Carers after a stroke

[Melmi256]

I’ll try to keep it short
my husbands mum has a history of complex health issues including cancer.
she had a stroke 4 months ago and currently in rehab , she can’t walk need helps with personal hygiene but can talk use arms , they have suggested looking to release her with carers 4x per day.
we live abroad so cannot support with care.
will this be enough 30 mins 4 x per day ? What happens is she needs toilet in between ? Who does shopping and cleaning - she is relatively young 64 and therefore doesn’t want a care home but I’m assuming more or longer carers she would have to self fund ?
she doesn’t have much in way of income 500 per month private pension , 18k savings but a valuable home.
what will happen if this care isn’t enough ?

Also to be clear this isn’t about us be worried about protecting any inheritance for her home ! Clear that if needed care home this would have to through sale of property. But if she doesn’t want a care home (apparently has capacity to decide this) then how can she physically get more care at home if can’t afford. I’m no expert but cannot see how she can live at home in her current state.

She has below the savings threshold (£26.5k) so she needs a social worker for a financial and needs assessment, they will says CHC checklist will need to be completed, but I'm not sure she will be eligible from what you've said as no primary health need indicated only care needs so social services will foot the bill until her house can be sold and then they'll take back what she owes! I would suggest she needs a care home rather than home on her own X

Can she get extra care and use value in her home to offset it ? I really cannot see her agreeing to a care home given she is fairly young in real terms and they said as she has capacity it will likely be her choice (in fact she doesn’t even want carers but was clearly told there is no way she could go home without this as a minimum )

4 times a day is generally the maximum care package you can get at home. Anything above that you'd be sourcing and paying for privately. I doubt very much a private carer or agency would agree to payment at a later date when her house is sold.

Shopping and cleaning (other than kitchen and bathroom hygiene) doesn't fall under personal care so will be her and her husband's responsibility to organise.

The hospital should be doing assessment to make sure she and her husband and any available wider family can manage between them in between carer visits. If they really can't manage then they'll try to persuade her to look at a care home but ultimately some people just have to go home and try it for themselves.

She is very young for a care home, where many residents will have varying degrees of dementia

Has she applied for attendance allowance - this could be used to pay for more help eg cleaners?

Even if she is assessed as needing a care home she can refuse. LAare highly unlikely to find more than 4 visits. If she can use her arms she may be able to get herself onto a toilet/commode from a wheelchair, otherwise she will be reliant on pads. She may be able to do an equity release to raise funds .
You don't mention a FIL so I'm assuming she lives alone. She may find that once she is home it's too hard and change her mind. She might be like my FIL was and think if she is stubborn enough the world will bend to her will.

I echo what the other pp have said.
However, a diagnosis of stroke doesn’t mean she will always be at this level and should hopefully be on the stroke pathway for at home rehabilitation. If it’s available in your area.

Private cleaner.
Online shopping.
Pads for toileting.
People do live like this if they refuse a care home, it can be pretty grim.
Ex district nurse.

The most important thing long-term is to make sure that she is getting physio. I would say that that is really worth spending money on if state provision isn't enough. It will be worth its weight in gold if she can recover more now.
Short-term, apply for Attendance Allowance. If she gets it, it will help cover some extra support.
4x carers per day is the maximum so if more is needed or wanted she'll have to pay. Personally I think it's worth doing. Like the physio, it's a long-term gain if she can regain independence now with the right help. Better that than falling at the first hurdle and having no choice but a care home.
There should be an OT assessment done too and she should be provided with equipment to assist her. Again though, if it's not enough, it's worth paying for anything that would help.
Basically because she's so young, it's worth taking a longer term view.

@countrygirl99 yes she lives alone has done for many years. Even things like having a wheelchair and getting around in her house I’m not sure the space is big enough - I just can’t envisage how home is possible. She was struggling before the stroke but was mobile at least.

@SeriouslyAgain she is getting physio In rehab - I appreciate all you are saying but how if she doesn’t have funds ? How much is attendance allowance per week ? Is it easy to claim

@KinKenKon there is no husband. We live abroad so cannot help. There is a sibling but lives hours away with other life responsibilities so anything popping in more then once a week is not practical- there is no one else.

@Sunnnybunny72 yes it sounds grim !

we tried to get her have a cleaner before this all happened as she just wasn’t doing it herself but she refused to pay - very tight with her money. Even stuff like online shopping how does it get unpacked ? She’s not capable

@Cozytoesandtoast00 yes I appreciate it may improve however there were problems before this happened. No walking properly, dragging feet and shuffling - falls ( unsure if related to previous brain surgery many years ago - complex health history as I said ) or a series of what we think were mini strokes. We saw this coming , but not great before so I can’t see (I’m no expert though ) a huge improvement happening

Tough one. She's just going to have to find things out the hard way by the sound of it. If she has capacity she is allowed to make unwise decisions but the hardest thing is to step back knowing what the fall out is likely to be.

