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

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

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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?

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