I'm still here too, Joyce. I'm sorry you are having to go through this painful part of this journey with Bill. None of it is fair. Please know you are in our hearts. (((hugs)))

I'm one of the lurkers that sneaks in every once in awhile to see how all is going with you guys. For me it is harder to be here now that I have lost my father--I don't know why or can't explain it. I feel your pain, Joyce as well as all of the rest of you. Know that you ALL continue to be in my daily prayers as this a difficult road to be on.
On a good note, I'v found something that I think will help us all maximize our brain power. Have you ever tried Rock Band? I've never felt so spastic but I am going to continue to play it with my 9 year old. It has GOT to use all areas of the brain which should help me somewhat with what I fear may become a part of me one day!
Hugs to you all, Cherie

(Pictures of myself with my child and my mother! )

You can tell your mother is really into it Cherie. I hope she doesn't get too excited and bite her tongue . Looks like everyone is having a lot of fun.

I'M FINALLY BACK!!!

My computer had a brain freeze back on Dec 12 -- just all of a sudden it stopped working. Tried everything I knew how to do but it was no go. No money to get it fixed, much less replaced, sooooooooo..................
My son poked around one day but couldn't fix it either.

I spent most of the holidays sick in bed with pneumonia -- am still far from well -- and had no interest in messing with the 'puter.

But the other evening I felt froggy and decided to plug it back in and try again...................and lo and behold, everything was OK again........... No idea what happened or why its working again, but I am so very glad to be able to check in on my friends again.

Joyce, mom went through a period of being so very agitated and it was very hard to see her that way. Fortunately, she was so very tiny by that point that I had no fear for my physical safety, but I worried that she would manage to climb out of bed and injure herself. Hospice nurse got her on risperdol and the agitation decreased considerably. Yeah, she was sedated, but at that point she was sleeping a lot of the time anyway and I really didn't notice an increase due to the drug. Personally, I would rather have had mom sedated than caught in whatever terror was making her so agitated. To me, that was the lesser of two evils. Hang in there, friend. You have my number, please call anytime.

Good to have you back with us, Karenlee. I can't even imagine being without my computer. I would probably be banging my head against the wall.

I'm glad your computer is working again Karen. Give me a call and come over again when you get out.

How long did this restlessness last with your mother. I'm sure it is just another step closer to the end. He is reaching out for things in the sky even when he's asleep.

Welcome back Karenlee! Glad your computer is up and running again! Maybe it just needed a little rest:)

My harddrive went out on this one a few weeks ago and I was offline for a while. It actually wasn't too bad really. I got a lot of things done around the house! Still, it is an inconvenience.

Thanks, everyone.....it's good to be back.

Joyce,

Mom's agitation got really bad just a couple of weeks before she died. But hasn't Bill been agitated before and then calmed down for a period of time? Maybe he just needs his meds changed or adjusted -- it could just be that he can no longer assimilate the drugs he's taking and needs something different. I'd be willing to try a med change anyway.

And, yes, you remember correctly both Lori and me talking about decreasing urine output, and the color and odor. His body is not getting the full message anymore on how it is supposed to function due to the increasing tangles in his brain, and his systems will begin to gradually break down. It's the progression of the disease. Sorry I can't be very encouraging right now, but after meeting you and spending time with you, I believe you would rather hear an honest opinion rather than empty promises................... I can't tell you how sorry I am that you have to go through this.

I went back to the DR today and he's not pleased with my progress (or lack of progress, I should say) and I do NOT want to bring my germs into your house, I'll call you this weekend, okay?

Hang on, dear friend. We are with you, in spirit, every step of the way.

You take care of yourself Karen. Call me anytime, if I'm busy I'll just let you know and call you back.
You're right it's better to know what to expect than to worry about it. You always imagine the worse, at least I do.

The hospice nurse just left. The doctor wants to stop the ativan because it can cause restlessness. He is going to increase the seroquel to 100mg 3xs a day. We'll play it by ear and see what that does. She said that seroquel decreases the body's ability expel the ativan and there could be a build up in the body. Not those exact words but that's what I understood. She thinks this is just the beginning but not the end. His BP was good, heart rate 98 so that was a little high but not unusual with his restlessness.
Sunday was the agitation and since then it's been more of restlessness with some agitation.
He does seem less agitated today and acts like he knows I'm supposed to be there.
He isn't eating or drinking much but when you're sleeping all the time it's hard to eat or drink.

Urine output is still good, not as much as usual, but again not as much going in.

Now we'll wait a few days and see what the change of meds does. I do feel better after talking to the nurse. Not as worried that this is the end.
You want it to end and then when you think it's going to happen you don't want it to.

Thank everyone for your prayers, I'm sure they helped this past week.

I've been so busy since my last post, I can't recall if I sat still enough on either New Years Eve or the Day to truly enjoy it. Between having clients and inviting a bunch of my close friends over for NYE, I've been cleaning and baking until I'm all tuckered out! We stayed up till 2 a.m. ringing in the New Year!

Actually, we had a really fun evening with everyone and my one friend let their teen daughter spend the night and we baked cookies and bread all day long. Then when it was time to take her home, they invited us to join them for lasagna. Didn't get home from there until after 10 :30 p.m., and I had clients again this a.m.

No resolutions other than to keep myself on some sort of schedule so I can still clean houses and office buildings in between my care-giving duties. That, and making DH get out and put in applications for at least temporary work.... IF there is any work to be found!

Daughter #2 wants us to move close to her, as she says there is all sorts of work to be had in the Dallas/Fort Worth area. We shall have to see... still need to get the condo sold.