Elderly bedridden mother wants to go home - advice please!!!

nightsong

Hi all,

I know there is a wealth of knowledge and good counsel on this forum and I would be so very grateful if anyone could help me with this dilemma, please.

My mother is 93. She has various serious health problems- heart disease, pulmonary obstruction (she uses oxygen a lot of the time), circulation problems leading to leg ulcers, osteoporosis. She is now pretty much bed-ridden and can't bear her weight.

On the plus side (!) she has no signs of dementia and is intelligent. I don't have power of attorney because despite her physical fragility she can make her own decisions and, for example, write cheques.

She has been in hospital for most of the last three months, but desperate to go home. This was attempted a few weeks ago, with carers coming in four times a day. She lasted six hours before being in so much pain, from a carer who positioned her wrongly in her chair, that my aunt had to call and ambulance and she ended up back in hospital.

As she couldn't seemingly stay in hospital forever (and wasn't happy anyway) I arranged for her to go into a nursing home. She hates it there. She says she might as well be in hospital - and despite it being a good (and expensive) home with a fine reputation, I tend to agree. She was lucky enough to get excellent nursing care in her local hospital and I think she would be best off back there.

So, the nursing home placement is now a respite period instead. In four weeks we have to move her out. She is once more desperate to go home and coming up with all sorts of reasons why this is the best option.

I think it's insane frankly, because of her multiple physical issues and fragility, and think we should find her another nursing home. But she is adamant, and she is lucid. The social worker who has taken her case on suggests I ring the local authority and get her care package reinstated so she can go home. He has not met her of course and I think the original decision that she was fit to go home was flawed, but that is what's on her record.

I'm pretty sure this will once again end in tears and she will be back in hospital - BUT, I actually think this would be the best outcome. On the other hand it seems madness to me to help her go home when my agenda is really that she should be back in hospital. There is also risk involved - suppose she is seriously ill or dies while we wait for an ambulance for instance.

I'm not entirely sure exactly what my question is, but I hope you get the drift. It's along the lines of - would it be right for me to insist on her going to another nursing home for her own safety, given that she is so frail, but knowing that she really doesn't want to? Alternatively,would it be right to facilitate her going home, knowing that my agenda here is that I think it best for her to end up back in hospital? And if the latter, what could I do to make this as risk free as possible?

Or to put it another way, what would you do, and why?

Thanks in advance for any kind posters who can help me here.

nannytone_2

youre caught between a rock and a hard place!
obviously, as long as your mpther is mentally capable, it will be her that makes the final decisions, but i do see where you are coming from.
is she self finding in the nirsing home?
i ask because instead of the local authority sending carers is, it would be possible for her to hire her own.
she may be eligable for direct payments to help towards the cost.
that way, you dont just have to 'wait and see who turns up'. but will have regular help that you can be sure will treat your mother well and be reliable.

in your mothers position, i KNOW that i would want to be in my own home, even if i knew it wasnt possibly the best place for me.
i think you owe it to your mum to explore all the options and help available

Torry_Quine

As nannytone says only she can decide whether she goes home or into care although of course for you that is very hard. She certainly won't be kept in hospital.

I hope that you get things sorted.

whitewing

Is there any way that she could stay at yours but with her own carers?

comeandgo

My advice is support her in her decisions even if you think they are not for the best. My dad was in hospital earlier this year, desperate to get home and we were preparing the house for him but he died suddenly just days before he would have got home. I so wish we could have given him his wish.

LL30

If your Mum has capacity, and she wishes to go home, that'll be what happens.

When you say a nursing home, do you mean residential home or an actual nursing home? And is she self funding? Did the original social worker produce an assessment for her?

It's really tough for families, but we have to appreciate that older people should be allowed to take risks, as long as they can understand them. It's called an unwise decision. We all make them. And most of the time, nobody questions us on them. It just seems that when we get older, the paternalism in us shines through (don't get me wrong, I understand why) and we get all skittish about the decisions being made.

She can't live at the hospital. That won't fly. Even if she keeps going in and out, they can't legally do anything, until she doesn't have the capacity to make the decision about discharge destination herself. They will look at how they can prevent her from coming in and out - for example looking at the reasons why she comes in, and trying to deal with those.

What risks are you concerned about? Can you narrow them down a bit? What sort of behaviour does she display which makes her being at home risky? You need to think these things through and sit down with the social worker and your Mum to see how these can be minimised.

nightsong

Thank you all very much, I appreciate your input.

I also have a severely disabled son so there is no prospect of her coming here. I live several counties away from my mother so much of what I'm doing is by remote control.

Yes, I do mean a nursing home. She is bed ridden, has trouble breathing, can't bear her weight, has leg ulcers, limited vision due to cataracts, has had a catheter until yesterday and now bedpan/incontinence pads. She drinks from a sippy cup.She can't position herself in bed in such a way that she can breathe properly, and relies on a nurse/carer to put her in position.

I can't really believe that it is being suggested that she goes home - but that is what she wants so she is entitled.

I absolutely support her right to be self-determining - in theory. In practice what I am afraid of is that she will die in great pain in between the carers' visits.

whitewing

Is there a GP that she trusts who could have a realistic chat with her?

What is it about being at home that she is so desperate for?

nightsong

Oh, and the assessment was done when she was in hospital a few weeks ago. I don't know who did it exactly. It's now a new social worker who doesn't know her. I felt at the time of the assessment that the hospital was swayed by her desire to go home and their desire to get shot of her.

nightsong

whitewing wrote: »

Is there a GP that she trusts who could have a realistic chat with her?

What is it about being at home that she is so desperate for?

She now has a new GP in the home that she doesn't know. her old one might have been helpful.

It's a good question, what she is desperate for. I think she imagines autonomy, having her things around her, familiarity, watching TV and reading as she used to. Quietness. Memories.

This is where her rationality breaks down of course, as it won't be like that any more - but she won't hear it.

LL30

Sorry, I wasn't being funny - it's just that people often use the term 'nursing home' when they mean residential that's all.

Right, so did your mother have a DST (Decision Support Tool meeting - determines what nursing needs she has) for her discharge planning? It would have involved someone from continuing health care, family, your mum and social work there. That meeting determines where the funding comes from: health or a mixture of health + social, or just social, depending on her presenting needs. If she positions herself in such a way that her breathing is significantly compromised, that should have been addressed, as that is a serious concern.

I think families are often surprised about how high the thresholds are to be recommended for residential care, and indeed nursing. It is really tough for families.