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

181 replies

Ilovepastafortea · 15/02/2026 17:11

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.

OP posts:
Ilovepastafortea · 20/02/2026 17:49

Ihad2Strokes · 19/02/2026 03:19

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?

Have enquired no such service in our area,

OP posts:
Ilovepastafortea · 20/02/2026 17:58

ScaryM0nster · 18/02/2026 20:43

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.

Thank you for this. I live on an estate for over 55's, Most of the residents are in their 80's or even older. All report very bad experiences of SS & OTs. I spend my spare time supporting elderly residents who don't have relatives living within driving distance, or who either don't have children or relatives living or have out-lived their children.

Regretfully the whole system is broken.

So sad.

OP posts:
Ilovepastafortea · 20/02/2026 18:05

pam290358 · 17/02/2026 19:56

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.

Went through this with my mother with my father's needs. Came down to Mum & me on our own.

They kept saying 'but can't your daughter do this that & the other...?' even though I was there I was referred to as 'The Daughter' never a person in my own right

Totally disregarded the fact that I worked full time, DH had 3 catering businesses to manage & I still had a teenaged DD at home.

OP posts:
Jaffapaffa · 21/02/2026 07:08

We've also had very underwhelming support from the OT team.
I've given up expecting anything from them now.

Jaffapaffa · 21/02/2026 07:13

A perching stool has been delivered, so that DH can access kitchen work tops.
But it's the wrong height, and when adjusted, is unsafe, so is waiting to go back.

Someone is coming to assess us for a ramp and widening doors to allow the wheelchair outside - they phoned a couple of days ago. But in the meantime I've already booked and paid for builders to get on with it.

Who knows when the stair lift assessor might pop round 🤷‍♂️?

It's just quicker to sort it out myself.

IdentityCris · 21/02/2026 10:08

OP, have you ever investigated what happened at the hospital? I know you can't necessarily avoid things going wrong, but was he being properly monitored when he was in surgery? It really shouldn't be possible for someone in a hospital to develop sepsis.

If there was negligence it would be worth pursuing it. Remember you only have three years from the date of the surgery to initiate any claim.

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