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!

Yes its shocking - and according to PP family/friends in this suggestions are trying to use hospitals as hotels 🙄

This attitude that women (and it usually is women) should provide 24*7 care so that both the NHS and SS can abandon any responsibility is not new and its not just about money.

My godmother was told by an "assessor" that it was perfectly acceptable for her to wear adult nappies between visits (assessed as 4*15 minutes per day). She was sharp as a tack and not incontinent - she was immobile whilst waiting for surgery (for over two years at the time) and needed help getting to the loo. But it was apparently acceptable to set her up for more serious health conditions and deny her the basic dignity of using a loo.

This was in 2010 after 13 years of much more generous funding for health care. The problem was the lack of any cooperation between services and fundamentally lack of care rather than shortage of money.

That should be "24 X 7" and "4* * X 15" which seems to have mangled the formatting

There are so many posters on this thread who have had such difficult experiences and their willingness to help has resulted in an unacceptable expectation that they will provide all the care and that the level of care provided just has to be enough for the person needing the care. Everyone who has taken on caring responsibilities for relatives or friends who were unable to advocate for themselves deserves a medal.

My experience has been shorter and I think much easier than others. But I did have to say I would make a dearly loved one homeless and that will stay with me. But I did it for her and I did it for the people who have had to give their entire lives over to keeping her safe and as well cared for as possible.

OP - I hope you are working your way through this and coping. In terms of finding a care home my very limited experience is that a charity is better than a for profit home. I could have just got lucky of course.

This is exactly it.

There’s this cute image of a sweet old lady in a rocking chair happily knitting and being the typecast granny.

The sad reality is the endless piss/shit, aggression, required manual handling, sleepless nights, uncooperative and violent behaviour. It’s nobody’s fault, anyone of us could end up like this, but when someone is at that stage, they need specialist care, proper facilities to be hygienically showered in, industrial sized washing machines for the amount of laundry and a shift of carers as it’s exhausting and not something that anyone should be expected to cope with 24 hours a day without respite.

@DrJonesIpresume & @JohnPrescottsPyjamas Totally agree ; this was my experience with MIL; although in our case it was the GP & hospital Drs who were absolutely certain that DH & I should be the carers, on several admissions for a myriad of problems.
I actually found the hospital SS far more engaged and understanding, but the whole experience is extremely stressful , and adversarial.

It occurred to me that part of your problem is that she was living with you so they see it as discharging her to her home.

Thanks so much for this support.

Just back. It wasn’t too bad. The young lady I was meeting tried to do it at bedside so I asked to do it away. I think this was A meeting and not THE meeting, just sounding us out really?

She just kept trying to steer us back about how a rehab hub isn’t suitable, home is best, we just nodded and said it’s not an option. They’re monitoring her every hr now to assess her 24 hr needs (thanks to you lot, I understand where that one is heading! Ok crack on 😆)

So we’ve agreed to the next step being placing her in a assessment ‘centre’ this will take two weeks apparently and they will continue to try some therapy with her.

She looked so poorly though, I always struggled to make her take fluids, she was absolutely parched 😕 gulped 3 big glasses of water straight off. She just has a jug and glass provided, I don’t think anyone has assisted her. She sounded bunged up with cold and didn’t recognise us. She was barely conscious really.

Hoping for a swift exit for her sake

We have just been through this with my mother in law. She had developed gangrene, was in intolerable pain, on morphine and they wanted to discharge her home with 4 care visits a day. She lived alone with family dropping in.

She received her blessed release from pain last week.

We were lucky in that they were not bullying us into accepting her into any of her children’s home.

Just keep saying no. They can't force you to have her home. You're under no obligation whatsoever. Simply say you can no longer cope as a family.

I'm glad they've not tried to bully you into it.

I am sorry she seems to be struggling though. It's not nice to witness.

She sounds really unwell (I'm sorry) and at some point, unless she picks up dramatically, which seems very, very unlikely, the rehab centre idea will be shelved. It should be because places there should go to people who have some chance of benefiting from them.

I'm sure you're worn out after that @Weaktea but you did well, for her as much as anyone.

Dehydration doesn't help with dementia

Remember when they say "home is best" that your home is not her home - but it sounds like you stood firm on that.

Just wanted to say thank you to you all, who are fighting these battles to get appropriate care. Our step dad has moved into a nursing home today, for a 2 week assessment. He is sad to say not a nice man at all and has relentlessly bullied mum for decades. She is at the end of her tether and can't do what a PP said - industrial washing machines, night and day shift and turning/toileting now he is immobile.

We are just hoping he stays put as he has kept insisting he wants to come home.
This is complex as they are married so technically its half his!

Mum has been given useful advice as to what to say and the SS are aware of the coercive control DV side. She has cared for him so dilgently despite everything he has quite literally thrown at her. She does sound stronger now to advocate for her right not to be a 24/7 carer. She's 76 for god's sake with her own neglected health issues. Fingers crossed it works out for our family and for yous OP. It is not easy. Not by a long chalk.

