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.

He needs a care assessment and you need a carer's assessment. He also needs a referral to the pain clinic and an OT, Falls clinic, plus physio if he isn't already receiving it. I would book a GP appointment and ask them to make all the referrals. If you feel able, you could also ask about psychosexual counselling.
Also, ring Age UK for advice on benefits and local services that might help.
Hopefully some of this will help make both of your lives easier.

A homecare agency might help - you could have a regular morning and evening visit for your husband to be assisted with dressing/undressing and washing.

If you already know you have savings above the limit for this, you might prefer to just pay directly rather than go through the lengthy financial assessment process.

Alternatively, booking a local cleaner or home help to come in once or twice a week, A monthly delivery of frozen good quality meals such as Cook! might also lighten the load.

Have you tried Pregabalin ? It works similarly to Gabapentin but is more effective. GP had to adjust the dosage a bit, but we got it right in the end. Both meds should be regularly reviewed for efficiency though - as with any long term treatment the body gets used to it and higher doses are eventually needed.

If my neighbour's recent experience is anything to go by then you can refuse till you're blue in the face to have your too-sick-to-cope-with spouse back home but if he/she has mental capacity they've a legal right to return to what is after all, THEIR home as well.
Hard-pressed hospitals will be desperate to discharge a "bed blocker" at the first opportunity.
When my neighbour was given her husband's discharge date she told the hospital that she'd be away that day but he was still delivered home by ambulance and stretcher!
A care package had been arranged but my neighbour was still left with big gaps to cover.

Has the hospital explained what happened? I know no operation is guaranteed but that's a terrible outcome. It might be worth at least consulting a specialist clinical negligence solicitor about a possible negligence claim.

What I will say is that my husband had a really severe stroke and yet there were still improvements after he got home. He was in hospital for 4 months, learning to walk again and the staff only concentrated on walking (and speech where necessary) for all the patients in the ward, so far as I could see.

When he got home, DH's left hand was clawed and facing backwards. I can't remember the timescale now, but the it was eventually facing the right way and no longer clawed.

Medics tend to talk about there being improvements in the the first three months, but everything that I read said that improvements can continue and that was our experience. For example, when DH got home, his personality had changed somewhat and he got rather angry and verbally abusive with me.
(I told the nurses and they just laughed: "Just so long as he's not swearing at us!")

Eventually, that stopped and DH apologised for his previous behaviour: his original personality came back.

I tried to find one of the articles that I read when DH had his stroke. It was about an American who was told that he wouldn't walk again. He started doing hyrdotherapy and then swimming and eventually learned to walk again. Can't locate it now, but found this one:

https://www.nuffieldhealth.com/article/how-86-year-old-joyce-learnt-to-swim-after-a-stroke

I'm not proud of myself, but after the experience with the stroke (when DH was sent home initially without the promised improvements - "We'll send someone to sort it the same day...") I vowed not to fall for it when he was admitted for the last time with acute kidney failure.

(There was also the fact that they did this to two of the other wives in the stroke ward - tried to make them take their husbands home without the promised lifts. It worked with one; the other lady refused.)

The last time, I informed the OT that the house was mine (true) and that I'd refuse to have DH home without the promised bed raising equipment to help me get him out of bed. (My shoulder was already damaged.)

I later found out that she'd quizzed DH on the state of our marriage...

My son is on Gabapentin due to nerve damage in his leg caused by sepsis. I've never had any issues with prescriptions, I go through an online service which is delivered directly to my door. I just have to request it when I know we'll be running out soon, is that an option for you? He also has lidocaine patches for neuropathy in his feet.

Definitely ask for a carers assessment including OT and Physio. My son has desensitisation with OT which is helping to improve his nerve pain and also has physio and hydrotherapy too.

If the Attendance Allowance will take months to go through, consider applying for it now. I did that with DLA for my son to minimise the waiting period.

Yes but he needs her to go fetch him. If she didn't fetch him that would help. And would do away with his "don't worry my wife will look after me" which he probably said if he didn't want carers. This country is going to pot though you're right about that.

OP the thing about the definition of "carer" is different depending on whether you're trying to claim carer's allowance from DWP or whether you're looking for reasonable adjustments at work. Same for the definition of "disabled". Your employers are taking the piss, as per previous poster.

Why are you waiting? If he had a stroke after the op and complications since you can apply for everything pip,DLA,carers allowance,blue badge etc the whole lot..he isn't going to get better and that's what they look at, also apply for night time carer allowance as that's separate to day allowance

Would it be possible to say how I could get information on the desensitisation protocols? I have asked GP, physio, various stroke consultants & the stroke association what I can do, but variations on 'live with it' is all they can offer me 🙇🏻‍♀️.

I both have no feeling (as to where someone is touching me or what I am touching). Other than the hypersensitivity & pain caused by being touched.or touching something I can't actually tell you I'm holding something. It's very odd. You don't realise how sensitive & informative 'touch' is until you lose it.

@Ilovepastafortea I have learnt to do a lot with one hand (which was my non dominant hand before the stroke & also has limitations from a previous accident) & have had to adapt with a lot of things. I live in loose leggings and big t shirts/oversized sweatshirts because I learnt to pull them on/up single handed. I occasionally can wear trousers if I know I won't have to undo them/do them up when I'm out or if I'm with someone who can help me. I can do them up at home if I lay on the bed. But tbh it's far more hassle than it's worth! I also had trouble wiping my own bum with my 'wrong' hand and not being able to move my torso & arm in the right ways to reach. But I live alone so had to persist. I tried a few 'tools' but none of them worked for me. After a bit my body learnt how to move so I can reach & now it's almost as 'normal' as it was with my dominant hand pre stroke.
I feel too ill (not sure what's causing it, possibly the medication I'm on, possibly my parathyroid, possibly something else as yet undiscovered 🙄🙇🏻‍♀️) so I can't 'cook' (feel too sick/faint/exhausted standing) but I keep myself fed mostly by chopping veg (single handedly) & using the airfryer (lots of courgettes & Brocolli) and using BOL pots with this added veg. So I suppose it depends what cooking facilities you have, my airfryer has been a god send & how much your husband persists.

