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.

Do you mean privately? How do I choose a good one?

I saw a neuro OT (NHS) a couple of mintgs ago (it was a long outpatient wait) she was lovely, but said there was nothing they could do as my 'issue' is brain (stroke) not actually the nerves.

??

Thanks!

Ill have a read if that in a minute.

i did try amitriptyline but stopped because i was feeling so unwell with all the medications & it was the least essential.

Idid do the sensory things, but it didn't seem to be helping so I eventually stopped. I wonder if it's worth starting again & how long it's worth doing it?

I work for the NHS - usually a neuorehab service in most areas. I would ask your GP to refer you or contact Stroke Association for advice. OTs in specialist service sounds more fitting for you and OP. The guidance that the brain being the affected bit and therefore nothing they can do is not quite correct. Sensation is really hard, it doesn’t always come back, but to say that ‘because its your brain there is nothing we can do’ is incorrect. It sounds like it was outside their area of practice which i come across regularly

How do you know he isn't going to get better ? People recover from strokes all the time. He can't claim DLA as new claims for adults ended 13 years ago. He can't claim PIP as that is for new claimants under state pension age which he is not !. It would be Attendance Allowance and there's no such thing as night time carers allowance. He can apply for AA but needs to wait until he has had difficulties for six months to meet the criteria - that is why op is waiting as she explained in her first post !

This is not correct.

PIP is now the main disability benefit for those of working age and it gradually replaced DLA from 2013 onwards. The only adults still claiming DLA are a few legacy claimants who didn’t meet the PIP migration rules set in 2013. The benefit is now called child DLA and is only for children up to the age of sixteen.

OP’s husband is 72. Attendance Allowance is specifically for those over state pension age, so will be the only disability benefit for which he can make a claim. PIP is not payable after retirement age unless you have claimed it before you reached that age. OP herself may be eligible for PIP since she is disabled and below retirement age.

The eligibility rules for Attendance Allowance state that no claim can be made until the disabling condition has been present for at least six months. OP says her DH’s hasn’t. That’s why they have to wait to claim.

They can apply for a blue badge now with medical evidence, but being in receipt of Attendance Allowance would significantly support the application as it shows the need for care and can evidence mobility related difficulties.

OP cannot apply for Carers Allowance until her DH’s claim for Attendance Allowance has been awarded, as eligibility for the former depends on the latter. And there is no such thing as a night carers allowance. Carers Allowance is awarded on the basis of providing 35 hours of care per week - regardless of whether it’s during the day or night.

When considering a claim for any disability benefit the DWP consider a lot more than just whether a claimant will get any better. The claimant has to satisfy strict activity descriptors designed to assess the level of disability and there are various levels of award corresponding to the degree of difficulty experienced by the claimant. Medical evidence is needed to support the claim and in many cases the claimant will attend a face to face assessment with a medical assessor. If the condition is permanent and unlikely to improve, that will be taken into account in the length of award.

Agree. I’ve posted similarly below you but in more detail based on professional experience. It makes me really angry when people come on to a public forum and post nonsense like this because vulnerable people come on to these threads looking for information and this just misleads them.

I work in this field and sources are telling me awards can take anything from 6-16 weeks, based on current claim levels. It also depends on area and the claim itself - whether there is sufficient evidence to award without further evidence. My own experience is that straightforward AA claims with supporting evidence and not requiring face to face/telephone assessment are dealt with much more quickly.

I get where you’re coming from but I doubt OP has the energy for that, given what she’s already facing. Have been through similar with a relative who got absolutely nowhere because they were elderly and not in good health when they underwent surgery, and the risks and possible negative outcomes were explained beforehand. It’s exhausting.

@Ihad2Strokes

my accident was eleven years ago.

I did desensitisation daily once I’d heard of it which was about six months after the accident.

it was daily for about four years and then I got a bit bored and it’s about once a week now.

it’s a bit like exercise - best thing is to do it sbd keep doing it.

