Terrified!

mmerrill

My 60 yr old husband was diagnosed a bit more than 4 years ago with EOAD/FTD w/ behavioral variant. He is late stage 6 with some components of stage 7. He is at home w/ me and I have part time care that comes to help. After an appt w/ his dr treating his symptoms, he tells me that because my husband is so physically healthy that he could live like this for many many years to come. I think it goes w/out saying that I don't want him to leave this earth but this is so cruel to live w/ little quality of life. He is just a shell of what my husband used to be. Meds have been changed (increased, decreased and some discontinued) multiple times and nothing seems to help manage the symptoms. I am new to this group and just venting out of frustration.

Jazzma

One of the hardest parts of caring for my DH was the uncertainty about life expectancy. Sometimes I was struggling so much that it seemed impossible to continue doing it for another day, let alone an unknown number of years.

If you haven't already, you might want to see if he qualifies for Hospice. Their requirements are different for dementia (i.e., don't need a diagnosis of <6 months to live) and can be very helpful with medications, bathing, referrals to other types of support, etc, all at no cost. Just having another set of eyes on him helped me a lot. When sundowning became too difficult, they prescribed medications to help. The focus was on making him more comfortable and helping me as well. His primary care physician provided a referral, but I don't think that's required.

My thoughts are with you. It's a hard cruel road. Reach out for any help you can get, including letting friends know what they can do — bring a meal, do laundry, clean the house — because most people don't know what you need and may be shy to ask.

SDianeL

Welcome to the place for info, support and where you can vent. We understand what you are going through. I also recommend a hospice evaluation. They are wonderful. They provide so much help. Equipment, supplies, nurse visits, counseling and clergy. Hugs. 💜

TanFin

Oh, my heart is with you and I’m sending a big hug! My DH (58 yo) was diagnosed in January with EOAD, and is heading into stage 6 pretty quickly. I understand your comments so much, as I’ve had the same concerns about longevity and quality of life. Thank you for posting! And to those who responded with suggestions about hospice, I will be looking into it too.

Some days are better than others, but today I’ve been drained and quite down. So grateful to have found this space and others who have survived caring for a spouse with EOAD.

marier

My Dh is stage 7 and is on Hospices. I am so grateful to have Hospices as well as VA to help with DH needs.

I too struggle with the longevity of this disease. I try to stay in the moment. If I dwell too much on the past I can't stop crying and future is unknown and I too am terrified. So staying in the moment and focusing on what is before each day helps me cope.

jsps139_

My DH (stage 6) is entering year 12 since Alz diagnosis. He is very healthy physically. All of his bloodwork is perfect.
A neighbor’s wife was 19 yrs from diagnosis to passing.
I try to just live in the moment and not think about the past or future, but it gets hard. I know if it was me, I wouldn’t want to live 20 years with Alz.
You will get lots of support and love from this group. Visit often, and vent, and ask questions. The info on here is so helpful.