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.

I’m sorry. This sounds very hard.

this is the time to reach out for support. Can your children or friends help with some of the errands? Are there local charities or Age UK that might help?

and look into getting some counselling for yourself- this is a major challenge in your life and talking things over with someone can help you find ways to cope.

finally, is your DH getting serious support with his ongoing pain? Not just meds but also appointments at the pain clinic and strategies to find and deal with the cause of the pain. If not, kick up a fuss and help him get support. If he minimises the pain when in front of the GP (as some people do to seem strong), he won’t get the support he needs.

Oh honey, such a big change to both your lives. You really sound like you need additional support. Have you contacted SW or asked the gp to contact them?
Sending big hugs xx

Sorry to read what you are going through. Can you try to get him a Blue badge which can make things easier although I guess you may have one yourself if mobility is poor.
What happens when you are at work if he is unsafe to be left or do you wfh?
When you make the AA application please make sure you send as much medical evidence as you can. I find they are buggers for turning down applications for people at the lower age range for AA and for people that only have upper body restrictions( just my experience). So please make sure you focus on the balance issues as well. send in hospital discharge and A & E summary.

I’m so sorry, what a sad and hard situation for you both. You probably need to ask for a benefits assessment to be sure you are getting everything you are entitled to. Possibly DLA, attendance allowance, carers’ allowance or something.

It would have been hard even had you been in full health yourself. This may sound silly, but have you already stopped doing things that aren’t essential? I only mention it because DM was very routine focussed and it was hard for her to ‘lower her standards’ a bit while they adjusted to changes in circumstances. She insisted on seasonal curtains changes, ironing every last item that got washed etc. Sometimes it doesn’t occur to us to get ready prepared veg or ready meals for example.

You need to look after yourself as best you are able. It isn’t lazy or selfish to prioritise your own needs- put your own oxygen mask on first, and all that!

Is he having Physiotherapy and has he seen an Occupational Therapist?

I’m sorry, that sounds really hard.

Definitely worth checking that you are getting all the help that you are entitled to, monetarily or otherwise. Age U.K. were amazing when my neighbours were in a similar situation, as was a charity specific to their condition.

A rough time. Get a carers assessment for both of you. You may both be entitled to help. get age uk person to talk thru forms with you
Longer term,
Would you consider moving to the city?

OK pure practical advice:

Contact his GP, ask for an occupational therapy assessment as a matter of urgency
https://www.nhs.uk/tests-and-treatments/occupational-therapy/

There are some brilliant bits of kit out there which may help him with things like doing up buttons (a button hook) or adaptive clothing which have magnets for buttons so require less dexterity.

He also needs physical care, so an assessment for carers ie to get him out of bed in the morning, change him during the day and this shouldn't all fall to you to manage.

Sounds like he may also benefit from aids in the house for walking and balancing including for the toilet and washing etc.

In short, you need help, help is available and it's time to call it all in....

You also need respite for you, and to be able to go to work without him falling at home.

Ref the medication - have a look at an online pharmacy who will deliver to you via Royal Mail, I use Chemist4U. I can still have urgent prescriptions sent to a local pharmacy if needed to pick up the same day.

Have you both had OT assessments and social care assessments. They can give support that can make life easier for both of you.
Have you spoke to your DH about intimacy? I'm sure there are ways you can get back to being intimate. If you've not spoken about it your DH could be thinking you've gone off him because of the changes to his abilities.

The lives of you and your DH sound so very hard OP; I'm so sorry to read of the truly difficult problems you both must face, everyday and even every night.
Sending you a hand-hold.
I can't help with practical advice, as PP has posted and hopefully others will also offer suggestions to make your lives easier.
Btw, Gabapentin isn't an Opioid or Opiate.

However it is a classified medication with a high potential for misuse, similar to opioids.
Since 2019 it's been regulated as a Class C controlled substance, which now requires tighter prescription controls.

Although this makes no difference to those who must wait at the chemists for the second authorisation.
Gapapentin is primarily prescribed for nerve pain and epilepsy, not for opioid - like pain.
I truly hope you'll get some good and practical suggestions on how to make both your situations better OP.
It's heartening to hear how much you love one another through all of these difficult times you're facing together. xx

And yes to ready meals deliveries
Frive is good

Get carer assessments
Tell gp and adult care sw what you said here

but spend some money if you can on home help

On a positive note op, gabapentin can be highly effective for nerve pain control so hopefully he may see a good improvement.

Ask for help from the stroke team and/or GP - any physio available, and you need an urgent home assessment by occupational therapy regarding raised loo seat, grab rails, bannisters etc.
Stroke symptoms can improve over time with rehab. Hopefully his hand pain will
improve - difficult to know if the function will change.
If he needs ongoing help with washing/dressing and you aren't well enough to help you could get carers - but that costs money.
Talk to your own GP about being stressed and struggling - assuming you're not already signed off work you may need to be.

