New Diagnosis questions/thoughts

mpw50

I suspected one day I would be in this community, I just didn’t think it would be this soon. DH and I went to neurologist today. He would not say DH had Alzheimer’s. He only offered that it could be early in a diagnosis based upon my notes. I’ve done this dance before as a caregiver to my father who passed away in his 50’s from EOD. It only took 5 years from start to finish. I suspect this dance will be a slow one. My DH is a retired military veteran, 65 years old, PTSD, retired helicopter pilot. His cognitive decline has been pretty rapid. I got home and realized we received no actual diagnosis. Just bloodwork and the option to take Aricet (sp?) or go for the deeper testing/IV infusions. Does he have Alzheimer’s or not? I feel so confused. I am glad to see other military spouses on the forum. War does enough crazy things to our spouses brains without this added burden. So many decisions. We have ten children and 24 grandchildren. Do we tell them now or later. Do we sell our farm and move closer to family. Do I give up everything we’ve worked for and hope I can manage both it and him. Our parents are dead and he has one disabled sibling that he manages a trust for. So many legal hurdles ahead. The doctor office said the next available appt is in February so how do I even get to ask the questions. And I realized after we left that my DH did not put me on the charts as being able to call. Sigh . One day at a time. Thank you for listening.

gampiano

Hello,

My DH is also a veteran, enrolled in VA healthcare when he retired from his civilian job. When I told the doctor that he was having some memory issues, he ordered ct scan and an MRI. Then he scheduled an appointment for a neuro psych evaluation. The waiting list was long , it took about 4 months before we could proceed. It was during COVID, so the testing was done virtually(3 hours.) It was only after these results were in that the VA doc gave us the ALZ diagnosis and started him on Aricept, which did help for about 2 years. So, maybe find out if your DH will be getting that testing.

You can send a message to the doctor through the VA Website through My Health Vet. This is the way we communicate and someone always gets back to us.

Also, you need to have a POA in place , and a Health Care Proxy . We had done this while my DH was still healthy, but you can still do it now . As my husband can't articulate , the VA has been speaking with me, but most recently, as im asking for more services, I had to send the Dr. a copy of my POA.

I'm still learning how to navigate the system. It's overwhelming. Most recently I made an appointment with our county VA Agent. They can help cut through some of the red tape.

This is some journey, and you are in the right place ! Ill write more tomorrow.

Sending healing thoughts,

Maureen

Ed1937

Mpw, welcome to the forum, but sorry you need it, although it is a good one.

You said he manages a trust for a sibling. Does that mean that he pays bills out of the trust, or just how does he manage it? Are there other siblings? If so, I think they should be made aware of the fact that he might possibly have dementia, because if he does, someone else will eventually have to take over the trust. You sure have a lot going on now.

You mentioned that you have 10 children. Are you both the parents of all of them, or is this a blended family? I only ask because if this is a blended family, you may get different answers from some members. Only you know what symptoms he is showing, but I think if you are pretty convinced that he has dementia, I would let the kids know what you think so they won't be taken off guard when he acts inappropriately.

We have people who are dealing with spouses who are veterans, and others who live on a farm or have moved from one. They should be able to give you their ideas on those subjects better than I.

The good news is that you will find a lot of support here, and you will be talking to people who "get it".

Ed1937

I should have mentioned that it sounds like you really need to see a CELA (certified elder law attorney) in the near future. This is something that needs to be done while he can still understand what he is signing because you will need POA as well as other legal papers. And they can protect a lot of assets for you. I'm sure others will post either tonight or in the morning.

Iris L.

Was he exposed to Agent Orange? It could affect his disability rating.

Iris

SDianeL

Welcome. Thank your DH for his service. My DH, 78, USMC, Vietnam Vet was diagnosed 2 years ago with Dementia. It took 6 months to be diagnosed & get to see a Neurologist. Does your DH have a disability rating with the VA? Is he getting care now through the VA? Was he exposed to agent orange? 65 seems to young to have been in Vietnam. A National Institute of Health study showed that exposure to Agent Orange causes a 50% increase in the risk for dementia. Not sure about ALZ. Was he exposed to any other carcinogen like burn pits, depleted uranium? If he has a disability rating you may be eligible for Caregiver Support which includes a monthly stipend and respite care. If not, as the disease progresses and he's no longer able to care for himself, he may qualify for Catastrophically Disabled Veterans care through the VA. They move them up to Category 4. It does NOT have to be service connected. Find a Veteran Service Officer in your County. They are paid by the County and not the VA. They will answer all your questions. Make a list of some action items for you: 1. Get a DPOA immediately through an Elder Care Attorney. You will need it sooner than you think. 2. Learn everything you can about the terrible disease. Read the book "The 36 Hour Day" It helped me so much. 3. Get your name added to his health care charts. 4. Take control of all the finances. I didn't make any major decisions until we got the final diagnosis. Once they told me that he had to stop driving and I learned about the disease, I then made the decision to move into a small apartment that I could manage by myself, sold our RV that we loved, traded in our older car for a new one. I used the DPOA for all those things because he can no longer read & understand documents or sign his name. He can no longer use a phone and can't be left alone. Please keep us posted.