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New member - Carers UK Forum

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Hi.
I am new to this but things have got to such a point that I need somewhere to get advice and talk to others.
Up until March when the lockdown hit I was working in a school. I was also caring for my husband who has MS. I was just about coping at that point. As time went on I realised that because of my husband's vulnerability I would take early retirement. (I am 63).
I am a very sociable person and missed my friends and colleagues, still do.
My husband has good and bad days as the condition dictates. the main sticking point is he refuses to give up smoking. He only smokes outside or by the back door. Frequently this causes him to fall. As the back door is in the utility room, there is little room to manoeuvre him upright, plus I am not strong enough to haul him about! It then exhausts him to get back into a chair, but an hour later, he'll do it all over again. Sometimes he will then wet himself too, leading to another problem. He never says sorry!
Over the past few weeks we've had terrible arguments. I don't think he realises how much I have given up. We aren't having any visits from family because of the restrictions, but I have discovered our son and his partner have formed a support bubble with her parents. We have one grandson who is 18 months old. I feel useless and forgotten. People always ask how my husband is before they ask how I am.
During the night i get up at least twice to assist him going to the toilet.
He won't consider carers...that's what I'm for!
Not sure where to go from here, but my mental health is definitely suffering. I don't like to worry my son and daughter. Not a lot anyone can do really in the current state of things.
Hi Sue,
I am sure others will be along soon. I don't know what to advise. First of all, you should not help your husband up because of the risk to your own health. If you hurt yourself, you wouldn't be able to care for him. In normal times, it was correct to call for an ambulance to help people up (my brother was very heavy and they used to bring something called a Mangar Elk, a cushion they put under him and inflated till he was standing up). I think you should still call an ambulance.
I also think you should still be working at school. Has that bridge been crossed?
I can't advise about the support bubble but it sounds very tough. Perhaps people think you are handling everything well and don't consider your situation. Unfortunately carers constantly get overlooked.
Since your husband actually needs carers - perhaps a regular visit and that being the only time he's allowed to smoke! - it sounds as if he should have them.
Can he smoke indoors somewhere, have a dedicated room to smoke in? I realize that's probably not an appealing idea.
Hi Sue & welcome

Are you connected to any local carers groups.
https://www.carersuk.org/help-and-advic ... al-support If not try to join one.

You need to arrange a visit from an O/T. And regardless if you husband smokes. An O/T should be able to recommend a way or speak with your husband. On how his trips for smoking can be dealt with or not. This can then be from another person than yourself. There are times we need to use professional to speak with are care for. Even if he refuses a visit. You can have that visit in order to get support with his needs. Has there be a needs assessment for you husband and a carers assessment for you.

https://www.carersuk.org/help-and-advic ... assessment

Again you can have this assessment even if you husband refuses.

https://www.carersuk.org/help-and-advic ... assessment

What is your husband age?
Do NOT attempt to pick him up when he falls. Call the Ambulance.
They will then liase with the GP. If hubby doesn't like it, then he can stop smoking, for a start.
As for "that's what you are there for" WRONG. You are his wife, not his slave.
Are you claiming Attendance Allowance for his disability?
This should be used to PAY someone else to do some of the domestic work to save you doing everything. Not spent on fags!!!
Hi Sue, welcome to the forum

Sorry to hear you're feeling useless and forgotten, it sounds like you're anything but useless though with the support you're giving to your husband. It's important that you look after yourself too though, and get the support that you need.

Have a look through our Help and Advice pages for information about support and self-care

https://www.carersuk.org/help-and-advice

You can find your local carers group there if you wanted to connect with other carers. Carers UK also run a weekly online meet up where carers chat informally and take a bit of time for themselves. Do join if you'd like to, there's no pressure to share anything.

https://www.carersuk.org/help-and-advic ... ne-meetups

Best wishes

Jane