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In a desperately sad situation .....what would you do? - Page 2 - Carers UK Forum

In a desperately sad situation .....what would you do?

Tell us a bit about yourself here.
Might I suggest that you think about, and then write down, what mum needs, and what you need yourself. For example

If mum is using a wheelchair, which of the following can she do without you:-
Get in and out of bed?
Get to the toilet by herself, transfer fromt the wheelchair to the toilet, get her pants down, wipe her bottom, pull up her pants, get back onto the chair and back into her living room or bedroom?
Have a bath or shower?
Cook a meal and wash up?
Open and shut the front door?

It was the loss of her ability to walk, albeit with a Zimmer frame, that led to my own mum moving into a care home earlier this year, because she needed more care than even a team of carers coming into the house four times a day could provide.

It is a fact that the very elderly, defined as 85+, become very self focussed, often oblivious to the needs of those around them. This is the time when the relationship changes, parents become, in some ways, child like, and their children "parent" them. It took counselling for me to accept the changing relationship between mum and me. I'd never said "No" to mum, that wasn't how I was brought up.

Whatever your relationship in the past, this is the time for you to take control, gently but firmly. Clearly the rest of the family have opted out - so did both my own brothers, you are not alone in this happening. Putting aside what mum wants this is the way it looks to me.

First, you have to decide if, under any circumstances, mum is going to ever be able to live alone? If she can't even get to the loo by herself, then the answer to that is No, unless she has a live in carer, or is prepared to wear incontinence pads at night. Is that viable in her current flat? No, because it's only got one bedroom. So she has to move.

Mum couldn't organise moving to a two bed flat, even if one was available, so the only option left is either a nursing home, or a care home. A care home may not take her if she can't use the toilet by herself - this is probably the deciding factor.

I would therefore suggest that you looked at your local authority website. MY LA has a map of all care and nursing homes in the county, together with whether they have a vacancy. Before visiting, be aware that if mum has over about £23,000 she will be classed as "self funding", unless various things apply. My mum is in the nearest care home to me, so I can pop in whenever I want. Are they good homes? Look at the Care Quality Commission website, who will have a copy of their last report. Not faultless, but better than nothing. Feel free to disagree with anything I've said above, it's your mum, your situation. But once you start looking at NEEDS not wants, it becomes a lot easier to make the hardest decision of all. There is no other practical option left, apart from residential care.
Incidentally, as mum is both elderly and disabled, she counts as a "vulnerable adult". Social Services have a duty to protect vulnerable adults, at the extreme I understand they could be removed to a "place of safety". So they were not, in my own opinion, being entirely truthful when saying they couldn't do anything without mum agreeing. They are just trying to avoid paying for her residential care, I suspect!!
Hello and a heart felt thank you to everyone who's posted on this thread with your messages of support. It's made me feel much better and it's liberating to be able to speak to people who really kjnow what it's like. There's been really helpful points and it's amazing how you all really understand my situation.

@bowlingbun re your first reply....it's very good point yoiu made that my mum shouldn't have been discharged when she was.....I'm sorry I didn't it clear but my mum actually deteriorated a couple of months after discharge....she initially could walk a tiny bit with a zimmerframe but now she needs a wheelchair .....however I was actually angry that medical staff in hospital didn't advise me to expect this deterioration given my mum's history of arthritis in her knee...surely they would have known.

Also a social worker visited only the other day to discuss how they could support me as a carer....I was looking to be granted respite stays actually....anyway he mentioned how if my mum did agree to having outside carers come in they wouldn't be able to supply any carers to be attend at night ....and my mum does require me to care for her at night too.....essentially and I see you've written this bowlingbun but I wanted to ask that if I did actually say to Social Services I was leaving on a certain date in the future...would they indeed provide some kind of safe environment for my mum?

Many thanks again to you all
Social Services have a "duty of care" which they cannot avoid. I'm afraid you are going to have a difficult few weeks, so be prepared. However, it is possible that there is an advocacy service of some sort in your area. In my County what used to be called the "Princess Royal Trust for Carers" provided an advocate for me during a series of meetings with SSD. Most of all I wanted an independent witness, as there was a history of SSD saying one thing and doing another. It's going to be so much easier if you can find someone on your side. Is mum's GP involved? Ask him to arrange an URGENT Continuing Healthcare Assessment. Don't delay, with Christmas coming up quickly everything will grind to a halt for two weeks, in my experience. Why not give them 14 days to sort something out? He might consider it appropriate to readmit mum - so go and see him as soon as possible. He GP's have more clout with SSD than relatives, generally speaking. He might ask them to arrange emergency respite care. On occasion, there have been people on the forum who have had enough who have rung the ambulance service and there has been immediate admission to hospital or respite. Every case is different, so this is just a range of options you might want to consider. Maybe you have a different GP? Again, he might be able to support you get mum into care? Maybe he can arrange counselling for you? One thing is for certain, you must not under any circumstances see yourself as a failure. Clearly mum needs 24/7 support and her circumstances mean that is simply not available at home. In the meantime, think about what mum will need to take with her, make sure a bag is available, plus several changes of clothes, a toilet bag etc. It was a very sad day for me when a little voice in my head said, on the way back from my own mum's house "I just can't do this any more". Mum took a few weeks to settle into the nursing home, but it was the right thing to do. I can visit whenever I want, the staff are friendly, and I can go back to having a mother/daughter relationship, after years of feeling like a "dogsbody". Take care.
I'd endorse BB's kind words and sound advice.
We carers are all a bit like the proverbial frog that is put into a pot with the heat gradually turning up, and the key is to spot the trend and know when to jump out - which is - basically - yesterday!
With elderly parents (and I have them both still alive in their nineties, living independently, and supporting each other with a lot of paid support organised by my siblings collectively) there are a range of options and these will depend on changing circumstances. None of these options is exactly perfect, and change is difficult but sometimes inevitable.
I don't know how we judge 'success' or 'failure' but retaining our sanity and health is vital whatever happens, because even in a Home, our parents will still need us to visit and ensure they are being properly cared for. It is a lot less stressful being a paid carer on an 8 hour shift than being a single carer stuck in a tiny flat with one parent, and most of us start to crack up in this pressure cooker situation in a few months or years, which isn't healthy or safe.
Absolutely. Could I just add that I was one of those who has "jumped out" or rather told Social Services at the time of mum's last hospital admission that I was not prepared to care any more, and that if there were further hospital admissions, I would hold them legally responsible. It was a horrible time and I felt dreadful. However, suddenly, it was determined that mum required nursing care and that a nursing home was the way forward.

