Incapacitated Stroke Survivor ready for home

[LooneyLuna]

Hi

I am in a real quandry. I really need some advice please. My brother is 50 years old and collapsed from a stroke. He had a massive brain bleed resulting in a full right sided paralysis so is wheelchair dependent, lost all speech, incontinent, needs 2 people to do any transfers, unable to do anything independently. He is classed as incapacitated. After 6 months the hospital are now saying he is ready for discharge home. However a home assessment showed that his house is unsuitable and would need an adapted bungalow. He needs a guardian to make decisions for him due to his incapacity. I have applied but still waiting on any progress. The Social Worker told us that if his girlfriend and I could agree on him going home temporarily, then he could return home with the maximum care package of 2 carers, 4 times per day, 7 days per week. However, his girlfriend has MS and has a few other health needs. She is pushing for my brother to return home so that she can continue living in his house. She knows that if he goes into a care home, his house would be sold so she would be homeless. It's in his name only. She was also caught emptying my brothers bank accounts and he is now thousands of pounds overdrawn! My brother wouldn't understand what she has done if it was explained to him. I think everyone would want to return home and he did choose her to be his partner but should I be allowing him to go home to her? She won't be able to provide any care for him at all and he can't ever be left on his own. Or would it be a better option for him to go into supported housing so that his needs can be met? Any thoughts would be much appreciated.

[Sukindred]

I think that’s very difficult as you say and you need to make sure she can’t access his money first of all . Is there anyway you can ask him is he so incapacitated he can’t signal? Squeeze your hand look up for yes down for no ? As you say bad as she souse did choose his gf . Can he go home fora trial period the. Transfer to supported care if needed? Just hope you all get the help needed and don’t forget he should still be recovering or up to 5 years .

[LooneyLuna in reply to Sukindred]

He is so inconsistent with his answers. You can ask him the same question twice and he will give you a different answer. The Social Worker did try to explain the situation to him but was really unsure what he understood if anything. His girlfriend can't provide any care at all for him as she just isn't able. She isn't far away from needing a carer herself. They would have total reliance on the carers to do everything for him. My concern too is if he lives with her again and I am granted guardianship, she will try to block every decision I make. She has no support from anyone, her own family don't speak to her, she has no friends and my family have no time for her either. She probably won't allow me in the house to visit either just to be awkward. It's just not an ideal environment for him to try to recover in.

[moo196]

Morning, I'll look at the main questions later but in the meantime I think you could contact headway for advice and post this on that section of health unlocked. It's much more active than this one🙏

[LooneyLuna in reply to moo196]

Sorry I'm new to this. What section do I need to go to? Thanks.

[moo196 in reply to LooneyLuna]

Headway....... It has a section of it's own. If you use the search tab at the top here, it should lead you there

[LooneyLuna in reply to moo196]

OK, thank you.

[ling]

Definitely go to where care is available for your brother. Sort out the rest after what's important is taken care of.

Best wishes.

[LooneyLuna in reply to ling]

Thanks for your comment. That's the problem, I can't decide where the best place for him would be. He isn't aware of what his girlfriend did. It was explained to him but there was no level of understanding. Would I be putting him at more risk of abuse to allow him to go home to her even though he chose her to be his partner?

[ling in reply to LooneyLuna]

I think that's obvious. Given the gravity of your brother's situation, she is still thinking of herself first. Of course, she is unwell herself with no place to stay, but imagine what could happen to your brother, with someone who has stolen his money even as he lay incapacitated? Of course I have no idea the person she is, but her actions are telling.

Settle your brother's well being first, then yes, help this person your brother has chosen as his partner.

What are your options for a care home?

