Should I give up being a carer?

Hi to you all
A classic dilemma for carers is when to admit you can’t go on and the only option is a care home. My family - and some of his - are trying to persuade me, my husband is adamant he wants to be at home in spite of the fact he can’t move at all. He is totally dependent on me for everything and my back is suffering as well as my nerves. Carers coming in did not work for us, we never knew who was coming or when, so we rely on respite care. There are no more practical ways to make life easier for either of us at home but how do I persuade him to accept the inevitable? He has mental capacity but can’t/won’t make any decisions or understand my situation. Any insights or advice gratefully received, thanks.

Hi LIndsay, how old is he, and what is wrong with him?

Thanks for your interest. He’s 78 and has cerebellar ataxia, which most people have never heard of (including the GP). It’s progressive and causes muscles to waste, hence a fit active 6 footer is now housebound. It has affected thinking and behaviour a lot too. I could go on but suffice it to say I don’t think I can cope physically or mentally any longer. He is not listening, or thinking about me at all. I know carers have to put themselves first occasionally put it’s so hard to do. Lindsay

Is your husband under a specialist?
It’s OK to say “I’ve had enough”. What you now need to do is work out where to go from here.
When did he last have a Social Services Needs Assessment, and you, a Carers Assessment.
Between you, do you have over £46,000 in savings (Yes/No)
Do you have Power of Attorney?
Are you over 60?

Hi Lyndsay
So the first foray with paid Carers didn’t work out, but that doesn’t mean another company wouldn’t be better. Or you could arrange it yourself by hiring direct using either direct payments (if council is funding) or paying them directly. Some care agencies supply just this type of dedicated care

Oh, have you also looked into CHC where NHS pays… he ahs a medical conditon after all

At the moment no one wins, you cannot carry on alone and hubby won’t budge. There has to be a middle ground.

P.S. what happens to him if you get ill and hospitalised? Could you take a short break away so he can realise what hes missing?


If not , alternatives ?

Main thread :

In short, yes you should give up being a full-time hands on carer. You will still be his carer when he’s in residential care, just in a different way.

My husband is in a nursing home because of strokes and vascular dementia. After the shock of everything that happened, tears guilt etc, I now see myself as over seeing his care. I do too believe me,along with my daughter’s. He is still dearly loved, no doubts about that. We still care.
Just hoping it will help you to see a different side of emotional heart breaking situations.

Many thanks to all who have replied with constructive suggestions, much appreciated. I especially like the idea that I will still be overseeing his care if he goes into a care home. As to the CHC assessment, I really tried to get it, using contacts, skills and knowledge acquired when working as an NHS academic, but because he doesn’t need nursing care he didn’t qualify. But then he was only rated ‘moderate’ for mobility because he can cooperate when being moved. The fact he cannot stand let alone walk counts for nothing. I could go on…
At the moment I am talking to his three daughters, two of whom have power of attorney with me for health and welfare. As he has mental capacity we cannot just go ahead and do things, he has to agree, so round and round in circles we go.

A refusal for care under CHC is NOT forever.

Why not try again ?

If not , NHS Continuing Healthcare / NHS Funded Nursing Care are both alternative options ?

If you can’t stand, you are at less risk of falling, so don’t score as highly. That’s what they told me when my mum was turned down!

Mmm, Some of the residents at hubbys nursing home can’t stand. They think they can, and try, and fall forward. Surely thats a risk of a fall, out of the chair. Can they argue with that if said to them?? Expect so but it’s worth saying. (Hubby is at risk of falling when they shower him, apparently he falls to one side if the staff aren’t careful. Some staff are too worried about showering him. Some are ok with it. The ones who are worried then don’t as far as I’m concerned, because he will pick up on it. )

Lindsay, you say ‘he has to agree’…but so do YOU! ie, it takes two to tango

Explain that to his daughters for a start, so they understand YOU have to ‘consent’ to anything that happens - it is NOT just what HE wants.

That said, depending on his financial situation, could you agree to ‘half and half’ where he spends half the month in a care home, so you have a fortnight ‘off’ and then you could cope with him at home for the other two weeks.

Grimly, what is his life expectancy likely to be at this stage of his illness?? If you are looking at another decade or so ‘as is and worse’ then you MUST think ahead, and not just exist in ‘daily coping’.

YOUR life is as important as his, even if he no longer has the mental capability of understanding that.

It’s a desperately sad situation, but he MUST allow you some quality of life that is ‘worth it’ for yourself.

“He doesn’t need nursing care…?!”
The legislation says that CHC should be available to people who need more care than Social Services can lawfully provide, or similar.
Social Services limit of care is usually four visits a day. So when did he last have a Needs Assessment from Social Services? It should be updated regularly, especially if his Needs are increasing.
When did you last have a Social Services Carers Assessment?

There are a number of very well educated people on this site who have also struggled to get their carees the care they are entitled to!