Good evening and hello to the kind folk taking time to read this post, I thank you for that firstly.
A little background and then some advice needed if at all possible. I am moving in with my partner of 8 years who lives in an over 55s sheltered accommodation type 1 bedroom flat complex. He is 56 and it is exactly 2 years to the day that he suffered a devastating stroke resulting in emergency (blue lights to Queen’s at midnight) neurosurgery to relieve brain swelling.
It was a right side of the brain clot, so after major surgery, plenty of errors by various hospitals and a daily vigil by train to his bedside, he has his speech, memory and most of his personality intact, though paralysed down his left side, including his sight.
To say it’s been a trauma and a tough time for all concerned is an understatement. 9 months in hospital and rehab and he is now settled in a flat adjacent to the road he grew up on. We lost our house during the financial hardship of him not getting any sick pay and me doing my best to work part time after taking 2 months off when he was critical. I rented a room because I was fearful of throwing a spanner in the works regarding his benefits, plus I was terrified of being relied upon 24/7. Having to move for a third time due to a spiral in my own physical and mental health, I now know I can cope with his needs with the help of his elderly mother and 4 carer visits per day. The initial trauma has abated and I spend all of my time with him, we laugh and do what we can to go out, he has a powered wheelchair and the bus system on the doorstep is excellent. I am too young to be added to the tenancy, so I would have no recourse to the accommodation should the worse happen.
So if, kind reader, you are still with me, I can outline my concerns. He pays a tiny amount of council tax and I worry that my presence will put it back up to the standard band rate. He is on enhanced element PIP, has his housing benefit paid and is currently on contribution based ESA. I do not claim carers allowance as up to recently I was working full time. I am currently contracted to 20 hours at just over minimum wage and am considering under advice to reduce this to 15 hours.
My intentions are to ease his family’s worries about him being alone at night, as he is prone to occasional post stroke seizures and they worry about fire safety. He has a deep anxiety of not being able to use the toilet, of which my presence alone would calm his fears.
I worry about him when I leave late at night and spend all of my time with him, so it seems such a financial strain for me to rent privately if we can be together, but I don’t want to cause him any loss of money.
If anyone can help shed any light at all on these issues I’d be sincerely grateful. I know citizen’s advice is the obvious place to go, but it would be such a reassurance to hear from anyone who has found themselves in a similar position. I don’t want either of us to live alone and I don’t see why we should.
Thank you so much for taking the time to read this far down the post, apologies if I’ve missed a massive thread on this exact situation.
Love and gratitude to all the carers here, you do the hardest job in the toughest of circumstances.
Rebecca
Hi Rebecca.
Your post reads as a plea for expert help working out all the permutations attached to the benefit system … and housing.
I recommend the Citizens Advice Bureau … they will guide you through , and point out the pitfalls along the way :
https://www.citizensadvice.org.uk/
As for the actual caring , consensus will be mixed as others respond.
Three links of immediate concern for you :
HOME CARE SERVICES … what’s available , and who provides them :
https://www.carersuk.org/forum/support-and-advice/all-about-caring/home-care-services-a-guide-from-the-money-advice-service-web-site-37984
NEEDS and CARER ASSESSMENTS … through your LA :
The Care Needs Assessment Explained | Age UK
Carer's assessment | Carers UK
( I assume CHC / NHS Continuing Healthcare is NOT a factor here ??? https://www.carersuk.org/forum/support-and-advice/all-about-caring/chc-coughlan-grogan-judgements-nhs-contuing-healthcare-nhs-fnc-hospital-discharges-all-under-this-one-thread-35998 )
HOUSING … how will YOU secure the roof over your head in the event of something happening to your caree ???
Enough from me , others will be along to add their insights.
Hello and welcome!
Have you requested a needs assessment or not?
Please tell us a bit more about your cared for person. How old is he? What is his impairment, is it a physical or cognitive one?
Thank you for such a prompt response. He pays a capped amount to a council appointed care company.
We have a contact who has said she will source council accommodation once I’ve moved in, do I need to put myself on the council housing waiting list too?
He is no longer under adult social services.
I’m unsure if he/the person from the council who helped him with his applications for benefits applied for CHC.
