To think I am a carer even if dh doesn't think so?

[Stressedgiraffe]

Just had a visit from a carers nurse after a Dr referral for stress and help
Dh is recently disabled and has just been awarded esa and has applied for pip. Should be according to the nurse entitled to enhanced pip.

He has daily seizures and is often incontinent.i have to remind him to take medication, support him after seizures, clean up after him.

The nurse suggested joining the local carer's support network. Seeing if there is respite care available if needed and getting him a blue badge.

Dh has hit the roof stating I'm not caring for him. I do nothing to help him etc

I work ft. Do all the housework, cooking,cleaning laundry etc. I sort out all appointments for dcs. I'm financially responsible for everything.

So who's right dh or the nurse?
Yabu- dh - I'm not a carer
Yanbu- nurse- you are a carer

@MexicanFeast - that’s great. There was never any overt recognition of this, and I’m not even sure if jealous is the right word. Envious, maybe? Frustrated that I could do things he couldn’t? Either way, for a time, there was a definite tension and it led to him being snappy and quite unreasonable. I sympathized (to an extent). But none of that helped with the actual day to day practicalities that I could and had to do and he couldn’t.

@thesugarbumfairy - hats off to you. You must have the patience of a saint. Do you get any support at all? I honestly don’t know how you do it (and did you split before or after the illness?).

I’m sure I read a long time ago that women are more likely to stay with disabled partners to care for them and men move on. That’s certainly been my personal experience (including DM’s friend’s husband getting together with her nurse whilst she was dying). I wonder if this will change over the years. I’m not saying this is the right thing to do - there is no right or wrong. But women do seem to be societally bound to stay and care, whatever the tremendous and much underestimated cost to themselves.

That sounds unbelievably hard. Please have some virtual 💐and wine, lots of wine.

If it's recent, does your DH anticipate fewer seizures and clean up operations as his situation stabilises or is the current status your joint future together ?

If the former, I'd be inclined to ignore and take the high road. If the latter, then given your referrals you should sit down with him and simply say that your life has changed too and you would like to talk it through with someone else. The more support you all get as a family unit the better and how can he possibly have a problem with that?

But, as hard as it is for you and the family, it must be simply horrendous to be him so as long as he's not been an arse in denial for years now, I'd probably cut him some slack and just get on with what you need to do to maintain your own sanity. [and not bury him under the patio]

Frustrated that I could do things he couldn’t?

Yeah, it’s really shit- (shit to an extent and in ways it’s impossible to understand if you haven’t experienced it) when your body betrays you and you are suddenly a ‘disabled person’.

With all humiliation, exhaustion, embarrassment and fear it brings- not to mention the symptoms themselves and then the bullshit you get from society and the general public it would be miraculous if people weren’t frustrated sometimes.

Its a very difficult transition and new relationship for everyone, and if someone in the couple was a bit of a dick/selfish/useless before it’s 100 times worse.

@AloeVerity thank you. I don't get official support really. I have been given the details of carers uk but I chose not to bother contacting them. They can't do anything practically, only group meetings, and mentally I'm pretty stoic. I have good friends which is all I need. I may join a local carers network though as respite care may be useful ( I went away recently with the youngest and had to get H's sister to come watch things but I can't do that all the time as its not fair on her. He was NOT impressed every single time I told him (which was many times - memory issues)
We separated because I'd been putting up with his shit for years. He became an alcoholic during lockdown. I didn't realise for a long time. Went through a long period of him promising stuff, letting us down, doing stupid shit and basically not looking after himself, which led to him having a large stroke last summer (actually he had mini strokes before then but he wouldn't believe me and wouldn't see a doctor) He came out of hospital after a month and I caught him drinking again which was the last straw.
I stay because its easier all round. I'm certainly not a saint but I probably do have more patience than some 😂 I want to do what's best for us as a family even if its a fractured family. Its not entirely virtuous. This way I'm in control of all the finances - we have enough to live on and I want to stay in this house for at least another 4 years until the youngest is 18. I can't do that if I kick him out. The kids get to see their dad and vice versa. If he got his own place, he'd drink himself to death in a fortnight (literally as the booze cancels out his meds) and this way I can keep track of him. I don't think he is drinking at the mo. I honestly don't know how long he will last or how long I can do this, but right now its working.

His pride is not a good reason for him to tell you you do nothing for him when you're run off your feet.
He needs you to have a frank conversation with him.

He perhaps thinks that you "just" help/care when necessary?

He might not equate you doing the housework/cooking as caring.

I should imagine it's blurred by you WFH FT.

What does he think would happen if you went into the office for a day or two?

Would he take his medication?

Make sure he was safe during a seizure, look after himself afterwards?

Clean himself if necessary?

Must be very, very hard for him to accept.

Obviously for you as well.

