I am sitting here waiting for Bill to wake up and thinking of how things were this past spring and how they have changed.
I had to put locks on all the doors inside the house to keep him from going into all the rooms and pulling things out. I put his dresser in the closet and removed the knobs from the bi-fold doors so he couldn't open the closet doors and pull things out or even use the closet as a bathroom. I had to lock him in his room at night to keep him in. Lower his low boy hospital bed to the lowest position so when he tried to climb out he wouldn't have too far to fall. There was a mat on the floor next to his bed just in case he did fall. He slept on that mat several nights because I couldn't get him back into the bed. He needed help getting into the shower, I put rails going down the hall so he could hold on when he was walking. Locks on the basement door so he couldn't fall down the stairs. The water in the bathroom was turned off because he liked to turn it on and let it run. Flushing things down the toilet. Soooo many things I worried about him doing. I forgot about the dead bolts to keep him from getting out of the house and wandering off.

Now, as I think about going back to our home down state, the locks on the doors, dresser in the closet, knobs off the closet door, water turned off, dead bolts and all the above mentioned things are now unnecessary. He can no longer walk down the hall to go into all the rooms or turn on the water or even climb out of his bed. He is now either in his wheel chair, recliner or his bed.. Unable to get out of any of them without my help. I now puree his food or he will just sit and chew on something forever and then not swollow it. I can usually get him to stand up and hold on to the dresser long enough for me to change his underwear, but there are times when he can't do that. He doesn't understand how to roll over in the bed so I can change him there and he fights me the entire time. He keeps trying to say he is going to fall if he rolls over. It's a rare occassion when he may put a short sentence together. He sits in his chairs and plays with whatever is close enough for him to reach and mumbles to himself for hours at a time. It is no longer possible to get him into the shower so bed baths are necessary.

He has been sleeping for 14 hours right now and when he does wake up it will be to get changed, eat and he'll be back to sleep within an hour and sleep another 2-3 hours. Then he'll wake to be changed, eat lunch and then back to sleep until dinner. He eats between 4 and 5 then I clean him up again and get him into his pajamas. He'll be back in bed for the night between 6 and 7.
Then there are some days when he will be awake all day picking at his clothes and mumbling to himself. These are the days that really wear on me. I usually have to resort to the ativan to keep my sanity.
Even on the days he sleeps all day, I can't really do anything because he may wake up and try to stand. So I usually just sit and read in his room to make sure he is safe.

In some ways things are easier and in other ways they are harder.

Hospice brought me their "blue book". It tells you what to expect as the end gets closer. I know he has gone down a lot but evidently they also think the same thing. The nurse told me that she didn't give me the book because the end was getting closer but just so I could look at it. Not sure I really believed her when she said that. If that was the case, why didn't she give it to me last spring?
His blood pressure is dropping. It normally ran around 130/70. It was 100/60 for two weeks and this last week it was 90/60.

That's enough of my sad story for now. I know I can come here and say whatever I want and cry at the same time. It's hard to talk to someone face to face and say things while you're crying. Thanks to all for being here to listen.

Oh Joyce, you are a trooper. I pray for the day, that they find a cure for this devastating disease, and as you know, do what ever I can regarding legsilation, funding, etc. I know it seems like a plum dream, but they have cured horrible diseases in our history, like Polio. I can't think of another disease that rips your heart out, at the same time, as it takes our loved ones, further, and further, away from us.

I'm glad you can come here and write AND cry, it is good for you.

Please take good care of YOU, and try to do something special, that may bring a tiny bit of joy, while your respite person is there with Bill.

{{{HUGS}}} N.Mc.

Joyce,

I know.
I understand.
(((((((((((Gentle hugs)))))))))))))) and heartfelt prayers.

Oh my dear Joyce. My heart is breaking as I read this. I know you must be just emotionally drained. These are the days of pure hell. {{HUGS}} my friend.

Joyce, I am sorry for all you are going through. I'm thinking about you.

Joyce,

As I read your post, I was trying to imagine all that you have been going through, and as much as mom is not quite in the stage that Bill is, I could feel every bit of what you were saying. Mom does some of those things but on a much smaller scale right now. And I think to myself, what will I do when they get on the larger scale. Well, I hope that I will do the same as you, and by the Grace of God, get through this. This has only been a little over two years since I've been caring for Mom at my home, and I can already feel how its affected my health.

I just talked to my sister about this today, and of course I'm sure its not something she wanted to hear at this point, but I've told her that if something happens to me, she better find a way to take over. I know she would, but I don't think I scared her about taking over as much as me saying those "if something happens to me" words.

Please know that I so appreciate you coming to the forum, and telling us like it is. I don't know how much you really realize that although scary, its so good to know what the future might hold, and I'm one that likes to have some warning ahead of time to prepare for the worse. Sugar coating things won't make anything better.

You now have made me realize that I now must go for that stress test that the doctor told me to do weeks ago, have that mammogram that I'm two months late in getting, get that blood work done that I was also suppose to have done weeks ago, and get myself somewhat healthy especially before that knee surgery in Jan.

I cannot let myself go downhill right with mom, or I will not be able to care for her. And I want to do everything thats left in me to keep on caring for her. So again, thanks for always coming here and telling us what its like, and really what I may be expecting.

My thoughts and prayers are with you my friend. We're here Joyce when you need us.

God be with you and keep you strong.

Jackie

Joyce, my heart breaks for you and I am so terribly sorry for what you are going through. You have been an excellent advocate for Bill and I only hope that if I were faced with the same situation, I would handle it as you have. You are quite the lady, and I really do mean that.

May God hold you and Bill close during this time and give you strength in the coming days. We are here for you in any way you need us to be. ((((hugs Joyce))))

Oh Joyce,

You must be somewhat numb right now with everything with your sister, your brother and Bill. I truly will pray for you as you continue to love your husband and care for him. You are quite the inspiration and I thank you for that.

Many hugs to you,

~Kelly~

Joyce,
I keep you and Bill in my thoughts and prayers.
I hope you can continue to find some sense of
relief through the friendship and e-support here.
I wish we all lived close together so that support
could be more tangible, but we will be here for you
emotionally.
Carol

Joyce,

Just know that if you need me to be there in person, I can arrange my schedule to be there to help out. You're not that far away from my Mom's NH.

(((((HUGS))))) from me to you. You've been in my prayers and thoughts, and will always be.

I'm praying for you and Bill!

Kat