You could both potentially get carers allowance
i did my late parents AA forms and got them both the high rates of AA with no interview / assement

I also got them a disabled bay outside there house and got them both blue badges

with the AA
get a copy of the prescription and send that along with any letter from OH and any adaptions / aides he uses

if they are prescribed from the hospital enablement center make sure to mention this
if prescribed it’s worth paying to get a doctors letter stating he has xxx prescribed from the enablement center

make sure you make it clear that he can’t do stuff himself and he needs help ( like you have here )

I have some heavy duty meds that I take tramadol pre gab cocodamal

i order mine on the patient access app
and my pharmacy just texts me when they are ready to be collected

Daily for about 4 years?!

bloody hell, I'm just not that patient

you're still doing it 11 years in, how do you think it helps??

OP’s husband is 72. You can’t claim carers allowance with state pension, it’s an overlapping benefit. The only way he could claim it is if he was receiving less state pension than the amount of carers allowance and then he would receive the difference. If he’s in receipt of pension credit he could claim a carers element on that, but only if OP is awarded daily living element of PIP.

My parents were both in receipt of Attendance Allowance. This meant that - even though they had no entitlement to Pension Credit (because of their savings, I recall) they each had an underlying Carers' Credit which then - for some reason - gave them an entitlement to Pension Credit which they normally wouldn't have had.

I think I said upthread that someone from the council insisted on applying for this for them, (when the council started charging for the home help/housework component of their care package).

Yes, sorry, it would have been the Attendance Allowance itself that gave them each the underlying entitlement to carers credit. The carers credit is paid via an addition to existing pension credit, but in certain cases can trigger an entitlement where there was none before - as can Attendance Allowance on its’ own because it’s paid as a disability premium on PC, pushing up the amount of the minimum income guarantee.

I would definitely recommend an OT assessment. Your local health OTs might be able to provide some equipment or sign post you to things like long handled bottom wipers. Accessible chopping boards with raised edges and vegetable spikes can ensure bread stays put whilst you butter it or hold fruit/veg steady whilst you chop it.
Many health boards have pain management services which can help with long term management, particularly supporting mental health to enable people to carry on with activities which are important to them.

Closomat and gerberit toilets are both worth a look (other brands may be available) due to their washing and drying functions.
You can also sew loops of ribbon inside the top of his trousers which he can put his wrist through for pulling up trousers on his less functional side.

I don't work with adults but if I can help, please DM me.

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.

Adapted cars are only available to people in receipt of a relevant benefit.

But it's also the affect of his meds that make me feel that he's not safe to drive.

He's become very forgetful. For eg: last night we discussed how today is Shrove Tuesday & how much we enjoy pancakes, this morning he asked why I wasn't at work as it was Wednesday & a day when I work. I have a chicken in the fridge left over from Sunday dinner we discussed this morning how I will bake a couple of spuds we can have cold chicken, pickle, baked spuds & baked beans. Then, about 2 hours later, I discover that he's taking sausages out of the freezer & chopping carrots to make a sausage casserole for this evening's dinner. I told him that I'd fed the dog, an hour later he's in the kitchen feeding her (she wasn't complaining). I'm not sure if it's the meds on the on-set of dementia.

My own experience is that straightforward AA claims with supporting evidence and not requiring face to face/telephone assessment are dealt with much more quickly.

Totally, I helped a retired friend & neighbour complete an AA form, it was awarded within 6 weeks & she got the backdated payment into her account before the award letter arrived.

It's a matter of giving DWP all the evidence that they need - hospital appointment letters, Dr & consultant reports etc, better for them to have more than they need. The Decision Maker (DM) can make an easy assessment without having to ask for extra information, assessments etc.

OP firstly you don’t need to be on benefits to have an adapted car. Depending on what you have now it may be possible to adapt your existing car for his use, although automatic models are usually more suitable than manuals.

