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My Mom is 88, and is palliative with colon cancer and liver cancer. She has some vascular dementia, which mostly just affects short term memory, but also some cognitive impairment. The cancer has only just started to cause occasional pain (in the liver area), and in general just seems to make her very, very tired. She sleeps a lot. She has lost some weight, but is still a big lady - maybe 230lbs.


She lives in a private retirement home in their AL wing. As part of that, we have access to 90 min of PSW help/day. In addition to that, we have someone with her 24/7. I am here 4 days a week, my brother 1 day, and government-provided PSWs cover 2 days. We pay PSWs to stay with her overnight to help her.


My Mom's world and capabilities have reduced to just moving between bed (a hospital bed), chair (a 3 position geri chair), and commode. These transfers are getting more and more difficult. We use a walker of course, and I recently added a transfer disc that we get her standing on, which helps to make the pivot easier. However she can't really bear much of her weight. I used to be able to do these transfers with just me helping her, but now I need to press the call button and get the AL PSW to assist. Even so, with two of us, sometimes it can be difficult. She has had a catheter for about 6 weeks and that certainly helps a lot, but even just going to the commode for BMs can mean a lot of transfers.


The retirement home has a strict no-lift policy - they require their residents (even in the AL wing) to be weight bearing. So we have been put on notice here - that the PSWs will not and cannot help to lift my Mom.


The government program would, I think, provide a Hoyer lift, but the retirement home will not allow it.


The retirement home is ok with her staying here, but only if she is either weight bearing, or else bed bound.


My Mom does not understand/remember much of what is happening. If she feels she needs to use the toilet, she would believe she could do so independently (and would try to) if we were not here to slow her down, get the helpers in place, grab her walker, etc. When I tell her that I need to get someone else to help us with the transfers she is incredulous and says I am ridiculous.


When we have been in the hospital previously, and she had to use diapers and get changed in bed, she found the process of rolling, and the wiping and clean up, very difficult - painful, an affront to her dignity, awful. She would cry out while we had her on her side "I can't do this! you have to stop!". So as you can imagine, I have not been in a rush to be in a diaper situation permanently.


But it feels like we should try to keep her in bed - see if she can tolerate it. See if we can find a routine that makes diaper changes less uncomfortable. That will mean she can stay here, which is a place that she and we like, and which is familiar. It will mean that our backs, and the PSWs', will be less at risk. I haven't injured myself (yet), but my back is low grade sore/tired all the time.


If we can't make her comfortable and content in bed, and she can't bear her weight, then we will have to move. And it seems like she still has a few months to live - so I am getting feedback that we may not be able to get her into a palliative care unit yet. So I don't know what will happen if we can't stay here - but I will figure that out if/when we get there.


For now, I want to try keeping her in bed, and see if this is viable.


I know she isn't going to like it. Even though we have talked it through, multiple times, she won't remember.


I plan to angle the bed so she has the best view of TV and window. I am going to get some nice sheets that will hopefully make the bed feel like a lovelier place to hang out.


Has anyone else had to do something similar? Any thoughts and suggestions are appreciated.

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Well, I ended up getting a call on Friday afternoon that a bed was a available in a PCU (palliative care unit) and so we moved Mom yesterday and are now trying to get her settled in the hospital. It is a challenging transition - leaving her AL home, where she had all of her furniture and pretty things around her. But we will make it OK.

At least here there is a lift, she will be able to get up, and there is the right kind of staff to keep her healthy and comfortable.
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Trying, you say "some people are bedridden for years" - wherever did you get that idea? It is true that there are people living with family who are completely bedridden, but very few are in that condition for years. My mother could do nothing more than stand/pivot/transfer for at least a year before I reluctantly sought out long term care after she could no longer do even that. True, she spent much of her day in bed because she was most comfortable there, but I got her up for meals, to toilet and shower and to just sit in her wheelchair for part of the day. Now that mom is in the nursing home she is only in bed for one nap in the afternoon, nobody is allowed to remain in bed unless they are sick or until they are actively dying.
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I’m so sorry for you and your mom. My husband is bedridden and fully aware of his situation, but content to stay in bed 24/7.

I’m sure your mom doesn’t want to give up her last vestige of independence by allowing herself use adult incontinence briefs ( please don’t refer to them as diapers to her face). I know from changing my husband that it’s far from an easy job. My husband is over 300 lbs and it’s only me doing all the work. My back spasms regularly.

Does the facility where your mother resides have a higher level of care? She could “move” but still stay in the same area and people she knows (staff) could visit her. Perhaps in another unit, you would be allowed to use a Hoyer. Staff needs to be trained on using those, but there are toileting slings. Just in case you do need to move her, have some idea in mind of where she will need to go to avoid a “last minute rush”.

Keeping her bedridden when she doesnt want want to be will be very difficult on all of you, but if she becomes less weight bearing, a walker isn’t ideal for preventing falls. And, without having formal training on how to do patient lifting, you do run the risk of doing yourself real harm.
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trying42 Jul 27, 2018
hey Ahmijoy, thanks for the reply. There is no higher level of care here. It seems that either a nursing home is the right place if she wants and needs to get out of bed, and is not weight bearing. They will indeed have the training and equipment to make that possible. But I have been told that we may have trouble getting into one, since my Mom is palliative. It sort of seems that we are in a gap - not yet ill enough to be in bed all the time, and not still well enough to stay where we are.

I am exploring both the NH and PCU options. But in the meantime, I figured we should try the "staying in bed" idea and see if it works out.

Oh and yes, I always refer to the diaper, brief, Depends, whatever as "underwear" when talking with my Mom. But thanks for mentioning that too.
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IDK, I really dislike the idea of forcing her to become bedridden, aside from negatively impacting her quality of life there is the potential for pressure sores. You mention the AL wing - does this facility also have a nursing home wing? And if so, why would you not start the process to move her there, or to a different NH? I get that you want to keep her in a familiar place but confining her to bed kind of cancels out that benefit, and the level of care available in a NH, both PSWs and nursing staff, is much greater.
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trying42 Jul 27, 2018
Hi cwillie, I agree, I dislike the idea of pushing her to do anything that she doesn't want to do, and I am exploring both the NH and PCU options. In the meantime, however, it seems like it will be better and safer all around if she stays in bed (while still here).

We were going to try it today - experimentally - and see how it goes, but she didn't want to go to her bed last night - so the experiment is not going so well as of yet, lol.

Trust me, I am not anxious to squelch her independence, or make her do something she doesn't want to do...

I also worry about pressure sores etc. But then I also think - some people are bed ridden for years, and she is likely going to be there for 2 months - so we can hopefully keep her healthy and comfortable.
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