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Can't, Shan't, Won't and just don't want to. - Carers UK Forum

Can't, Shan't, Won't and just don't want to.

Tell us a bit about yourself here.
I'm not looking for sympathy I just want to get something out. I know there are so many loving hard working carers out there - it's just that I don't want to be one of them.

We moved to the other end of the country last year and a few weeks later my husband was diagnosed with cancer - it was hell but we got though it, we supported each other emotionally and I took on more of a carer role. I love him deeply but i struggled, I felt more like him mum than his wife (I don't have kids). We stopped having a wife husband relationship and it was hard because I couldn't emotionally be both a carer and wife! He went in to remission in November and we started to rebuild out lives, we were slowly becomming husband and wife again.

Now he's just had a massive stroke. He's got very little use of his left hand side, no drive and poor motivation to eat or drink. He has most of his memory and in a way is still all there but he has no sense of responsibility, risk or danger and takes no responsibilty for the left hand side of his body. He's unlikely to work again and we are now flat broke - I stopped worked when we moved area to help him through the cancer. I've just started my own business but it's going to take a while until it earns enough to pay all the bills. I work a lot of hours at odd hours of the day and evening.

I am 40 years old. We have not lived together full time for the last 7 years as he worked away (appart from 4 months during the cancer treatment) and we were happy with just seeing each other at weekends as we were both very independent busy people.

Now I am wondering what our future holds. He's still in hospital and I wonder will he be able to come home? If he does will I have to supervise him 24/7 as he is likely to falls or try to drive the car? I simply don't want to have to stop my life to supervise him. I can't do it - i know i'll grow to resent him and I will feel trapped. He's always been a selfish man but that was okay as I am selfish too. We both have tempers (not violent) and were passionate people. When we did live together we both worked full time and he'd not lift a finger in the house - he paid a cleaner to do his share instead!

If he can't come home he'll be so unhappy and I don't want that . I suspect that he'll just demand to come home pretty soon and refuse all help from anyone but me. He's already playing on my emotions with refusing to eat unless I am at the hospital - he would never have done that to me before the stroke. The nurses have warned me that he's trying to manipulate me.

I feel totally trapped. I have friends who are carers and they are either very unhappy or constantly struggling to pay the bills - all of them are older than me and showing signs of stress and ill health.

I want my husband and my life back! I wnat to be a wife.
Hi Karen, welcome to the forum
Of course you want your life and your husband back - this has come as a massive shock to you. A stroke is a life-changing event. No one can force you to care - even if its your husband, although there is likely to be lots of pressure for you to do so. It is your choice. Although we here are all carers, I know how hard it can be - I came close to leaving my husband after the accident that left him disabled. You need to look at all the alternatives and especially the cost - care homes can be pretty expensive. Some people use PAs.
He will probably go into a rehab unit before he is discharged and it would be very unlikely to have him sent home for you to look after him all by yourself - he should have a care package in place before he is discharged.
Talk to all the therapists and doctors to get an idea of what he can and cannot do before you make a decision about the long term. Remember that these are very early days and he could well improve.
Hi Karen, and welcome Image
You've had a massive shock and a massive change of life all of a sudden, and at a young age. As crocus said, your hubby will probably go into re hab for a while, so don't make any snap decisions, but sit down in peace and quiet, make a list of pros and cons, do's and don'ts, and how you feel about each one. Then look at it again in a few days with a fresh pair of eyes. Do you have any family members who could pitch in and help?
I am a former carer, first to my mum, then husband, both of who have now sadly passed away. The husband/wife versus carer/caree relationship is a tricky one to negotiate and like you said, you cannot emotionally be both at the same time. When Hubs was too ill for us to have a husband/wife relationship, we used to flirt a lot, and then collapse into giggles. Maintaining a sense of fun helps, I found.
There is no magic answer, only you can decide, but you will find lots of support on here regardless.
Good luck,
Love phoebe xx
Hi Karen

I concur with Crocus and Phoebe, their advice is spot on. You will always have support and advice on here. Good luck and I hope your Husband improves x
Hi Karen
My god my heart goes out to you. I do understand how terribly desperate you must be feeling. I am not facing the serious situation you find yourself in - yet. But I know that that is what is definitely in store for me.

I hope you can find help and a way through this. I am thinking of you.
Hi Karen,

It was because of your post that I decided to join the forum. Your story is so like mine. Make sure before he comes out of hospital that you know exactly how disabled he is. When my partner first came home I was pushing him around in a wheelchair, he was sleeping downstairs and having a strip wash every day. We ended up paying for a starilift which wasn't cheap. Apply for disability living allowance. Its not means tested so it doesn't matter how much you earn. It helps towards care and getting around. The motorbility car scheme is good too.

Sorry, its all a bit jumbled!! Hope things improve. Keep us posted x x
Hi Karen ,

Its cr*p..totally, I was 30 with 3 very young children when my OH had a multiple strokes age 30....I remember feeling the sheer panic...and the pressure from his family and lack of support from my family, who felt MY life was over . The consultants and hospital gave me no choice..."take him home and do your best"....that was it.
I think you have already made your own mind up ...and you will not be alone ...its very common for partners of stroke survivors to leave...what ever you decide to do , the decision is yours and no one can judge you..they are in your situation....
i can tell you its been a hard long journey and the relationship changes..there are many lows ...but there many highs and positives too..
prehaps contacting http://www.differentstrokes.co.uk/ might help , the support young stroke surviors and thier partners .
i always say ...walk a mile in my shoes....before you judge.
Hi and welcome,

I think most carers end up being carers through no choice of their own and some find the role easier than others. But most folk come upon this forum because they are struggling and needing support at some time or other.

Have you read, The Selfish Pig Guide to Caring, I think it might ring a few bells for you.

Thank you everyone. Hes recovering well but there are still some huge issues to overcome before id consider having him home which ill save for another post xxxx