So distressed - probably only need a hand hold as nothing anyone can do to help

[Ilovepastafortea]

For context DH & me have been together since I was 17 - married for more than 40 years. We have 3 grown up children & 7 GC. He's 72 & retired, I'm 63 & work 3 days a week.

On 20/11/25 DH went into hospital for an op on his left hand-Dupretin's Contracture surgery which involved amputation of his left little finger & straightening his middle fingers. While in hospital he had a stroke & then developed sepsis in the hand that had been operated on. He now has very little use of his left hand & is, frankly, in agony with the pain from the op. He's seen his GP who's prescribed Gabapentin, Codeine, Naxprophen & sleeping tablets.

DH was the main housekeeper & cook. But as he can no longer manage zips & buttons, & his balance has been affected, he needs me to help dress him, help in in & out of bed, I have to do all cooking & housework I even have to help him in the loo as he can't reach to wipe his bum without falling off the loo. Then I have to help him pull up his trousers. I've bought him some elasticated waisted trousers, but he can't manage to pull them up with only one good hand & then over balances when he tries. I've said that once it gets to 20/5/26 I will be able to claim Attendance Allowance for him as he needs to have been this disabled for at least 6 months & 20/5/26 will be the 6 month anniversary of his initial op. I'm thinking that I will then reduce my working hours so that I can claim Carer's Allowance.

In the meantime I feel rather stuck. He can't drive anymore even our automatic car as his left hand is useless & it's not safe for him to drive one handed. So I have to drive him to & from appointments, drive to get his meds etc. We live in a rural area & it's a PITA to drive into the city, find parking, pay for parking etc (in the city centre you even have to pay for disabled bays). I spent all of yesterday driving him to the doctors, driving him home, waited for a bit, then back into the city to have to wait for an hour at Boots for his prescription because it being Gabapentin (which apparently is an opiate) needed to be authorised by a second pharmacist who was at lunch. In the meantime I'm worried that he's going to need the loo & I won't be there to help him get dressed afterwards, or maybe he might have fallen & hurt himself - which did happen. So then I had to drive back into the city to wait at A&E to get his head injury checked out.

Oh I forgot to mention that I have a serious spinal injury & arthritis so I use crutches around the house & usually a wheelchair when outdoors.

But the worst thing is that I don't dare cuddle him. In bed I shy away from him keeping firmly to my part of the bed as I'm afraid that I will touch his left hand & hurt him. Even though we're an older couple, we used to regularly 'express our love in a physical way', but no longer & I miss the intimacy.

And if her DH has capacity and refuses to allow access to support services there isn’t much OP or anyone else can do about it.

Thank you - this is it exactly. He doesn't want me to talk to our DD about it.

PP have suggested that she could help us. She has a busy job in NHS & her husband is a postman. They have 2 DCs aged 11 & 9 who have busy social lives - they don't need to have to worry about DH & me. When DH & me had children we decided that they were our children & would never ask them to look after each other when younger or us as we got older. We cared for my MIL & both of my parents. Would rather pay for someone to help us than ask that of my DCs.

I would like to thank everyone for their support & helpful advice. I have work for the next 3 days, as well as major dental surgery on Thursday, so please forgive me if I disappear.

I just wanted to thank you all for your input. It's made me feel less alone.

If your DH is amenable, you can self refer to Social Services for a care assessment for him, and a carers assessment for yourself to see how they can support you. It can also be done via your GP.

A care assessment will look at the overall amount of care your DH needs throughout the day and can arrange for carers to visit up to four times a day if necessary. The care is means tested according to his income. The carers assessment looks at how you cope as a caregiver and what support you need. Being disabled yourself, I would think this is a priority - you need as much support as you can get, especially if your DH doesn’t want anyone else involved in his direct care.

You can also ask for an OT assessment of the home environment. Simple aids and adaptations to make things easier may be available free, but for more expensive or complicated work you can apply for a disabled facilities grant. Again this is means tested.

Thank you for your help with this.

However, my experience of caring for my parents was quite the opposite of this. My mother had a stroke aged 58 which meant that she pretty-much lost the use of her left hand. She was left handed. My father had Parkinsons & then developed dementia. He became incontinent, used to wander (a policeman once brought him home on a rainy November day when he was found in the street wearing nothing but his 'nappy' & a pair of socks. We were mystified about how he got the socks on as he'd needed help with socks for at least 10 years. So (at my suggestion) my mother then had to mortice lock all doors at all times & distribute keys on lanyards to overnight guests. The keys were kept in her bedroom where my father couldn't get to them.

OTs etc were useless. They brought in a commode. My mother invited them to tie their dominant hand behind their back & show her how they would empty it. They failed at the first hurdle which was first you need to use the surgical gloves that we've brought.

They brought a wheelchair, my mother pointed out that, with only one good hand, the best she could do would be to push my father around in circles. They suggested that her daughter may be able to push her father around - I was sitting there in my wheelchair at the time & we made a joke about having tandem wheelchairs.