How sad that we cannot work with social services to find the best solution for our ailing relatives. Instead we have to practically abandon them to get the help we need. Awful.

I'm so sorry to hear what your poor DM has been through. That level of care is hard enough when giving it to someone who is decent and kind.

It sounds like social services are aware of the issues but one important thing to remember is that even if he insists on going home and is determined as having capacity to do so, noone can make your mother be there when he returns.

I hope it works out.

@Uricon2 Thank you. Yes, that is what SS told her to do. I'm not sure she would be able to though, if it came to it. She feels like she'd be abandoning a dying man even though I have assured her that SS would be on it straight away as they told me obviously he's not safe on his own so they would do an emergency adult safeguarding and he would likely have to go into nursing care unless he fancies 4 x a day visits from carers - tip of iceberg.

He's always threatening about changing the will and also it would be distressing for both if she had to walk away. She knows she can stay with me or my sister.

We have talked about it a lot.

Nobody is blaming the hospitals for this. The sad truth of the matter is that many people can just about cope with caring for a relative until crisis point is reached. For many, that is when their relative has some sort of accident, such as the OP's family member's broken foot, when it then becomes apparent that it is simply no longer possible to care for the person at home afterwards, when they are discharged from hospital. Their care needs have increased to the point that the family just can't do it any more, even with carers coming in several times a day.

@vdbfamily I hear you on how hard this must be on the front line.

But the NHS use of ‘patient knows best’ is very unhelpful when the patient no longer really has capacity. The NHS messages about being cared for at home, NHS staff actually saying to the patient with a fear of going into a care home that they ‘will fight’ for them to stay in their home are what has got patient into a vicious cycle.

Doctors told us patient needs a care home. We told patient they would be safest in a care home. Hospital still discharge to independent living with visiting care - because acute needs are dealt with and a care home means funding.

I know hospitals are acute medicine.

The system is broken.

Friend's mum was a hoarder, he shared her home

Maybe this is the part of the reason

For some people I agree and for some I do not. I have a quote on the wall of our office from a judge who said" what is the point of keeping someone safe if they are miserable?" For many people, they are equally at risk of falling in a care home than in their own home.
People generally genuinely are safer at home than waiting in an acute hospital where many catch hospital acquired bugs and never make it anywhere. The best we could do is have 24 hour live in care available from as soon as someone is fit to leave hospital and their longer term needs can then be assessed at home in a familiar environment and appropriate arrangements made within a couple of weeks.
I had a dear old elderly neighbour with advanced dementia who did not want to go into a care home but was high risk at home. Her son, who she lived with was very pragmatic. She did understand the risks and was very determined to be independent at home as long as she was able.. Were had her to stay for 2 weeks whilst her family were away and although she walked with a 3 wheeled walker and really struggled on steps, she managed to independently shower and dress herself every morning. About 2 weeks later she fell down the stairs at home, broke her neck and died 2 days later. You may think this is a sad story, but she was well into her 90's, and she was clear she would prefer her end to be like this.
Our Occupational Therapy team probably have a conversation like this almost daily with patients who say they want to go home and be carried out in a box.
I think the main problem is when surviving like this depends on stressed family doing huge amounts , and in this instance family need to just be very clear what they can do reasonably. For some that is an on line shop once a week and for others it might be visiting twice a day or moving in to help care. We do not judge, but we do need families to be clear and we do need them to let their loved one be involved in the decision making even if their choice is deemed unwise. Even if they lack capacity, the best interest decision may be that they go home with care if it is known that is what their wishes were when they had capacity.
It is incredibly difficult being involved in these decisions.
We sometimes have someone wanting to go home and family insisting in care home.
We sometimes have someone wanting care home and family insisting they go home so house is not sold.
We have patient and family wanting home when we think it is not at all safe.
We have patient and family wanting care home when there is no clinical need for it and patient is independent on the ward.
We have several family members all wanting different outcomes and coming in and trying to influence patient to their way of thinking.
Family members who have y to have different visiting days so they do not meet.
We have wives/ husbands revising to have partner home because they don't want to live with them any more. We have had to send patients home with police escort to make sure they are let in the front door.
It is so frustrating to have acute hospital beds blocked whilst these battles rage.
During COVID everyone was whisked into a community bed to keep hospital beds available but so many patients then refused to leave the care homes they were sent to I think SS became a bit more cautious about that model!
Sorry OP, not wanting to derail. I have said in previous comments that if mum is living in your home, then it should be totally your decision.

I can't just read this and say nothing.

You have NO IDEA what it is like for the family of someone being discharged because they have 'medically' recovered from whatever it was they were being treated for in hospital, when the home they are being discharged into is totally inadequate for their needs. And I mean totally. Doorways too narrow for a wheelchair, no downstairs toilet facilities, no stairlift, no ramps, no handrails, no emergency call button, nowhere to put a bed downstairs, let alone the hospital-style bed with sides to stop them from trying to get out of bed in the middle of the night and ending up flat on the floor instead.

