Mobile to bedbound

[Margaret79]

At the moment I am making the effort most days to get MIL up and dressed but she then sits in her chair and sleeps with her head dropping forward or sometimes the top of her body folded over. Would it be kinder to leave her in bed? I’m not sure what to do in her best interests.

We have to use a standing hoist to get her up and into a wheelchair to move her as walking seems to be a thing of the past most days.

OT said they only provide hospital beds to those who are bedbound and because she can be mobile some days she’s not considered bedbound.

She does have a profiling bed so I can sit her to feed her, it just doesn’t go up and down to save my back!

We’re trying to plan for the future in regards to her care. It takes an enormous effort to get her to day care (at the home that she goes for respite). They are not having any more success than we do at getting food and drink down her and she sleeps most of the day in a chair bent over. MIL doesn’t really get anything out of this now but we get 2 days off.

Wondering if we’d be better to spend the money getting carers in for some of the time but reluctant as it would mean we would be confined to barracks or would have to leave her home alone between carers visits if we wanted to go out for any length of time. What do other people do at this stage?

 

[balloo]

At the moment I am making the effort most days to get MIL up and dressed but she then sits in her chair and sleeps with her head dropping forward or sometimes the top of her body folded over. Would it be kinder to leave her in bed? I’m not sure what to do in her best interests.

We have to use a standing hoist to get her up and into a wheelchair to move her as walking seems to be a thing of the past most days.

OT said they only provide hospital beds to those who are bedbound and because she can be mobile some days she’s not considered bedbound.

She does have a profiling bed so I can sit her to feed her, it just doesn’t go up and down to save my back!

We’re trying to plan for the future in regards to her care. It takes an enormous effort to get her to day care (at the home that she goes for respite). They are not having any more success than we do at getting food and drink down her and she sleeps most of the day in a chair bent over. MIL doesn’t really get anything out of this now but we get 2 days off.

Wondering if we’d be better to spend the money getting carers in for some of the time but reluctant as it would mean we would be confined to barracks or would have to leave her home alone between carers visits if we wanted to go out for any length of time. What do other people do at this stage?

careres will only come in for 4 times for 10 mins a day if its paid for if self funding its £20 / hr were i am we had no carers in we did it our selves and were happy to do this she passed away 2 weeks ago after beening bed ridden 12 weeks and not eatting for 2 weeks

 

[Margaret79]

Thanks Balloo, she would be self funding so we'd just use the money spent on day care for carers so we get some help with personal care etc. We just wouldn't get the 2 days off that we do at the moment but we could probably have longer respite periods.

Just don't know where to go with this. Will wait and see, it will probably work itself out in the end. I just like to be one step ahead

 

[piedwarbler]

Hi Margaret,

I suppose some of it might depend on how happily Mil responds to being got up and out of bed. Thinking back to how my mum was, as she lost her mobility, she became extremely cantankerous when got out of bed, and was furious that she had been hoisted and moved, even though she wasn't on an air mattress at that point and needed the pressure relief of changing position. I came to feel it was unkind to get her out of bed, even though it was perhaps good for her physically, and in the end I felt confused about what to do for the best. She was definitely losing the muscle tone to be able to sit up well and, once slouched, would look quite uncomfy, which then made me anxious about her. So I can well understand how you might be feeling. She had one of those bucket type chairs which made things easier for a while but even then she would make it plain she wanted to be back in bed and that was definitely her preference.

And then again you should also think of your reserves of strength, because it must be demanding on you physically as well. It's such a difficult thing. Would it be possible to consider getting a rise and fall profiling bed? Mum's was profiling and rise and fall and it made caring without bending much easier. It cost about £600 but that was about five years ago so I expect they are more expensive now.

Sorry I can't say anything to help really, but thinking of you and your MiL.

 

[Margaret79]

Hi Pied, so nice to hear from you, thank you so much for your comments. How are you? xxx

 

[fizzie]

I would keep up the daycare for as long as you can. Have you had a carers assessment from social services to give you some free hours of care for yourself. You are entitled to one, just phone adult care and tell them you need a carers assessmment urgently. You are getting higher rate of attendance allowance aren't you?

I'm sorry this must be so difficult for you. I just think that you need the 2 days for as long as you can - until the balance becomes unmanageable and then your idea of carers is good plan

 

[Margaret79]

Thanks Fizzie. Had a carers assesment and got less when the rules all changed than I did before. Really not worth having

MIL has been getting higher rate AA for years so that helps. She has too much pension income to qualify for anything else.

Think you're right about the 2 days, I would really miss my freedom!