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!

I have found that if you complain even the tiniest bit in the most measured and polite way, it is just met with cold dismissal.

I am sure you are doing your very best from your own position and perspective.

It doesn't detect from the broader point that the best interests of patients are not being fully explored and those expected and / or willing to care for them, proactively who ask for help and guidance from the professionals under legal obligation to safeguard the vulnerable are routinely ignored and left floundering.

Official complaints so great in number that they cannot even be processed should be a great klaxon that urgent review of the systems are required.

We can agree to disagree indeed.

And from a previous encounter with "the system," I came away with a joke that will no doubt offend but frankly I've been driven past the point of caring.

"What's the difference between God and a doctor?" ........

"God doesn't think he's a doctor."

And on that admittedly sour note, I'm off to emotionally support my Dad while packing up my house to move. Because no other fuckers going to do it.

no carers available

YES, things have been bad for years and thats why the Covid vaccine mandate was fucking insanity.

The lack of NHS workers posting on the recent Carers Allowance threads and the slow pace those threads moved compared to the NHS ones tells you all you need to know!

I am so sorry. I know a couple of families who had bad experiences with Macmillan.

My friend told Macmillan to stay away from them, they found the Macmillan nurse so upsetting when her husband was dying. Marie Curie was more helpful.

My experience of staff with dad (90s, frail, heart failure among along list of co- morbidities, nearly blind and very deaf) was appalling. One of the classics was when he was in for a couple of days following a fall. It was during covid so we couldn't visit. Brother was called to collect him at 10.30pm. When he got there he discovered that dad's shoes had been lost and he had wet himself because no one had given him a bottle while he was. Took 40 minutrs to get to the hospital then had a long wIt for his new meds to be issue in a&e. No one had bothered to tell DB so he had to take him him home in the wee hours in dry but pissy pants and trousers and other shoes. That's just one example among many of appalling treatment.

No other shoes that should say. Barefoot and stinking of piss. Fine way to treat someonewho fought for his country.

@countrygirl99 we’re now terrified to collect on discharge after similar experiences. If family are coming then it’s assumed family will take responsibility for everything else - including collecting medication and reinstating community nursing - which is a nightmare when discharge is late or on a Friday/Saturday/Sunday (or god forbid a bank holiday). Patient is just left sat in a chair waiting for rescue and often needs something sorting before leaving.

Plus it beggars belief that the ward the patient has been in for several days don’t seem to know their needs - such as they’re incontinent and community NHS services are visiting daily, as well as carers. Yet the hospital social worker hung their decision to discharge (against doctor’s advice) on the ward saying patient is doing well.

Keeping the patient out of the care home (that they don’t want but really need) actually takes lots of multi-agency support and regular paramedic visits. There is pressure on all parts of the NHS to maintain the unsustainable.

I’m afraid becoming a ‘refuse to help’ relative feels like the only option and I’m very sad about how it might make the actual patient feel but as they’ve often forgotten what happened an hour/day/week ago we have to hold our line and not be a part of what are becoming clearly unsafe (and likely to fail) discharges.

And I don’t mean to derail the OP’s thread - have been in the discharge to my house conversation too. No.

Thanks for your lovely comment. I agree about Macmillan - I have heard others say the same - "keep them away" and then I found out the hard way the reasons why. When my dad was in his last days at home then in hospital, I hoped there would be a Marie Curie nurse for him at night sometimes - but nothing. In the past like an idiot I fundraised for Macmillan. But when the neglect of my Dad in the hospital became untenable, I went to the Macmillan public centre by the main hospital entrance to ask for help. The three people said they couldn't help us in any way but to give us "leaflets". Pathetic.

I’m sorry that you and your family were let down.

I’ve stopped contributing to MacMillan.

Me too. My eyes have been opened. Many organisations - especially big charities and government bodies - and don't actually exist for the people they purport to - not at all.

I know exactly how you feel and how it affects you in the long-term. It's a horrible responsibility to carry, and not our fault at all! I'm so sorry you have to live with that and didn't get the help you needed. I have so many what ifs as well, just thinking how it was always going to be bad but a lot of the suffering was needless.

I'm sorry you didn't have a good Macmillan nurse, sounds like she had a shocking lack of empathy. The one we had was very good I have to say-her and the lady who ran a trial my dad was supposed to get on (but sadly never met the criteria) were the only ones I would say were helpful, empathetic, did their job and cared. His oncologist was terrible. Unfortunately our Macmillan nurse either moved areas or went on holiday just before my dad died and I don't think we got anyone else. We were devastated to lose her, she really did go above and beyond for us. This was over 10 years ago now-I hope she is still working for them as she was a real credit to the job. The fact we got left without one right when we probably needed one the most was hard though. Think we ended up having to ring a doctor when he was in so much pain but she said there was nothing she could give him! The doctors just wash their hands as well.

