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I’ve been caregiver for my mom for a few years. She is in very late stage dementia now, and is unable to stand up or walk and is completely incontinent. In the last few months she has also become unable to feed herself, so I do that for her as well. She doesn’t really talk, just uh huh and uh uh sometimes. There is very little of her former self left.
She has been in and out of hospice home care for 2 years (she’s in right now). For a long time I’ve been getting her up each morning and putting her in her wheelchair, where she stays for several hours at the kitchen table until I transfer her back to her bed.
Lately she’s had recurrent sores on her bottom and so I kept her in bed for a few days to try to alleviate that. And during this time I’ve realized how very much easier everything is for me, not having to transfer her, which is hard work. It’s not just the transfer, I don’t have to put pants on her so changing her brief is so much easier too. Even feeding her in the bed is simpler.
So I’d like to hear your thoughts: should I transition her to staying in her bed all the time? Is it selfish of me to want to do that? My thinking has been: how does she benefit from being up and sitting in her chair? She doesn’t really interact with the family around her, and spends a lot of time dozing. (We had recently got her a reclining wheelchair for this reason.) The sores are not helped by the sitting.
Physically, maybe sitting up has kept her using those core muscles a little bit, but how important is that in a person who is not really living a life? As it is, she has kept going much longer than we thought she would: her dementia is at almost the bottom of the scale. She can still hold her head up, which is about it. Although, sometimes she smiles at me, which warms my heart. Her vitals are good, she is physically healthy.
I don’t want to hurry her towards her passing: she’s my mom and I love her. But keeping her in bed feels like a step in that direction.
I will of course discuss this with the hospice nurse. I know from a hospice point of view, Mom’s comfort is the main thing, and we are not trying to prolong her life anymore. And my needs matter too.
Thoughts?

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I'm so sorry you are both going through this terrible ordeal. If mom stays bedbound, she'd have to be moved every 2 hours to prevent bedsores. You'd need waffle boots for her feet, because the heels are very prone to developing bedsores. As far as changing the sheets go, that can be done while she's in bed or you can transfer mom to the wheelchair for awhile. You'd need to get a gel cushion for the seat of the wheelchair, however, to prevent further sores. Hospice may be able to recommend a good one.

For the sores that do exist, Medicare pays for home health to come in to the home to treat them. Even while mom is on hospice. Only certain nurses do wound care, which is what a bedsore is.

Speak to hospice about their recommendations. Yes, your life is very important too. Being bedbound at this stage of dementia is a common thing. It's not selfish of you to start thinking along those lines at all. If you think you can no longer handle mom alone at home, it's no sign of weakness to hire help or to place mom in Skilled Nursing either.

Wishing you the best of luck with a difficult situation.
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Reply to lealonnie1
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FixItPhyl Nov 4, 2024
This answer was very helpful, as many of us visiting this forum are dealing with this, as caregivers. It is hard to judge what to do at this stage of dementia, but I do believe that the caregiver has to be the one to come to terms with what she/he can manage without getting ill themselves. All of these answers give details for making thoses judgments. Thank you all.
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Thank you everyone for such supportive and informative answers! I really do appreciate this forum and all of your advice.

I'll try to answer some concerns that were mentioned: she does have a good hospital bed with an alternating air mattress, as well as heel protectors for her feet. And I have learned to change the sheets with her on the bed. I learned it from YouTube, plus advice from the aides that come weekly. At first it was daunting, but it can be done and I did it. I just don't do it any more often than absolutely necessary. Those pads help keep things fairly fresh.