I understand your concerns about his driving ability, but if that can be addressed you can contact the Driver Mobility Centre head office on 0800 559 3636 to find out where your nearest assessment centre is and arrange an assessment of his abilities and to see what adaptations may help. Alternatively you can go to www.drivingmobility.org.uk/find-a-centre/, and type in your postcode, and it will give you the details of your nearest centre. An assessment and recommendation report cost around £200-£250.

His forgetfulness may be down to the effects of the stroke. Short term memory is most often affected by stroke but some of the effects may not affect it directly. If DH has trouble sleeping it can have an effect, as can difficulty concentrating. Or it could be the meds that are responsible if he’s still trying to become accustomed to them. Your GP should be able to give you more information.

You can also provide written evidence yourself OP. If you are his carer, you can provide a report of the care you give him and how long it takes. Any friends or relatives who are familiar with his condition can also provide evidence based on their own experience and observations. If you get any local authority care in place before you make an application for AA, it’s important to give details of this too, and attach copies of any care plans etc.

I understand that he is reluctant for social service involvement, and whether he's slipped through a safety net of safe discharge, but in order for him to have the best chance of regaining independence in those activities of daily living, he needs some support now (the first year after a stroke is the period of best rehabilitation usually). I'd advise seeking community rehabilitation or "Reablement" which is usually via adult social services once someone is discharged. I've worked in England, Scotland and Wales and haven't been anywhere that this isn't an option. It usually involves occupational therapists and physio, with support workers for a period of 6 weeks, and would include things like Telecare (fall detectors etc). If he still has needs after this, they usually follow up with arranging longer term care or referral for major adaptations.
His cognitive changes could be down to pain meds, but could also be as a result of his stroke, Occupational therapists are usually the people who will assess/rehab this. The stroke service he came under should be able to advise, and the Stroke association will support you if you have difficulty accessing.

I really feel for you @Ilovepastafortea My ED has CRPS and it can be difficult to hug her without hurting her 💐

One small thing you can do with retro medication is get it delivered. My ED is in Tramadol and gets that delivered. It needs to be signed for, but unless you want to go out anyway, just to get some space when you get them, maybe look into it. We use Pharmcy 2U and they have, for the most part, been great.

I’m not sure why you’re ignoring all the advice about contacting adult social care and occupational therapy. You’re wrong that he can’t access support services until he’s been disabled for 6 months. This situation isn’t safe or dignified and you need to ask for support.

Thank you pam290358 I have a Motability car adapted for my needs as I'm in receipt of the high rate of the mobility component of PIP. We have a driver's centre just down the road. But my concern is the reaction to DH's meds. Frankly I've said that I don't think he's safe to drive. I've got him a pensioner's bus pass & we have regular buses that will take him into the city & many other places within an easy walk. DH sleeps well now that the Dr is on top of the pain - in fact he sleeps better than me as it takes me ages to get back to sleep after waking up to take him to the loo.

We've talked about the forgetfulness as DH is terrified of contracting dementia. We've agreed that we will keep an eye on it & if either of us feels that it's getting worse we will talk again. Thank God that we have a history of being honest with each other & tackling difficult issues head on.

OP didn’t say he couldn’t access support services for six months. She said he can’t access Attendance Allowance for six months after the disabling condition for which he will be claiming began. And that is correct.

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.

OP one more thing on benefits. Not sure of your financial situation and I realise you’re still working but if the following isn’t relevant now, it may be so at some point in the future.

If you’re on PIP Daily Living component your DH won’t be able to claim Carers Allowance for you unless his State Pension is less than the amount of CA but otherwise, he’ll have an underlying entitlement to it in the form of an additional carers premium added to Pension Credit. If he’s eligible for Pension Credit and receiving it at the moment, and doesn’t already get this you need to let them know. If he isn’t eligible for PC at present, then the carers premium increases the minimum income guarantee by £46.40 per week so it may trigger an entitlement.

Similarly if he is awarded Attendance Allowance this raises the PC minimum income guarantee by £82.90 per week so again, may trigger an entitlement.

Obviously these things depend on other household income but I just wanted to make you aware in case it may be worth you making further enquiries.