Am I kidding myself or is it really possible to care for my bed-bound husband at home by myself?

See how it goes now that you have the hospital bed. Being able to raise it higher should help some with changing him, and you'll also develop more skill. You can re-evaluate at any time. If this goes on a long time you may need to place him in a care center, so talk to the hospice folks about options, but for now it sounds like you have things under control.

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.

Dear Not...I feel for you so much on this. My Mama became totally bedfast in December 2013. She has advanced dementia/early onset alzheimers and many days tells me she does not know who I am. She cannot lift her arms, and cannot assist in rolling onto her side, etc. or even lift her head for me to adjust her pillow. She is an average size woman, and I am pretty strong, having done fairly taxing work throughout my life, but I can tell you when she first came home, the first week I called one of my best friends and told her, I am afraid I am not going to be able to do this. I found it nearly impossible to roll her, it felt like my back was going to break, my shoulders were so tired...I love her dearly but was so afraid I just simply could not do it alone. I don't have anyone who assists me. The one person (a cousin) who does come and "sit" on occasion for me to go to the grocery or for Mama's medicine cannot change her. She is on Hospice so there is an aid who comes three x a week and bathes her, but other than those three visits, it is all on me. I felt totally hopeless. BUT.....soon it started falling into place. I learned to do it and now I will say I am able to do it pretty easily and I'm not saying I don't get tired, but you do figure out how to do it where it is a whole lot easier....and I'm speaking from the perspective of someone who honestly had about given up hope....But we're good now. That has been about five months ago and the bedfast thing is getting easier to me.

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.....

I will also admit to you that at first, I literally DREADED the whole changing of the garments and underpants thing...DREADED as if there was a sense of impending doom....I even put it off if I could an extra thirty minutes or so, and I know that is terrible, but I honestly did it because I dreaded it so much. I was afraid I was going to hurt her, afraid I was going to do something wrong, make a mess, get her tangled, and you know what? I did all of those things, but again, it fell into place. Remember to have your bed rollers locked because that makes a difference too. And if you use some form of plastic type undersheet make sure you have something like breatheable cotton on top as otherwise it causes a rash on their skin. Baby powder is my friend, as are those disposable pads that hospice provides...BUT I don't use those as underpads as I find them mostly too flimsy, but they are great to place underneath prior to pulling off soiled underpants as sometimes there is more there than at others and the underpads can save you from having to change out the entire bed. All of this off the top of my head, just things I picked up along the way.. :)

Changing someone in bed is hard work even with a draw sheet and at times the one being changed will moan and protest because they have to roll from side to side for 5 minutes. It can't be comfortable. But with hospice and your aides there always make sure that when they leave your husband is clean and dry. This may cut down on how much you have to change him on your own. At some point hospice may provide a catheter which will make things much easier on you. I have worked hospice cases and while I can't really describe the point in which people need a catheter, I know it when I see it and I'm sure you hospice nurse does too.

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.

When you change the bed you can layer draw sheet, chux, draw sheet, chux. That way you only have to change the first draw sheet and the chux keeps the second one from becoming soiled. Can the CNA's show you how to make an occupied bed? I was a nurse for 25 years so it is second nature to me but I saw how overwhelmed my sis and Mom would get when changing my Dad. Always bring to bed up to your level or your back is going to suffer. I wish I was close because I would just come over and show you. I think you are a hero for trying to keep your hubby at home. We have brought both my sister and my Dad home to die and I would do the same in a heartbeat. Of course you must take care of yourself also and if it becomes too overwhelming you may have to try something else. Keep flexible, know that you are trying your best - many many hugs to you.

It's OK to ask the Hospice Nurse "How am I doing?" because her experience with other caregivers has trained her how to spot the red flags. She will never tell you to give up, but she will pick up on your fatigue and distraction. Ask her for an honest assessment of your capabilities.

With enough help, it is possible, but you are the one living it! One of the hospice companies here has an inpatient facility and it would be good to know about it if there is one near you in case things do get too hard. It is a noble endeavor, and whether or not he needs something besides home care you will have succeeded in showing him love and making his last days as good as they can be.

THANK YOU all for your thoughts and practical suggestions. I feel strengthened to keep persevering.

I really respect nurses and care staff for their knowledge and experience. An untrained, older relative can help the professionals but not replace them, in my opinion.

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.

Nothisfault, I not only think you're doing a great job, I feel reassured that if you can't cope with it, you'll know when to say 'when' and you'll know where to get help. May you find all the resources you need, whether in yourself or from others. Well done xxx