We attended a conference today on young onset dementia given by the Johns Hopkins Medical School. One of the sessions included a panel, which was composed of various professionals and a caregiver (wife) and 13 year old daughter of a man with FTD. The wife summed up her philosophy as "I just try to keep a smile on his face." She said she tries not to worry about the future, stress about the situation, waste time searching for cures that don't exist, etc. I thought it was a lovely way to focus on the most important, and sometimes hardest, part of all of this--trying to keep our LO's happy. BTW, Steve went with me--dressed up in a sportcoat, etc., fit right in and enjoyed the conference. This is the same guy who was kicked out of daycare yesterday. Does anyone else live in the Twilight Zone?
How ironic that you used the expression - Twilight Zone. Exactly the expression I used in a blog over a year ago to describe an experience I had with a group of AD husbands. Copy and paste this link to read the blog - http://www.thealzheimerspouse.com/cruiseplan.htm I just updated the links, so if it doesn't load right away, "refresh" it.
It reminded me that I have wanted to tell you how fortunate you are that you have friends from support group who are in the same situation. We attended a support group for couples--two husbands were dx with AD, two wives. We used to socialize with the other couple--he and Steve were old business associates. Sadly, his disease has progressed more rapidly and it's no longer possible. We have no other friends who are in the same boat--that's one reason your website has been such a help to me.