Living alone has been scary at exhausting at times, but I do think in some ways it has helped me. When you have no one to cook, bring you drinks, help you dress (beyond the initial 6 week community care help) you have to learn to do it yourself. Although we are all different & necessity might not make much difference to your DH, but might be worth trying a bit of tough love.

look after yourselves 💕

Hi I'm sorry to hear about your son. I hope he makes a fantastic recovery.

Do you have any idea of how I can get help with desensitisation for neuropathy?

I had the EDS TEAM (early discharge stroke team, so you're not using a hospital bed) for a few weeks, which included OT's, but that ended a year ago & 'upper limb rehab' but that didn't take my situation into consideration really. It's aimed at those with no function. I have function but neuropathy (so no feeling). Also can't find any hydrotherapy specifically for neuropathy. Is your son getting his via NHS or private?

Oh my God how awful for you both. My OH is awaiting the same op and in two minds. I think I will show him this. It sounds absolutely horrendous. My heart goes out to you.

@Ilovepastafortea

something you might want to consider if your DH doesn't already have it us a watch that alerts someone if you ave a fall. Apple Watches do. But there is also a company called 'your stride' the watches are inexpensive & the monitoring service is £17 a month or £20 including another feature (can't remember what it was now) there's no contract so you can cancel anytime. They're a great company to deal with. If you have a fall they speak to you via the watch & can contact any of your 'contacts' & if you can't speak to them they will send emergency contacts out. You can use the button on the front to call them if you need help but haven't falllen I ordered one, but then cancelled the order as I decided I wanted an Apple Watch (for other benefits) instead, but the 'your stride' is a brilliant option & had I known about it when I was first discharged from hospital I'd definitely have hit it.

OT should be able to help him learn to pull up his masticated waist trousers without falling off the loo. Helping him learn where to plant his foot for stability & organising grab rails etc x

FGS, is that all you got from the OP?🙄

That sounds 👍.

The pain he is experiencing, and that you're dealing with sounds miserable...

I may have missed it - have you seen pain clinic specialists? If you're on a long waiting list-is there any way your GP could expedite? Or anyway you could see these people privately?

There are desensitisation exercises that can help- I had these for nerve pain. Perhaps GP /local physio could be seen in short term to guide him in right direction?

More a neuro / nehrorehab OT and physio team that look into this longer term. Sensation a big part of my work, for you I’d be looking at de-sensitisation programme

Look into your local neurorehab team, they usually offer more long term and comprehensive work on sensation and wider areas of practice than stroke team. I regularly work with people like yourself. Not much evidence that i’m aware of on hydro and sensation as you describe. We tend to look at de or re sensitisation, but needs assessment as to what type of sensation affected. In my experience stroke ESD don’t do this and usually more specialist which we
offer in neuro more widely

@Ihad2Strokes

I'm sorry, I can't think of any specific place to go to. It was sheer chance that one of the interim carers had worked on a stroke ward. The response that you were given was pretty much the one that we got.

A practice nurse suggested amitriptyline for the pain, but the GP vetoed that given the other meds that DH was on - she feared it would muck up his balance even more (and I'd agree, given what that same medication did to my late mother).

I recall that one of the physios in the hospital vaguely mentioned trying different textures - towels, etc - on the stroke hand but we weren't given a programme of any kind and that was when DH's hand was numb, not painful.

I've found this. Maybe if it were shown to a GP? The section on hypersensitivity is right at the end.

https://www.cuh.nhs.uk/patient-information/post-stroke-sensory-deficits-and-re-education/

Your local carer's association will be able to sign post you to services locally which you might never otherwise come across. There may be local support groups, charities who can help, free counselling, low price well being services. Plus they can sort out the carer's assessment. Unlike assessments for carers of children, which were introduced by gov but not funded, adult care assessments often DO provide proper services. I mentioned before that I get PA hours to mind my adult daughter while I go out. This is for me, not her. I could also get her support from the LA but there is a financial contribution for that and we don't do it, but we do self fund some services, so the assessment is useful as they can explain what's available.

I waited for ages to see a neuro physio, the neuro physio I saw as an outpatient (NHS) said there was nothing they could offer as the issues is with my brain (stroke) & not damaged nerves?!

I needed desensitisation physio and was refused nhs physio outright.

i also couldn’t walk at the time.

i made a list of private physios and started ringing them and asking if they did this sort of work and if not who they would recommend.

after a while and a lot if “don’t know, sorry” I did find someone prepared to take me on privately.

i accessed nhs physio finally about two years after my accident when my new consultant got stroppy with them but even then it was only 4 lots of 45 min sessions.

I mean, yeah. Just thought of my 17yr old girl being with an almost 30yr old man. Weird that was thought of as normal by so many here.

This is more an area of OT practice than physio - they are probably correct that the brain is the bit not sending messages but neuroplasticity means you can build new pathways and improve function and sensation. They should have referred you to neuro specialist therapies as neuro outpatients are often limited in their scope of practice