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Newbie South Wales; feeling down - Carers UK Forum

Newbie South Wales; feeling down

Tell us a bit about yourself here.
Hi I'm new to this forum, been a carer for my husband for about a year now, who suffers from Huntington's. Looking to connect with people in a similar position. 🙂
Sharon_1911123 wrote:
Sun Nov 24, 2019 8:46 am
Hi I'm new to this forum, been a carer for my husband for about a year now, who suffers from Huntington's. Looking to connect with people in a similar position. 🙂
Hi and welcome!

Can you tell us a bit more about your husband or not?
My husband is in the early stages of Huntington's disease. He's 52 and has given up work. I'm a full time carer to him 50yrs old,
Hi Sharon ... welcome to the forum.

One link of immediate benefit for you ... Huntington's Disease Association ... branches and support groups :

https://www.hda.org.uk/getting-help/bra ... ort-groups

Also , their very own message board :

https://hdmessageboard.com/login

( Need to become a member first ... as far as I can tell , it's free to join. )

Feel free to tax our knowledge on benefits / housing / care support / financial planning etc. ... the choice is yours.
Thank you so much I'll have a read of them after. 🙂
Your welcome.
Hi I'm new here, not coping at the moment. I'm a full time carer for my husband who suffers with Huntington's, he's 52 and I've been feeling low since giving up my job about a year ago. 😔
Hi Sharon, welcome to the forum.

Work doesn't just give us money, but different people to talk to, especially other "girls".
How much help does your husband need now? Is your house as easy as possible to look after, and adapted for his needs?
Do you have any outside help, or dedicated "me" time?
Hi thanks for the reply. He can manage for a little while but when I'm out I worry if he's ok. He won't accept any outside help, won't take any medication for his movements etc. We have an appointment with a specialist nurse once a year if we are lucky. Other than that nothing, don't want to give up the family home just yet, but yes it will need adapting or moving. Don't have 'me' time friends move on, don't go out now unless it's with family. Haven't seen or been out with anyone other than family for about 18 months. I also look after my grandson who's 11 months old as much as I can.
Sharon, it doesn't have to be like this!

It can't always be about what he wants, it must now be about what you want IF you are going to continue caring for him?
He needs to understand that you CANNOT be forced to care for him, even as his wife. Although he may feel as the husband he is in charge, the reality is that he cannot be in charge any more. YOU are now in control of things, whether he likes it or not!!
The brutal truth is that if you get ill, or walk away, there may be no option left but residential care.

Let's start with the basics.
Your husband can have a Needs Assessment from Social Services. Yes, I know he wants you to look after him, that isn't what this is all about. If he is assessed as needing help, then either he can have outside help arranged by Social Services OR he can have a sum of money, a Direct Payment, so he can arrange something himself.

You can have a Carers Assessment from Social Services, looking at what YOU need to support you in the caring role.

If the house isn't suitable for his disability, you DON'T have to move, you can have it adapted. Is it your own home, or rented? Either way, you can apply for a disabled facilities grant, but first, need an occupational therapy assessment, which your GP or Social Services can arrange.
Do you have a washer dryer or tumble dryer?
A dishwasher?
Everything that saves time is worth considering, because it's impossible for one person to do the work of two, long term.

I'm a great advocated of flattening all flower borders, I had to do this after I was disabled, now my garden always looks tidy, my sons mow the lawn, and that's it. I have a patio with flowers as well.
Does he have any male friends, does he ever go out without you?
If you are worried about him when you go out, make sure he gets a pendant alarm.
You need to have some time off and something to look forward to, ideally with other women to chat to. OK, he doesn't like it, but then you don't like his HD do you? Hate the illness together, but don't end up hating each other and the life you still have together.