To let my dad go home at the cost of my mum's well being?

[JustAllRoundShit]

A couple of months ago my dad (mid 80s) had a stroke. He requires full time care as he is very weak, can't get up or walk or do anything else himself. He's fully there cognitively but very apathetic in the day. Just wants to sleep all the time. When he is not sleeping he is very agitated, aggressive and very quick to anger with lots of shouting.

He is currently in a rehab home kind of thing. He seems to be slightly improving there but he absolutely hates it and wants to go home. I totally understand why. He's always been very independent and also very dominating. It must be terrible for him to be so out of control and helpless, completely at the mercy of the carers. I would hate it as well.

I think we could organise staff to look after him at home. It would take a lot of planning, lots of staff, money, etc but it's doable (we are not in the UK). The problem is it will be a massive burden on my mum. Massive responsibility, massive mental strain because he keeps yelling for her (and not very nicely) and I'm worried that she'll spend the last few years of her life (she's early 80s) being stuck by his bed, caring for him and basically just getting yelled at all the time.

I don't want that for her. She's done her bit for him her entire life (he hasn't been the best husband. Good father but very dominating, borderline abusive husband). For my mum it would be much better if he was in a home. Then she would be free. But he'd absolutely hate it. He keeps crying, begging me to let him go home. I just don't know what to do.

What would you do?

Yanbu: bring him home, while trying to set up the house so that he will trouble my mum as little as possible

Yabu: let him stay in a home and give your mum peace. She's done her bit and we can't expect her to take on this burden.

I clicked the wrong one, sorry. Your mum needs peace now.

So I'm curious how this would work in the UK. If someone needs 24h supervision and care and doesn't want to stay in a home or hospital would they just let them go home? Let's assume they do have capacity. Would they automatically become the partner's responsibility? I'm assuming no based on the posts here telling me they would prioritise their mum's well being. What if they lived on their own? Who would organise the 24h care at home?

I mean the thing is he can't even stand without being held by someone (or ideally 2 people) obviously no matter how much he wants to go home he can't go home without someone facilitating that. It's not like he can just get up and go home.

OP with the best will in the world, you need to ask the social worker involved, care home staff or your fathers GP to conduct the assessments I outlined previously to give you the answers to your questions.
It’s beyond the opinions of internet posters to ascertain what your dads appropriate placement is and what is in his best interests. You should be supported in this decision by healthcare professionals.

Capacity is not one size fits all, you can be deemed to have capacity for some things and not others. If going home would be detrimental to his safety even though he wants to they can say he lacks capacity to make that decision. Then there are two options, pre-arramged care at a level deemed to fit requirements for safety, or a home. Im in the UK and have been through this recently with a relative, it isn't easy, but sometimes the best and right choice for everyone is the one that seems hardest. Personally I think it sounds as if he will be safer and have his needs met better in a home. I also feel for your mother as she is clearly the one who will be impacted most by this.

In the UK If he has capacity to make his own decisions then his wishes have to be taken into account - see my post above re lasting power of attorney. However, if it’s considered that he is a danger to himself or others then the authorities may make the decision for him to enter full time care.

To answer your question, no one would organise 24 hour care.

He'd get 4 x 15 min visits a day (if he's lucky) and would lie in bed or be sat in a chair the rest of the time.

In your parents circumstances, your mother would be in the same house with no respite from his shouting and unhappiness. She'd likely end up insane from the relentless imprisonment.

No agency will take ownership of his overall care and health needs. It roll be an endless fight/negotiation between nhs and social services with each trying to pass the responsibility and cost onto the other.

There isn't a 'right' solution. All you can do is to help both your parents achieve the best quality of life possible with compromise from both.

I'm so sorry you're in this situation. It's one I'm very familiar with.

In the UK, if he had capacity -

there would be an assessment of his needs to determine what the options are

if going home is an option a key factor would be if he owned/was on the tenancy of the property - if not, then the person who does own/hold the tenancy would be at liberty to say they didn't want him back. This is emotionally very difficult to do, but I have seen families do it

if one of the options was going home with a care package there would be a discussion of what that involved - usually 4 visits a day, being clear what assistance he needed in between those 4 visits. Again family are at liberty to say they will be providing nothing - this is hard to do, and the patient generally doesn't believe they will do it

So assuming the patient does have capacity, owns the property, has heard and understood that family do not intend to lift a finger but still wants to go home - yes they do go home

Generally this works out very badly and they end up back in hospital shortly afterwards, hopefully having learned the hard way that it didn't work.

Unless he is considered a danger to himself or others in a home care setting. In certain circumstances the decision would be made by the authorities.

They would have to prove the person would be safe at home. The most you can get carers ( unless organised and paid privately) is 4 visits a day. If the partner is happy to be the carer the rest of the time they would go home. If the partner refuses then the social work and hospital team would have to show it was safe for the person to only have care for those periods and basically be alone for 22 hours a day. It would be very very hard to be the partner and still live in the house and not provide any care for the patient. And in the case of that relationship breaking down or becoming unsafe it is pretty much impossible to get social services to act and remove the patient, even if you are self funding carers. Believe me, I have been there. Do not do it. I had to say I was walking out for my own safety to get social workers to act, and even then hey tried not to.
Is their home physically set up for his needs? Does he need downstairs living? Is there room and level surfaces for a wheelchair if he needs it now or may in the future? Can your mother drive him places he needs/wants to go?

