Should I transition mom to full time in bed?
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?
18 Answers
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I posted earlier that I had no regrets when we kept Mom in the bed.
Mom was an outlier and had alzheimers for 18-20 years. We pushed Mom hard with walking for years. She went from walking/standing to maybe about 5 months of wheelchair/recliner to bedbound. She was bedbound for 18 months before she passed.
Since we had pushed Mom really hard with walking for years. When she could no longer take a step or stand it was time to keep her in bed.
This is one decision I have no regrets on.
She has lived with me for the past 7 years and I'm her sole caregiver. I do everything for her except swallow and take steps. She doesn't take any meds other than a thyroid pill and her vitals are excellent.
She has been under hospice care for 18 months.
One thing that you may want to ask Hospice for is an air mattress. Mama was starting to have some (what I call hot spots) beginnings of redness at bony areas from sitting and lying down and the air mattress has all but eliminated them!
I get her up every day even though (as you know) it's physically demanding. She sits in a big comfy chair in the kitchen where she eats and drinks and listens to soft music.
Sitting up helps to keep her lungs clear, gets her out of the bed where she hardly changes position all night. It also keeps her legs moving and helps to maintain her ability to bear her own weight. All of which are good. At this age, if I let her lie in the bed (which she would be fine with), it wouldn't be but a few days and she might not be able to stand any longer.
So I'm trying to keep her from becoming bedridden because it's easier for me and less depressing to have her sitting in the kitchen where I can move around, go out on the porch and still be nearby.
It so difficult to know what to do and I wish you peace.
It's safer to look after her in a hospital bed.
At this stage, she does not need to use her muscles.
Should you be troubling yourself over getting mom out of bed everyday , or every other day , and cleaning her up, why "settle" for only rolling her to the main rm. in the house without some aspect offered that she may enjoy ? If you have a patio, and flower gardens, etc., can she spend time w. you there, gaining some fresh air, perhaps while you enjoy your coffee in the morning? Even from the inside, is there a bird feeder and or fountain/bath to observe from a window? These are some of the more peaceful distractions , even we now enjoy at Home and make such a difference in our daily lives and quieter moments. If you live in a suburb, or rural setting, can you leave a window open and allow some fresh air in , in order to keep everyone alert and healthy ? I know all that depends on where you reside and I know how busy you must be, but enjoying the more Natural aspects of our lives, especially for the elderly, but that which has become popular again for All ages is one of the best prescriptions for healing, even if only "healing" over a long Hospice experience in your own Home.
Even while in bed, there are still tasks to be done over her care, over changing her often and cleaning bedsores, etc., so even that solution is a Catch 22.
It was an extra chore for me , among all else I do, but maintaining the bird feeder, bath, and patio plants has been a Godsend for us , and even for the rest of the family , and myself included ., but particularly for our disabled one, always struggling over a fuller recuperation.
I saw in a nicer ASL center where a relative lived , a large acquarium that everyone enjoyed and which held Everyone's attention and can become an incentive for making it out of bed everyday and down the hall. Surprising how much birds and fish , or plants, but all Living things can become the "talk of the town "!
The OP needs to maintain their loved one's dignity and keep them comfortable, while also ensuring that they look after their own wellbeing. It's easier to do that while the LO is looked after in the hospital bed.
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.)
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.
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.
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.
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 .
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.