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.

Ah sorry missed that.

it is one of the more standard adaptations that are done for cars and they may be able to find a company that will do it.

The more specialist input he gets sooner, the more likely he is to recover more

It's so bad that people are left to get worse than they need to, or remain worse, just because the care they need doesn't get sorted out in a timely manner or at all. So many people's lives could be improved lung term if they got the care they need when they needed it.

IDK if someone can just pay for a car through the Motability scheme out of their own funds? They're not a charity or a government organisation. They're a lease-hire car company that's found a niche in the market amongst PIP claimants who don't want the hassle of purchasing and maintaining their own vehicle. Lots of people pay extra though on top of the PIP because they want a certain make/model of car. So they do have the means to take payment from an individual.

Thank you for your input.

DH is retired so doesn't qualify for PIP it's going to have to be Attendance Allowance. I used to be a decision maker for AA so I know that he will qualify 6 months after his operation & stroke which will be on 20/5/26.

I will look into the Japanese lavatories - sound interesting.

I was so cross when we went to the doctor surgery yesterday as the spaces reserved for the surgery were all used up with people doing general shopping which meant I had to drop DH off while I waited for a space. I have no doubt that if I'd been able to join him in the surgery there would have been more action as I'd have been more assertive than DH was on his own.

I don’t think so.

but the companies that adapt cars will also work on owned cars.

when I had my accident I took my Volvo to one such company to find out if they could put a ramp/hoist etc in. The companies that do the adaptations are not the same as Motability themselves.

If you get a blue badge you can park pretty much anywhere you like.

I’ve had one for over a decade now and it makes a massive difference.

if you use a wheelchair outside the house you are probably eligible in your own right as well.

Sending you hugs OP.
How enormously stressful for you and my heart goes out to your husband too.
There is alot of good advice on here that I have nothing to add to.
Sooooooo important that you take care of yourself OP and get some respite.

As he's 72 he's classed as 'elderly' therefore he qualifies for both an OT assessment and adult social care assessment of need, which should have been done before he was discharged. Tough if he doesn't like anyone else helping him other than you. My dad was the same , but my mum descended very very suddenly into advanced dementia and couldn't do the care anymore (at that point she'd been his carer for over 50 years!) Dad qualified for 4 care visits a day (he had an indwelling catheter and became incontinent of faeces) You are his wife, not his carer. You're not meant to be cleaning him etc. My mum flatly refused to have anything to do with his personal care. That's what you have to do. At the very least he qualifies for 6 weeks 're enablement care' paid for by the NHS/social care whilst everything else gets figured out. Do not reduce hours/change your life etc. Ring adult social care in the morning and get the OT assessment and adult social care re enablement team involved.

As others have already mentioned try to take a step back, if he truly wants to get mobility back in his hand he needs to work on it himself, no physio is going to work that for him,I had serious operation and lostthe use of one hand which is now working it’s never going to be the same as it was but I manage small wins like doing zips and buttons definitely get some Thera putty or hand grip kit off Amazon,game changer for me,ask me anything I wish you all the best

If he was fit to drive, as in no alcohol, then it's possible that he could get a grant to adapt a vehicle to enable driving. You can get a switch on the steering wheel to operate indicators, hand brake, etc. The Driving Assessment Grant is open to non-Motability customers as well as Motability customers:

www.drivingmobility.org.uk/useful-information/driving-assessment-grant/

OP this sounds so tough, your love for him is so clear.

Is money an issue? I know you shouldn’t have to but is there simple stuff you can throw money at - get a cleaner, some will do things like change beds and put washing on etc, meal deliveries, Japanese toilet/bidet attachments, accessible clothing, private physio etc. I know you SHOULDN’T have to but short term it may ease the burden on you.

Im acteyored District Nurse, please contact your GP tomorrow, they should be able to put you i. Touch with the right team, maybe frailty or crisis team, called different things but you urgently need someone to co.e and assess you , and some carers to give you a break , depending what you qualify for, but there is ongoing help out there, im shocked he was discharged without a care package that acknowledged his future needs.
Im so sorry you are coping with this alone.
About his clothing , you can buy adaptive clothing An if you can sew, I had many patients who had velcro added to clothing, easier for him and gives him some dignity back
Good Luck, please look after yourself as if you have a problem there is no one to look after him.x

Sorry to hear of your situation. Why was he discharged home with no care? He would probably been eligible for 6 weeks non means tested care. Lots of pharmacies offer a delivery service for prescriptions so get that organised. Think very hard before cutting your working hours. Can your children help pay for a cleaner or come round to help / visit so you get a break.

Im am a retired District Nurse, please contact your GP tomorrow, they should be able to put you i. Touch with the right team, maybe frailty or crisis team, called different things but you urgently need someone to co.e and assess you , and some carers to give you a break , depending what you qualify for, but there is ongoing help out there, im shocked he was discharged without a care package that acknowledged his future needs.
Im so sorry you are coping with this alone.
About his clothing , you can buy adaptive clothing An if you can sew, I had many patients who had velcro added to clothing, easier for him and gives him some dignity back
Good Luck, please look after yourself as if you have a problem there is no one to look after him.x

My dd2 was born without her left hand, which is far easier than losing the use of it.

But there are plenty of adaptations out there, for example a steering ball helps her to drive.
Ask to be referred to you local limb centre (some are better than others) and see what help they can put in place.

Edited to say she doesn't get motability so we funded the steering ball. It cost I think about £1800, but I may be wrong. I may be able to find the info for the chap who came to do it if you are South of England. You want to get assessed first though as he might prefer one adaption over another.

I’m sorry you’re going through this, it seems awful for you both.

Things will get better as he’ll learn to adapt without using that hand.

