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

nightsong

In case anyone would like to know, my mother was admitted to hospital yesterday with breathing difficulties and will stay at least over the weekend for blood tests and a scan. Apparently she asked to be taken to hospital - I get the impression the home didn't think it was necessary. My intention is to tell the nursing home, where she is on a limited contract for respite, that she is not going back (once I've checked with my mother that this is what she wants, anyway - I'm pretty sure it will be though, as she hated it there).

So now, fingers crossed, she is back safely in hospital for an indefinite period and we can take our time finding a suitable placement for her.

I thought she looked very poorly when I saw her on Thursday, so am not sure what the future holds.

However, assuming she pulls through and we are back to looking at where she goes after she is discharged, I have a couple of questions if anyone can advise please -

Firstly, can I ask for her to have another assessment? The last one was only a few weeks ago but she has deteriorated markedly since then and I don't think the original findings are necessarily relevant any more.

Also a question about capacity. Is it valid for me to suggest that she may now lack capacity regarding her ability to go home? My aunt made the comment that my mother "doesn't seem to realise that she is bedridden" and she is right. My mother has a very unrealistic picture of what she will be able to achieve if she does go home. Hopefully an updated assessment would make this clear.

The social worker attached to the hospital is back at work on Monday and now she is back in the system, hopefully I can liaise with him successfully.

I can't say how relieved I am at this turn of events.

Mojisola

nightsong wrote: »

However, assuming she pulls through and we are back to looking at where she goes after she is discharged, I have a couple of questions if anyone can advise please -

Firstly, can I ask for her to have another assessment? The last one was only a few weeks ago but she has deteriorated markedly since then and I don't think the original findings are necessarily relevant any more.

Yes. My Dad had a couple of assessments before he left hospital because recurring infections affected his capability.

Also a question about capacity. Is it valid for me to suggest that she may now lack capacity regarding her ability to go home? My aunt made the comment that my mother "doesn't seem to realise that she is bedridden" and she is right. My mother has a very unrealistic picture of what she will be able to achieve if she does go home. Hopefully an updated assessment would make this clear.

The social worker attached to the hospital is back at work on Monday and now she is back in the system, hopefully I can liaise with him successfully.

Again, yes. I was able to go to the hospital for the meetings with the SW, OT, mental health nurse, ward nurse, etc so that I could say what Dad used to do at home and how he had deteriorated and would not be able to be safely left alone. I was the only one at the meetings who knew him in depth. If they asked Dad about making a cup of tea, etc, he would have said that he could do it.

I would also visit a few more care/nursing homes. We've got some local ones who come out very well in the reports but Dad would have hated being in them. He spent his last year in a lovely residential home and was much happier than he had been at home.

nightsong

Mojisola wrote: »

Again, yes. I was able to go to the hospital for the meetings with the SW, OT, mental health nurse, ward nurse, etc so that I could say what Dad used to do at home and how he had deteriorated and would not be able to be safely left alone. I was the only one at the meetings who knew him in depth. If they asked Dad about making a cup of tea, etc, he would have said that he could do it.

I would also visit a few more care/nursing homes. We've got some local ones who come out very well in the reports but Dad would have hated being in them. He spent his last year in a lovely residential home and was much happier than he had been at home.

Thank you, that's very helpful

It's wonderful to know too that you found your father a home he really liked. The one my mother has been in is expensive and also has good reports but she hated it and I can see why. I was very unimpressed with the level of care and attitude of the staff - plus they had just started major building works so the noise and disruption were awful!

I will do my utmost to find somewhere affordable that she will like, and it's encouraging to know that you found it possible to achieve this for your Dad.

whitewing

Would she go into a home nearer you? (I can't remember if we asked this before). It may reduce the pressure if it is normally you dealing with the decisions.

Mojisola

nightsong wrote: »

The one my mother has been in is expensive and also has good reports but she hated it and I can see why. I was very unimpressed with the level of care and attitude of the staff

I found a couple of the most expensive homes (which were like 5* hotels) concentrated too much on the look of the place and the cordon bleu menus, etc, where what I wanted Dad to have was good care.

He moved into a home run by a not-for-profit company and the place wasn't as posh as the more expensive homes but they spent a higher proportion of their income on staff and the difference was obvious in the day-to-day care - and it felt like home to him.

nightsong

whitewing wrote: »

Would she go into a home nearer you? (I can't remember if we asked this before). It may reduce the pressure if it is normally you dealing with the decisions.

I have considered this, but she is currently near my aunt. They are very close and I think she would miss her sister even though she would see more of me. Also she is familiar with the area, and feels at home there even if she doesn't go out and about. I have recently moved to a county she doesn't know at all.

