My brother is only 50yrs old and had a huge bleed on the brain due to stroke 6 months ago. He has been left with a complete right sided paralysis so is wheelchair dependent, has no speech, incontinent and has been classed as mentally incapacitated. He can’t do anything independently. However the hospital are now saying that he has plateaued so can go home. His house has been deemed as unsuitable so he will have to wait on being allocated an adapted bungalow. He has been offered the maximum care package of 2 carers, 4 times per day, 7 days per week. However he would be going home to his partner who has MS and other health issues. She is in pain a lot of the time. My dilemma is: should my brother be returning home if his partner won’t be able to provide any care for him? The carers are only going to equate to being there for 2hrs per day. His partner won’t be able to help him transfer to his bed if he gets tired or go to the toilet. He would need to just wet himself until the carers returned. He needs 2 carers for every transfer - he is a tall and sturdy man. His partner is small and thin. I want to avoid him being transferred home but then his partner can’t cope then he has to be moved again. He is unable to tell us what his wishes are. Therefore I have applied for guardianship. The hospital says that he will never be able to be left on his own as he refuses to use a call buzzer. I know everyone would prefer to return home but for all his care needs to be met, would it be more appropriate for him to go into supported housing/care home instead? I’m in such a quandry as what the right solution should be for him. Any thoughts would be much appreciated. Thank you
Guardianship certainly sounds the best solution.
No way should he go home, they’ve already admitted that he needs care for the rest of his life.
Read up all you can about NHS Continuing Healthcare asap, free care from the NHS, not Social Services. Say he isn’t going ANYWHERE until they’ve done a CHC Assessment.
Is this more to do with freeing up a bed and staff because of Covid???
Legally he can’t be moved anywhere until a guardian is appointed. His girlfriend isn’t applying to be his guardian due to her health. She wants to move into an adapted bungalow with him though. I just think it would be too much for her. She also wants her 21yr daughter to live with them but she will just end up being both their carers which I think is unfair. The hospital have said that he can go home but they are not thinking about the ins and outs of his situation. My fear is that if his girlfriend was having a ‘bad’ day which she often has, then he would end up being neglected.
Hospitals must ensure that any discharge is SAFE!
In your situation I would write to the CEO and make a formal complaint about a potentially UNSAFE DISCHARGE. Use those words as the heading to the letter.
I did question the safety with the hospital but I was told by the Charge Nurse that there have been other patients go home with higher care needs than my brother! That’s fine if the support is available at home of a supportive capable partner and plenty family to help out. He’s not got that unfortunately. They just keep saying that he should be allowed to go home as that’s where he would prefer to be. The girlfriend is making it more difficult by pushing to get him home. I don’t know how I can possibly be his guardian if he is living with her either. My family and I don’t get on with her and I know she will try to block every decision I make. Her own family don’t speak to her either so there is no support at all. She has no friends to lean on. I think it’s just a real mess. Whatever decision I make, I’m going to get hassle for it. I just want to get it right for my brother. It’s a dilemma between what I think he would want but also to make sure that his care needs are met. I’m just not convinced home is the perfect place for him.
You need to apply for guardianship. Alternatively, Social Services could have a Best Interests meeting. First though they must do the Continuing Healthcare Assessment.
Have you talked to the Stroke Association, they may well be able to advise you?
How does the discharge nurse know what your brother would prefer, if he has lost speech and mental capacity? Putting into your head what she wants you to believe.
Pet66 - that’s what I said too. He has been classed as officially incapacitated. She said that we have to assume that he would want to go home as everyone would. Thing is, before my brother collapsed, his girlfriend expected him to care for her and financially support her as she couldn’t work due to all her health issues so lives on benefits. He can’t do that for her now so I’m not convinced that she will hang around. She has already left him before this happened. She came back to him as she needed a carer. I really believe she would prioritise her own needs over my brothers if it came to it.
Bowlingbun - yeah I’m in the process of applying for guardianship. It’s taken 3 months already and still months to go yet. I did speak to the Stroke Association - they were lovely. They were just a sounding board really as they said the situation was complex.
The nurse has no right to assume anything! The safeguarding issue of your brother are paramount, not the assumption that he would want to go home. This nurse is wrong to say everyone would. Your brother isn’t everyone and he is your concern.
I totally agree. I won’t be railroaded into anything just cos it suits them and gets him discharged from hospital sooner. I know they will push for him to go home as that’s the cheapest option. However, his needs need to be met too. Even if he is allocated an adapted bungalow, it’s not as if he can potter about in it and have any kind of independence. Wherever the carers put him, in wheelchair or bed, that’s where he’ll stay until they return a few hours later as his partner can’t move him. If he needs the toilet, she won’t be able to assist him. He can’t go out for a walk in his wheelchair as she doesn’t have the strength to push him nor can he control it himself. An electric wheelchair is too unsafe for him I have been told. She’s only going to be able to feed him and keep him company. Does this mean home is the best place?