They said my mother's little dog was a trip hazard & how he was a health hazard as he was allowed in the kitchen. What was she supposed to do - re-home the dog who my father loved dearly?!

The only practical thing that the Local Authority Carers service offered was a voucher for a massage, but no-one to care for my father while my mother took advantage of it. They constantly said 'can't your daughter do it or can't a neighbour do it?' My mother would point out that her daughter (me) worked full-time & also had a significant disability.

I arranged & paid for a cleaner to go in for a couple of hours every week, I also visited every morning & evening to help get daddy up & then into bed. But I was only living 20 minute's walk away from them so wasn't a problem for me.

I have no confidence that, even if DH agreed, anyone will be able to offer any practical help. We're on our own.

edited for spelling

Luckily we live in a bungalow with an adapted shower (it has a fold down seat, hand holds, non-slip floor etc) so DH is fine to shower, except I need to get in there with him to hep him wash as his left arm is pretty useless to him ATM.

My DH is a stubborn so & so, will not allow me to 'burden' our DCs with our problems & I get that & support him. Though I have pointed out how frustrated he used to get with his mother & my parents when they insisted everything as fine when it obviously wasn't.

@Ilovepastafortea

I'm sorry. Your experiences strike a chord with me.

After Mum's last hospital visit, the Home Care Manager informed me that Mum had to have a hospital bed (although the carers said it wasn't needed - Mum was very light). Ergo, I had to remove her small double.

I asked whether the men delivering the bed would help me carry the small double into the garage. She looked at me as if I were insane: "Oh, no!"

I then asked "Are you aware that my husband is a stroke victim and can't help me?"

"No..." (She should have been aware, since DH was known to social services.)

I explained that I needed help to move the bed. Her response: "There must be someone."

"I have no children and no siblings."

"Ask a neighbour."

"The lad across the road has spinal cancer. My next-door neighbour has dementia. I'm the youngest one in the neighbourhood."

"There must be someone. You need to have it out before the new bed is delivered."

In the end, I hauled off the headboard and footboard and carried them out separately. I put a bit of wood from the garage over the outside steps.

I wrapped the mattress in plastic and hauled it out and to the garage. I did the same with the bed. To this day, I don't know how I managed.

Three men arrived with the new bed in pieces and assembled it in 10 minutes and left.

I get you had a thoroughly underwhelming experience with OTs previously, but it’s probably worth another go.

As you’re obviously aware of, when can find the right adjustments they can make the world of difference. As with every other profession, individuals range from exceptionally good to exceptionally bad.

So meets with my experiences. Bloody useless. I feel for you.

The social care services are overwhelmed.

My Mum would be asked have you asked a friend or neighbour to do it? Really? - as she would say, if she had someone who could do it for her she wouldn't be asking someone else to help.

My mother obtained her PhD at the age of 72 whilst caring for my father. She wasn't stupid, but they treated her as if she had an IQ of 7. It also used to make us laugh at when we were visited the OT, physio or whatever would ask who I was. I would always say that 'I'm The Daughter'. No-one ever asked my name, just accepted me as 'The Daughter'. Mum, daddy & me would have a good laugh about it afterwards with them referring to me as 'Daughter' rather than using my name for a long time after.

Ah yes. That's very familiar. I was either "the daughter" or "the wife".

You are allowed to unburden yourself to your dc (and gp and anyone you like) without his permission.

And you must ask for help. OT assessment etc.
You wont get any for sure if you do not ask.
But one day there will be a crisis and you will need it . Get assessed for help. Pay for help if you can afford it.

Thank you. But having had the experience of OTs I would rather manage on my own than let them or SS into my home.

I had a serious car accident when I sustained an unstable fracture to my lower spine. At the time I had 3 children under the age of 7, my youngest was 3. I was in hospital for 6 months.

OTs moved into my house to make adaptations for when I came home. They moved cushions around in my living room leaving only 2 cushions on the 3 seater sofa as they moved one to a chair to raise it for me to sit on - so where are my children supposed to sit? Not only that, but when I sat on it the cushions slid & I was in danger of falling off.

Then the worst was the construction that they put around the loo & bath taps in the bathroom intended to help me on/off the loo & in/out of the shower over the bath. It made a <very dangerous> climbing frame for my children. My 6 year old immediately excitedly demonstrated how he could use it as a climbing frame to get from loo to bath & then use it to jump into the bath. I had to stay with my parents while my husband got them to take away the dangerous constructions.