I’m planning on being assessed for PIP for myself, as citizen’s advice thought I had a strong case when I spoke to them approx 1 year ago. When I went, we only touched upon how cohabiting and how it would affect our finances.
Your welcome.
Enjoy your next visit to the CAB … could be a long session ?
CHC ?
Hardly a job for a council employee , your gp would be a good starting point.
Has your LA washed it’s hands of providing care support ?
In law , they would be acting illegally !
Housing element ?
If not the CAB to sort out , SHELTER !
The very last thing you want to do is to move in … and then find yourself potentially homeless down the line ?
Thank you. I appreciate you for taking the time to read and reply.
I am unsure if he has had a needs assessment, unless that is also known as a FACE assessment?
He is 56 and had massive ischemic stroke 2 years ago.
Cognitively he has an attention deficit, easily distracted, will change his mind/the subject mid sentence, though he can be reasoned with, retain information, memory is intact and can interact socially. Depressive episodes, infrequent angry outbursts. Deemed competent.
Physically he has lost all use of his left side, unable to walk, transfers by a stand and not hoist however and can operate a powered wheelchair. This has proven a little dangerous at times due to his brain not allowing him to see out of his left eye, damaging himself, the wheelchair and door frames etc. He has improved with practice and was deemed able by wheelchair services. He is continent, though he has sudden urgency and has soiled when assistance has not been close to hand. He has post stroke seizures once or twice a month and is having his medication and spasticity reviewed by a Regional Rehab Northwick Park specialist, where he was being treated for 3 months early 2018.
He has to use the wheelchair to mobilise, needs 2 carers to help him shower and to ensure he takes his medication, meals when I am at work. I help him with shopping, toilet, meals, money, am the only person who takes him out via the bus service. The flat he lives in is purpose built for wheelchair access with 1 bedroom, lounge/kitchenette and wet room. It is rented through a private housing group for the over 55s and is covered fully by housing benefit.
I hope that covers your questions, let me know if I’ve missed anything and thank you again for replying.
I am as good as homeless anyway.
Will have to look in to this CHC business as I have no idea what it is.
What can the GP suggest? He has PIP, housing benefit, EHA and reduced council tax, I didn’t know there was other help/support on offer.
He was signed off by adult social care during a meeting with his then social worker and the manager of the sheltered accommodation.
Forgive me if I sound clueless, despite doing plenty of online research, I’m still in the dark about the extent of help out there, which is why I’m here.
Yes, a long session at CAB is on the cards.
Yep … take a flask and sandwiches with you ?
CHC / GP ?
A 5 star level of care … mainly medical … free if granted … who better than a qualified gp to ask ?
The very last thing you do is to jump into the unknown … and find that your landing point is worse than the one you left behind.
In any event , as soon as a change in circumstances occurs … either for the caree or the carer … the DWP MUST be notified.
Can be done online.
Without knowing what the end result will be in terms of changes to benefits / allowances , the CAB is essential.
If the outcome is … " You’ll be better off by not co-habituating " … have you a Plan B ?
__
Forgive me if I sound clueless, despite doing plenty of online research, I’m still in the dark about the extent of help out there, which is why I’m here.
That’s precisely why I posted links to outside expert advice in my first reply.
The worst case scenario would be my brother taking me in. I’m paying rent I can’t afford privately in a room I have no tenancy agreement for and have been unable to extend my stay, though I’m not happy there anyway. I have no children or pets to consider. Due to physical and mental health problems I have had to reduce my hours at work.
CAB after work tomorrow then by the look of it.
Very noble, (but not necessarily the best course of action as has already been suggested).
What are his family prepared to do to help?
His elderly mother cleans weekly and does some laundry, his father is ill. His brothers, sister and son don’t do anything. His daughter is pregnant and visits regularly, his son visits occasionally. Most of what he does or needs is down to me and his pretty unreliable care company.
I don’t really see how I can be any worse off than I am now by living with him. It’s that or renting a very cheap room I’ll spend no time in and worry about him. We’ve been together for 8 years and lost our home due to his illness.
I am going to raise a couple of practical questions, not related to benefits. (My late husband had seizures caused by a brain tumour and then a stroke, but I do recognise that your and your partner’s experience will be different, so please ignore anything which is not helpful to you.)
