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Stage 6 dementia, no ability to do anything independently, and the one thing that requires ambulation from chair to wheelchair to toilet is becoming way too much, due to incontinence setting in. I'm just cleaning up clothes, chair pads, and wheelchair pads (some washable, some are chucks) every time, despite my best efforts. My LO is entirely dependent on my strength for getting up each time. My body cannot take much more. I don't see where we are gaining anything or even holding steady, because he is fast losing his ability to know left/right and front/back. Just directing him from the bar to the toilet is difficult and sometimes, impossible. I just don't see much difference in sitting in a recliner in one room or staying in bed, at this point. At least, I wouldn't be cleaning everything, all the time, over and over. I know full well that he would just fall within a few days at a NH and no one would actually be taking him, like I am. At least I'd be keeping things clean and keeping him turned in bed and such. Just very physically worn down and I'm struggling with when and who "calls it". Thanks so much.


Let me add-my LO is dealing with a previous, major stroke from years ago and one side of the body has been neglected for quite a while. Makes things much more difficult. Like trying to balance a 160 lb person on feet made of Jello.

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Make him stay in bed?! He is way past that. It’s time for a facility or hired help. You can’t keep doing this. No one person can! Even if you kept him in bed he would deteriorate. Skin breakdown, pneumonia, infection. It’s hard to accept when it’s time for more help, but it is time.
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queenofchaos Jun 2019
We do have hospice and have also hired a sitter to give me relief several days a week. I realize there are issues associated with being bedridden, however, we've had two NH stays and unfortunately, the attention to those issues is not what it needs to be. For example, we just did a respite care and he came home with breakdown on his bottom. They just let him sit in pee, when no one was there. I actually had someone there 5-6 hours a day too. If you can't get decent care with someone actually putting eyes on things like that every day, when can you? I have zero faith that the NH's will attend to the needs. :(
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The advantage to getting up is that change of position helps to forestall skin breakdown, it also gives the person the opportunity to see and hear what is going on beyond the bedroom walls.
When my mom got to this point I considered getting a lift, but ultimately realized it was time for a nursing home. In all honesty when it came to physical care my mom was much better off in the nursing home than with me: the aides worked in teams so there were 4 hands to change and reposition her, the ceiling lift meant that nobody was causing skin shear and tears while struggling to provide care, she got placed in her wheelchair and she was able to go outside in nice weather and attend musical entertainment, and best of all she got a tub bath twice a week, something she hadn't been able to enjoy for years.
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I'm sorry your respite breaks at the nursing home were not up to par. I've got to say that I was terribly upset with the two respite stays that my mom had as well, but once she became a permanent resident my experience was different. I think part of it was that it takes time for the staff to get to know the resident and what they are capable of. I was also away during mom's respite stays so I wasn't checking in daily the way I did when she became a permanent resident. And I think I had learned from our previous experience as well as from the short time she spent at a different NH so I was better prepared. Whatever you decide remember that your needs and health must be considered too, you need to to care for yourself in order to have the strength to care for him. 🤗
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