Advice to resist pressure for discharge of MIL to my home

[Weaktea]

I’ll try to be brief. I’ve cared for Mil at my home for 5 years. Now severe advanced dementia and stage 4 cancer, incontinence she’s 92. A recent fall has left her with a broken foot and she’s on day 9 in hospital.
she is now completely delirious but they have said medically fit and need to have a discharge plan. Would I have at her my house? I’ve said no. They Mentioned hospital bed downstairs, hoists and visits from carers.
she used to have a little
mobility so I could just about shower her but they don’t think she’ll regain mobility.

i was at the end of my tether anyway, they have said they will refer to social services which I welcomed.

what can I expect or push for?

thanks!

People do fall at home as well as in residential care. However my experience of a fall at home was six hours waiting for an ambulance with the relative lying in agony on the bathroom floor with no way to make her comfortable and no knowledge of how to help her and not make it worse. I have seen two falls in the care home and the person was immediately attended to by a team of carers who knew what to do with pillows, blankets etc during the long wait for an ambulance

I've been watching this thread with interest and despair.

I had my own thread for a while - "Perfect Storm" which I had deleted as I got cold feet about it being outing due to stuff going on in my personal life alongside my parents saga and I felt I'd shared far too much, far too flippantly.

Suffice to say it's not just a perfect storm - it's escalated to Armageddon, and each day is fraught with fruitless communication about my elderly SM between agencies - briefly, she was released from our local mental hospital and her section about a month ago, to the cars of my elderly father who has multiple physical health issues and is now being urgently investigated for cancer. (He has lymphoma in remission and the overall picture suggests it could have reoccurred. It's taken five months for the GP to take his multiple symptoms seriously and still he's being told it's just likely old age).

Anyway. After one week at home, SM physically assaulted him after two attempts he managed to deflect and he left fir both their safety, rendering him homeless. He's been staying with me. I'm under an eviction notice. SM is home alone running riot and being a strong independent woman under a bit if supervision from the CMHT, while they patiently tweak her medication and tell us it will all just take time. Which my Dad, who I am essentially caring for, may not have

She's turned on me after 40 years of rubbing along pretty well, so it's all very secret squirrel because if she knew he was staying with me she'd go ballistic over the phone. There are daily phone calls which I'm not allowed to record as it's against her rights but we let them come through so we can feed through what she's saying to Dad and her team can compare it with what she's saying to them because it can vary wildly.

The council are hopefully getting my Dad into assisted accommodation as I'm getting the keys to a tiny one bed out of area tomorrow. Oh yes, and the council have implied he's made himself intentionally homeless because when they asked the police about their visit on the initial weekend there was allegedly no record if it, so we had to go to the police station where a nice lady gave us the numbers to do an online request fir the report which we passed back to the council.. it goes on, and on, and on, and on and frankly, how I haven't walked under a bus I don't know.

I have zero trust or faith in anyone "in authority" in adult social care, and if one more lovely person makes sympathetic noises and does sweet FA because "capacity" I'm likely to end up a bad headline in the local rag when I finally lose mine.

I'm some respects I'm lucky. I know buzzwords and picked up the lingo when I cared for my MIL with dementia at our home a few years ago, before my DP died, which she is blissfully unaware of as she us end stage in a care home. So I get a bit of traction and recognition that I don't let things lie. What terrifies me are the numbers of people in equally hopeless and complicated situations with no end in sight as they're pushed from pillar to post round all the HCPs and agencies like irritating hot potato's.

The vast majority of families want their loved ones cared for and supported in their best interests, and a bit if communication would be a good start without all the awkward "but confidentiality prevents us" bollocks. Arse covering more like IMHO. No, there are no POAs, yes, it might be helpful, no, we're not focusing on that for Dad right now because housing and health are taking priority.

I'm really, really, sorry for ranting, but honestly, if our experience is anything to go by, eugenics by stealth is actively happening right under our noses, and it's all bloody wrong.

OP - sending love and solidarity and hoping for the best outcome for you all xxxx

It's crazy family are expected to do that. All we got was a folder about what to expect when my dad was dying of cancer at home. He died the day we were due to get carers, and a doctor didn't want to come out that morning because he didn't sound serious enough. We so badly needed professional help. His local hospice wouldn't take him (no room I think they said) and he'd been so desperate to come out of hospital we didn't want to force him back in. I think we only got carers organised because the doctor saw my brother struggling to lift him off the commode and realised we weren't managing. But as I say the help came too late anyway.

