@patientkiwi I do understand what it means. When my Chris was showing all these behavioural changes I don't know how I would have coped with it had it not been that online I had 3 other CALS that were experiencing the same. We couldn't believe how identical the types of behaviours were as any one of us would recount something that happened that day.
I broke my toe one day, rushed into the bathroom and kicked the leg of the chair he would sit on to do teeth etc
Same thing, just a blank look at me, then impatience at waiting for whatever he wanted done.
But in this instance, I then had weeks to heal. He became furious that I asked 2 of his adult children to come and help me the first weekend. How dare I expect them to give up their precious time off - I could just leave anything I couldn't do and the home care staff that helped during the week could do it Monday.
I can say this to you and you can laugh, because I would never have said it to him in truth but I thought - oh ok, so I can just leave you in bed til they come Monday can I?
Anyone that helped me at all during that time got huffs and eye rolling from him.
Now, the point is not those things I just wrote. The point is that it was so startlingly opposite to his normal personality.
May I ask, did you notice behavioural changes before the ALS symptoms?
That is a big one for me because Chris began behavioural changes before the ALS symptoms began, so it wasn't a response to ALS.
That does however make diagnosing FTD difficult, because of course there is an element of all the shock, depression, anger and grief. We as CALS are battling that as well, but we should not exhibit a full change of personality and behaviours.
I tried not to analyse Chris too much, and in the end what did it matter what was FTD and what was response to his situation anyway? It's not like if we could diagnose this we could cure it.
What I concentrated on was treating him with respect, keeping his dignity, and still giving him the choices and advocating for his choices. I did not get into arguments, particularly ones of logic. I especially knew that as his memory was completely intact, and his paranoia was high, it was best to say as little as possible on hot topics or situations as he would filter them with paranoia and stack them on the pile and remember them no matter what other details he lost.