Glad I am on the boards tonight. Yes - my stepdad has Frontal Temporal Lobe Dementia. Let's see - what can I share with you - and feel free to ask me anything too - looking back (isn't hindsight something?) we now realize he's probably been ill for several years. He was diagnosed after over a year of exhaustive testing (originally we were told by one doctor that he had Alzheimer's, but that was not correct). He was "formally" diagnosed in April of 2009.
At that time he still lived at home with my mom. He lost control of his bladder sometime in 2007 or 2008......we can't be sure because at that point he was able to hide it. We began to notice a bit of a "shuffle" in his walk in 2007 / 2008. As for his cognitive abilities, it was a slow progression at first, but in July of 2009 we're sure he had a stroke, and he has had several small "tia" strokes since then (verified by a PET scan - and the PET scan was the ultimate test that enabled them to finally diagnose him).
That stroke landed him in the hopsital where he was very disoriented, and we actually weren't sure if he was going to survive or not. That began our journey of skilled nursing for rehab, followed by an assisted living facility, back to the hospital (he probably had another small stroke), back to skilled nursing, and now, for the last year and a half, an adult family home.
He still knows who my mom and I are. I don't know that he always knows other family, as my mom, his sister and myself are his regular visitors. I have two sisters and at this point I believe he still knows who they are as well.
Currently he has good days and bad days. He has days where he pretty much sleeps. The caregivers tell me he'll have two or three really sleepy days in a row, then he'll have a "good day" where he's really alert.
I am durable POA (power of attorney) for both my stepdad and my mom. He hasn't asked about bills, the house, his truck, or anything of that kind for a long time now. Sometimes when we take him out to eat (which is very rare now because he really can't walk anymore and it's getting really difficult to transfer him to and from his wheelchair) he'll try to reach for his wallet (which he no longer carries) and I'll just say something like "I've got it this time" and smile at him. That seems to work.
If I had to guess when the illness started, I would say it was as early as 2006. I began to notice personality changes in him (he married my mom when I was only 5 years old, and he and I have always been very close - he's been an awesome dad to me). Also, once I took over as durable POA and had to dig into their bills, etc it turns out he lost a fair amount of money on some risky investments. My mom and I were stunned as he was always great at managing their money. It was (and is) a tough blow. Of course he's progressed so far into the illness now, it's not like we can get to the bottom of the "where did the money go" although there's a pretty good paper trail. I've been told this "gambler mentality" can go along with this type of dementia so that's why I'm sharing that info with you.
Oh - he fidgets. He does it more when we take him out, so I wonder if it's tied to when he feels stressed. I hope this helps. I'll keep an eye out for you on the boards. I'm so sorry for what you're facing, but please know you are not alone! This board has truly been a lifesaver for me. If there's anything that I've been through that can help you or anyone here on the board, I am most happy to do that. Traversing this disease can be so isolating. People who haven't walked this road just.......don't.......understand. They can try to be empathetic - but they really don't get it.
You mentioned in your post that this is a "possible" diagnosis. It is a difficult one to diagnose, but you probably know that. I'm wishing you all the best with your mom. Keep us posted as to how you're doing -