[LooneyLuna in reply to ling]

The hospital are recommending that he doesn't need a care home as his needs can be met at home. His current house is unsuitable though so we'd need to wait on an adapted house. That could take years though. So SW said that he'd probably need to go into a care home temporarily whilst waiting on a house. My dad is adamant that he doesn't want him to go into a care home. So he is pushing for my brother to go home to his girlfriend. Its from a purely selfish point of view though as it will be less for him to do then though as he keeps saying he won't be able to do much due to him being 76. He has said that he doesn't want the responsibility. 🙈

[ling in reply to LooneyLuna]

That's sad.

"care package of 2 carers, 4 times per day, 7 days per week."

What does 4 times per day mean?

How much say does your dad have? Considering he's not intending to help, maybe he should shut up? It's also obvious he has no idea how much work is involved in caring for someone with paralysis. It's back breaking work.

[LooneyLuna in reply to ling]

Totally agree. We've actually fallen out over it as he refused to apply for guardianship as he didn't want the responsibility but yet he still wants to dictate everything! 4 times per day would just be for 30mins to toilet my brother and transfer him to bed/chair etc. It's not enough to meet his care needs. He needs a carer with him throughout the day. He's not allowed to be on his own. My dad doesn't want a care home as he says that he has heard stories of folk being left for hours in their urine as there's not enough staff to attend to them. However, my brother could be sitting in urine for 4 hours between carers at home as his girlfriend won't be able to do anything for him. So what's the difference?

[ling in reply to LooneyLuna]

True.

Yes, 4 times a day isn't sufficient.

The covid has shown up some care homes in a very bad light. Plus as u probably know, in lockdown situations, u might not be able to visit your brother. Not sure if this could happen where u're at. But if it does, remote/virtual monitoring should be considered.

But better a care home any day where he can receive round the clock care.

As u are applying for guardianship, will the final decision not rest with u?

[LooneyLuna in reply to ling]

Yeah if I get granted guardianship, it will be my decision. His girlfriend has decided to apply now too but she hasn't started the process yet. So hopefully the Sheriff won't want to wait on her application as that would delay moving him for another 6 months. I don't think any care homes would take in new admissions at the moment anyway due to Covid. It's all a bit of a nightmare. Whatever decision I make, it's probably going to be wrong. I can't please everyone.

[ling in reply to LooneyLuna]

It won't be wrong if that decision is made for your brother's best interests.

Its not your job to please everyone.

Best wishes to you.

[LooneyLuna in reply to ling]

I'm between what my brother would want and what he needs. I want him to have some quality of life and not just exist. I am unsure though if he went back to live with his girlfriend, could I fulfil my role as his guardian as she will try to block every decision I make. At least she wouldn't have access to his money though.

[ling in reply to LooneyLuna]

Put his physical care first. That is the most difficult. Considering the rest of the stuff just confuses and complicates, and distracts from the necessary decision u have to make.

[LooneyLuna in reply to ling]

Thanks Ling. I really appreciate your time.

[ling in reply to LooneyLuna]

Thank you for sharing.

My dad suffered the same as your brother with a huge stroke that left him paralysed on the left side. I know first hand that it takes a lot of resources to care for some one bedridden with severe cognitive damage.

For the carers, it is a heavy responsibility, stressful and time consuming. What's important is to prioritise self-care, make sure you keep yourself healthy by eating well and getting as much rest as possible. No point stressing yourself till u end up sick or with some medical condition/s.

To this end, the urgency to arrange 24/7 care for your brother. If this is taken care of, u will have more resources to fight other battles that come along, and have time to live your own life when things stabilise. That's very important as well.

Best wishes always.

[LooneyLuna in reply to ling]

I dont think folk realise how hard going it is until they are in the midst of it eh!? I was a nurse for 20 years so totally get what it all involves. However I don't think my brother's girlfriend realises how intense and life changing it will be. I don't think she would last 5 mins. So what care package was put in place for your dad?

[ling in reply to LooneyLuna]

We were not able to care for him at home, so a place was arranged for him at a nursing home.

[LooneyLuna in reply to ling]

Aah OK. I think if my brother does go home initially, he will eventually need to go to supported housing or a care home.