Firstly, has your partner been offered or assessed for an emergency pendant with a falls monitor? I know that sheltered accommodation can include a call system, but I don’t think they always include a fall detector, which can allow the carer and/or family a bit of reassurance. (In this area, Social Services provides them but I think the Occupational Therapist can also advise.)
Secondly, if it proves that the financial side would allow you to move in, have you already tried/would you consider trying a couple of nights as an experiment, before you promise to do anything permanent? I found that because I had the responsibility of responding if my husband did have a seizure I never slept well. That had an impact on my own health, but also on my ability to care during the day, so we were not able to have such a good time as we would have had, were I not providing the night-time care. (I also don’t know, because he had no choice in the matter, whether my husband slept better for knowing I was there in case of need, or worse because he was worrying about me!)
I wish you both well for the future.
When people are on housing benefit. Partners etc can stay over for several nights a week. Depending on the circumstances. Your partner needs to check his (tenancy agreement) and/or speak with the housing association. There would need to be a discussion with housing benefit. Would it not be a better idea. To stay over part/nights of the week before committing long term.
Thank you so much for your input.
He has a pendant for calling the carers on site who are obliged to attend emergencies, but have been known to put him in to bed or help in a toilet emergency, though he uses an external care company for routine visits. He’s quite fortunate in that respect.
His dependency on me was the major issue I had when he was first ill of needing to be at his beck and call day and night, but as time has gone by and nights I’ve stayed on the sofa have proven he needs no assistance at night, as he is now in a routine of waiting for the carers. I’ve always left supplies to hand, so he’s not required anything. I think it’s more of a haul heading back to my lodgings at 9 or 10pm every night and getting an SOS bathroom call in the morning when the carers are late, which is often and having to grab a taxi ASAP to help him as he gets distressed.
Luckily his seizures last only a minute or so and other than being disorientated and tired afterwards, so wouldn’t bother me. I’ve been an insomniac for at least 3 years, pre dating his stroke!
I miss him and see all sides of the brain injury behaviour. Strangely enough, he’s a more pleasant and generally calmer person than before he took ill and we get on better now than we have for a long time. Despite his utter devastation at not being able to play guitar any more, he said he’d prefer to never walk again if he could only play, we laugh, go out and make the best of a cruel situation. I admire him so greatly for his bravery and patience throughout the whole ordeal, he has far more character and substance than I ever gave him credit for. Moving in just seems like the most natural next step now he is settled and in routine, the initial trauma has been somewhat processed and I am not so concerned for my own wellbeing being so much at stake.
Very useful information and insight from someone who knows, thank you again for taking the time to share.
I very much return the well wishes for you both too.
As many with inform you on this forum. Nothing ever stays the same. Once committed it’s more difficult to walk away. Many of us here have been caring for many many years. It gets harder not easier. You age tolerance becomes more difficult. Life passes by.
Apologies if this has been already asked but can you use another care provider or not?
As the two carers that were meant to be doing 3 of his 4 calls today went AWOL, that may well be something that needs to be done. They’ve been one of the biggest headaches lately. I have done all of his care today, except for giving him a wipe over with a wet flannel and taking 30 minutes to make an omelette using every cup and bowl on the place and leaving without leaving the kitchen as they found it. 2 carers achieved that, one was 45 minutes later than her colleague so he didn’t have an option to shower as my partner must be helped by 2. They both apparently vanished until 6pm, missing all their lunch calls and delayed for tea calls and due to do the bed call. Cancelled tea and bed as I start work early in the morning and he’ll get stressed and angry if they’re very not late. Would rather do it myself for today rather than placate him/risk them being a no show again. Sigh.
Still waiting to hear back from his care coordinator regarding other important issues, another email heading her way in the morning. CQC will be the next port of call.
Personally, I think it’s vital that you don’t move in, but find somewhere that you can rent and get housing benefit for.
He is now very, very close to needing full term residential care.
Where my mum lived, in a nursing home, there was a man about the same age with similar issues, who needed full time care.
I often met his partner in the car park, she spent most of her days with him, safe in the knowledge that he was well looked after at night, so she could rest.