He had a district nurse but this was just to change dressings (he developed a bed sore in hospital) but he wasn't much help otherwise. We should NEVER have been put in that position, no one should. I had no idea what to do with him. And when you come to turn someone who can barely move and is in pain it's VERY difficult. It sounds like you did amazingly, please don't beat yourself up. They get bed sores in hospital, I'm sure this shouldn't happen but it does. Both my dad and nana did-and my dad's was BAD (I never saw it thank god as it was always dressed but I know it was a bad one from what they said) after he died I was paranoid about bed sores. Every time my elderly nana would be in hospital after she broke her hip or something I'd say "what are you doing to prevent bedsores?" and one time they admitted she had a mild one already that they were treating. The minute my mother becomes immobile or struggles to get out her chair she's getting professional help-I'm not taking on that responsibility and worrying I'm neglecting her in some way because I'm not a nurse. Too much can go wrong too quickly at home and then family blame themselves.

Oh and I want to ask why are they allowing/expecting family to lift/turn elderly family members when they don't allow delivery people or just anyone to do any lifting who isn't trained for that?! I remember we asked the people who delivered my dad's hospital bed to help us lift him just a bit in his chair as he was uncomfortable but they wouldn't-they're not allowed to. At the time I thought they had no empathy but of course now I know they're just not allowed to do this. We had to call my brother over to help us. I get strangers are not going to risk putting their back out for someone, but why should family be expected to do it if it's a risk to them, and to the elderly person-I don't know how to lift or turn someone correctly.

Surely this should be recognised by the professionals and not something the family has to refuse? I was incredibly naïve before my dad died, I didn't know what was involved in looking after him, completely blind-sided. I wish I had found this forum back then.

I'm so sorry to hear what happened in your case. Amen to all that you said- we went through exactly the same. Absolutely awful. I still have my mother who was very fit and strong, but now has suddenly developed memory problems and her sight is getting so bad she can barely see (Shingles damage). I am heartbroken and absolutely shitting myself as I can see what's coming, but since the days of taking care of my Dad, my brother has died in a particularly tragic accident which made the mainstream press (in his twenties), my DH is at the end of his tether after 14 years of caring for people in my family, he has made it clear he can't do this any more as he can't take it any more (I don't blame him - our lives have been hard- careers gone, savings gone)

As for "cancer care" and the supposed cancer nurses, Macmillan and the night nurses (Marie Curie) - we got zero help from them. Never saw a Marie Curie nurse. We had one visit from Macmillan nurse who told my father he was going to die and where would he like to do it? FFS. It brought him down for a while but he kept his humour and loving nature. I had to literally beg for a syringe driver when he was in his final days in hospital "too sick to move" to a hospice, even though one was arranged by me. The hospital staff were giving him morphene pills which were falling down to his pillow as they had missed his mouth. His death was the worst thing I have ever seen and the care was terrible. We all did what we could, but in the end, it was bad.

Please just say no - this is way way too much! xx

I am so so very sorry to hear what you have gone through. It's a disgrace.

My mum had pain from gallstones for months and when she had them removed, we thought that was it. A biopsy was mentioned as a sideline and none of us were that concerned. Only we were mistaken and my mum's consultant rang my sister to tell her that my mum had cancer of the gall bladder which had spread to her liver, and he was telling her within the hour. We were all more than an hour away so she was on her own.

The hospital arranged for her to see a specialist at another hospital. In the interim, my dad had died suddenly 9 days after her diagnosis. My youngest sister and I arranged to be there. Mum was brought by ambulance as the two hospitals were an hour and a half away from each other.

My sister and I got there in advance of the appointment, only to discover that someone had cancelled and the bastard consultant had brought her in on her own, in her nightdress in a wheelchair post-surgery and told her that she had 3-9 months to live. We should have complained and I wish we had but we were in total shock and blindsided by our dad's sudden death as well.

Well his prognosis proved to be correct. She waited months for chemo and it was too late when she finally got it. She was so excited to think she had a chance but in reality she never did.

She was under NHS care in hospital when she died just days short of her 63rd birthday. I believe she got the syringe driver when she needed it and her care was appropriate because we were there.

We didn't have Marie Curie or McMillan where my mum lived and I can't remember the name of the alternative but it wasn't that good.

I am forever haunted by the death of my mother even though it was relatively peaceful, and we had the support of a lovely nurse who I had sought out in panic, and had told us that the end was near, and was with me and my sister.

Such a tragedy! That consultant -what a disgrace. I'm so glad you could be with your Mum at the end and that her death was reasonably peaceful and that you found a good nurse to help you. RIP your Mum and Dad, resting in peace together. My father's death in hospital and everything leading up to it with desperately trying to care for him at home never leaves me - ever. Thank you for you message x

Yes, people still fall in care homes. But in care homes they do not stay on the floor for 14 hours, cold, frightened, dehydrated and in their own soil until someone finds them.