They do seem very reluctant to administer pain relief don't they? You really advocated for your dad and should be proud. I regret not doing that more. I'm determined to have everything planned and put in place for when my mum needs it (I know it'll be down to me) she's very fit but think she might be in the first stages of dementia which is worrying. Hard to tell if it's just age-related forgetfulness or something more sinister! Sorry to hear about your mum, and your brother gosh you really have been through so much I really hope you and your DH have an easier time from now on. I definitely understand the worry, and just thinking "I can't actually go through this again".

Your dad sounds like he was a lovely gent. Mine was good natured too despite the horrible ordeal he went through. Just wish he could've got into hospice. Although I have no experience of hospice to know what it's like, I assume it's probably best case scenario. I hope people are at least getting cared for properly in there. Things really need to change in a big way everywhere else.

I felt awful too because we had to resort to refusing to help.

MIL was discharged back to her house with a live-in carer in place - as I posted up thread - but it was so inappropriate for her as it was painfully obvious she needed nursing care for her more complex needs but SS insisted if she wanted to go home, that’s what would happen. MIL was incontinent, physically frail, would regularly collapse without warning and would get up and wander at night as she was losing concept of night and day. The carer was a lovely young woman but she herself couldn’t cope, she was exhausted within days as MIL kept her up night and day.

As we expected, things started to unravel immediately. The carer was at the end of her tether and kept ringing us for help. We had to be tough and tell her that as it wasn’t working, she needed to tell the agency that employed her just how bad things were and that they also had a duty of care to her as an employee too as she was under huge pressure. The agency weren’t bothered as long as MIL coughed up the £7k each month. It was horrible because it goes against all your instincts to step in, but we had to do it to get someone to appreciate how bad things were.

Eventually, just by luck, we got a SW who did listen and understood and could see that the situation was ridiculous and could not continue. We found an excellent CH and MIL was actually much happier there because not only were her physical needs being met but she has mixed company, entertainment and activities rather than just being sat in front of her own TV on all day.

So sorry to hear the lack of help in all these stories - this is where Mumsnet is invaluable because we share our stories.

I came back to share that you have to stay on your guard against social workers.

Against Doctors advice DF has been discharged with visiting care. SW had Doctors report and before seeing DF casually asked family what was in place before. When she heard DF had 4 carers plus nurses every day and family help where we can (and we specified this was still not enough to prevent crisis after crisis) SW then recommended a discharge package of 2 carers 4 times a day and said DF begged to go home.

Having obtained some notes, somehow the Doctors’ concerns about capacity have been diluted to ‘advance decision’ and another capacity assessment was fine on day of discharge. There are lies in DF’s notes that family wanted DF to stay as independent as possible.

SW undermined what the Doctors and family said to DF about a care home being the right next step. DF didn’t even remember meeting SW let alone begging.

It's a good reminder that you need to both put your concerns in writing and demand to see them reflected in the notes.

But you shouldn't have to be worrying about and doing that when the whole situation is already so stressful

The free care that people are legally entitled to if they need ongoing care in rehab when being discharged. In some areas this is for up to 6 weeks if you qualify.

It is not the patient's fault if they end up 'bed blocking' because there is nowhere for them to be transferred to for that rehab.

I now ask to see what notes have been written down at these times - bad experience with midwives lying and covering their backs when I had my baby so I no longer trust medical professionals, SWs etc to write down accurate notes!

My word this is terrible. Do you have any idea what your next step is?

@wiffles right now the next step has to be finding a nursing home place for DF in readiness for whatever crisis occurs. But SW has ruined any chance of DF going willingly.

Goah some of these stories! I’m so sorry for what some of you are going through.
A little update from me. MIL is still in hospital and still immobile though no longer quite so delirious. The therapist called again on Thursday asking to see us Friday to show how they are manoeuvring her so “I know how to do it when she comes home”, I rolled my eyes and said nothing had been agreed but that we’d meet as planned.
she was completely uncooperative with them so they tried to speak about plans at her bedside. I said I wanted to discuss in private with them and was quite firm that she could not come
home. To be fair, they were quite agreed. I said she needs residential care and I thought the ball was already rolling because I’d made it clear previou . They said that hadn’t been passed on but they’d NOW refer to SS.
its at least two weeks just to assign the social worker.
So that’s where we’re at. She’s a lovely good natured MIL but she’s so unhappy and distressed. It’s very upsetting

I'm sorry that you're all going through this Weaktea.

So she’s in a general ward now for rehab/asessment, but of course about 90% are very old people with late stage dementia. It’s really awful, so sad. Many are just wondering around crying out for their mums. This needs a government policy. If there was a right to die policy once certain circumstances are met, I’d sign up now. The staff are wonderful.

@Weaktea thanks for updating and sorry you’re still having to fight. I’m glad the staff are wonderful.

Beware of social workers, I can’t stress that enough - with their ‘home first’ BS and additional last minute ‘capacity assessment’ deeming capacity for ‘consent to discharge’ and ‘the family agreed’ lies. Hold firm because it is best for MIL and for you all.