Is the girlfriend aware that she is going to have to change his nappy, wipe the faeces off his bum, deal with contaminated laundry? Change wet bed linen? Wash it, dry it?
He’ll need a hospital bed. Is there room for that where they live?
How long would it actually take to get a disability bungalow, the waiting list for these is usually enormously long. What is he supposed to do in the meantime???
Staff will have dedicated visiting times, even four calls a day for an hour will leave him in her hands for 20 hours a day.
Maybe the key to this is making sure she understands what she will be expected to do, for the rest of his life? I suspect she will escape as fast as her legs will carry her.
Sadly, he now needs 24/7 care in a nursing home that can cope with his needs from now on.
Bowlingbun, thank you so much for talking me through this! This is exactly what I need. My head has been spinning for weeks trying to decide what is best.
Thing is, she is not capable of doing anything for him due to her health. Social Work have told her that she would have no care responsibilities as the carers coming in would do everything. All she would have to do is feed him, wash his clothes and keep him company. So if he soils or wets himself, he won’t be able to be changed until the next time the carers visit. She is pushing for them to live together as she knows if he goes to a care home, she will be made homeless as she is living in his house currently. It’s in his name only.
The only benefit of an adapted bungalow would be it would have enough room for a hospital bed and a standaid, it would be wheelchair accessible and shower accessible instead of bed baths. However he still won’t be able to move around as he is not independent with anything. SW said that another carer could come in to take him out for socialising. All he does at the moment is watch Netflix as that’s his limit. We don’t even know if he actually understands the film or whether he just likes the pictures and movements/colours!
I have refused for him to go back to his current home as its just not suitable. I don’t think it’s acceptable to eat, sleep, pee, poo and see visitors all in the one room. It’s just not fair on him. You are right, we could be waiting years on an adapted bungalow so what do we do in the meantime? I would imagine a care home would be the only option. Due to Covid though, they aren’t taking in new admissions.
Plus remind his girlfriend that she would have to be there for him every day 365 days of the year! No days off, no Bank holidays off, no weekends off.
I don’t communicate with her at all as I have no time for her. I’m hoping the SW has explained all this to her. Part of me wants her to experience what she expected my brother to do for her! However, that wouldn’t be putting my brother first. All she is thinking about is being able to keep a roof over her and her daughters heads so I think she would agree to anything as long as he could return home.
I find it helpful to write lists down on a computer file that I can shuffle round into priority order.
Make a list of what the hospital say are the minimum requirements for discharge.
Add your own list. Then do some columns for whether his current home, a disabled bungalow or a nursing home will meet those needs.
If his partner is useless, add another bedroom for a live in carer perhaps, and one for the daughter perhaps?
Wet room wheel in bathroom?
Lift if his bedroom is upstairs.
Separate laundry room? Soiled linen and food preparation don’t mix.
Who is supposed to organise any house sale, purchase and move???
It won’t be the hospital!
Does anyone currently have Power of Attorney?
Guardianship takes a very long time, even without Covid!
That’s all I can think of to kick the list off with. Others will contribute too.
Can he eat normal food?
Who pays the bills, etc for your brother’s girlfriend?
I had to go down the court of protection route for my lovely husband. They are very strict, I assure you. Girlfriend won’t be able to use any of his money. I’m not saying she does, but if… then she is in for a shock.
My brothers sick pay is paying for the mortgage meantime. Unsure how long he has left of getting sick pay though. The girlfriend has been paying for the rest of the bills from her benefits. She had all his bank cards so used them. He is now overdrawn on every account he has, even his business account.
Funny, we were thinking about doing a pros and cons list of each accommodation option. He never appointed a POA or even written a will. That’s why he needs a guardian now. It’s taking forever though.
I have thought about a live-in carer but unfortunately he doesn’t have the funds for that. I believe it’s really expensive.
He can eat normal food if it’s cut up for him. He can use his left hand. His diet is limited though as he just eats the same things.
If his girlfriend and him do end up living together again, I just don’t know how I would be able to control his finances as she should be paying half of everything but I couldn’t make her. If they get a joint tenancy, could she stop me from visiting my brother, even though I am guardian? She has already tried twice to stop the hospital from giving me information even though I am recorded as next of kin!
The house can only be sold once guardianship is appointed. That’s another reason she doesn’t want me to be guardian as she doesn’t want to be evicted if my brother goes into a care home instead.
Oh, that’s interesting. Did he know this before was deemed as not having capacity? The court of protection may have something say about that. Misuse of someone’s account. Unless he agreed for her to become 2nd account holder when he was well. Is she paying the monthly repayments on his accounts? You have such a lot on your plate.