his continued care should something happen to me (we are 12 years apart in age) and I have documented a detailed guidance if I die before him. His son lives several states away, but agreed to be the primary decision-maker for his dad's care should I pass. My sister lives here in town and she knows where all the paperwork is.

We raised my grandchild since birth. At 16 they are very astute, kind, and responsible. I try to keep their life as normal as possible, but awareness of DH's situation is good for them to know.

Anyway, thanks for reading this far (if you have) and I welcome any guidance on how to decipher terms used in discussion. Smile

charley0419

Don’t feel bad my wife diagnosed Nov 2023. He Brother said something to me in 2017 but I let it go in 2021 I saw something up.

Jeanne C.

It is like alphabet soup, isn't it? There is a link to common abbreviations at the bottom of the page. It's not all encompassing, but a good start. Everyone here will be glad to answer questions so ask away.

May I suggest you see a certified elder law attorney (CELA)? They will be the expert in your state's laws. I know mine had me change our deed so our home is held in trust, with me being the trustee, rather than leaving it with my husband and me listed as tenants in common. I would really seek advice. A CELA will also be able to help you make sure your POA lists someone other than your husband, as well as educate you on longterm care options and benefits available. It's definitely best to get this all handled while your husband can sign.

Welcome to the forum. We're all in this together.

jfkoc

Ask away knowing you are asking the same question for many others!

northernlady

https://alzconnected.org/discussion/comment/201751#Comment_201751

Thanks for this. It like being nose-blind, living with them everyday, we didn't see it!

northernlady

https://alzconnected.org/discussion/comment/201759#Comment_201759

I've been wondering about needing to see a CELA. There isn't one within an hour drive of our home. But I made a call to a local "elder law" attorney. At least I can start there. Especially about putting things in a trust. Thanks for the specificity of why I might need to consult with one.

LJCHR

Glad you found the forum but sorry you had to. I’m not an expert - someone else may want to correct me on this. There is a difference in an Elder lawyer and a CELA. My stepchildren first went to an Elder lawyer and the cost was going to be much more than the CELA.

We too are 2nd marriage with pre-nuptials-but I learned about a CELA from this forum. His approach was totally different from the Elder lawyer they went to and they are so grateful that I steered them to a CELA.

This is a great place to come for support/guidance from people who know.

susan2024

I am new here as well. I have been seeing the signs here and there and then more and trying to sort it all out. For a couple years now.


Have not had him tested because it seems like it will upset him more. Advice here ? What is the plus side to getting official diagnosis?
His doctors all realize he had cognitive decline. It’s evident!

He realizes his memory is going. He almost never bathes. Or wants to wear clean clothing

He struggles with alcoholism as well and that adds another layer to this puzzle we are calling life.
My LO is angry with me often. Over things like dropping into the bank to speak with banker with out appointment and getting upset he can’t be seen. Has happened several time. When I don’t want to stop in he’s mad.

Saying. …. You control everything

And sadly I do.

Advice here ?

Ohhh my list of advice is so long

Just so much right now !
I realize everyone on this thread has so much as well. But just needed some input.

jsps139_

Hi and welcome. Everyone is so helpful on here. You will be so glad you came here.

My DH’s primary care doctor convinced him to see a neurologist. She said that different diagnoses are treated differently, so that can be helpful. She asked him to just go one time to get a diagnosis. He finally agreed.

trottingalong

https://alzconnected.org/discussion/comment/201797#Comment_201797

For us, we see no upside to attempting to get some official diagnosis. My DH appears to be going the route of his mother. Seven years ago he did go through a series of tests, we had to travel quite a distance three different times. We were told MCI with depression and possible alz. The neurologist told us only time would really tell. And it has. My DH sees absolutely no point in going through testing again. He knows he has memory issues, but then he will deny that he does. In his current medical records it states Dementia. I was shocked when I just read notes from his hospital stay.

Jeanne C.

https://alzconnected.org/discussion/comment/201797#Comment_201797

Susan, a diagnosis can help with appropriate meds - for example some meds they prescribe for alzheimer's actually make frontotemporal dementia worse. Also, some conditions mirror dementia but are treatable (like severe vitamin deficiencies). You mentioned alcohol - I may be wrong, but I think wernicke dementia is often associated with alcoholism and some of the symptoms are reversible. I'm sorry you're dealing with this. Please start new posts when you have more questions so the kind members can help.