Definitely ask for assessment from adult social care.
You may be able to get a care package and have carers come in to help him with things like dressing. And ask for an occupational therapy assessment. They may come and fit grab rails etc.

So sorry. It sounds really hard for you. Does your DH still want intimacy? If so, perhaps between you, there is a way you can both be in comfortable positions. Maybe it's time to look at moving from your rural situation to a retirement apartment in the city, where life will be easier. Lean on your family as much as they are able to help you. Things will almost certainly get better gradually as you both adapt . Meanwhile, I wish you much fortitude

💯 this. OP do not tell the assessor that you're going to reduce your hours to provide more care. They don't provide enough care anyway so get all you can for him. You're at risk of depression or burn out, with your own health needs (arthritis is only going to get worse too) and having no life. Keep your job as a break from caring if you can. Carers allowance is less than £100/wk. Working yourself into a grave isn't going to help him.

IDK how realistic this is but if the hand is useless and causing pain would amputation solve at least the second part of that?

If you've no physical intimacy now and that isn't fixable, then if DH can't be cared for at home a care home might be more appropriate for him, sad as that would be. You'd miss having him around and I don't suppose it's what he wants either, but it would take the pressure off you so you could retain what's left of your own health for as long as possible. It's likely to be the end result anyway once your own health worsens over time or with age.

Cocodamol is the opiate, gabapentin isn't but gets abused too, so pharmacy can be strict with the rules around both.

I'm really sorry you're in this situation.

I'm so sorry.

I used to be wary of cuddling my late husband too - his stroke side used to hurt. We managed to cuddle to an extent, but I had to be careful not to hurt him.

Was your DH not given any physio or OT input? (I know that it's very inadequate in many places)

In my husband's case, I think that someone from the Stroke Association applied for the Attendance Allowance for him before 6 months was up. (DH was in hospital for 4 months. Someone came out to the house when he got home.)

Your DH should get the higher allowance.

With regard to the Carer's Allowance, I think that they also take savings into account. I cut my hours to a 4 dy wk when I was 57. At 58, my boss refused to give me a 3 dy wk, so I took early retirement. My reduced work pension meant that I couldn't get the Carer's Allowance, but I did have an entitlement to the underling Carer Credit, which meant that my National Insurance contributions were automatically paid for me.

The hospital should have given you OT input for things like adaptations to the house etc.

Once you reach pension age, given what you've said about your own health, you might be entitled to AA yourself.

Each of my parents had it. The fact that they were deemed to be one another's carers meant that - much to our surprise - they also had an underlying entitlement to Pension Credit. They previously failed the means test for that, but there's no means test for the underlying entitlement. Someone from the council sorted that out for them.

With regard to the painkilliers - the problem is that some of those can make you more likely to lose your balance. It's very difficult.

Is there any possibility of your children taking it in turns to come and watch your Dh from time to time, just to give you an occasional day out on your own, etc?

I had to do it all with my husband, and being without down time is stressful. (DH had two adult children, but they only wanted to know about 'fun' stuff. They lived a good bit away, but would come up to Scotland for holidays - only staying with their mum and her various partners, however. In the 4 months DH was in hospital, there was one half hour visit from one of them.)

If you tell your children that you're just looking to get an occasional day out at the shops, etc, they might be willing to step in to give you a break?

@Whyarepeoplesuchwankers

I agree about not letting on that the OP is thinking of cutting her hours. Hospital staff seemed astonished that I didn't quit my job straight away. I'd have been in dire financial straits had I done as they expected.

Amputation probably won't help. You can get phantom pain even after an amputation and stroke pain is a weird phenomenon.

At the beginning, my DH lost sensation down his stroke side. Then he got pain down that side.

We only found out too late - 7 years after the stroke - that there are desensitisation protocols that can help with the pain. Maybe the OP could ask the medics about that? (We only found out after DH had been admitted to hospital with acute kidney failure. He was assigned temporary carers when he got home, and one of them had worked with stroke patients.)

Our house was assessed by an OT before DH got home from hospital. He was provided with a shower chair - we had a wet room for my mum - and an extra hand rail was installed along our staircase.

I'm appalled that the OP has just been left to get on with it, but not surprised.

A private pension has no effect on being able to apply for carers allowance.

I stand corrected, in that case. I was under the impression that all income counted.

ETA Well, it turns out that I could have claimed for a couple of years. Never mind. I'm glad that you pointed this out - it might help someone else.

No. It's just earned income. Income from a pension or investments doesn't count, but it is incredibly difficult to get confirmation of this. Our accountant didnt believe it!

A bit late for me, but I'm genuinely glad that others have corrected me - it might help the OP.

I would ask for a carer's assessment. Mine gave me 72 hours of PA support for someone to watch my adult daughter while we go out. Plus a £200 well being voucher. It all helps x

This thread has just confirmed what I already knew - you get more information from people who have been through a similar situation than you do from the authorities.