@Darkbutstarrynight I think I'd be classed as one of those who could help but won't!

But you don't know the backstory for these people. I've done it once for a parent with cancer, burnt out and came very close to losing my career as a result. That's why I will not do it again. I have to prioritise paying my mortgage and keeping my child housed.

And in the examples you gave for access visits - there's no way I would put a house key in the post to a random member of NHS staff. I can imagine what the insurance company would say, and the extra hassle of then dealing with getting locks changed when it gets lost. Hopefully that wouldn't be necessary as there's a keysafe.

I don't have photos of my various relatives' houses for working out access. Why would I? So that would require a special trip to do it - again, I'm not going to get time off work to do it. So it depends what I'm doing at the weekend or the next one whether I'd be able to get there.

A lot of us only get 20 days annual leave, special leave is two days when someone dies and the new carers' leave is unpaid so mostly useless during a CoL crisis.

Also I'm a little riled by the "family who don't want to care" implications in one of the posts by an NHS employee.

Is it not wating or not being able to? As the post above illustrates it's complicated.

In my own case I'm willing and able to assist in caring for my SM but she won't have me in the house. Nor will she agree to formal carers cos "capacity". We've got her neighbours on watch, but all they can do is report big concerns to us to feed back to the CMHT. Like the night SM rocked up to her friends house at midnight and announced she was going shopping. Neighbour persuaded her shops weren't open, but an hour later noticed SM was bustling about the house....with the front door wide open.

Fortunately it's a quiet neighbourhood but my blood went cold. It's OK. The CMHT have upped her meds and we think she might be sleeping now. If she's taking them.

She has the right to her independence and to make "unwise decisions". And as a result my Dad has the right to be homeless, their 40 year relationship to crash and burn completely, and I have the right to watch it all with my hands tied.

There must be thousands of similar situations playing out across the country some of which will end in tragedy, because the most basic of systems are hamstrung by bureaucracy and budgets.

Is it part of the drive back to natural selection I wonder?

Oh goodness - totally agree with everything everyone else before has said.

I absolutely get that the patient’s wishes have to be considered and it should never be assumed that they don’t have capacity - but there also has to be a realistic consideration of expectations and practicalities too.

Of course most of us want to be in our own homes when we’re in our twilight years, but quite often their complex needs cannot be met adequately there, and as so many posters have said before me, if and when something goes wrong we don’t have an emergency service that we can rely on to be there promptly. My MIL started falling regularly when living on her own. We got her one of those bracelets that detects any collapse, so even if she was unconscious an ambulance and us would automatically be called. I lost count of number of times we drove over in the middle of the night to let ourselves in to stay with her and keep her warm whilst she lay on the floor awaiting medical help, which took hours.

Unbelievably, despite all of this, because she * *wanted to go home, SS insisted her wishes were respected although it was painfully obvious that her health and welfare were at risk. Eventually, I asked her where ‘home’ was, she gave me the address of where she lived 40 years previously! It’s a common and well known thing with the elderly that when they refer to ‘home’ it’s often a place where in their memories where they were safe rather than their physical house - but the SW dealing with MIL wasn’t even aware of this.

Yes. I asked my mum about the home she was talking about wanting to go to. Sge talked about living in Glasgow, with her four siblings around. She'd left Glasgow aged 12 and was now 87, three of her siblings were dead, the other even frailer than her. But that obvious question sometimes isn't asked.

I'm not mocking her wishes, obviously she wanted to be somewhere familiar where she could be cared for. My house, 2 up 2 down with me and my son living there and both of us working full time, wasn't it. Mum didn't have a partner, how many do at that age, she had chosen to see a married man for 20 years, and he was dying anyway. It would be good if everyone could start from the premise that there aren't any good solutions and 'the best we can do for now' is often what it has to be.

@EmotionalBlackmail I absolutely get that it is not always possible and yes to you and the others above, we can only go on what we are told about situations and what is genuinely possible for families.....but ... that still doesn't mean patients can or should stay in the acute hospital.

What should happen then? There are for example 74 people in A&E needing admission, there are no carers available or won't be accepted or it isn't suitable for that patient that needs discharging, the patient doesn't want to pay for carers or placement and Social Services say they don't meet the criteria for placement. The patient isn't suitable for rehabilitation and even if they were there are fewer residential opportunities for it like community hospital beds because the emphasis has had to move to community based rehab.....which means getting thar patient home/discharged in some form.