Ed1937

Just another vote for seeing a CELA. You want to get it right the first time, even if it means a longer trip to see one.

Ed1937

@northernlady - " I hope to become better conversant in the language and acronyms used in discussion threads so I can more easily understand." See if this will help. https://alzconnected.org/discussion/64407/common-abbreviations

ThisLife

There is a difference between a CELA and an estate attorney. The CELA in my previous state recommended a CELA in my new place a three-hour one-way trip away. I worked with her. We did much via Zoom with a few phone calls and emails. New docs were mailed to me with a detailed list of instructions on signing. I found a notary who came to the house. It sounds complicated, but it really wasn't.

harshedbuzz

@northernlady

CELAs are elder attorneys who have passed testing to be certified by NELF. There may be great people out there who aren't, but having it is a guarantee of a certain level of competence. I would highly advise this step as you may be able to create trusts to preserve certain assets.

As for acronyms, there is a woefully incomplete list of commonly used abbreviations posted on this site-- on a laptop it's to the right of this thread. I am probably one of the worst offenders; life is too short to write whole words all the time. Feel free to ask if you can't parse the meaning. I find most acronyms eminently googleable which gives me the instant gratification of a fast answer. I do this when someone mentions a medication by its generic name, especially the SSRIs, as I find it generally easier to recall the brand name version.

@susan2024

I would urge you to have your husband at least have the basic imaging and bloodwork done to rule out any treatable conditions. My mother fought me for almost a decade on the topic of having dad evaluated. He wasn't a particularly pleasant individual, and even less so as his cognition declined, so she spent a lot of time tiptoeing on eggshells. He also was a late-in-life alcoholic after my sister died.

I finally forced her hand when she left him for a few days to attend a funeral and came back to her home trashed and dad in the midst of a psychotic episode insisting he'd killed someone. We took him to the ER of a major teaching hospital in a city near me where he was diagnosed with an alcohol related dementia caused by a vitamin deficiency. Had he been identified earlier, he would have had a chance to choose sobriety and enjoy a better quality of life until his Alzheimer's progressed.

HB

northernlady

https://alzconnected.org/discussion/comment/201797#Comment_201797

It's a mishmash, isn't it. Yet we are expected to "control everything " when this disease blindsided us at every turn.

Getting my DH ready for bed, I'll respond more.

We newbies can support each other as we learn from the seasoned caregivers who generously populate this forum.

Denise1847

https://alzconnected.org/discussion/68508/trying-to-learn-how-to-navigate-these-discussions

Welcome. I am so sorry that you have to be here. Please get a POA now while your DH can still sign. Check out Teepa Snow and Tam Cummings on YouTube, and read the book "the 36 hour day". It will give you a great foundation. The people are this site are absolutely wonderful. We all share a common bond through this terrible journey. They are a great example of how people, in general, should be treating each other.

CStrope

https://alzconnected.org/discussion/comment/201797#Comment_201797

Susan, the diagnosis of FTD for my DH came quite late in the journey. He was excellent at diverting when asked about failing abilities, and even better at blaming me for anything that was not going the way it should. Then when we finally did take him for diagnosis, we spent more than a year on medications meant for Alzheimer's rather than a proper diagnosis of FTD.

So, what purpose does a correct diagnosis provide? For me, I'd say that knowing what was happening helped me to cope with all the problems. First off, knowing that he had dementia and wasn't just forgetting, or not listening (2 of his big excuses), helped a lot and then finding out it was FTD rather than ALZ explained so much more. I wish I had understood the situation earlier so that it could have helped me understand how to react to the symptoms and make appropriate plans for the entire journey.

northernlady

https://alzconnected.org/discussion/comment/202046#Comment_202046

Wow! Great info!

SSHarkey

https://alzconnected.org/discussion/comment/201797#Comment_201797

Our neurologist basically said “If it looks like a duck, and quacks like a duck, it’s a duck.” He doesn’t believe a lot of testing is needed. And I have to agree. As time has passed, every symptom has clicked off with each stage. As for your husband’s alcoholism, that’s an additional complication. One that I think adds to the speed of the decline. Others will know more about that. Be sure to read all the resource articles on this website! You’ll find a lot of good information.