I will talk to the hospice nurse tomorrow, but all of you have convinced me that it is okay to keep her in bed. Most importantly, she seems content and isn't restless.
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Reply to CissyR
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Your mom essentially is dying now and I cannot see the benefit to being propped up on that sore bottom for any amount of time at all.
I would discuss this now with your hospice team.
I am so sorry. This slow dying process is excruciating.
Hospice should be getting the wound care team in now, as well.
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Reply to AlvaDeer
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Cissy, so glad you asked this question because I am going through this stage with my mom as well. The responses here are very informative and most likely based on real experiences. I understand about the feelings you are struggling with, but I have learned that it is part of the journey. Your mom is blessed to have you. Trust yourself with the decisions you make.
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Reply to FixItPhyl
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SissyR, so sorry that your mother has declined so much, and you are having to watch her dissappear from the inside-out, so to speak. It takes a LOT of energy to maintain a sitting upright position. Currently the best thing is to have your Mom in a hospital bed and put things in the room that she might enjoy. She can hopefully look out a window and see birds at a feeder. If you are concerned she would be isolated, you can put the hospital bed in the living room or den. Or you can move a comfy chair and tv into the bedroom, so you can spend time with her in there. You may find she is sleeping less and slightly more responsive to you when she doesn't need to exert so much of her energy to sit up. You can change her position often in bed. The main thing now is comfort. If she doesn't care about wearing pants, let her be in her diaper. There's also shorts with snaps on each leg, which you can roll her into when you do her morning clean up. There are snap shirts too. SO much easier. Dyeek is the brand on Amazon. Comes in a variety of sizes & colors. And please have a talk with Hospice about what happens when your Mom can no longer eat or drink safely. A feeding tube can needlessly prolong things when she has become a shell of her former self. God bless you for taking care of your Mom.
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Reply to JanPeck123
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When Mom could no longer stand and when Mom could no longer take a step I made the decision to keep her in bed. I also enrolled Mom in hospice at that time.

I have no regrets. We had pushed Mom hard for years. It was time.

It is easier and safer for everybody to reposition Mom every 2 hours in bed.

Mom's caregivers propped her up to eat (which was limited by this time anyway.)
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Reply to brandee
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Ask hospice for a hospital bed with an alternating air mattress to help more bedsores .
Have nurse for wound care also.

The bed sheets can be changed with her in bed. The hospice nurse or aide can show you how . Or you can YouTube it.

The advantage to getting her up for a bit is it may help prevent pneumonia , although that is very common at this stage of dementia anyway . But if it’s too difficult for you , at this point I think leaving her in bed is fine. You need to take care that you don’t get injured lifting her . In bed she needs Turning every 2 hours.

As already said the heel pads and gel cushion for the wheelchair are needed.
Perhaps elbow pads as well. It sounds as if getting her up may not be for much longer anyway , if at all .
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Reply to waytomisery
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I’d likely keep her in bed with the appropriate mattress and precautions in place. Changing sheets and bed pad are quite doable once you’ve been shown how by hospice nurse or aide. Make sure they’re helping with bedsores and keep turning her every few hours. My dad’s hospice agency had a list of private workers they were familiar with, I hired several of them to give me some rest, they were excellent help. Look into this, as you shouldn’t try to keep up this level of caregiving on your own. This is the natural progression mom is in, her comfort is all you’re looking out for. Be sure to watch for signs of slowing appetite, it may not be far off. I wish you both peace in such a sad time.
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Reply to Daughterof1930
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My late husband who was completely bedridden for the last 22 months of his life and under hospice care stayed in his bed all day except when the aide came in the morning to put him on the bedside commode to poop. And it was then that I would change his sheets. However, towards the end of his life where he wasn't getting out of bed for any reason as he was "actively" dying, the aides would change his sheets after they were done bathing him while he was still in the hospital bed, as there is a trick in doing just that.
So the key here is to make sure that hospice is supplying a hospital bed so that your mom can still sit up to eat or watch TV, and can be adjusted for her comfort.
I guess my late husband was fortunate that he never got any bedsores as he literally stayed on his back the entire time he was bedridden, with just the simple mattress that came with the hospital bed.
You do what is best you and make sure that hospice is keeping your mom as comfortable as possible.
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Reply to funkygrandma59
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My mom is experiencing leg ulcers. She is in pain and has a special mattress. The bedsore and constant vascular wounds are painful. I am encouraging her Personal Care Home and Hospice Care to allow my mom to relax in bed. My mom is not mobile either. Comfort is more important than anything else. Sorry we are seeing a sad transition.
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Reply to Onlychild2024
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