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

Errata

Her breathing is the crux of the matter so I will focus on that.

I think that would be wise. The important questions are:
What happens 5 minutes after carers have left and mum slips down the bed and her breathing is compromised
What happens during the night - a period of say 10 hours - if mum slips down the bed and her breathing is compromised.

LL30

Agreed, getting to the bottom of the breathing issue has to be priority. The ward should be keeping detailed notes on how often this is happening, and if this was my case, I would be expecting for her to score at least a 'B' in breathing. I think you need to ask the social worker to explore this in depth, because if it is regular and life threatening, I would be asking to go straight to a DST.

pmlindyloo

My heart goes out to you having experienced a very similar scenario to you.

My mum died a few weeks ago having been in a nursing home for nearly two years.

The whole thing caused me endless stress to the point that I had to give myself a good talking to and having done my very best for her decided that there was only so much I could do and in the end what would be would be.

For the sake of your own health you need to take that step back. You are now armed with all the facts.

There is no doubt going to be some rough times ahead but you will cope. Hopefully you will have the support of your aunt at the assessment to put your points of view across.

From what you say a nursing home is the best place for your mum. The brutal truth is that care in the home and even care in a nursing home is not perfect. The nursing home option means that your mum is safe and medically well looked after.

It may be that you have to let her go home for a time until she realises that it will not work. Until she realises this there is not much you can do. I found that people other than the family stand more chance of persuading her of this.

She is scared and longs for something that is just not possible. My mum thought she could get out of her wheelchair and walk (hadn't walked for 3 years). They live in the past.

It is an horrendous time but be assured that you are doing as much as you can.

Like you, my mum was a very self centred person. All her life she was interested in no-one but herself. She was not interested in her children, grandchildren or great grand children. People gave up visiting her because she was so difficult. She refused to be hoisted and spent most of her last years bedridden. I tried everything to make her life more interesting.

I felt sad, guilty and very worn out. Yes, I loved her because she was my mum but coped in the end by seeing her as a very old person who I was trying to help - I became a carer rather than her daughter just so that I could switch off rather than live with it 24 hours a day.

When she died I did not cry. I just felt this overwhelming sense of relief that it was all over. It went on for years - a very needy woman all her life.

I am sad that my mum was never really my mum and sad for what she could have been.

Life can be very cruel.

nightsong

Thank you again everyone.

pmlindyloo. I have tears in my eyes after reading what you wrote. Yes, I think our experiences have many similarities. I feel for you. Thank you for writing all that, it helps so much to know that others have been in similar situations.

How sad this all is.

sleepless_saver

Have just read through this moving thread which brings back a lot of memories.

I wanted to say that I am not so sure that the mother is being irrational in wanting to be at home. She may just have very different priorities from the OP who is primarily concerned about her comfort and safety. Mother is 93 and in poor health with life threatening breathing problems. She may well feel that the time she has left is limited, and would prefer to be in her own familiar home surroundings when the time comes. Most people do want to die at home rather than in hospital or in a home. Of course there are risks to this but she may well have thought about them especially as she has already been readmitted from home once due to pain caused by poor care. And she may consider those risks and a possibly shorter life a price worth paying.

elsien

People have the right to make bad or unwise choices. And that can be hard for relatives to watch them getting into a state because of the choices they have made. My grandmother made some (in my opinion) truly awful choices towards the end of her life that I found really hard to stand back from. In the end I just had to tell myself that I had done everything I possibly could to make life better for her and if she chose an alternative path that was both her right and her responsibility. And she had to live (or not) with the consequences. And part of that was that she was tired, she'd had very little quality of life and she'd just had enough. In her position I'm pretty sure I'd have felt the same. But I wasn't in her position and I hated seeing the situation she chose to be in and felt very guilty that it was happening and that I should have been doing more.
Trite though it sounds, once you've jumped through all the hoops, made sure that capacity is properly assessed and got all the help that it is possible for her to have, then there is little else you can do. Except try not to beat yourself up about things you don't have option to change. You can only do what you can do, no more.