Hi Sorry I thought you'd said she had some savings.
Attendance Allowance is £68 per wk I think which would be enough for (just for example) a cleaner or a bit of extra care. Applications are taking 12 weeks so best to apply ASAP.
An OT assessment will be funded and is usually sorted via the hospital just before discharge (in my experience anyway). They will then provide (again, for free) necessary equipment. It is worth chasing this as it can be the difference between some independence and none at all.
Re getting to the toilet, if she can't manage in between carer visits, there is probably a continence service (there is where I am but I know areas vary) which will provide pads for free.
Best of luck. It's a very stressful thing to have to deal with.

@SeriouslyAgain sorry you’re right she does have savings ! I was more thinking along lines of if she refused to touch the savings but only from her monthly income (tried before getting her to have cleaner etc but refused to pay ! ) although I’m not clear on her finances I think she uses the savings and transfer some over to monthly living costs anyway.
i suggest to my husband she claims attendance allowance it will help towards something thanks

This is an awful situation and many people find themselves in it.

There are no good answers. Any cash just drains away.

I am going to put it really bluntly, I've been through it.

She will really really struggle.
Online shopping is quite variable - some will bring it in, some will refuse to deliver if the immobile person can't get to the door (even when the instructions say to leave it on doorstep).
If you need the toilet between care visits, you shit yourself.
Everyone who comes deals with their own "responsibility" and nothing else. So loads of stuff slips through, the property gets dirty, messy, crowded with equipment and generally a soul destroying place.
The person ends up isolated and desperate
The family end up struggling (we were more than 100 miles away, kids, work, dog etc)

She needs to get out of that property ASAP and buy an little apartment in a place such as this: (it's 60+ so she qualifies). You get your own apartment and facilities but there are communal facilities and help - eg dining place and critically, some company. It's not a nursing home. It's a place where she'd be able to manage.

I'm not specifically recommending this place. It's just an example. It was too late for FIL. He lived in the house haunted by mil's death and struggled (didn't want to move out). Ultimately he died as a direct result of living alone.

Retirement Housing With Care | Extra-Care Properties For Sale & Rent | MHA

IIRC the form that FIL had to do for attendance allowance was bloody ridiculous, like 50 pages or something stupid like that. Way beyond him.

Also, the carers thing for 4 x per day was not allowed in his area. It was 3 x per day max.

Just want to say as she’s 64 it would be personal independence payment she applies for as she’s under the state retirement age. The care element is the same as for attendance allowance but there is also the possibility of a mobility element. She sounds like she would qualify but the form is long and needs completing in full detail and there is usually an assessment before it is awarded. Citizens advice can help with the form but they cannot do home visits. Age uk may be able to it depends where your mil is. Are you sure she isn’t already getting it if she has been disabled for a while? If you google citizens advice they have a good website that will explain it all in more detail. It is not means tested.

@Klcak thank for you for your honest reply it’s brutal but what I was expecting and that’s why I’m trying to see what other support there is - very little it would seem. The suggestion of the retirement living complex does seem like a good in between choice , but helping her sell a home while we are 3000 miles away seems impossible and that’s if she agreed which I think is highly u likely :( @Thistooshallpsss no she doesn’t claim anything we tried to get her last time she had a fall for someone to help with cleaning but she refused saying she’d be made to pay it all back - she’s difficult. I’m guessing the forms can’t be done online by us for her ? Know way she can complete them herself

Age UK might be able to help. They came out to ILs and sorted out what they could claim and helped fill in the forms but it's very area dependent. They also put them in touch with an advocate who helped talk to social services. Where mum lives their services are much more limited and there is a also lot less they can put people in touch with.

It’s repetitive but relatively straightforward. AgeUK will help

I’m guessing the forms can’t be done online by us for her. Either do it for her and explain why she can’t claim, or do it for her and send her the relevant sheets to claim. Try not to let her see the whole thing as you’ll have to be honest about her abilities, and it’s not good for the self esteem

https://www.gov.uk/government/publications/attendance-allowance-claim-form

@MereDintofPandiculation ok thanks - we will try in a quick review though I’m not sure we will have the level of detail to answer a lot of these questions.
no idea what her ni number is , her gp , medication , previous dr visits etc we haven’t seen her in person for over 2 years. So we know her symptoms and currently disability from the stroke but the actual detail and history’s with dates we do not

I think the key people here are the occupational therapist and the social worker, with the 0hysio a close third. Try ringing them, and if they can't talk to you, ask them to talk to her about giving permission for you to talk through the options.

What goals have the therapists set? Do they think they are realistic?

Does the occupational therapist have a goal for her to be able to clean herself on the toilet, and to get her clothes off and on when going to the loo? How about showering?

Does the physio have a goal for independent transfers from wheelchair to toilet?