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New member - Carers UK Forum

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Hello. My name s Paula and I'm the full time carer of my husband who has had M.E. for over 16 yrs. This June I have also been diagnosed with fibromyalgia and joint hypermobility, and am awaiting an appointment for O.T.
Can anyone else identify with having a chronic pain health condition alongside being a carer, and any further help I may find?
I am also mother to a wonderful thirteen year old girl.
Paula, hi, and welcome to the forum. We are a friendly bunch, plus there's a lot of collective experience and expertise to draw on, some of which I hope will help.

I'm not in your situation (my 92 y/o MIL with dementia, now in a care home, is my 'hands off caree' now), but I know there are some here who are in your predicament, being only 'a bit less worse' healthwise than their caree, so I'm sure they will be here soon to welcome with you, and maybe help you find a way to make the 'care load' less trying?

Are you getting all your 'entitlements' such as Carers Allowance, Attendence Allowance etc?

One principal surely has to apply - there is no point YOUR health worsening by 'over-exhaustion' caused by doing it all yourself, so getting in 'outside help' may be essential for you (if you don't have it already that is!). Some members report that their carees 'dont' want anyone else but me looking after them' but I'm afraid that is, to put it bluntly, 'tough'. They really must do what they can to ease the situation, even if its not ideal. Hopefully your husband is 'cooperative' in that respect (!) - the problem usually arises when adult children are looking after very elderly parents, and either dementia is setting in (so no 'reasoning' with them!), or they are 'cowed' by overpowering parents, or the parent is simply unaware of just how much their children are doing for them (some members say that their parents are continually reminding them of loads of other jobs that also need doing, and wondering why the daughter/son isn't getting around to them!!!!!!)

Anyway, hopefully your husband is both appreciative and undemanding in that respect, and does whatever he can to 'pitch in'. It can be SO frustrating for men who are not-fully-abled, and sometimes that can come out on others as well as themselves.

Wishing you as well as can be, kind regards, Jenny
Hi Paula, welcome to the forum. I had a car accident in 2006, needed both knees replacing, but still caring for a son with learning difficulties and a housebound mum. It's tough. You are one person looking after three people, yes, including you, as without you, the whole lot will collapse like a house of cards. My best advice would be to streamline absolutely everything at home as much as possible. Flatten any borders in the garden, get a washer/dryer or tumble dryer, and a dishwasher. Look at the clothes you wear - make sure they are all OK for tumble drying. Don't do any ironing. Remove all ornaments. Throw away anything not strictly necessary, or buy some Really Useful boxes and put any unwanted items in them, in the shed. Anything left there in a year can be chucked, as you don't need it. Buy a pressure cooker, or slow cooker, do "one pot" meals. I would also suggest getting some domestic help for all the heavy work. Alternatively, pay your daughter so she feels valued.
Is there a "Young Carers" group in your area? Have you had a Carers Assessment from Social Services?
Thank you Jenny!
My husband does receive PIP and because of that I am entitled to carers 'allowance' for my 35+( more like 24/7) hours of care.
My condition has worsened to the degree that I have pain daily now, and have tried to simplify my routine as much as possible. I now pay someone to come in to clean my bathroom and toilet thoroughly once per fortnight, and a second person to mow the grass once per fortnight. This extra cost is worth every penny as those are my most difficult jobs. In between I keep on top of everything, but I am now looking into various Aids to help also ( anything with a long handle! Ha ha). Sadly I have to limit my computer time as looking at the screen directly affects me, which is frustrating as the Internet is a lifeline with forums such as these. To add to my anxiety I have to attend an appointment today with D.W.P to see a 'work coach' as I am also in receipt of income support to make up my carers allowance to a living wage :blink:
I know this is probably a formality, as they have to see you once every three years, but nevertheless, I am very anxious. Do I tell them about my diagnosis, or keep my head down and carry on as before.?
Hi bowlingbun
I have not had a social services carer assessment, never heard of one. I am waiting to hear from occupational therapy though, is that similar?mi should have my appointment by November. Thanks for the tips! X
As you are a carer they cannot force you to work. I read an article about this subject in the last few days. They should only invite you in every three years, but apparently some advisors are saying the rules have changed recently. The answer is to ask for a copy of the new rules. There aren't any!!!
Definitely contact Social Services and ask them specifically for a Carers Assessment. An OT assessment is different, but much needed from what you say. Has your husband had a Needs Assessment from them?
( also, can anyone clarify why carers allowance is seen as a taxable income, yet we are not seen to be working?)
No, we haven't been offered any assessment for my husband either. I think I'm afraid to ask.....don't want to be seen as not being able to cope, and don't want my lovely girl on some kind of social service register :( I realise that a very out of proportion viewpoint, but we are brought up to think this way sadly. Also my condition makes me have terrible anxiety. Perhaps I should bite the bullet.
Please don't worry, the "assessment" is in no way an assessment of your ability to cope. It's a visit from someone to see if there is anything Social Services can do or provide for you, to make life easier. It varies from authority to authority.
In my area, Young Carers have a special week arranged for them at a local activity centre, and other outings too, I believe. It helps meeting others in the same situation. If you are not sure, just Google the name of your authority plus "Young Carers".
Paula_1610 wrote:( also, can anyone clarify why carers allowance is seen as a taxable income, yet we are not seen to be working?)
Hi Paula, and welcome to the madhouse!
It is one of those - many - bizarre aspects of CA. If caring is work, then how come we get 'paid' so little per hour? And if it isn't, then why restrict the amount we can earn from paid work by imposing an earnings threshold? I have a p/t job as a researcher, and yesterday I earned £110 commission and travel expenses in five hours whilst my son was supported by a care-worker, so nobody can argue that I cannot work and also care! I took early retirement to support my son, and have an occupational pension which uses up all my tax-free allowance, so I do pay tax on both my CA and also my p/t earnings. So it is worth about £50 a week to me, which is under £1 an hour for the time I put in. Almost not worth the bother of claiming it, but I do, simply on principle. I pay more income tax than I get back in CA - its a bad joke!!