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.

Not my experience of life in that era. Perhaps it depends on where you lived.

I’m so sorry @Ilovepastafortea, what a horrible situation 💐

What’s the longterm prognosis for your DH’s hand- can they do anything to alleviate the pain/lack of movement?

Others have given you good advice, but one thing I think you’ll have to cut down is childcare until things are easier for you and your DH. I don’t see how you can look after him, or, and take care of grandchildren unless they’re older children.

Haven't read the full thread but OP, don't wait until the 6 month anniversary to apply for Attendance Allowance. He can't receive it until he's had the impairments for 6 months but you can start the application process sooner. It'll take at least 6 weeks for a decision. Strongly recommend you get professional help to fill in the form - CAB or similar.

It's also possible they'll award faster based on the dupuytren's contracture having been there before the new issues. I'd imagine if his condition was bad enough to require surgery including digit amputation, then he already had some significant restrictions. DH has this condition too and has had two surgeries, no amputations yet though. Again, CAB will be able to advise.

You can look up ‘closomat’ - we sometimes supply these with a funding grant but really mixed reviews from patients and families so do investigate so it’s not money wasted

OP, has he been seen by the Physio and OT in his home?
How is he mobilising in the home?
Does he have Physio prescribed exercises related to his specific condition?

Is it normal to attempt to derail a thread where someone is asking for help and receiving a lot of good advice? You're just being nasty.

You can self refer for these services in some areas. Did his team think there was scope for improvement of his condition post stroke? He must have required help with toileting in hospital - not on to send him home without this being clear is it, when you’re working.

Absolutely none of your business. It’s worked for them and they’ve been happy. And OP was of age.

@Astronautsdontcareaboutbeans I'm 65, born 1960. Three of my close friends married men ten years older than them. It was perfectly normal and I don't recall too many tacks being spat when Charles and Diana announced their engagement and I think that was a 12 year difference.

Is that your input here ? Take your judgement elsewhere.

You could contact the Stroke Association. They may be able to advise you as to what practical help you may be entitled to .

Sending you a handhold OP. Could your DH claim PIP? Could you get signed off work for a month so you can process it all.

Is he getting Occupational Therapy assessments done in the home? This will help with adaptations to make life easier especially toilet needs.

Thank you all for your support I knew that my MN friends would support me.

It's been a difficult day & I was feeling rather over-whelmed.

I'm feeling better now. DH in bed now. Just dreading another sleepless night when DH happily snoring away, but me waiting for him to want to get up for a wee - typically about 00:30, 02:00 & then 05:00 when the day starts as no chance of getting back to sleep at that time of the day, may as well get up & start. As I say a bit like having a small child to deal with. I have plenty of experience with that 😂

Thank you BruFord · but no, he's been told to get on with it. They were more worried about the atrial heart fibrillation that they discovered. He's now waiting for heart surgery.

My concern is about his day to day living. I know he has this additional problem, but in the mealtime I'm pulling up his trousers, wiping his arse making sure he takes his meds & getting up twice a night to make sure that he gets to & from the loo without hurting himself. As well as having to get my sorry arse into the office 2 days a week after making sure that he's washed, dressed, toileted, has food & drink where he can reach it.

It's so stressful

Work has told me that I can't be regarded as a 'carer' unless he's in receipt of a relevant benefit so insist that I go into the office 2 out of my 3 working days a week.

DH keeps telling me how grateful he is for everything I do for him & how wonderful I am. Nothing - I made a promise that I would care for him in sickness & health & I meant that. He cared for me & our 3 children when I was in hospital following the car accident that disabled me. He's looked after me after that accident. Now it's my turn to look after him.

He needs a Physio to help him with his strength and balance. He should have been referred through to the community stroke team.
He also needs an Occupational Therapist to assess his daily living skills. Look for a 'button hook' on Amazon. They are excellent.
He may need a referral to the council OT for a Closomat toilet.
People can drive cars when they only have one hand, so they can be adapted. However, he should have a driving assessment by the OT who works in the stroke team to test his cognition.
Definitiely speak to your GP about the Physio and OT referrals.

There is a secondhand market in adapted cars, and various specialist dealers for them. I believe that adaptive parts like wheelchair lifts can also be bought secondhand and then fitted to other cars.

Work has told me that I can't be regarded as a 'carer' unless he's in receipt of a relevant benefit so insist that I go into the office 2 out of my 3 working days a week.

I’d say they were in breach of the law. The Care Act 2014 gives a legal definition of a carer as anyone, including children and adults, who provides care to a family member, partner or friend who needs help because of their illness, frailty, disability, a mental health problem or an addiction, and who could not cope without this ‘necessary care’. The care they give is unpaid. The guidance is clear that this support can be emotional as well as practical.

There is no mention of eligibility for associated benefits being in any way necessary to fulfil that definition. Do you have a HR department. If so I would bring this to their attention and ask for advice. You can register with your GP as a carer and ask them for a letter of support confirming that you are your DH’s main carer.

