Life goes on. I've done more research, talked with other people, felt supported through all this confusion.
So it's been about three months since the formal change in diagnosis. Dave has been on the Methotrexate for awhile now. It has made his psoriasis go away! No more itching! But other than that, there has been no miracle change - no sudden recovery. I didn't think there would be, but a small part of me held out hope. At this point, if indeed his dementia is a result of an autoimmune disease, this may help prevent further deterioration. But it makes me sad to think of him stuck where he is for who knows how long? I guess it's just sadness for myself, though. Because he still doesn't think anything is wrong with him. Which is good, right? I try to find the great side of this - perhaps our journey won't include some of the awful situations that some of my FTD friends are experiencing. Maybe he won't end up in a wheelchair, or not being able to swallow. Maybe he will maintain continence. I need to dig deep and find that patience I used to have, the gladness I used to feel at being able to care for him. Sometimes I feel a part of me is lost forever. There seems to be more memory loss. He doesn't remember how we met, when he proposed to me, the day we got married. We don't have conversations, except about the grocery list he makes each day. The things I'm missing, the companionship, lively discussion, laughing together - this has been going on for so long that I'm not certain if this is just a normal part of an aging marriage, or truly a disease? I find myself questioning so many things. I've thought about reaching out to people he knew long ago in college and right after college to find out what he was like back then. Or did I create this awkward living arrangement because basically I'm hard to live with and expect too much? I have to remind myself that he has significant brain atrophy; that he has a very very slow gait; that he still needs to be reminded that TV shows are made up stories with actors; that he isn't interested in others' lives; that he doesn't comprehend some simple things; that he has no social graces anymore. But wait - alot of people tell me some of these things are just like their husband! (I've suggested to a couple of people if their husbands think TV is real, they better get their husband to a doctor!) I know most of what I see in Dave isn't normal. And I don't think that much of a monster wife to have caused enough trauma to bring this all on!
I've read about some instances where a spouse has bvFTD concomitant with autoimmune disease. I asked our neurologist about this. He feels strongly that Dave's symptoms have been going on for so long and in some ways are atypical that it is the central nervous system autoimmune disease, and not FTD. But he said he can not be more specific than that. He fully supports and encourages a second option. Some people offering support have said - if it looks like a duck and quacks like a duck - for all intent and purposes, it IS a duck! It's weird, because obviously his symptoms are caused by the atrophy in the frontal and temporal lobes of the brain. The question is what is causing the atrophy? And FTD can only be confirmed by autopsy. So how can FTD be completely ruled out? I guess another question for me is why am I so insistent that FTD be a part of the diagnosis? I think it's because I'm invested in that. Three and a half years invested. I don't know. I vacillate back and forth between thinking I'm an idiot to even question it, and of course I want a second opinion! A significant diagnosis has been changed after three and a half years!
I am contacting the Cleveland Clinic to see about scheduling an assessment there for a second opinion. I'd like confirmation of one or the other, or perhaps evidence of both. I'd like to have someone answer my questions about what causes this autoimmune disease and perhaps a little more definition, maybe more detail. I'd like to know what to expect, what to watch for. And I've been putting this off for a couple of weeks. This is Saturday, July 21. I'm committing to beginning the process with the Cleveland Clinic on Monday, July 23! I've just got to do it so I stop ruminating over all this.
Need to plan some trips for myself - hope to go to Saratoga Springs to visit my brother and sit on his front porch. And I have a granddaughter due in November! That will be a fun trip, and one I'll take on my own! After the experience in March travelling with Dave to California, I don't think I can do that again.
So, life goes on. And it is good. I have much to be thankful for. Sometimes I have to remind myself.