Also my DH had his own catering business & I <obviously> wasn't able to drive as I was in a plaster cast. My 3 year old went to a nursery. I arranged for her to go to nursery full time while I recovered. However, since DH had to take in deliveries at about 07:00 I asked SS if they could arrange for someone to transport my 3 year old to nursery until I'd recovered enough to be able to drive. They said 'sure' I asked about my child meeting the driver as, obviously, not a good thing to allow a 3 year old to get into a car with a stranger. They said that wouldn't be possible as would be a part of their disability transport service & would be different drivers who weren't necessarily DBS checked. I said 'just to check my understanding: Social Services are quite happy for me to put my 3 year old into a vehicle with someone who may or may not be a podophile?' The woman on the phone coughed, & said 'put that way, it's probably not the best option, do you have friends or family who may be able to help?' AS IF I HADN'T THOUGHT OF THAT?!!😡

In the end a fellow parent in the nursery who was a local infant school teacher (so DBS checked) transported her.

Thank you. I know that.

I knew when I married him, as he was 9 years older than me I was probably going to end up caring for him. My mother warned me as my father was 12 years older than her & she knew what was ahead of her.

Our DCs have their own lives, careers & DGC to take care of & I support DH in his insistence that we don't bother them.

No, I know OTs are useless, they will move in & try to boss us around - that is my direct experience from the way that they tried to bully my mother & more recently friends & neighbours. Their 'go to' response is asking if family or friends can do it for you - as if you haven't tried that option.

Not having that.

We have the money to buy in help if we need it.

When the money runs out we we manage on our own.

I have never used agency staff for my daughter (or my father) - i just found people and paid them. It is probably trickier for you as you live out of town. But anyway, adult social care here allow this. They have allocated me x amount of money for x number of hours and they fund the payroll company and the insurance. I send a monthly timesheet in.

When did you last engage with an OT?

You mention your children being climbing age at the time, but them now having children of similar age themselves.

Which suggests it was probably decades ago. Services have changed hugely. Apart from anything else, funding is far harder to get so they won’t ’move in and do’ anything.

They should meet the patient, understand their limitations and give advice on things that would make life work better. Typically that you then choose to get yourself, or ignore. Occasionally they’ll try and get them funded.

Thanhs for your reply.

It was at an NHS hospital (not my nearest one) that has a Neuro Physio/OT department. She was really lovely, but quite young, but had spoken to her supervisor. I'm not sure I'd get another GP referral to the neuro physio dept, the first one was hard enough to get. A long wait & they've said they can't help me.

I've spoken to the Stroke Assucuation but they didn't have any advice/recommendations either.

do you have any suggestions of how to ask or what to ask, maybe I'm not wording it correctly or something?

Neurorehab service in the community tends to be the term / wording rather than a hospital based therapist (even if it is outpatient). I see people in their own homes. I think it sounds like you were seen in Neuro outpatient which is not as specialist as neurorehabilitation service typically.

Yes it will be AA over state pension age and PIP under that. I'm a benefits specialist and help people in this situations, its very difficult and the help available can be hard to navigate so like many others I suggest speaking to an advice service. CAB or similar, AgeUK as appropriate and yes also the Stroke charities are very good. I am also in a similar personal situation as my husband had a stroke 4 years ago and so much of OPs post resonated with me. I hope, OP, that you can access the support you need. I am able to fit my job around caring for my DH as I have some flexibility with WFH too but you have a lot to deal with so vital you get as much help as you possibly can xx

Sounds like your mum saw an OT who was focused on care needs, which is a very limited scope. It’s a shame you think a whole profession is useless based on historic encounters and hearsay - bit harsh. There are some
fabulous OTs out there who could help specifically with the issues you talked about in OP. If i came out to see you both and you said not interested in care/support then that would be that and would crack on focusing on the areas you wanted to, to problem solve alternative solutions together. A shame you’ve had your view tarnished. Suggesting care is very often not on my radar to be honest, as lots of people in same position as you so not my focus

Hi. I’m very sorry to hear of how difficult everything is for you both. I have experience of ss and ot dept. One OT told me she was too busy to come out to see mums flat and I would I mind taking photos and measuring things so she didn’t have to come.
SS much the same, but I do think you should try again, it’s a lottery who you’ll get, but maybe this time you might be lucky and actually get someone who cares, and actually enjoys their job.
I know you don’t want to bother your family and I would be the same. Can you claim direct payments ? You could then employe your own help.
Wishing you both the very best.

Your dc can give moral support. They should know what is going on.
If you have funds to do so then buy in support for now to make life easier .
Your dh, for all you committed to his care, needs you to not burn out . so you need respite and care for your own needs.
And unburden yourself to gp /counsellor .
Please look after yourself.

Read your username and look in the mirror

Ok. So how would I go about getting neuro rehab in the community?

I had 6 weeks from the stroke early discharge team when I was sent home from the hospital (about 11 days after my stroke. Pathetic amount of physio in the hospital).

then upper limb group at another location 1x pw for 6 sessions (very much aimed at those with non functioning limbs) the woman tgat ran tgat was the one who said I should get nerve conductivity tests done But the neuro OT was the one who said it was pointless.

🙇🏻‍♀️🙇🏻‍♀️

Yes, this what they are supposed to do & I'm sure what they're trained to do. But finances mean that they are limited in what they can do in reality.