For now, the bathroom seems the most degrading and so I would get a walker which he can lean on for balance and have a bidet installed.
I actually use a special bottle which was about £5 off Amazon as I don’t have a bidet and couldn’t use toilet paper for a while. I still use it now, even though I can technically use the paper.
If he has elasticated trousers then he can simply use his good hand to pull them up whilst using the other arm to rest on the walker whilst locked.

I would also look into medical marijuana as it’s a much healthier alternative than alcohol and it will help with the pain.

She’s only 12yrs older than me and that wasn’t normal in the 90s or 80s! A grown man and an almost child!

We were given the 6 weeks care. It was supposed to be 3 times a day. A manager/carer took one look at me and cut it to once a day.

Two days later, it was zero.

You have to learn to put on a hard face, I've learned. The last time DH was in hospital I said I was refusing to have him home without the correct equipment. We got it.

Hi OP, sorry to hear your husband had so many insults so close together. Lots of good advice so far I think but I have a few extra questions:

Has the stroke affected the same side of his body as the hand surgery was done, or are both hands now not working as they would have?

Did he get hand therapy? Post Dupuytens's release surgery, particularly if it was a terminalisation / finger amputation, it is accepted practice to see a hand therapist for multiple sessions. Was this NHS or private surgery? Desensitisation exercises can make quite a difference to uncomfortable sensation on touch so he really does need to see a specialist in this. PALS at the Trust where the surgery was done (if NHS) could help you find out if referral is possible.

Neuro Physio and OT absolutely essential post stroke. NHS services are overwhelmed and can't meet demand, but he really should be a priority if he cannot toilet and dress himself independently. And ideally hand therapy and neuro services would be talking to each other to help make all input cohesive. Does your daughter work at the hospital where he was?? Is she able to add any local knowledge?

I understand that you may not want to disclose where you are geographically, but it might help to give more specific thoughts on services that could help.

OP I’m so sorry this is happening to you both. Firstly, you say you’ve counted the six month qualifying period from the date of his op, but how long did he have the Dupuytrens before the surgery and did he need any care or support from you or anyone else because of that, or any other disabling condition ? If so then you may be able to claim sooner, and explain the increase in care needs after the operation. In any case I would put in the claim ASAP because there are significant delays in processing claims and at the moment that can mean a wait of anything up to 16 weeks. By which time he will be eligible to apply anyway.

You mention that you have disabilities yourself and I’m wondering if you are claiming personal independence payment, because it certainly sounds as though you should be. You need to claim before retirement age, as after this it will be AA, but if you are awarded PIP before retirement age you can carry on claiming it after that for as long as you satisfy the eligibility conditions - which could be useful as you may be eligible for the mobility component, which AA doesn’t offer. You can claim PIP for yourself and carers allowance for your DH but you will need to demonstrate that you cannot do for yourself, the things you do for your husband as part of his care, which can be quite tricky.

If your DH is in receipt of pension credit, AA will mean that his minimum income guarantee will be higher, so his pension credit will rise.

Other things to mention on benefits are that carers allowance is currently £83.30 per week but set to rise in April. You can currently earn £196 per week after tax and certain deductions but earned income above this amount will affect the allowance. Private pensions and investments are not counted as income for carers allowance, but state pension will affect your entitlement - if your SP is more than carers allowance it will wipe it out altogether - if it’s less, then the difference is payable.

Did your DH have an assessment for care needs before he left hospital ? He should have had an OT assessment of his needs, involvement from the stroke team, and preferably a home visit to see what simple aids and adaptations could be provided on discharge. Ask your GP for a referral to OT or physio services if this hasn’t already been done, and also for a referral for an assessment of your DH’s care needs. He will more than likely qualify for home care services, which is means tested by ability to pay. The important thing to remember here is to make it clear you are disabled yourself and need help to care for him. Don’t volunteer for anything or mention that you are thinking of reducing your working hours, or you’ll be left to get on with it.

You mentioned toileting problems. Has he any level of incontinence or is it simply that he can’t manage to wipe/pull up clothing ? Specialist padding is available on the NHS - eligibility is strict but it may be worth looking at - again GP can refer you to continence services. There are also specialist aids available to help getting on and off the toilet and also with wiping. Might help him get back some independence and take the pressure off you a bit, and there are lots of online outlets that provide specialist cutlery and other gadgets for those with impaired grip.

It all sounds very daunting OP but help is out there, it’s just a matter of knowing how to access it. Also worth asking your GP surgery if they provide any support for carers - ours does and can point people towards the help they need.

Another vote for occupational therapy assessment. You are the type of family I work with.

1. If you have a neurorehabilitation team locally they would be best for you both, you both have complex needs and everything you listed would be within their remit to help think about, including intimacy.
2. I also think you’d benefit from a social care assessment but the waits can be rubbish.
3. Contact stroke association, spinal injury association and/or Aspire for support if you can. You both deserve more help than it sounds like you’re getting. These charities are wonderful from experience

I’m so sorry, things changed overnight for you and you deserve some help. What an awful few months you have had. Life won’t look the same, but it can be better with the right things in place

Well what do you want OP to do about it?

I’m not sure I’ve read every single post but a Japanese loo might get round the issue of him not bent able to do it all. It cleans you up at the push of a button.

Most of the AA forms I'm assisting with at the moment are awarded within 5 weeks and I assist with a lot !

I'm so sorry both you and your husband are going through this. I would strongly recommend booking yourself a GP appointment, to seek support for yourself and your husband (they can signpost support groups, counselling, possible channels for respite care etc.).

In the meantime, sign up to an online pharmacy asap. I use Pharmacy 2U for all of the medications you've mentioned. You just put in the request through your normal local online prescription channels (NHS app, GP office, email address etc.) and they approve it and your prescription is sent to your home in the normal post.