We keep adjusting the meds - first on Halidol then off. Now on Ativan.
At least it helped him to stop screaming at the 'people'. But he keeps pacing to and from the bathroom.
Lowered the diuretic - No UTI - just OCD. We have a weekly visiting nurse and a monthly psych-nurse.
Its so sad. As soon as he pulls up his pants, steps over the threshold, he turns around to do it again.
His legs are so swollen - the skin, tight and dry.
He's exhausted and that's why he collapses..
Today's his B-Day and I made him a memory-talk book. I hope to keep him seated for 20 minute stretches.
We will talk about his favorite topics - Riverview Amusement Park, Abraham Lincoln, swimming off the rocks at Diversey Harbor, 3-D TV, Blue Eyes, and Russia's soil conditions - over and over again.

Did you bake a birthday cake, Eileen? How old is your dad? Bill used to love his memory book and would look at it quite often. We did have to make adjustments to it by not just putting the persons name under the picture but we also had to tell the relationship. ex. Bill's wife, Joyce or Bill's daughter's, T, C & S. You get the idea. This worked until he really didn't know who Bill was.

Has the change from haldol to ativan helped? Bill could not take haldol because it made him a zombi. I really believe they forget how to go to the bathroom. I was actually glad when Bill went into pull ups full time.
He would say he had to go everytime he sat down at the table to eat. But I know he didn't go when he went in there. He forgot why he went in and would turn around and come right back only to jump up again and say he had to go.

I have hopes on getting to Chicago around April 13th, maybe we can get Jackie and go out for dinner or lunch.

Oh, Hi Eileen & Joyce. How old is your Dad today? That is just heart-breaking. My Mom said she had to pee, three times in one minute, so I thought something was wrong? Maybe they just don't know what it feels like, or it tricks them? I didn't realize you were having so many advanced problems, with your Dad, like hallucinations, etc, Eileen. My heart breaks for you. Some how I can never feel sorry for myself, if I just pop in here.

I'm glad you seem to be doing so well, Joyce. I have to go to sleep, I haven't been feeling right. See my Doc in March. Chest congestion, and like I am not getting enough oxygen? Weird.

Nite!

I'm doing what I have to do Sky. I don't like it but there's no other choice.
I hope you got a good nights sleep and are feeling better.
I actually got a letter from my doctor telling me to come in for a bone density test and an office visit. I saw him in Oct. you would think he'd seen enough of me for a year. I'm going in tues.
I got on the roll with doctors and decided I should see my endocrynologist so I called him, his first opening is April 23rd. I'll probably forget about it by then. Hope he sends a reminder.
How are things going today Eileen?

Hay There,

Things are OK today. I'm always better after a good nights sleep.

We had vanilla cupcakes for Dad's 81st B-Day - good finger food and for portion control. I got him to sit for 2 1/2 hours by going through the memory book. When I stopped to get some water - he was back up to the bathroom. By then I needed the break. He's really obsessing on food . I gave him dinner 5x - just broke it up into small portions. You have to keep jumping up to get his food ... and that's tough for my Mom everyday - bad knees and curved spine from osteoporosis.

I felt so down when I came home. Its so emotionally draining for me. I don't know how long my Mom can continue to care for him at home.

The halidol was awful - he would forget how to walk or would cry and say, I'm falling, I'm falling-it really doped him up. We had to take him off it. He built-up a tolerance for xanax, so thats why we switched to the ativan.

I hate to talk about this situation. It goes from one thing to another. There's more to this story-but this is all I feel comfortable telling now. I feel everyone has it bad in their own way.

Thanks for caring and lending an ear.
Eileen

Small portions is probably a good idea. I use to keep a spiral notebook where I would write notes about what was said or done. When Bill said he did or didn't do something, I would show him the book and he would say "Oh, I guess I did"
This was while he was still able to read and understand what he wrote.

I guess I didn't realize that your dad is only 4 months older than Bill. Bill would have been 81 this coming June.

Hope we can get together this spring or summer, when ever I get to Chicago.

Is your dad using a wheel chair? Maybe it would be a good idea if he is falling. Bill didn't like the idea at first but I think he realized he could get around easier when he used it.

Keep talking about what's going on Eileen. You know I was here everyday telling everyone what was going on. I think it helps being able to talk to people who know what you're going through. Everyone has it bad, but everyone still cares.

Thanks Joyce and Big Sky,

Dad uses a wheelchair outside - rolling walker inside. Sometimes he drags the walker behind him instead of pushing - like he forgets how it works. My parents live in an old, third floor apartment - going on 30 years - at least it has solid oak door frames that he hangs onto when he doesn't want to use the walker.

Hope to see you in the near future.

Eileen

I take it he won't use the whelchair in the apartment. Could you have hand rails installed? I had the installed down the hallway for Bill to hold on to. They are still there and I find myself sliding my hand along them as I go down the hall. They will probably stay there. I have no intentions of removing them.
We couldn't use the walker because he forgot how to use it.
I hope he doesn't fall and hurt himself. They may not know what is going on, but they are adults and we can't make them do something if they don't want to do it.
How is your mother holding up? How are you holding up?