OP, you said he doesn’t realise you do all the stuff and cook all the meals. Is he in denial or does he actually forget what you do because of the seizures? If it’s the seizures, then his comment on you ‘not doing anything’ could also be related - because he doesn’t hold those memories in his head, so when he does a quick scan of his mind to identify ‘what you do’, he finds nothing even though you clearly do lots.

Of course your his carer. It doesn't sound like he could manage living alone.

I could have written this, OP. I’m so sorry. It’s soul destroying when they won’t accept they have additional needs and the impact it has on you. Please treat yourself as a carer. I wish I had got in touch with the carers’ network sooner 💐

I think it's understandable that he is railing against his situation, but that doesn't mean it's ok to take it out on you. I would have a stern word with him & start withdrawing help if he wont back down.
You cant let him destroy you OP.

Oh you are very much his carer and I can predict if he doesn't pull his head out of his arse and belt up a bit, theres a good chance you'll stop being his wife!

My partner is also my carer - its not easy, its not nice. He does personal care, he has to help me put on underwear, socks, shoes etc. He has to make sure that the floors are clear so my wheelchair can get around.

We do have balance here though, he is the carer and I am the wage earner, it is almost certainly much harder if you are NOT able to balance things out like that.

But even so, I would not accept that him being recently disabled means its ok for him to be fucking rude and dismissive of what you do. So stop cleaning him up, stop sorting him out, let him figure out how this is gonna work if you are NOT doing any 'care' work at all.

And have a blunt conversation with him, its not easy, no one says it is, but him being a twat about it makes it harder for you both.

wtf?!

Attached from nhs website
What is a carer.

See fourth para down where it states ‘ everyone of us will probably be a carer at some point in our lives’….why not let your dh read the article pointing out para 4 especially. It can be demoralising thinking you need a carer so I’m not surprised by his reaction. You are his partner and I suppose there’s no real need to call yourself a carer when you are a partnership first and foremost ‘ in sickness and in health’ and all that.

Hope things get better for both of you.

What a thing to suggest to say to your partner.
Really!

I was a full time carer for my dsisabled son. His siblings don’t actually care for him but belong to all the young carers groups at school and college.

you do all the physical work and play a supporting role so of course your his carer. Sounds like he’s having trouble coming to terms with his disability ?

Would love to hear from the 1% who say YABU. Honestly OP, If he doesn't think you're his carer, stop being his carer. Let him clean himself, take his medicine and deal with his seizures independently. Do absolutely nothing for him, I give it an hour until he's whining that he needs help, then I'd reply, "you need a carer to help you, I'm not a carer, as you said".

Sorry I have just skimmed through the thread but I would simply stop mentioning the whole carer thing and carry on anyway.

Being ill can be frustrating, but that does not mean you have to accept him being an arsehole,
Regardless of his wishes you need support OP. And your OH has no authority over that.
I am a carer for two adult family members and I give them as much information as they need- not more.

Have you had a carer's assessment? That would be a good thing to do.
Your needs are important here. Based on that your OH may qualify for extra care. Stake your claim and be firm with boundaries- you may not want to or can do personal care etc. Lifting or maneuvering incorrectly can cause injury- to both of you.

I would also urge you to seek out a carer's support organisation- they are very supportive and a real lifeline.
My local care agency has given me 18 months of counselling for myself, helped prepare my carers assessment, provided financial advice incuding benefit applications and a great source of local help.
I have had lots of support in many ways- they have paid for my yoga lessons, organise coffee mornings, paid for beauty treatments, plus a monthly facial or massage- and always a case worker to chat with through difficult times.

Being unwell or incapacitated does not mean someone can treat others badly.

I left my OH when he was undergoing treatment for cancer.

I am disabled and my DH is my carer. It was a big adjustment when I became unwell but I would never be rude, nasty or ungrateful to DH or my family. I am also shocked at how horrible people are towards health care professionals when they are almost always trying their best to help. Being ill is no reason to behave like an arsehole, even if you feel like crap a lot of the time.

"Withdrawing help" is one thing if it is a bit of shopping or picking up after an ingrate, rather different if you are responsible for administering essential medication to someone who has not got the mental capacity to do it themselves. I don't know if that is OPs situation, but there are circumstances where "withdrawing help" puts the cared for person at risk of death, unless outside help is sourced.

This is not over dramatic.

Yes.

The ‘I don’t like your attitude/behaviour so I’m not going to help you’ thing is one of the most difficult and important aspects of caring for someone.

If you don’t want or can’t fulfil that role that’s fine- make services aware and withdraw- but you can’t just pick and choose when to do it when that means someone missing vital medication or being left in their own faeces.

Your DH was definitely out of order when he said that you “do nothing,” but I’ve been thinking about this and tbh, my Dad was a partial carer for my Mum in her last couple of years, although he never needed to help her with continence/hygiene issues.

I think it would’ve hurt her to admit that he’d taken on this role and I don’t remember anyone ever referring to him as her carer. It can be very hard to accept, even if you know it’s true. 🙁

How can you WFH and care for him? Surely that's a struggle for you.