Leone, so happy that you got to see a bit of the old Dale today. Glad you were able to take him out of the house. Lewy is a very strane disease. I wish Fran would snap back even for a day. Oh well maybe tomorrow, although I doubt it. Darn I wanted to put the eye rolling smilie on the end of my post. Boo Hoo it didn't work. Hugs, Leone Bernie

I've told Leone that I think Dale is about a year behind Derek in his symptoms and behavior but, of course, the rate of progression is not the same for everyone. It's been well over a year now since any lucidity, companionship or 'normal' conversation. I think this makes it harder for spouses of Lewy than for other family members of Lewy in that our 'other half' is being eroded away, bit by bit.

Enjoy, Leone! Enjoy!

I am having a tough time coping with Fran and the Santa who stares at him. Tonight he put him on the sofa, as he felt it was too cold for him to sit on the window sill. Dementia is the hardest part of LBD for me to deal with. His behavior is getting worse by the day. Thank God he is a sweet Lewy (so far) Bernie

You hit the nail on the head, Bernie. I keep getting sucked in too. This afternoon, - even though Dale was doing well and we had been enjoying shopping, etc., there was still a moment when I almost lost it.

Dale was eating a cut up apple and he said, "This is the best food I've had in seven days."

I try so hard to prepare dishes he likes and to have him say an apple was the 'best' really felt like a direct hit and I came close to responding. In fact, he went on to say that it would be nice if 'they' would prepare dishes that he likes.

Of course, he has no idea that such remarks can hurt.

Just remember, Leone, that he has no idea that his remarks hurt. He is not capable of understanding the concept of hurting someone. When he is lucid, he probably can, but when his cognition dips, all bets are off. When my dad would say inappropriate things I would try to count to 3 and remember an old cartoon a former coworker had hanging in his office "arguments with furniture are seldom productive." Trying to reason with a person with dementia, or hold them to certain standards of socially acceptable behavior, are like arguing with furniture. It is futile and only serves to frustrate us more when we behave towards them as though they are physically and mentally healthy. They aren't, so we just have to change our expectations and reactions. Hard? You bet! But, you'll find more and more that your own frustration level will level out if you decrease your expectations of your LO who is ill. All the best, Lynn

Thanks, Lynn. I needed to hear that, too. I have been tring to get him to be 'reasonable' but there is no reasoning with Lewy. Nan

Learning to disengage from irrational, illogical behavior can be very challenging for some people. Many times I had to explain to my sister that our dad was not "playing with a full deck" much of the time, and she needed to learn how to deflect hurtful things he said. The dad we knew would not have done or said many of the things that he did the past 2 years or so. That dad was gone, and in his place was a different personality and body that no longer worked. Only once in a while did we see a glimpse of who he had been. It was rarer and rarer, but just a few days before he died there was a glimpse of his former personality, which really seems like a gift now. Lynn

It always amazes me that so many do this just days before they pass, and you are right it is a gift and their last one to us !

Irene, did your husband do this, too [show a glimpse of his old self before he died]?

Pat,
Yes he did, he didn't walk on his own close to 18 months and 5 days before he passed and was in hospice house he walked out of his room, actually the NA had to think about it as she knew he didn't walk and of course he never walked again , my Dad always called these events the "calm before the storm".

Interesting. Same thing happened to a neighbor's husband who had PD. He was in a SNF [the same one Derek is in] and hadn't walked in months. One day he asked for the PT to come and help him walk--he wanted to walk. And he did walk with the walker all the way up the hallway. His heart stopped later that day and he died instantly which was a blessing.