Oh Joyce, you are so dear. Eileen, like Joyce said, 'Vent' away! There are not too many of us, still in this boat, which makes me feel kinda weird. Everyone should have "MY" problems. Mom has forgotten how to call me, at my House, so always calls on my Cell, which I rarely use. I finally lowered the monthly cell/bill to $20.00 per month, emergencies only, because I just check the Voice-Mail, from my house, for her, and that is not exactly worth $50.00 per month. I will switch plans, when & if I go there, or travel again, and then switch it back.

She doesn't mind that she has forgotten what month it is, what day of the week it is, or $20.00 from $20,000.00 dollars, or 50-60 years of her life! But she is soooo afraid, to not Thank-You (me) for any kindness, you show her. The latest is, she has thanked me three or four times, for her Christmas Coat, and matching gloves & scarf, although she doesn't know what to call them, I understand. She is still the 'sweetest' woman, I have ever known? Which makes it all that much harder, for me, I think.

P.S. I have a Face-Book friend, who has a sister, that works with a lot of attorneys, in California, and is going to try to find me one, to work Pro-Bono, to fight for custody for me, for my Mom. I know it is a long-shot, but I keep hoping & praying, we will catch a break.

Hi Eileen,
How are things going today? Keep in touch.

Sky,
I'm surprised Mom can even call the cell. Bill was never one to talk on the phone much, but he forgot how to use it very early. Money meant a lot to Bill even though he thought everything was soooooo expensive and let everyone know that when we went out. He was always willing to take us out to dinner because he had $7. he had no idea the vaule of money.
Good luck with the attorney.

Hay There,

One Day at a time.

He hasn't fallen over -- yet!.
The big problem now is urine - he's either missing the toilet, forgetting to pull his pants down before he goes or something. Pee everywhere. I feel like I can smell it on me now.
Did 2 loads of rugs and pants - I'm getting my exercise up & down 3 flights of stairs to the laundry room!

Dad really likes the memory book - he keeps saying, 'this book is very interesting, how much did it cost'?. I wonder if putting the pictures of his mom & brother was a good idea - seems to talk more about death, the afterlife, belief in God - after looking at those pictures. I don't want him to cry again.

A funny incident - he told me at dinner that I gave birth that morning to Amanda Mary Stephenson, who happens to have the same initials as he. What could I say? - I said children are a blessing from God.

Thanks for listening and caring you guys. I don't feel so alone.
Peace
Eileen

Bill didn't realize his parents were gone when Theresa made the memory book for him. He kept that book close to him for the longest time. Eventually the people in it didn't really mean any thing to him and he stopped looking at it.

Pee? That's a memory. I use to say my bathroom was the cleanest room in the house because I was in there washing the floor, the toilet even the vanity because he would try to use the sink instead of the toilet, more times in one day than I use to in a week.

I was lucky most of the time because he did go into the bathroom. I did have my share of bedroom floors and closets to wash but that didn't happen too often. It was so much easier when he was in depends and forgot what it meant to go to the bathroom to pee. He did go in there for bowel movements but at least he sat down then. Get ready Eileen, he sat down for BMs but he didn't always sit the right way. Usually it ended up all over the seat. Good luck on that.

Bill came up with some good things at times and I did just what you did, go along with them. He told me one time that I didn't look 65 and when I ask how old I looked, fishing for a compliment, he said I looked much older than that. Sort of like an attorney asking questions to a witness, "If you don't know what they are going to say, don't ask the question" you could get an answer you don't want.

I'll be back to check on you. Let us know how things are going.


I

Hay Joyce,

We have Depends - put he still pulls them down when he stands & urinates. We're thankful that he still wants & can (somewhat) toilet on his own. Its starting to get messy.
He sits on the edge of his bed to change his wet pants and we are getting skid-marks on the sheets. He won't let us wipe/cleanse him after a BM.

Ugh.

I have a question - what do you recommend for plastic bed covers? I better start on that.

Thanks so much

Eileen

I had the hospital bed so the mattress was waterproof. I liked the waterproof mattress pads on the regular bed. I bought crib size water proof pads and layed them across the bed. I bought them at Wall Mart or Target. I think the WalMart brand was the better of the two. On top of that I put another water proof pad about the size of the blue pads. I was able to use the crib size one as a draw sheet to help turn him in the bed.
No matter what I used he managed to have the bed soaked every morning. It got to be a routine of doing a load of bedding and pajamas every day. At least by doing it daily, it helped cut down on any urine smell.
Bill tried using the toilet long after switching to depends, but I was just as glad when he stopped trying. When he was trying, I still had to change both depends and outter clothing because the were always wet after he went.
I never was able to convince him that thing wasn't 12" long and he always wanted to stand a foot away from the toilet when he went.

I looks like we're the only ones here but I'll be here if I can help you.
I'm sending you my email address in case you want to go that way.

Thanks so much Joyce!!!