Also as I think I mentioned, I have a severely disabled son and feel I have enough on my plate.

I would rather continue doing the organisation by phone and email.

Out of interest, I notice that you continually make suggestions that involve me taking on much more responsibility - I'm wondering why? Last year when I was asking for advice regarding my disabled son, I think you were making similar suggestions. I'm sure your remarks are kindly meant but I have to say that your posts don't help me much as they almost seem to contain some sort of agenda - like I "should" be doing more.

Mojisola

nightsong wrote: »

Also as I think I mentioned, I have a severely disabled son and feel I have enough on my plate.

I would rather continue doing the organisation by phone and email.

It's vital that carers know their limits. Trying to support a parent as well as a disabled son could easily result in you being ill and not being able to look after either of them.

It doesn't matter what other people think you should be doing - you're the one on the spot who knows how much you can cope with.

LL30

For your Mum to have an assessment, the hospital need to submit a Section 2 legal notification to the social work team - this must be done with your mother's consent and will invoke the assessment process. If you ask on the ward, they'll be able to sort it.

Just a couple of things to keep in mind:

-it's unlawful for a capacity test to be undertaken if there is no suspected impairment of the brain. So there would have to be clear evidence to suggest that there was.

-if your Mum is found to be lacking capacity about the decision of discharge destination, legally a social worker must try the least restrictive option (generally going home). If this is not praticable, and your Mum still says she wants to go home but is placed elsewhere, it is considered a DOLS - a deprivation of liberty and has to go through a legal assessment and process. It's there to safeguard people from being placed against their wishes.

Social work is a legal minefield

whitewing

nightsong wrote: »

Out of interest, I notice that you continually make suggestions that involve me taking on much more responsibility - I'm wondering why? Last year when I was asking for advice regarding my disabled son, I think you were making similar suggestions. I'm sure your remarks are kindly meant but I have to say that your posts don't help me much as they almost seem to contain some sort of agenda - like I "should" be doing more.

Firstly, I can't remember commenting on a thread about a disabled son, so anything I posted on this thread is completely outside of any other thread of yours. Yours is a userid that I don't really remember as you don't seem to frequent the same threads I do, so I have no picture built up in my mind of your circumstances.

I don't think you 'should' be doing more. I just think (given friends I know in similar situations of having elderly parents that live a long way from them) that one solution would be to have her move nearer you so that you are not having to travel so far to deal with anything, and that you could make more frequent visits that are shorter that may be easier to fit in your life. This is what my friends have done very successfully.

I don't understand why I would have an 'agenda'. I am simply commenting on a small piece of information, without pretending to know you or your circumstances, and without having looked at other threads of yours recently.

nightsong

LL30 wrote: »

For your Mum to have an assessment, the hospital need to submit a Section 2 legal notification to the social work team - this must be done with your mother's consent and will invoke the assessment process. If you ask on the ward, they'll be able to sort it.

Just a couple of things to keep in mind:

-it's unlawful for a capacity test to be undertaken if there is no suspected impairment of the brain. So there would have to be clear evidence to suggest that there was.

-if your Mum is found to be lacking capacity about the decision of discharge destination, legally a social worker must try the least restrictive option (generally going home). If this is not praticable, and your Mum still says she wants to go home but is placed elsewhere, it is considered a DOLS - a deprivation of liberty and has to go through a legal assessment and process. It's there to safeguard people from being placed against their wishes.

Social work is a legal minefield

Thank you, that's most interesting and highly relevant.

It's interesting when principles that we may hold dear, like the preservation of personal liberty even when someone is old and frail, comes into direct conflict with our desire for a loved one not to die a painful death alone if that can be prevented.

The thing is, I totally get someone with a terminal illness, say, accepting that they have limited time left and deciding they want to die at home. Sure, they might be more comfortable in hospital in some ways, but they are willing to take that risk in order to be in familiar surroundings.

But that seems different to me, from someone who hasn't come to terms with their increasing disability and thinks they can function at home just as they used to.

My mother needs someone on hand to pull her up when she slips down in her chair or bed, otherwise her already-compromised breathing becomes dangerously restricted. The only way to avoid this problem is for her to lie in bed all day, which has all kinds of other implications for her quality of life. She hasn't accepted this.

I think I just need to talk as straight as possible with my mother about my fears for her safety - or better yet, put some possible scenarios to her and ask how she thinks she might cope. And just hope that somehow my worst-case-scenario fears can be avoided without depriving her of choice.