Indie_Kid

You also have to consider your own health too. No good caring for someone if you can't look after yourself properly. I have a friend whose wife was in a care home until her death earlier this year. She had dementia and he's disabled too and couldn't give her the care she needed. He'd go and visit her and stay with her every Saturday evening.

DevilsAdvocate1

LL30 wrote: »

I guess what the law does is put the person at the centre of the decision making. This admittedly does have pros and cons, but historically there was a lean towards a paternalistic 'you're old/disabled/have mental health issues, we want to keep you safe and we know better than you' attitude, which resulted in a gross abuse of people's liberty. The Mental Capacity Act is not without it's flaws, but is explicit that capacity must be assumed unless it is proved otherwise and that we all have the choice to make unwise decisions, so long as we can weigh up the risks of those decisions.

I understand how difficult this is for families, I work with it everyday, and it's not always easy for professionals either, but I am a firm believer in supporting choice and encouraging positive risk taking. Ultimately families are (usually) driven by love, and a desire to protect, which is a natural instinct, but sometimes the individual's right to autonomy can be compromised by this. The Act serves to try and safeguard against this, and makes an emotive decision a legal one.

I think having an open conversation with your Mother about your fears and feelings is a brave, but wonderful idea. I wish you luck x

I am really glad the law is that the elderly person can make their own decisions as long as they have the capacity to do so. There was a couple in my town a few years ago who were separated because it was deemed that the husband needed to be in a care home but the wife didn't. This sounds plain cruel to me, separating a couple who have lived together for over 60 years. Neither were in a position to drive and so could only see each other when someone was prepared to take the wife to visit (she had mobility issues). An article was in the paper because they wanted to be together - either in a care home or at their own home. I don't know what the outcome was.

This whole thread is interesting as I know it won't be long before I'm in this position. My mum is 84 and my dad is 75. For now, they are managing fine. Mum walks with a stick and uses a wheelchair if we going to be out for more than an hour or two. Dad is starting to worry about driving but feels that his independence will be gone when he stops.

This getting old lark is not good.

To the OP - I hope you mum is okay.

nightsong

A quick update for anyone who might be interested -

My mother is currently still in hospital and doing ok. I think they have sorted out the dehydration caused by a mere two days in the nursing home. She's had tests and a scan so presumably the results of those are being evaluated. They don't tell relatives (or even patients) much about what's going on, do they?

When I spoke to her last she said her sister had told her she couldn't go home because she was no longer mobile. I said it was her life and her decision. She seemed a bit taken aback by that concept!!

This thread has been SO helpful to me, not just for the emotional support but for helping me to understand the legal position and to clarify my thinking.

I have always been a big supporter of people's rights to determine how they live so it's a bit of a shock to me to realise how far down the road I'd gone, in trying to get my mother to do something she didn't want (i.e. go into a nursing home) principally so that my aunt and I could feel more comfortable/less worried/less responsible.

To be fair, some of this is undoubtedly caused by HER trying to manipulate ME. She thinks I should be doing more somehow, and this is a good game to play. After all I'm sure the hospital must have told her that it's her decision - the social worker I spoke to was certainly very clear on that point.

I think she does need to appreciate though that if she does go home, my 92 year old aunt is not keen to go on supporting her the way she has. I don't know how she will come to understand this. It's remarkably difficult to talk about these things with very elderly ladies who were brought up with a strong sense of duty, a masochistic sense of a woman's place in society and no experience of talking about their feelings!

Anyway, for now I shall try and keep out of it while saying in touch and visiting her in the hospital. I still feel that the longer she's there, the better, but I know a choice will have to be made sooner or later. That is to say, SHE will have to make a choice - not me or my aunt!

Any further thoughts anyone has about all this will be gratefully received.

Thanks again all posters here, you are stars

Errata

Hydration: elderly people often lose a lot of the sense of being thirsty so they don't drink properly and become dehydrated. Whether in a care home or in their own home, they can't be forced to drink and need hospital admission to sort it out. It gets sorted out and the cycle starts again.
I've read through your posts but can't see anything about a capacity assessment being carried out by a doctor? Has one been done? If it has but not recently then an up to date capacity assessment would be useful.