Aw, it's so sad to see them fade away like that...

Mom on the other hand, is totally immobile, stuck in a wheelchair and cannot eat by herself without being helped and is gaining weight like crazy. She no longer recognizes me and the last time I visited, we never managed to wake her up and we were there for 45 min. After that I just gave up and left. Very upsetting. God I hate this disease

Deborah, I know exactly what you are saying. I can hardly bear to look at Ken. His face is so sunken and his eyes are very droopy and lack any hint of happiness. His calves, that were once so muscled, are now just sticks. It is scary and very haunting to me. I just so want to have him in a better place and know he is at peace, but I feel that that could be a very long time coming.

I am trying so hard to concentrate on all I have that is wonderful and positive in my life, but it is so difficult when all I see is him. He is such a reminder of what I am not doing and what I cannot have. On the 1st of September, I will be entering my 7th year since diagnosis. There were many years before that. I am just not sure that I can mentally and physically hold up for yet another nor am I sure that I even want to try.

I know what you are saying and feeling. There are just too many 'hurts' to count with this awful disease.

I didn't want any pictures of Ron taken his last year and I know he would not have wanted that either.

Judy, I'm glad you said that, I am trying not to take pictures of Rollie, this is not how I want to remember him. My younger daughter is starting to collect photos of him so he can make a memorial scrap book for him.

They say that the closer the time gets, the more they will sleep. Carl actually slept soundly and peacefully from about 5am on Tues straight through without waking till Wed. morning at 10:30 when he died. He slept Sunday and monday prior to that but it was a very fitfull sleep..not at all restful until about 5 am on Tuesday. His legs were also very skinny and his skin just hung on him. He was so ashamed of his arms and butt when he still had some mental capacity before he broke his hip. When he was younger I used to tell him he had "nice buns". When he died, his butt was so flabby. He was about 80 lbs less than his normal weight. Cruel, cruel cruel and horrid disease!!!

Carolyn- you made me smile a bit because I used to think Rollie had a perfect little butt, smooth as silk, LOL.

With the temazepam Rollie sleeps from 8 PM until at least 10 am and usually quite peacefully. He will have little 5-10 minute catnaps through out the day.

Deb,

how could you not feel awful about that....

I mean about the bones....not the other..!

I go see mom everyday 2 time a day and it is so depressing to see her fade away so slow. She is also all bones. She does not do much anymore, but just sit in her chair and looks around. I take her for walks in her chair every day and around 2 after lunch she goes down for a nap from 2 to 4. If I am not there, they will not change her diaper and she gets diaper rash.
It is so important to go see them everyday. You got to supervise everything!

Really, Pina? How sad that they don't have the staff to take care of your mom better and how wonderful you are to go so often.

Deb..every time you post I realize how similar Rob and Rollie are. Its like a mirror image. My Rob sleeps better through the night (with seroquel before bed) and only takes little 10 minute cat naps during the day if that.

he too is so thin nothing fits him, I keep going down in size of pants and its useless, I give up and have just bought several running pants and shorts with elastic waist as everything else is lost on him. No but, not even any stomach it just hangs (like the people you see on TV that have lost weight and want surgery to remove skin), his once muscular sleek arms are rail thin no muscle to be found, his cheeks sunkin...need I say more. He is disappearing before my eyes. The Dr said he is burning even more calories as his arms and legs are in almost constanyt motion (with the Parkinsonism)..

I have no idea what time we are looking at nor has Hospice indicated to me like they did to Sharon. His heart is fine and basically if this hadn't hit him he was the picture of health, so even as bad as he is you usually don't die just from Dementia.

I can't imagine him getting much worse except bedridden.I just have no idea where we really stand.

Deborah hang in there with Rollie, it will be hard for a while. It is important now to find the right med for him. Thats what I did with mom. She could not function at all. Unfortunately its part of this horrible disease! Falling is also part to this disease its a big issue. My mom fell many times at the home and they tried to blame it on me, because I would bring her home with me. Can you believe that!
Now she can't walk because of them. In a way I am glad that she can't walk, because now she can't get up at night and that is I believe when she fell, but they will not admit it. I would have to fight that in court, I just do not have the energy right now. I just want her to be comfortable and happy and she seems to be.

Hang in there!
Pina