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Carer for husband..im at the end of my tether. - Carers UK Forum

Carer for husband..im at the end of my tether.

Tell us a bit about yourself here.
I met my husband 15vyears ago..i knew he had kidney problems..but his transplanted kidney from family member was still working.
Fell head over heels quickly though didn't live together for 8 years.( I have a then 5 year old son from my previous marriage., he's now 19) .he dialysed in his flat.been through untold health emergencies.. infections..pbeumonia..you name it..
Gave him my kidney 8 years ago and, we married 5 years ago.
In the last two years the dialysis machine is now in our family home which is better for him, much better than travelling. ..more freedom etc.
My issue is our relationship..its so .. different.
I nurse at work, I nurse at home.he can no longer work but did for years and I accept he did his damndest.
He does nothing....nothing...he seems to think because he's I'll it gives him carte Blanche to be waited on.
I work, I walk our dogs 5 miles a day, after night shift. ( actually they're great for my sanity) ..i wash up, cool, clean, decorate, garden...you name it...
I know he's ill...i know all the logic..
But I am so.....exhausted...bored...tired of hearing his litany of complaints about his life...his permanent exhaustion..im 45..i have no sex life..it would be weird now anyway as he's more my patient than husband.
I don't have a young life..or freedom..or any life. I'm so drained..im terrified of looking back ehen he's gone and thinking I was a bitch for the last two years ( I'm not a bitch..!) But I'm also scared of getting to the point where I can no longer stand him...please just let me know I'm not the only carer with these conflicting emotions...?
Hi, Donna,

NO your not, there are others out there, I am one of them and I am brave enough to say.

Have strength hun, I go to Therapy once a week, it helps to have someone to talk, no judgements etc, might help.

Talk to him about as well, he might not realise how much its affecting you. I am sure there are little things he can do to help you.

Hi Donna
One of our members who is in holiday at the moment, would promptly diagnose you with Clapped Out Carers Syndrome and prescribe a break from caring, some regular respite and some counselling to help you cope.
Do you get breaks at all? It might be time to start considering becoming more of his Care Manager than his actual carer by starting to use outside carers.
Is his Needs Assessment up to date, and your Carers Assessment?

I'm currently trying online CBT counselling . My nhs area offers this on a self referall basis. I just filled in a quick online from and sessions started within 2 weeks, free of charge

I'm glad you get out and about with the dog's, fresh air ans exercise are also part of the prescribed medicine for Clapped Out Carers Syndrome.

And yes, do try talking to him, he may not realise the impact of what he says upon you.

Hi Donna

I feel your pain. I'm 42 and my wife's 45. She's had Parkinsons for three years now and I basically do everything too. No life, no sex and just the expectation that I'll do everything for her, no matter what time of day or night.

The only comfort is that one way or another it's not for ever and at some point things will get better.

What do YOU want for your future? Have you fallen out of love? Marriage is a partnership, give and take on BOTH sides, sounds like you are doing all the giving and he's doing all the taking!
It's time for you to have counselling to talk about how you are feeling and where you go from here. I found counselling hugely helpful when dealing with my elderly housebound mum who seemed to think I should do everything just because she couldn't.
After I was widowed I bought a book called "Starting Again", by Sarah Litvinoff. Really aimed at divorcees, but also relevant to widows. It contains some useful exercises looking at how you spend your time now and how you'd like to spend it in the future. I suggest you get a copy (easily available on ebay) and work through some of the exercises.
When did you last have a two week holiday free from caring? That's what you need. I can't manage without holidays now, they are absolutely vital to distress and sleep, and sleep.

I only have one kidney now, I know everyone says you can manage just as well with one, but I've never managed to get back the energy and vitality I had with two.
This is a really difficult problem. Being both partner and carer is tricky, and it's only natural that resentment rises to the surface. You do have reason to feel this way. It's totally rational and you should not feel bad about it. If your husband is still capable of doing some things but doesn't do them, then you need to have a talk - perhaps with a mediator in the form of a family member, a friend or professional.

it might be worth getting someone in for a few hours a week to do the caring work, while you enjoy some time with your husband just as his partner- a walk, cup of tea, etc.

My husband has Multiple system atrophy and is virtually paralysed,so I do have to do absolutely everything (my stuff, his stuff and our stuff). It's beyond exhausting, physically, mentally and emotionally. And I do resent him at times (or resent his illness) which makes me feel bad, like a spoiled brat, but I'm trying all the time to work through it. I just keep thinking, if I were in his place, how would I like to be treated? It doesn't always work, I must admit! We are only human, after all.

The other problem you have is dealing with your husband's low mood. It easy and unstandable to fall into self pity when you're incurably ill , but it is hard on the partner to remain cheerful in the face of that. That is why a talk is good: most people are not aware of how their moods affect those close to them, so a frank conversation is the best way of moving forward. But it is not easy.