Long term you wont be able to continue broken nights etc. You will need a break. Whether daily or from time to time. You are in your 60s not a younger new mother .
Get onto adult social care for assessments.
Speak to local carers org.
Your dh will have to accept external help.
You want to continue to enjoy life together not just be worn out.
Can you afford some extra help.in meantime? Housework cleaner etc?

Over the next 15 months or so the neurological pain in his left hand should gradually subside. It's not uncommon after an amputation but in most cases it does resolve. Nerves do take an awful long while to heal (been there, done that, got the agonising t-shirt) & what's called "paradoxical pain" from nerve disruption/ damage is one of the most common complications of surgery. However, there are things that can both optimise recovery from amputation & speed things along so it's worth asking the surgical team (if they haven't discharged him) for desensitisation treatments for his left hand. If they have discharged him, ask the stroke team to refer him back to them because from what you say, his pain is so unmanaged that its impeding his stroke rehab.

Gabapentin isn't an opiate BTW, it's a neurological pain killer from a different drug family but it's a powerful Schedule 3 Controlled Drug, which is why it requires greater care in dispensing. Opiates just don't touch the sides of severe neurological pain. Gabapentin can though, cause dizziness as a side-effect so it's worth asking the prescribing department whether the dizziness might be lessened with a different drug from the same family or a different dosage, or if it's best to persevere - patients often find that this kind of early side-effect lessens over time.

However, before tinkering with his drug regime, I have bad news - alcohol interferes with all the drugs in that family & may be reducing effectiveness in managing the pain as well as increasing his dizziness - these are known issues. The combination also carries a significant, & especially in older adults, dangerous risk of suppressing respiration. Booze & gabapentin is also somewhat depressing - it slows cognitive function, making decisions harder & more confusing, & messes up one's ability to concentrate or plan, which all tend to lower one's mood. He'll need a good three weeks off the booze before he can tell for sure. After that an occasional tipple won't hurt but sorry, it has to be very occasional. Gabapentin's not a Scheduled, Controlled drug for no reason.

Dizziness can be an after-effect of a stroke that affects the cerebellum so if that's the case, it's vital that he gets (& ploughs on regularly with) vestibular rehabilitation exercises from the stroke physio. Feeling woozy all the time is no bloomin' fun & then there's the added risk of falls, VRE can help a lot.

Optimising recovery after a stroke means pushing oneself, which is of course, so much harder when also in significant pain. Agree with PPs re Occupational Therapy input on that score, they were a godsend when a very elderly friend who'd had Dupuytrens surgery a few months before suffered a stroke that set him back hugely.

In a spirit of optimism - despite coming home in a thoroughly shocking state after the stroke (both I his care assessor were appalled that he'd been discharged at all) my friend eventually made an excellent recovery from both his surgery & his stroke, living independently with his only longterm issue being a touch more unsteadiness, & an extra hesitancy of stride remaining in legs that were already, in his words, "wonky in the knees & clapped-out in both directions".

Best wishes & fingers crossed for you both!

Edited for missing word

Slightly different situation to you in that DH had an emergency and therefore unplanned lower limb amputation at the start of January.

But yes, I fully understand your frustration with the immense change in life - my DH is currently living in the dining room as he's confined to a wheelchair, and has no bathroom access (so commode and urine bottles).

Yes to elasticated waists - I bought some smartish ones in Sainsbury's and Tesco, of all places! DH was adamant that he would not wear joggers.

And yes to the exhaustion and repetition of sheer drudgery - I work full time (teacher) and our 6 week care was withdrawn after a week, on the grounds that we can clearly manage 🤷‍♂️.

My thoughts are with you - you are not alone in this!

Motability actually are a major UK charity. And they’ve been in existence for much longer than PIP has been the main qualifying disability benefit, so it’s not true to say that they are a niche organisation among PIP claimants. They oversee ‘Motability Operations’ who administer the vehicle leasing scheme, working with car manufacturers to source vehicles at discounted prices, and are responsible for the selling on of vehicles returned at the end of the lease.

They receive government funding in the form of various tax breaks and the cars are provided on lease in return for the claimants’ mobility allowance. Scheme users have to be in receipt of the higher rate mobility component of PIP or child DLA to qualify for Motability and there is not currently and nor has there ever been, any provision for people to bypass this requirement and pay out of their own pockets. Motability do not have the means to facilitate this because individual leases are funded directly by the DWP by redirecting the mobility component of PIP directly to Motability Operations for the duration of the lease.

Sorry to hear of your struggles.

As a point of information for you, Gabapentin (which I take) is not in any way an opioid, I've been on it for years, and frankly its never worked, not sure why I carry on with it!
I have never experienced dual approval for its issue, Boots are useless at the best of times, if you have a Tesco pharmacy, switch to them.

Best of luck with it all.

Re toileting at night time, could he use a bottle by the bed independently and if not, could you ask DNs to trial a condom style catheter (Convene) that just drains into a bag overnight so your sleep does not get disturbed.
The toilets commonly used are called Geberit and Closomat but an OT assessment should explore bottom cleaning options.

Yep. I was just 18 when I met my DH in 1977 - he was 26. Nobody batted an eyelid. We were married for forty very happy years until he passed away a couple of years ago.