I wasn't sure my message would take. Keep forgetting passwords and then start a new account. Sorry, Joan, for the extra wok
My husband passed away December 20, 2015. I came on this site not too long after it had first started. My husbands journey always seemed to be in step with Joan's husband, Sid, just a few months behind. So...
This site has been the most valuable resource for me above family, friends, church and particularly the professionals. My husband had Parkinson's, ALS but mostly Frontal Temporal Dementia. He was officially diagnosed in 2004 but I had seen a drastic change in his behavior starting in the 1990s. After the fact, they now tell me that it was early onset. He was 75 when he passed away.
I am not trying to be bitter or blaming all of my other resources. My husband was very high functioning and he was able to be very convincing to others that he was ok. This is a very cunning disease and he was very good at looking good at any cost. There were times that I would even question myself as he was so convincing, so I can't blame others for not seeing the level of his dysfunction. What they all saw was a charming, well put together man that came with a disheveled, wild looking partner.
My thanks go out to all of you, who, over the years gave me valuable advice, acceptance and info in how to walk this awful walk. I wish I could offer words of encouragement and comfort. Just know that you are doing a Herculean task. God bless all of you.
Pavane I am so sorry-for both of you. My husband also had FTD. I understand only too well how its victims can present so well and turn on a dime into a person you don't know. My adult children could never understand how their dad could behave so well when it suited him.
I am so sorry. What a long, hard road you have traveled. I think many of us can identify with your description of "a charming, well put together man that came with a disheveled, wild looking partner."
Have any of you found a blog/online support site that has been helpful. I have found some, but wonder at your experience. Anger has come to visit..I hope it's only a visit. I see the Hospice grief social worker Tuesday. Afraid I am too raw for a grief group yet. He passed away three weeks ago today. Seems like years. Thanks for all your kind messages. They really help. I keep coming back to them for sanity.
Pavane........ Everybody told me that it just takes time and in my case that was so true. In my care giving days I learned the value of being patient with my dear Helen. After she left me I was patient with myself and my grief went away.
I wish the same for you Pavane..........You're going to be OK
Pavane, these message boards have been invaluable. I could not have made it through the caregiving and then the bereavement and recovery struggle without this group. Whatever else you try, I would stay on these boards, continue to read the postings, and just stay hooked up with us.