I still care of course in that I visit her, worry over her, do all the paperwork / hospital appointments etc but I am beginning to get some of my life / health back.

Incidentally mum has a better quality of life in my opinion in the home than in her own home. As a single carer, I could not tend to her every hour of the day without being physically exhausted myself. The carers in the home do 8 hr shifts and are therefore rested when they come to work. It is not perfect but, in my opinion, a home is NOT failure; you simply have to acknowledge that you have reached / passed your limits.

I wish you luck as it is most certainly not easy. I would suggest that you start to research (and even visit if possible) homes in your area so that you have an idea of what is available.
Yes, in a decent nursing home it is possible to enjoy a bit of dignity and independence, without feeling that you are a burden on your relatives. My fil spent the last four years of his life living at the BLESMA home in Crieff for service amputees, and it was generally a well run and caring home for all the veterans, in lovely grounds, where he received first class care.
My father in Law, Alex RIP
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Social services will try and call your bluff about stopping caring for your mum and will want you to continue. But you are sleeping on the floor! That cant continue. If it is your flat, then mum will have to move out and if it is your mums flat then you will have to move out - its as simple as that. If (and only if) you decide that you want to continue caring for her - with care workers coming in during the day - then you will both need to move to a 2 bedroom flat and your mum must go into respite while you are organising it.
I am in the same position as Anne. Mum wanted to come and live with me and begged me to promise her that she wouldnt go into a home. I was already caring for my hubby who has an acquired brain injury and it was just not possible so, although I felt awful, I made no such promise and she is now in a care home. I agree with Anne and BB, although mum took a while to settle it was only a short time and she is much better looked after than I could do.
BBs advice re an advocate is a good one.
As well as agreeing wholeheartedly with all the posts here - especially on the issue that family relatives have NO legal responsibility to take any care whatsoever of their elderly parents (a point completely ignored in the recent news coverage of Bournemouth hospital threatening families with fines and being sued if they don't take dischargeable elderly folk out of hospital to discourage bed-blocking!).

Of course SS will try and solve their own problems by getting YOU to do all the caring! As the others here are urging, you'll have to stand your ground and call their bluff. You'll doubtless feel immense 'guilt' etc etc, but you have to think in the long term. What you've been able to cope with (just!) is NOT what can be sustained day after day, week after week, month after month, and very possibly year after year....

One thought about your mum being in a care home - I've done the same with my MIL (Sadly, she hasn't settled at all - but I also suspect that that is for my benefit if you see what I mean!)(as in, the house manager tells me she is much 'better' when I'm not hovering over her!)......

But just because you cannot cope with your mother every day, you may well be able to cope with, say, having her over to stay with you for the weekends, or even just Sunday night - I do this with MIL - she's on the sofa beside me as I speak, and then we'll set off back to her Home (She'll give the usual 'I hate it there!' plea, to which all I can say is what is all that I can say - that there is, right now, no where else where she can be looked after as she now needs to be)(she can do 'nothing' for herself anymore - on her own she'd be like leaving a two year old in house alone!).

It's not ideal for her (or me) but it does give her an 'outing' - that said, it's arguable that taking them out for weekends can just be 'cruel' as they are reminded of their' old lives' and yearn to be looked after by their families again...not understanding that that is impossible without their families being utterly ground down with exhaustion and despair.

I hope armed with all our encouragement you wll be able t make plans for your mum that achieve something that sees her well looked after, and you with enough of your life back not to make it totally dedicated to your mother.

You mention your unhelpful brother - you may find him useful to bulwark you against the SS (and possibly your mum, too??
Just a thought. What does mum think about you sleeping on the floor? Is she aware of how difficult it is? She should be very concerned for your well being. Has she had a recent mental capacity assessment. Normally I would hesitate to suggest this, but it's really important that wherever she goes from now will be able to cope with all eventualities, so that she never has to move again, causing both of you additional stress. In the old days there used to be strict definitions of a "care" home and a "nursing home". Now, many homes can provide both, but some may not accept dementia patients.