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Huntington disease - Carers UK Forum

Huntington disease

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Hi first time on forum i am a carer for husband diagnosed with Huntington disease 2015 finding work so hard working 15hours per week plus having health problems myself thinking of giving it up but so worried of which. benifits or if any at all I have c/a at moment I feel so alone any advice would help
Hello Jean and welcome to the forum.

I suggest that you contact the Carers UK Adviceline team as they are the experts on all matters related to caring and benefits. They will be able to advise you on what benefits you and your husband could be entitled to.
Need expert advice? You can talk to the Carers UK Adviceline five days a week, no matter where you are in the UK or how complex your query is. We do benefits checks and advise on financial and practical matters related to caring.

Freephone: 0808 808 7777
email: advice@carersuk.org

Carers UK’s advice and information team based in London is undergoing staff changes. This means the Adviceline is closed on Thursdays and Fridays whilst we recruit and train new members of staff. We will be taking calls on Monday – Wednesday between 10am and 4pm. . You can email or write to the Adviceline and we will respond to your enquiries within five working days.

The Carers UK Adviceline also includes a listening service, there for you to talk through your caring situation with a trained volunteer who understands what you are going through. Available Mondays and Tuesdays, from 10am to 4pm.

If you can’t get through on the phones (lines are often oversubscribed) then send them an email, they’ll usually get back to you within 3-5 working days.

Have you had a look at the Huntington's Disease Association's website yet ? https://hda.org.uk/hd/what-is-hd - they also have a forum which you may find useful.
Hey Jean

My Dad has HD, (plus Aunt and 2 of my Uncles died from it). My Mum valiantly tried to look after my Dad all by myself for many years until this March when she was diagnosed with Alzheimer's herself.

If you haven't already I would definitely contact the HD Society. They have regional advisers who can come and see you and your husband and give advice.. They are massively overstretched tho, so help can be slow and a bit patchy!

Do you have a good specialist for your husband? Mum and Dad were abandoned after diagnosis and my sister had to massively push for a specialist to see him. Once this happened they came to see him at home every 6 months, which was great.

You really need to read "A Selfish Pigs Guide to Caring" this was written by a lovely man called Hugh Marriot who's wife had HD. I had the honour to meet him over 10 years ago when we lobbied the HDA to get an online forum. (And he was very far from being a selfish pig!),

Have a good think about whether you want to give up your job. Can some of your care responsibilities be the thing that goes instead? It is so important to have something outside for you, If not work then hobbies and friends. My Mum gave up everything for my Dad. The end result is that he is still in a nursing home (a lovely specialist nursing home) and she is now in VERY bad health herself.

If I can help in any way please let me know.
Hi Jean
The decision whether to give up work is a very personal one. it depends on so many factors: financial, social, health, support to name but a few.
Do make a list of the positives and negatives, it really does help to write them down and add to it as you think of more. its not a decision to be made in haste or when one is feeling low.

If you are having health problems of your own do go and see you doctor and see if you can get better somehow. Its doubly difficult to be carer when one is ill too, and what would happen to your caree if you become to ill to look after them?

Work,as well as money, can bring friends, social interaction, alleviate loneliness and isolation, gives a sense of self worth and is a form of respite from caring.

So, sorry there's no easy answer, its decision only you can make for yourself. youll get plenty to think about from other posters too, I'm sure

Hello, me again

I've just been thinking of you as I walked the dog. Please don't answer this if you don't want to, but if it would help to talk please do. My Dad had the test for HD over 10 years ago and it devastated our family. Did you know it was in your family or was it a complete surprise? Do you have kids who this affects too? How old is your husband? My Dad's onset was fairly late. Getting any illness is tragic, but the genetic nature of HD can be particularly devastating. So please get in touch if you need to (or ignore me if I am wide of the mark!!). x
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