to make it plain to df that if chooses to go back to his house we can help but can't run round after him constantly

[ohreallyIsee]

Had a shit month, my stepmum died just before xmas(had been in home with severe dementia for about 4 years), her funeral is this week. Df has endstage cardiac failure(surprised he's still with us) and has gone downhill a lot over last few months. He's still at home but myself and my stepbrother+sister have serious concerns about state of house and his ability to look after himself but he has been refusing all help(won't consider having carers or even a cleaner, no keys are or alert system). This week had to call an ambulance and he went into hospital, they wanted to discharge him yesterday but we've managed to persuade them to keep him til Monday.
We all think it's time for a home but we know he won't agree to that. House needs work before we're happy for him to go back(dangerous stairs, toilet not working properly, house filthy), so are we being unreasonable to say that if he insists on going back to the house we can help out but can't run round after him constantly, I work nearly full time in a stressfuljob, my stepsister has her own health problems and my stepbrother lives at the other end of the country. We're trying to get social involved but don't know if he'll co-operate

Not unreasonable, especially if he won't have anything in place to help. Male sure you are extremely clear with hospital discharge people re. what you will and will not be doing.

It's possible having to stay in hospital longer has shown him how serious his situation is, and that actually he doesn't have the control over his life he thinks he has. (Which I know is scary but unfortunately the reality for him)

So I'd be using this to an advantage by going a step further and making it a condition that he has a carer once a day and a cleaner once a week.

His options are either a nursing home or his own home with carers and cleaner, end of.

We had to do this with fil after a hospital admission.
Luckily he was able to see that it was the best out of bad options and it worked very well until he passed away.

Make very clear to the discharge coordinator what the situation is- ask for an ot assessment at his house and ask for a discharge care package. Tell them you consider it an “ unsafe discharge” with out. Care and a v high risk of readmittance.

Request an assessment organised by the hospital Opal Team and state unsafe discharge without long loud and continually. let the nurses know your concerns as from experience Drs tend to look only at medical fitness rather than the nurses who are more holistic.

They became involved with my lovely but demented MiL after she used her long term memory and knowledge of working in the NHS (consultant God help us!) to blag her way out of hospital twice.

They arranged a two week assessment bed in a care setting to discover her actual needs over what she told them she could still do. This was sold to her as ‘convalescence’ and see what you need to help you going forward. We could then state the NHS said she needed a care home as her home was no longer safe and she would keep ending up in A&E and hospital stays as a result. we promised to ensure we would work to find one she could feel at home in, close to family and friends and that they would visit her and take her out to do some of the things she loved ( whilst she still has capacity to do so)

Family used the time to locate a care home able to meet her needs with some extras to help occupy her such as a garden, art classes and daily social activity. It’s mid cost as the high cost one was too much and we used her money to create an annuity thanks to an independent financial advisor that will continue to cover her core care home costs for the rest of her life so she can stay there.

I’m so sorry you’re in this terrible situation… I can’t help or even advise, but this is a situation many of us will find ourselves in with aging relatives while trying to hold down jobs and look after children. You have my respect.

You are not unreasonable to say that to him, but be prepared - and accept - that his response to you might be that he still wants to go home.

Does his house have a toilet downstairs? Can you clean just a few rooms and get him set up in a few rooms downstairs at his home? Toilet with sink, flannel for a sink wash, kitchen for basic food, living room with TV. Then whenever you or your siblings can get there you can help him upstairs to shower?

Sometimes people in his position know exactly what state their life is in and they would still choose to be at home, alone and without help, to live out their end in their own familiar home, than be moved into a care home.

My mother is in a similar position. We have been to look at a lot of care homes together. They were all miserable dismal places that smelled weird. I do my best to support her, it’s mentally and physically exhausting but I also have a full time job so I cannot be with her full time. Still her choice is to stay at home. I respect her choice and she has to accept what I can help with. It’s far from ideal, but it’s her life, her choice.

Agree with this. Use the words “unsafe discharge” and “high risk of immediate readmission”

I thubk how this plays out can depend a bit on whether he is self funding or not. I found a distinct lack of interesting getting involved when the person was self funding

You need to make it crystal clear to the hospital that family CANNOT look after him, because this IS what they will expect to happen

It's such a difficult situation. Absolutely things need to be sorted but everyone is a bit stuck if he refuses to engage with the offers of help.
Assuming he has capacity to make his own decisions the hospital have to allow him to do so, even if unwise. By all means discuss your concerns with them and hopefully they will be able to persuade him to accept some of the things you discuss, but sadly using the term 'unsafe discharge ' as PP advised doesn't wave a magic wand and he won't be able to stay in hospital whilst long term existing problems (such as dangerous stairs) are resolved. Do you think you could sell respite in a care home as an option whilst you all sort out his property? He might then find he settles into a care setting and is happy to stay.

