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Disabled husband not sure how to help - Carers UK Forum

Disabled husband not sure how to help

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Hi,first time posting here,looking for advice. My husband has cerebral palsy. We both work full time but more recently his condition has deteriorated. He is in pain, extremely stiff and his mobility is worsening all the time. Unofficially I'm his carer,I help him with most tasks, dressing etc and also look after our home and children. Im ashamed to admit that I'm really struggling. For the last few months it seems like there is a third person in our relationship...since deteriorating hubby is now obsessed with his disability. Every conversation comes back to it,if I'm poorly he's worse etc. I've tried to tell him I feel like a carer not his wife. I think he needs support other than me,how to deal with psychological aspects of his disability but he won't listen. Our GP doesn't really know what to do with him and nor do I. I try to help he thinks I'm nagging. I want to be there for him and help him but when I'm met all the time with resistance I don't know what to do. I feel so stressed and helpless. The man I fell in love with is now living through his disability. I'm not a selfish person I just want to do right by him and us 😥😥
Hi Tracey,
It sounds a difficult situation, something has to change, but working out what to do for the best is difficult. If you could give a bit more information, we might be able to make a few suggestions.

How old are those in your family? It sounds as though you are exhausted and frustrated. When did you last have a holiday?
Is the time fast approaching when your husband needs to reduce his hours in the interests of his health?

As the GP can't help, when did your husband last see a specialist or physiotherapist to see if they can suggest any treatment or therapy to help with the discomfort etc.?

Could you reduce your hours to give you a bit of time to yourself?

I was disabled in a car crash a few years ago, and could hardly walk for five years, but had a disabled mum and son with learning difficulties. I know what it is like to be pulled in all directions!! I decided to make some really tough decisions. The flower borders in my large garden were all flattened, and my son with LD cuts the lawn with his little garden tractor.

I got rid of lots of things, the china cabinet and jubilee mugs (my late husband's), a bureau, books, all sorts of things, to make looking after the house easier. I have a dishwasher, a washer dryer and a tumble dryer, my mechanical slaves. I changed what I cooked slightly, more casseroles/pressure cooked meals meant less washing up. Each gave me a few more minutes, but much more time in total.

I also found juggling everyone's needs difficult, until counselling helped me set my priorities. Son first, as he couldn't speak up for himself. Mum could, and could also afford to pay for a gardener, cleaner, etc. Maybe counselling would help you too?
Hi Tracey
Have you checked for websites specific to cerebral palsy as they may have sections for carers, and for him to access too.

The other thing I would do is show him what you wrote as it says it all so well.
.Pick a good time and treat it as an adult to adult discussion,
I.e.no blaming, speak from the heart using "I feel..." rather than "You make me feel..."
Carers are allowed feelings and emotions as much as carees are

To be able to continue to support and care for him you do need to set limits to protect your own health and mental well being, even if he doesn't see that. This is especially important in any long haul condition.

It's likely he had a form of depression too, and that makes one very self centred. It may need treatment but he will have to realise this himself to get help. Maybe reading your post will help him see this.

Kr
MrsA
Tracey_1903 wrote:
Tue Mar 05, 2019 1:12 pm
I'm ashamed to admit that I'm really struggling.
You have nothing to be ashamed of, that's for certain. It's a difficult situation and one I know only too well. I'm not sure I can tell you how to cope with it as I'm not convinced that I'm getting it right here anyway.

My wife has MS and can no longer walk, her left arm is useless and the right is not much better. I do absolutely everything, apart from four mornings a week when a carer washes and dresses her.

The biggest problem I have is that she is convinced that one day she will walk again (she won't, unless a miracle happens) in the meantime, she is just killing time waiting for that to happen and doesn't want to do any of the things that we used to do unless she can do them exactly as we did before. It doesn't help that her memory is also going and I believe that there's a bit of dementia creeping in too.

Conversation is almost a waste of time as after a couple of minutes she can't remember what she's already said. She has developed a tendency to make strange assumptions when we do have a conversation and bases her side on those,(this is not personal stuff I'm talking about, it could just be a news item or a TV programme), it's usually impossible to comprehend how she came up with whatever it was, which makes any meaningful conversation almost impossible. There's no companionship, no warmth or tenderness, no sex, no life really. Despite still loving her, I find it increasingly difficult to actually like her any more.

I tend to ignore everything now, I make sure she's fed and watered, catheter bags emptied regularly, bum wiped, etc., and try and get on with my life without her, it's by no means ideal and I can't do everything that I'd like to as caring is so time consuming, but I do what I can. It's not what we wanted for our retirement but it is what it is.

To sum that up, when you've done what's necessary for your husband, do something for yourself.