Advice on wife's huntingtons disease please (family and financial)

[Damonlufc88]

Ok this will be kids of brief facts sorry to be so direct.
She works in a nursing home. Latley she has been having problems swallowing and getting quite clumsy.

She has known since she was 18 when we met, now 30

Has applied for other jobs (shops, cafe, etc) around school hours and my rotating shifts and stated she has huntingtons, because she has various social support groups and frequent appointments it's only right that any future employs know this.

I work rotating shifts. I'm seriously thinking of requesting to do permanent AM shifts via letter to HR stating why (huntingtons, making easier routine at home for our kids, one is autism diagnosed (fully aware of how HD works with kids, both kids were Pre planned))

Financial If my wife just gives notice and leaves her job would she be entitled to anything financially? Not asking alot. Just enough to cover her wage. She is on just above min wage and works maybe 20-25 hours per week. I'm worried that she won't beause she has left off of her own back.

Any question's or advice please add. I will reply but not sure how to tag people directly

Is she on a gateway benefit? So PIP for adults

It depends on how much you earn. If she leaves and applies for benefits and you are in a universal credit area they will assess you on joint incomes so your earnings will be taken into account.
You should ask advice at your citizens advice centre or something similar. You can go on to a sire to check what benefits you are entitled to. Put in details of what money you would get coming in if she wasn’t working www.gov.uk/benefits-calculators

No advice, OP, but I saw your other thread and I'm sorry for the situation you're in. I'm afraid I don't know what benefits (if any) your wife might be entitled to, but I just wanted to say that there should be support for people in circumstances such as yours. Huntington's is a cruel disease, I really feel for you and your family.

Hi there. I work a lot with people with HD. Has she applied applied for PIP? In the early stages, the cognitive effects on planning, multitasking and organising have more effect on ability to work, so she should stress that aspect. Your local Huntington’s disease Association advisor should be able to give some pointers.

Thanks for the responses guys. She isn't currently receiving anything financially apart from her wage and child tax credit, which isn't much for out 2 boys. My wage isn't brilliant. Although I work 40 hours per week I would say its around 17000 after tax

Like I say I have no idea where to start. My oldest son is autism diagnosed and it took us 4 months to realise that he was entitled to DLA and that was only advised to apply through this forum. Seriously have no idea where to start tbh

Hi @Damonlufc88 I replied on your other thread. Please please get in touch with th huntingtons disease association HDA. They have on call advisors who you can talk to. They have also local support workers in your area who can give advice on practical matters and benefits etc. I'm in Lancashire and we have a support group that meets every few months. There are a few good Facebook groups also with people going through the same stuff just search huntingtons in the search bar and have a look and find the uk ones.

If your wife wants to work that's great but if it purely through need and she would be better not working right now then the HDA advisors can help you with benefit applications. Do not try and figure it out alone there are people able to help. I have just got back from the weekend conference and it's just about knowing where to find support. I will try and link to some of the groups if I can work out how

Hey @sparkleyes was that the conference on Derby. I only found out about it today so I'm a bit annoyed as we would have attended as its only a 45 minute drive. From what I have been searching today the HDA Society is the only thing the UK provides so I'm going to get involved with that alot more over the next 36 hours or so, I imagine phonelines don't open on the weekend. I do appreciate your post here and the other thread too. Just feels like we're at the bottom of the ladder at the minute

Yes @Damonlufc88 I joined as member a month ago and only decided to go last minute. They hold these once a year and children are welcome and taken off for a day of fun kids stuff like laser quest etc.

My kids don't know about hd yet, that is the next challenge but the HDA can provide a great support. I met a few people local to derby and said the hd advisor there is really great, the support group will put you in touch with other people too.

I only found out about a lot of this tuff by searching huntingtons on mumsnet And some lovely kind mumsnet gets who have hd or hd in their families sending me messages. It is all very new to me but there is a big community out there who are going through the same things xx

Not mumsnet gets, mumsnetters

@sparkleyes
Really wished we had known prior to this now. I've seen it's on tomorrow too but as not a member of any think and its last minute we wont just turn up but definitely have it penciled in for next year in advance.

I feel its quite the opposite in the fact that it's a small community. The HDA forum is very slow on all topics. My next step is to look for support for my family financially if my wife can finish work. I think it will do her good to be honest or significantly reduce her hours or her role. Then I want to hopefully apply to my works HR department and get on 1 permanent shift (6-1400) but I don't know how it will go.

Hi if you search on Facebook there are some good groups with people all over the world there is "huntingtons disease support group" and "huntingtons disease uk" that are quite good .

HDA advisors should be able to offer advice on dealing with employers and benefits etc, it is very very hard isn't it.