New and dealing with early onset

ElizabethAD

I have been noticing small struggles over the past few years and definitely increase in anxiety as well. Early Onset is genetic in his family so we both knew he had a 50/50 chance. We talked about it and decided since we weren’t having children (married in our 40’s), we decided not to have him tested because what would we do differently if we knew. A couple of weeks ago there were a couple of things that were immediate huge red flags. He was sure it wasn’t the family curse. I went to our doctor and described what was happening. He agreed and gave us a referral to The Center for Brain Health. I tried to convince my husband to go to help my anxiety about it. He suggested I divorce him. He said that he does not want to know if he has it. He doesn’t want to know he has a death sentence. I’m still working full time and he hasn’t been working. So far he’s ok at home but I don’t know what I’ll do when he’s not. If I don’t bring it up, he’s pretty ok. He has started thinking about it and he’ll bring it up occasionally. He saw a runner who has it. He runs almost daily. He’s a musician and he was watching “I’ll Be Me” yesterday and I joined him. I think maybe he kind of knows but doesn’t want to know. He says things like “I think it’ll skip me because no men have gotten it yet”. I just say “Maybe it could skip you.” I’m not sure if I’m in the beginning or in the middle but I know I’m losing my best friend and I have to act like everything is fine. I do want to respect his decision as long as I can.

M1

Welcome to the forum, though I am so sorry you are facing this. Educate yourself about anosognosia: this is a common feature of dementia, it's different from denial, it prevents him from perceiving his deficits and so he thinks he's fine. Most people with dementia are this way: he'll probably never acknowledge that he has it.

In the past, it didn't make much of a difference if you went through all the diagnostic steps, because there was no treatment; some people need a diagnosis to qualify for disability though, and that may affect your husband, since you said he's not working. Now, things are changing on the treatment front too, and possible treatments might be a reason to try to convince him to go. The new amyloid treatments (Leqembi is the most recent) are effective in Caucasian men if started early, and he might be a candidate. That said, it's still not easy: administered by IV infusion every two weeks over 18 months, out of pocket cost around $25,000 per year, and the studies showed delay of deterioration of about six months. Long haul for a short slide, honestly, but it's probably worth discussing with a knowledgeable physician.

If you look to the right under Quick Links and Groups, there is one for new members with a lot of useful information, including a staging tool that may give you a clue how far along he is.

If you haven't done it already, address legal and financial issues as soon as possible. You need to have durable power of attorney for healthcare and finances, and you need to think about how you might finance care: if you're still working, you may need a day program, in-home help, and memory care at some point. You may need to structure your assets so that he will be eligible for Medicaid. Talk to a certified elder law attorney if you haven't done these things already (look at nelf.org for lists by location).

You have come to a good place for advice and support. There are lots of us here in the same boat. If you read a lot of threads, you will learn a lot and feel less alone, for sure.

ElizabethAD

https://alzconnected.org/discussion/comment/217282#Comment_217282

Thanks for the welcome and the reply. I’m certain it’s his brain annd part of the disease and not denial. He has said before any symptoms that he doesn’t want to be a Guinea pig or try experimental drugs and I believe that I need to respect that choice. I’m blessed that I have worked for the courts for many years and know many attorneys who I trust, although they aren’t in this area they can refer me to someone who is. I believe that’s my next step. I’m just telling him that you never know what can happen and we need to have our affairs in order just in case.

ghphotog

I think M1 covered it, not much more to say other than hang in there because it can be a long difficult road, mostly for yourself as you will be the caregiver.
Possibly though you should convince him to get tested because it could be due to something treatable, probably not likely but without testing one never knows. Sounds like he is in good health otherwise so there is nothing to lose but if the tests are negative for a treatable disease then that also would answer the question as well. Might be a tough ask. Sorry you are here but there are a lot of smart folks here, not including myself.

SDianeL

Welcome. read the book “The 36 Hour Day” and learn all you can about the disease. It really helped me early on. It was recommended by a nurse. If you need him to get Social Security disability he will need a diagnosis. They have compassionate allowance for Early Onset. Once he gets SSDI he qualifies for Medicare. Also Medicaid pays for things Medicare doesn’t but you have to qualify financially. This is the place for info and support.