As I have said, the staff are human but working in a system that is broken. There are some horrible situations from both sides but staff do their best is all I am saying . Most families are wonderful but some are genuinely not.

This is why my Trust funds hub beds, nursing home beds for people waiting for another form of care who can't go home yet. Not ideal but a lot better and cheaper than acute wards. I thought all Trusts were doing it?

@wintergold, so true about ‘home’ when there’s dementia - my DM went through a long phase of thinking ‘home’ was one she’d left even before WW2, and would talk of wanting to go and visit her parents (dead some 30 and 50 years) ‘because they must be getting old and could do with some help.’

I used to say I couldn’t take her today, because my car was being serviced (or any other plausible sounding excuse) - ‘but maybe we could go tomorrow?’ Which always satisfied her for the moment.

As for SWs’ and other professionals’ understanding of dementia, I’m afraid to say that even if they’ve been ‘trained’, they still don’t necessarily understand the practical realities. Hence even a GP saying, ‘If she can’t remember to take her medication, you could always write it down for her, or phone to remind her.’

As if I couldn’t have thought of anything so simple! No idea that even if she remembered to look at any written reminder, she’d have forgotten
as soon as she turned her head away - ditto the phone, forgotten as soon as the call was over.

IMO dementia training should invariably include a talk of say 15 mins on some related topic, then participants should be told to complete the specific written task they’ve just been given, in no more than 300 words.

Cue a bewildered chorus of, ‘But you haven’t given us any task!’
And the sound of pennies finally dropping.

Perhaps the poor staff could add their frustration to those of families and join with lobbying the higher ups then, instead of implying that families are obstructive at best and delusional at worst?

@MistressoftheDarkSide Think what you like as a decent human-being.....but there are actually families that are "obstructive at best and delusional at worst" Small minority but they definitely exist and often tell you that's what they are doing....there are some poor patients stuck in the middle at times which is actually the focus surely....the patient.

Stop obfuscation.

There are harrowing tales being shared here, and your pushback is avoiding the truth of the matter.

The realities of modern life mean that even fantastically involved relatives can be living hundreds of miles away and cannot simply abandon their jobs to provide a meaningful level of care. We cannot revert to some starry idea pseudo Victorian idea of local extended family rallying round to fill the numerous gaps that go with a population that lives longer with more complex needs.

In our area, all but one of the excellent community hospitals ( 6 or 7 of them) were closed, most of which had been around for 100+ years. They went a long way in backfilling rehab/assessment/EOL care/giving carers a real break/minor treatments that didn't need acute admission, all sorts of stuff. My area is not unique in this and although it's not the only reason for the current crisis, short sighted "money saving" decisions like those have contributed hugely. They were a resource that should have been expanded and built on, not annhilated.

@MistressoftheDarkSide There are 2 sides to every story but as I said you can think what you like as I have seen both sides. I agree there are harrowing stories that shouldn't exist and some staff are inappropriate and things that shouldn't happen, do. But that doesn't mean you can be so rude and ignore other things that happen. The world is not perfect- I have been on the other side of family members being inappropriately treated but still try and treat the staff with respect

Ask for hospice or nursing home care for the elderly and mentally ill (EMI)

You are not equipped, mentally, emotionally, physically or practically to deal with this

I have treated staff with respect and received little in return. I've had threats from social workers, been frozen out by PALs and had doctors sigh and eye roll to my face when repeating the same information over and over again which could actually inform and improve a situation but which hasn't been recorded or passed on to the never ending changing cast of people involved with my parents situation, and certainly not acted upon. We're entering our sixth month of absolute hell with no resolution in sight.

I'm not being rude I'm being forthright.

@PermanentTemporary I imagine most if not all trusts have those options.....ours does.....but it just moves the delay further down the system. One person in a bed elsewhere for say 2 weeks whilst care or placement sorted but in the meantime say 5 elderly people every day that need admitting soon adds up. That's why there is the pressure to discharge from acute care to discharge from hospital as the next step bed is full. Not saying it is always right, or done correctly by the way!

@MistressoftheDarkSide If staff are rude you complain complain and complain...up to Mps if needed....but not all staff are like that and they can't produce solutions from thin air when there aren't any. And I stick by the point that not all relatives are appropriate in their behaviour or language, and usually to be fair it's not in the most serious or difficult scenarios. As you will see I have given the op advice on what to ask for and to do so I am not sure what else you think I am personally able to do! If you aren't getting help I am sorry ....some trusts/departments/individuals are rubbish hence the number of enquiries going on. It doesn't mean everyone is like that so lets agree to disagree as both right in individual situations