@JustAllRoundShit there is no 24 hour care in the home in the U.K. Not unless you pay for it privately. You get 4 quick calls a day, as they presume the person is safe and in bed confined in between. There are only a few specific conditions and short term life conditions that qualify for anything more. That level of care means a nursing home.

You do know what to do. Time your mother had a rest.

Have you actually had a conversation with your mother about what she wants?

I know someone in this exact position - can't move at all after a stroke.

They were discharged home (alone) with carers morning and evening, short visits, plus family go daily for an hour or so.

I cared for my mam over several years as her health deteriorated. It was absolutely exhausting and she was no bother at all. She had carers who went in 4 x a day, made her breakfast, lunch and tea.Helped her bath and dress, undress, get into and out of bed.
Doesn't sound like there was much for me to do- it was really stressful. I worried about her, co-ordinated and took her to all of her doctor and hospital visits, hauled her wheelchair about (I had never appreciated how cumbersome and heavy they are). Co-ordinated and took her yo all her clinics and therapy appointments. Dealt with the carers- who were late or didn't turn up regularly. She could not have done it herself- she was registered blind and had severe hearing loss. I dud her washing, ironing, changed her bed. I did all of her shopping, put her clothes in order in the wardrobe with a co-ordinated outfit for each day because she liked to look nice. I took her out for a whole day every weekend. DH called in 2 nights a week on his way home from work and I called in two nights- we lived 25+ miles away from her. When things went wrong- which they did because her heart condition was fragile and she took ill in the middle of the night, or workmen were booked to adapt her flat and didn't turn up, or a social worker made arrangements for a meeting and forgot to come or the GP decided she needed a cat scan and a blood transfusion and it was a whole day at the hospital and she couldn't go alone, or she was just scared and worried and a bit panicky and needed some company at 10pm. I just had to get on with it. I am very grateful to have had that time with her and it was a privilege to look after her but it was exhausting despite the level of care she had. To put that on your mum seems very hard to me. I think it is naive to think she will just pop upstairs and see him once or twice a day and have nothing else to do with it all.

As @Gazelda points out, part of the assessment is what care he needs and it is very unlikely to get more than 2x carers 4x a day.

For your Dad it sounds as if very few of his interventions can be done by 1 person alone.

So realistically, he isn't coming home as it's expensive to have 1 24 hour carer but extortionate to pay for 2. His needs can't be met at home.

I have had patients insisting they wanted to go home when they were taking 4 people to move them. The care package that provides 4 people on demand just doesn't exist. Very painful conversations were had until the patient accepted that they just needed more help than they were willing to acknowledge.

The doctor running the home said that he is improving in the home and should stay for a few months but then he has a financial incentive to say that. An independent psychiatrist and the in house psychologist said he would probably do better (ie recover quicker and improve physically and mentally) at home. My dad's GP (who is related to my my mum) said we wouldn't manage at home and it would be too much for my mum. There is no social worker. We are not in the UK.

I've had a similar situation. parents in their 80s in the UK. Father had two strokes recently. Now lacks capacity, personality has changed and moods are erratic. My mum wanted him home (with carers four times day), but my sister and I spoke with her and suggested she re consider, she has mobility issues and would not have been able to care for him without risk to her safety and his. Reluctantly and in consultation with medical staff (who were honest about dad's capabilities and the current and longer term effects of the strokes) my mum realised that she would not be able to manage. We helped mum consider her position, as she felt guilty making the decision herself and I don't think could take responsibility. It's complex.

Agree.

As they are not in UK we are wasting our time telling you what happens here really. You need to find out what happens in their country.
Here you would have a discharge team of OT, physio and social worker, find out who you need to speak to and discuss it with them.

Please be very open about the relationship between them and your worries about your mothers health when talking to the relevant professionals

Would you be able to get 24 hour carers? That’s what you are saying you want but is it actually possible? And affordable?

Am struggling to see how he would improve quicker at home:

He would be having far far less physio unless you were paying for it
His mood can't be predicted - he might be happy to be at home, he might be livid at home disabled he is and that going home hadn't magically made it better

The home doctor and your family GP seem to be accurately assessing the whole situation: physical, mental, social, impact on family

No, he will probably qualify for a relatively large care package. If he refuses to let them do their job then his capacity will be examined again, but realistically in the time frame he’d probably get an infection, be readmitted to hospital and die. Sounds horrible I know, but we see it a lot.

though he hasn't been a great husband he hasn't done anything to deserve a prison sentence. But how else can I protect my mum from this?

Sounds like you'd be giving your mum a prison sentence if your abusive father came home to rant and rave at her.

She can't look after him.

You say it takes two people to help him stand. It will be very hard to organise this level of care at home 24/7. Sounds like a home is the best and safest option for him - and your mum.

Has the independent psychiatrist said if he/she deems your father to have capacity to make decisions relating to his daily care needs?

There isn’t a ‘threshold’. He either has capacity or doesn’t.

Fighting and shouting will be listened to. But all he really needs is ‘No’. With capacity, the minute he says it, that’s it.

I don't envy your situation op and you do have my sympathies but increasingly this post looks like you are trying to find justification to get your dad home at the detriment to your mother.

Mentally I am sure your father would love to be home, only because he feels some measure of control verbally abusing your poor mother, who will no doubt give in to his yelling, you know she will, she has done for at least a few decades, you can't expect her to suddenly make a stand, it is unfair.