Moving in with disabled partner

[Rebecca_1912]

My intentions are to ease his family's worries about him being alone at night,

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.

[Dusty]

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.

[sunnydisposition]

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.

[Rebecca_1912]

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.

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.

[sunnydisposition]

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.

[thara_1910]

Apologies if this has been already asked but can you use another care provider or not?

[Rebecca_1912]

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.

[bowlingbun]

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.