When someone had an emergency hip replacement and had a stroke while under the anaesthetic, suffers from absolute confusion as a result of the stroke, doubly incontinent and barely able to stand let alone walk, yes, they may have 'medically' recovered enough from their hip operation to be discharged from that hospital surgical ward, but in all other respects they literally cannot be looked after by family members, who might not live at that address or anywhere near it, who will have jobs, other responsibilities, their own health issues to consider.

It would be downright negligent to discharge a patient like that, and send them home without a full care package already in place, all the necessary home adaptations already in place and carers multiple times a day. Arranging all of that takes weeks, and multiple agencies.

I know all this because we went through this absolute fucking nightmare last year with our beloved relative. She was (before her tumble down the stairs) able to live entirely independently at home on her own with no assistance at all.

You have NO IDEA what it is like to be in that situation and have to try and sort all that out. We were in despair.

And no, the fact that she had to spend a fortnight in a rehab ward before she was discharged had nothing to do with money either. It sickens me to think that you actually believe that people put money before family.

You have NO IDEA.

I actually do not disagree with anything you say( other than I have no idea) and from what you describe, with a thorough OT assessment, they would look at all those issues and try and mitigat where able and if not able look at other options. Rehab is a great option for anyone with the potential to still improve and the OT and physio team will really fight for a rehab bed if we feel it would help. The rehab centres can be quite choosy about who they will have and we often have to advocate hard for our patients. I have known patients choose to be confined to one room at home because the doors are too narrow. We would always try and find something that went through the door like a shower chair or commode that is narrower than a wheelchair, but occasionally the patients themselves are too wide. It is still their choice if they have capacity and we would do all we could on discharge to make them as safe as possible, including referring to the fire brigade for a home safety review.
I am not trying to argue that it is not a tough situation all round but the focus needs to be off acute hospitals and on community resources because if we had enough care,rehab beds, discharge to assess beds and support for families, the flow through hospitals would improve, A&E wait times would decrease and more elective surgery would get done.
And patients would leave as soon as they no longer meet criteria to reside, which would keep them safer and away from ill people with communicable diseases.
I hear your story and I feel your pain, genuinely, but not everyone is like you and not every situation like yours and my staff get yelled at on a daily basis to the point of tears, often when they are going the extra mile to find an agreeable solution.
It is often the patients on the ward who are completely self caring and independently mobile and keen to get home who have family members, often living at a distance, who are yelling down the phone saying" if my mum falls and breaks her neck, I will hold you responsible"
Most elderly people are fairly high risk of falls but we cannot expect them all to live in care homes. They will still fall there.

@DrJonesIpresume Just because you care for your family, doesn't mean everyone cares for their own family. I have absolutely seen cases such as mentioned by @vdbfamily and I have been in their position trying to sort it. Even very independent people who can and should go home with family across the road, who can't even get fresh milk and bread in so the hospital sorts it. Again well and able people who's keys suddenly go missing from key safes. People who can genuinely easily go home but need a chair raising which the hospital OT will sort.....but no (local) family will be present to enable access or take over a week to being in a key.....then 2 staff have to go and wait for it to be delivered as they aren't allowed in the house on their own so wasting so much more time. Of course there are much more complex situations such as this ones...but funnily enough the staff involved are humans and so do have an idea about what is needed and going on, and do their best to show compassion whilst trying to follow the wish of the hospital trust to enable the safest discharge possible and create a bed for the next patient who may be an even worse situation. And yes...people still fall in care homes....

Just out of interest, for those posting who work for the NHS, would you be allowed to have the day off work at short notice to sit in an elderly relative's house for an unspecified period of time waiting for an OT to sort out chair raisers or take delivery of a hospital bed?

There isn't leave for this sort of thing. Many of us have exhausted all annual leave caring for our children off sick from school, as well as dealing with emergencies for an elderly relative, although thankfully it's possible to do some meetings over Zoom. If you're local, yes, you could drop some milk off in the evening after work.

@EmotionalBlackmail Like many things that depends upon your manager at the time .....but yes potentially in my case. But that's why we go out to take delivery when we really have to....and point was more those who absolutely can help, but choose not. Fair enough you live 200 miles away but you could still send a key by post. Can't be there for an access visit...could send photos etc etc. My real point is that people shouldn't be fighting against the staff necessarily....quite often they actually agree the patient shouldn't be going home yet have to engage in the process amd minimise risks as far as possible. The government has the aim of "home first" amd home is best.....it generally is to be fair, but if it isn't, there are many hops to jump through which 99.9% involves the patient trying at home with maximum package of 2 carers 4 times a day....when that fails....often unsurprisingly.....then they may consider placement. There are very very few people who are discharged direct to a residential placement from hospital. Even if you self-fund and want to go, you have to show access to potential hundreds of thousands of pounds available. If that money runs out the Social Services will reassess you-if they think that person could manage at home with carers, even if your house has bee sold, you will likely be re-housed somewhere a d removed from the care home to be in a new place with carers

Oh amd those staff in the nhs still have to take time off for their kids or dependents too....not working in a bubble......