I really don't know where to start with this. Things are changing so fast.
Bill has become the most irritating two year old you've ever seen.
He is still able to shuffle around. Sometimes I wish he wasn't able to get up and walk.
I'm always afraid he is going to fall. He's never fallen while trying to walk, but he has fallen
while trying to sit down. I can't get him to stand in front of the chair before trying to sit and
he ends up only sitting on the edge of the chair. If the chair has arms, he ends up on the arm
and sliding down onto the seat.
If he was just pacing, it wouldn’t be quite as bad. Although that is frustrating also.
He is constantly getting into things. Opening the china cabinet and taking out the china that he purchased
In Japan during the Korean War. He will take dishes out of the cupboard. Empty his dresser drawers, strip his bed, turn the water on and leave it running, see how much TP will fit into the toilet before
Trying to flush, opening closet doors and peeing in the closet, taking his clothes off, insisting on going to
The bathroom and not even coming close to the toilet. Having bowel movements on the toilet, and I do
Mean “on” the toilet. Every morning I start my day by mopping up the bathroom floor and this morning it was also his bedroom floor (that wasn’t the first time for that either)
I have locks on every room in the house that has a door. If I didn’t he would go into each room and get into things. He strips the beds if he can get in the bedrooms. I have a bunge cord on the china cabinet so he can’t get in it. I’ve removed the knobs from the closet doors so he can’t get in there. I’ve turned his dresser to face the wall, I’ve removed everything moveable out of his bedroom.
When I talk to him, he will just look and me and say “ok” then continue doing whatever it is he’s doing. He doesn’t understand what I say to him. If I ask him to pick up his foot, he will say ok and plant it firm on the floor. I have to dress him each morning because he doesn’t know how. But during the night he will strip and then put on something else. I’ve stopped him from taking dirty depends out of the diaper pail and trying to put them back on. He can not communicate with me, doesn’t understand what I’m saying and is unable to put two words together.

What can he do? He can still shuffle around, although he does need a wheel chair if we go out, stand with some help in getting up, eat by himself ( as long as I cut up his food and set the plate in front of him), go to the bathroom (usually on the floor and after the depends are already wet), manages to have bowel movements in or “on “ the toilet unless it’s diarrhea then it’s in the depends. He can get into and out of the car with assistance.

I guess everything seems to be building up more because I had planned on going to our daughter’s for Easter and now I don’t want to have him around the grandkids for and extended period of time. I had planned on staying for a week. Not with the way he is now. I’m not sure how I would keep track of what he’s getting into in a home that isn’t adapted to him. I will probable opt to just stay home.

The doctor has said that he would qualify for hospice. But I really don’t see where that would help that much. He would still be doing the same things. So I’d have a nurse come in and tell me he’s well and an aide to give him a bath, but that isn’t where the problem is. I know he’s well and I have no problem with giving him a bath. It’s the constant attention that he requires that is getting to me.

That’s enough of my complaints. I just had to get it all out to someone and you were the lucky ones. Thanks for listening.

Oh sweetie, BREATHE, BREATHE. I'm sorry for all you are going through. I can feel your frustration. The one help that having hospice in is that you would get one week of respite each month. Consider it please.

Oh Joyce, I'm sorry this is all so hard right now.
I wish I could say something to help. Lori is right,
though, about seeking respite for YOU through
hospice, if nothing else.
Keeping you and Bill in my thoughts & prayers,
Carol

Oh Joyce,

I am so very sorry, it must be so very frustrating to deal with a great big 2 year old, one whom you have adored and respected for so many years and now this. My mother is fast going that way and is so physically healthy that I fear she will be much like Bill soon. She worked on cleaning out her silverware drawer for over 3 hours the other day on rugs that she put on the kitchen counter. Daughter was afraid she was hiding silverware all over the kitchen.

Please consider some help in your home that will allow you to get away. You really need that respite and your grandchildren NEED you, so do your children. Bill would want you to get away so that you are cared for. Everyone in your family is important and needs care, not just Bill.

You are so precious and such an encouragement to me, I don't want to see you end up sick because you aren't able to get out and take a much needed and deserved break.

Many hugs to you,

~Kelly~

I agree with the others, Joyce. You need some time to recharge your batteries. I know it isn't a permanent fix, but it will help you to get out, take a break, breathe a little - when you return you will have more strength to deal with it all.

Hang in there.

Oh Joyce! Now I know how you are doing, I E-Mailed you today to find out, but wish I had seen this first before telling you of my Mom's latest delimma. I agree with the others about Hospice. It is just more help, and provides respite, and is FREE! I think some people are afraid of it, because it signals late stage, and perhaps even, a grim diagnosis. Some States even require a Six Month Terminal Diagnosis, but I now know it ia different with AD. The worse that can come of it, is that you wont like strangers in your house, but I have only heard of "ONE" case, where the Loved One's were not goo-ga-ga over their Hospice help.

I've noticed an ad runnig on Television, of a training for Hospice Volunteer work. I am considering taking it, just so I can be better trained for when the time comes with my Mom, or anyone else for that matter. I know they incorporate spirituality too, and I REALLY like that part of it too!

Take good care, and maybe if you get Hospice, you can take that belated Easter Visit, alone.

Joyce:
I am so concerned for you. You describe things that were similiar to how things were going with my Mother toward the last months she was alive....I am not a "spring chicken" and the physical and mental stress were becoming so hard to hold up to. Of course Mother is gone now, (as I shared with you all here on the forum) she died on Feb. 4th. I miss her so much and often in the night I think I can still hear her calling for me from her bedroom or hear her walker as it scraped across the carpet.....but I sit up in bed to listen harder and then I remember she is gone and she is safe with the Lord and not in the torment of the Alzheimers "fog" anymore. I'm so thankful for that.
I didn't mean to get off into my own lilttle world....I just want to agree with the other forum family members and ask you to strongly consider asking for Hospice Help...you are right when you say that the visiting nurses and/or aides wouldn't be a great deal of help to you right now, but the fact that with Hospice involvement you would be eligible for respite time would be worth more than you realize.
You need to think of yourself. I wish I could help you....I pray that the Lord will continue to Bless you for the care you are giving to Bill and that you will allow Him to be your strength and your refuge.

Louise

Joyce,

Oh dear, it sounds like you have jumped from the frying pan into the fire. Your frustration is so evident, and I have nothing to offer you. I am so sorry. There is no easy way to get through this disease. It tends to throw something new at you on a daily basis and before you have figured out one problem another crops up.

I agree you should seriously consider getting hospice involved. You are exhausted and dealing with the daily, hourly frustration and stress is NOT good for you.

You and Bill remain in my thoughts and prayers.

Gentle hugs, dearest.

I have been thinking of you and Bill since I read your post last night. How about just talking to hospice and seeing what can be offered. Any lifting of the load on you will help.

Hospice is in play as of yesterday, Mar. 19th.

All equipment has been delivered and the regular nurse made her first visit this afternoon. She seemed very nice and sympathetic. She will let the social worker know that I could use some respite as soon as possible.
I think one of the respite facilities is where Bill went to day care.
The RN is checking into getting something to get Bill to sleep all night. Oh, what I'd give for a straight eight hours sleep.
I'm doing ok, but thanks for the concern. I am looking forward to the respite

(((((((((((((gentle hugs for joyce & bill))))))))))))