Best of luck OP. In my recent experience it is very difficult to get people to listen. If the hospital feels that your father is competent then they won’t do anything.

I meant if they deem he has capacity.

That's not we found when my mum broke her hip around eighteen months ago - I gues it varies from country to country and NHS Trust to NHS Trust.
.
The Occupational therapy team visited the home before she was discharged to arrange for items (e.g. toilet frame, orthopedic chair, zimmer frame, commode) to be delivered before she was discharged, and she also got a free six week Re-enablement package of carers and physiotherapists coming in.

After the six weeks was up the local Social Services team arranged for a new set of carers to continue to visit; although she is self-funding it is arranged and we pay for it via the council.

No — you’re not being unreasonable. I've been there.
You’re being realistic, compassionate, and responsible. You can offer support, but you are not obliged to sacrifice your own health, jobs, or lives to prop up an unsafe situation he’s refusing to change. If he has capacity, he’s allowed to make risky choices — but you’re allowed to set limits.
Next steps:

• Push for hospital social services before discharge
• Be clear and united: “We can help with X, but we can’t provide 24/7 care.”
• If he refuses help, that’s his decision — not your failure.

You’re doing the hard, adult thing in a brutal month.

Ask the hospital in front of df what care package to expect.. Tell df in their presence you absolutely won't be able to provide him with any sort of care...
They need to make provisions or keep him.

Shit situation, repeated up and down the country x1000.

i would ask hospital to add to his records that he lives alone and does not have access to a working toilet or stair free access to washing facilities. And that despite him saying that family will help, family have jobs and responsibilities that make this not a good solution.

On the other hand, he may not have long to live - this coupled with entering a care home could literally kill him (ie he gives up).

You can use whatever form of words you wish but he appears to have capacity to make his own decisions and as such the hospital cannot prevent him choosing to return to his own home. They can offer him a care package (dream on if you think there will be an OT home assessment) but if he declines it that is at his own risk. They certainly will not keep him in an acute hospital bed whilst renovations are made to his property on an open ended time scale. If that’s what needs to happen he would need to go to a care placement in the interim.

This is a very difficult position op.
I do sympathise.
At the end of the day it will be your df decision. The hospital staff will not override this.
Make it very clear to him that you will not be going round to help him every day. That he will be alone, and have to sort himself out several times a week.
He might agree to pay for carers once he realises the reality of the situation.
Having been through this, it is a nightmare op.
Maybe it depends upon the NHS trust, but I also found that anyone who is self funding is let down. You are charged an extortionate amount of money for very little.
Might be different if you get everything for free.
What you need to remember is that, like another poster said, some people prefer to he at home, whatever the circumstances.

Cross posted with ThePure
Yep, your df is a capable adult. Once he is medically fit he will be discharged. It isn’t up to family to decide this. Staff will speak to him and go with whatever decision he makes. This was my experience despite my relative being unable to do things such as bath themselves, go to the toilet unaided etc.
Again, maybe those who get things for free have a different experience.

Please no one think that forcing the hospital to keep him for an extra 4 days is a win. Those over 75 years of age lose 10% of their muscle mass and mobility PER DAY in hospital.

Not having the conversation with our elderly parents about their plans as they enter frailty and old age with dignity is absolutely screwing the NHS. In its busiest week of the year there have been all between 10-20% of beds occupied by people with no medical need to be there. This poor SF was one of them.

It’s no one’s fault and this is not a flame but I can’t walk past this post without asking all those with elderly parents not to leave it to social services or the hospital ward team to have the conversation. They can’t do anything without the family.

good luck OP.

I wouldn’t even ‘help’. It’s too ambiguous a term to say you’ll ‘help’. Theyll take your hand off. Step right back, say you will be staying right away, doing nothing at all and force a crisis. As long as you are propping up the situation little will change.

he has been refusing all help

Do you mean he refuses help from you?

Or he refuses to pay for help?

Having been a discharge facilitator I have to say if he has full capacity you a) can’t keep him in hospital against his will b) his choice is his choice and yes that could end in a crisis but make sure he is aware of the risks/consequences and fully understands them c) you HAVE to stand by what your saying and don’t give in as hard as it may be.
Sadly for individuals that have full capacity to make a a decision even if it’s what we/you class as unwise they have the right to do this and often people do infact have to reach crisis or it be a failed discharge for them to understand what care and support they really need.

Wishing you and your DF all the best xxx

From my experience, if they deem him to have capacity (and the bar is very very low when they deem they don’t) there is very little you can do ☹️

There doesn’t appear to be any reason for them to doubt his capacity. He doesn’t have dementia. There is a presumption of capacity in the Mental
Capacity Act principles unless there is evidence of a disorder of his mind or brain.