My last question involved my brother. None of you held back, and I appreciated that. I know I “let him” move in. Honestly, I felt I had no choice at the time, but that's past history. I’ll move on.
He has finally gotten his appointment with a neurologist. He finally went for his MRI, which, with his symptoms (primarily periodic episodes of aphasia), the neurologist suspects FTD. He talks over the doctor and she was hard pressed to have him hear anything about his diagnosis.
If you have experiences with FTD, would you mind sharing? Thanks in advance for your time.
https://www.theaftd.org/
We moved into a memory care unit. He had trouble adjusting so they sent him out for meds adjustment. When he returned he pushed another resident and so them told us he had to leave. We found another memory care and had the same issues. He was sent that the Ohio Psychiatric Hospital for meds adjustment. He ended up in the hospital with a UTI and sepsis. He was in a hospital for about a month because we couldn't find any place that would take him due to his behavior. We eventually found a SNF that would take him. They had a memory care unit. He's been there ever since. He no longer walks in his own, not can he feed himself. He is pretty much non-verbal (although he will say a word of r two about once a month). We no longer see his eyes light up in recognition of us. He is still quite strong and can walk a few steps with a lot of assistance.
He now has dysphasia and is on pureed food. He had developed TD from the meds he was on.
He's no longer the man I married but he's still my husband and I love him. I try and go see him everyday.
I am very sorry to hear this. My dad had behavioral variant FTD. Sounds like your brother may have primary progressive aphasia variant, in which language is the first to go. Unfortunately, as time goes on, they tend to blend into one another.
I recommend two resources:
theaftd.org
ftdsupportforum.com
I am on the latter site with the same username. It’s a much smaller community than on here and all FTD caretakers. Very helpful and supportive.
Progression varies a lot between individuals. There is a lot of temporary down one step, back up to previous baseline, then permanently down and so forth. You will read the average life expectancy is 7 years, or 15 years depending on age at diagnosis. I know people who are diagnosed and stay relatively the same for many years, then suddenly decline. Others decline very rapidly. My dad was diagnosed at age 76 though in retrospect, had many symptoms in the years leading up to diagnosis, and he died at 80. But he had other conditions and also pretty much stopped eating or drinking six months before his death. Many FTDers are the opposite and gorge themselves nonstop on sweets and carbs. It was impossible to sort out what was causing what in his case.
When the neurologist gave my dad and mom the news of his diagnosis, including using the words “permanent brain atrophy” my dad found it entirely uninteresting and had no comment. It’s a very hard road no matter then timeline.
Best wishes to you.
The fact is that, if you are wise, you will not continue in care when it is clear to you that you cannot manage it, and placement is needed.
The internet is your friend here. You can begin by going to the top of AgingCare timeline, to the search bar, and type in frontotemporal dementia or FTD dementia. You will see many threads of past questions and answers.
The online information will be overwhelming in amount; be certain to check out reputable sites.
You should consider also any support groups you can find. Facebook surely as them as they do for everything. I would try them.
Wishing you good luck.