Am I kidding myself or is it really possible to care for my bed-bound husband at home by myself?
My husband has later stage Alzheimer's and has been on hospice for a month. I'm caring for him at home and he's almost completely bed-bound now. Hospice ordered a hospital bed, which he's been in for a day now. Wow - changing him in bed is a lot more difficult than I had imagined. He is a big buy - around 200 lbs. - although he's lost 25-30 lbs. in the last 60 days due to eating so much less. I had to have two friends from Church come over yesterday a couple of times to help me change him. I'm learning the 'draw sheet' technique, which makes it easier - but it's still incredibly hard. For the last 5 days, he's not been sleeping at night, so I haven't been sleeping at night, which is really hard on me. Now that he's in his own bed, he can fidgit, move, wiggle, have foot tremors, etc., etc. all night, and I should be able to sleep. Night before last, I had my first decent night's sleep in a week. Last night was a little more difficult because he made audible noises throughout the night, but he eventually went to sleep around 3:00 am, so I slept in a little this morning. Except for changing him, he's really not too much trouble. He's eating and drinking OK now - not much, but some. The hospice aide is bathing him twice a week in bed and I have another CNA that I've hired to come in and care for him on Mondays and Wednesdays when I have to go into the office since I'm still working full-time (I work from home the other three days during the week). I do have help with the hospice aide 3x/wk for an hour - and the CNA I've hired 2 full days/wk. Our four children are supportive, but live out of state and can only come for visits occasionally. I don't know how much longer he has, but because he has no co-morbidity and is physically in pretty good shape (except frailness), he could last a while. He doesn't recognize any family members and I don't think he knows I'm his wife, but I think he still knows I'm someone special because I'm always around him and taking care of him. It's all pretty overwhelming, but I'm hanging in there. Am I in over my head to care for him at home by myself? My strong desire is to keep him at home as long as humanly possible, but have others done this alone without sacrificing their health?
This whole thing is a giant social experiment. People did not used to live to their 80s, 90s and older in large numbers until now, and society has not adapted to this new situation. Old age used to be 60 and the complex medical cases of today hardly existed in an age without antibiotics, ie pre World War II.
My mother thinks home care. to be undertaken by me of course, 24-7, and without any support because of the community where she lives, is "just common sense", but it just isn't so. I think I am being set up for failure. It would be a miracle if I didn't make mistakes.
As for you, Nothisfault, get as much trained help as you can and supplement it according to your strength and ability. Nothing beyond can be asked of you as you are not superhuman.
Bless you for keeping your husband at home. Make sure you are getting enough rest and proper nutrition and fluids. You can't afford to get down now. And if it becomes too much for you I hope you realize it and consider other options for your husband. Taking care of someone with Alzheimer's who is walking and talking is so difficult much less someone who is bed bound. We can only do so much.
As I'm sure you already know, the draw sheet is the key, and I also took a large heavy weight plastic tablecloth and folded it to where it is like an oversize waterproof underpad and put large white cotton towels over that for comfort and absorbency and when I roll her, I kind of pull her towards me a bit first then roll her pretty easily. I don't know why that helps but I found, for me, it does. After I clean and change her, I can easily go on the other side of the bed and pull her back to the center of the bed. I know you know that if you raise the foot of the bed a bit they are much easier to slide back towards the head of the bed since the downhill incline helps you just slide them where they need to be. I have found these tips on trial and error and you will probably find others and by no means am I implying it is easy....caring for a loved one who is home or bedfast is just hard, period....but I didn't think I could do it. But after about a week I began to get the hang of it, and can say that it is very doable....I pray you take care of yourself and am glad you are here. I still have my off days and you see me lots then ..hopefully now you will be able to get some sleep. It may be tough going with the changing and such for a bit, but I bet you get the hang of it, but please be sure and take care of yourself. Blessings.....
In a way, your health is at risk whether he is at home or elsewhere. You are still going to want to spend time with him, you are still going to stress over the situation. Do the best you can to take care of yourself. Eat right and at regular times. Get some physical exercise each day. Try to get a decent amount of sleep. My husband's hospital bed was 4' from my bed. I tried to line my sleep cycles up with his but I seldom got a full night's sleep. Sometimes I used the CNA time to just sleep.
You want to keep him home "as long as humanly possible." Just be realistic about what is possible for you in this situation. Let the hospice staff give you input about that. Re-assess often.
Best wishes to you in this difficult and challenging time.