Hi all. Just joined.

Tell us a bit about yourself here.
Hi all.

Im scott 31 from north yorkshire. Married to my beautiful wife and have 3 stepchildren and one of our own. 17,13,10,6 all girls!!

Been caring for my wife for 2 years now. Shes suffering from fybromyalgia/chronic fatigue. Tough old life isnt it lol.

I had to give up a great job as homelife was suffering as i was working away monday to friday. Worked for 5 years for one company and promoted from cleaner to manager to senior manager of 200 staff! But life calls for tough choices to be made.

The kids were suffering as was my wife. It needed to be done. 35k a year to 60 quid a week was a tough life change..

Just had a meeting with social services and direct payments. We have direct payments setup for my wifes personal care and use it for 45 mins a day.

Confusing meeting today as yet again grey areas on what we can spend the care on. Todays examples and previous include:

Such as can cook my wife an evening meal but not for me or the kids.

Can escort keely to school but not take the kids alone.

We even asked for a ramp for her mobility scooter ( we bought the scooter ) we were told it couldnt be paid for as it was the scooter that needed a ramp not my wife. They said she can manage one step and could get on outside.

Explained we couldnt store it outside and still got its the scooters needs not my wifes. End result i hand built a custom built shed that broke me and skinted us just to enable keely to use her scooter.

I keep been told by her social worker she will give me a carer assessment. Not had whatwver that is. However today she said all the can really do is give me a carer card and point me in direction of carers resouce.

Looking to reach out and meet fellow carers and the like. People look at me like im mad when i join in about cooking or cleaning or washing conversations at school lol

Sorry to rant but it kinda all spilled out.

Scott
Hello Scott and welcome to the forum :)

Sounds like Social Services in your area don't know their Ar*e from their Elbow ! It's either that or they are desperate to save money :) Whilst we're a friendly crowd we don't have all the answers, BUT the Carers UK Adviceline have most of them !! So do give them a call or email if you can't get through on the phone - if you click on the red "Help & Advice" tab at the top you'll find lots of information that will help - just click on the various headings to find relevant factsheets (click on the "Talk to Us" headline to get the Adviceline contact details).

A Carers Assessment would be for you to discuss YOUR situation in relation to caring for your wife and should include a discussion of things that would make it easier for you to continue to care - as far as I am aware you cannot be refused an assessment - unless they've suddenly changed the rules without telling anyone ! Your wife is also entitled to a Needs Assessment - again to determine what support she needs. There are factsheets about both of these assessment under the heading "Practical Support".

No need to apologise for ranting - that's what we're here for (we're very good at listening :) )

Hopefully other members will be along soon to add their twopenny worth :)
Hello Scott
My circumstances are different to yours. However want to welcome you to the forum. It's been a lifesaver for me. Do try the carers advice line. The way your SS dept is treating you certainly doesn't seem correct, or fair.
Hi Scott, Welcome to the forum.

Sorry i can't offer you any advice over direct payments, not an area i have looked into yet.
By the sounds of it you're managing fine with the other things at moment which is nice to hear, Most of us here will only be happy to offer advice on a range of topic's. I can only imagine how hard it must have been for you to give up your job. Especially after working you're way up the ladder, needs must though as they say and sometimes we have to make sacrifices for the greater good.

I also get strange looks, mostly from women when they hear that i can do all the same jobs they can do.
Think it's some kinda wierd thing for some people to hear a guy can cook, clean and do the same everyday tasks they do day in day out. I have been a carer for over half my life and recently joined here too.

p.s. I know how crazy it can be living with a house full of females. better to admit defeat now than suffer later lol

Hope you find the answers your looking for and wish you all the best
Hi, I'm not usually in favour of children helping to care, but with your two oldest children (the steppies, I take it!), would they not be able to help out somewhat?

I suppose it depends just how helpless your wife is, alas. What is that you are doing for her, and what for the children? Because if the big problem for her is the children, then would a combination of having the two older ones help with the two younger ones PLUS getting in some childcare enable YOU to go back to work and get your very decent salary again?

Sorry if all that sounds pie in the sky, but it does seem very bleak that you've had to give up, at your VERY young age career-wise, a decent salary (that you've worked so hard to achieve) in order to do what is, really, for the most part isn't it, pretty 'basic' stuff'?

I know that FM/CFS are pigs to treat (!!!!), but do hope that things might improve for your wife - is there any understanding of what kicked it off? (eg, viral infection that 'took root' etc etc).

I suppose a lot of the benefits business will depend on just how 'disabled' your wife is deemed to be by her condition - again, FM/CFS are tricksy in that respect, in terms of being seen to 'warrant' being regarded/assessed as 'truly' (!) disabled.

I guess my argument in favour of you going back to work -assuming you can work at that salary level again - is that, being so young as you are, there are considerable opportunities, after all, for increasing your salary over the next couple of decades, hopefully to the point where you can pay to provide sufficient care for your wife yourself, even if the benefits avenues get blocked. Being a carers is SO abysmally 'paid' that you could be looking at a very, very impoverished life 'for ever'.

Also, do take into account that in a year your oldest (step?) daughter will be 'off', either to uni or into work, and your next oldest will follow suit in a few years time. Plus, of course, they are getting older and therefore more independent and 'helpful' as they get older, thus lessening their 'burden' on their mum.

Would it be sensible to sit down with your wife and the two older children and really talk things through as to what they all think is the best way forward now? SO many of us take on the care of a dependent relative as a kind of 'knee jerk' decision, because it 'seems' so much easier for US to be the carers - but it can prove to be very 'shortsighted' in a way, and hideously often condemns one to salary-less poverty and total dependence on inadequate benefits.

Finally, what did you wife do before she became so afflicted? Is there any work she could still manage to do, to bring in any income, as that, too, would help to make it more financially sustainable if you DID manage to get back to your career.

(Also - what contribution to his children's upkeep is your wife's ex making? He certainly should be financially supporting them, if nothing else!)

Overall, to go, at your very young age, from being completely financially independent with a very decent salary, to being completely dependent on meagre benefits that you have to fight every inch of the way to get, seems very harsh on your all.....:(
Hello, welcome to the forum. I know someone with fibro, it's a really difficult condition. I was virtually unable to walk after a car accident, whilst still being a carer for a son with learning difficulties and a disabled mum. Drastic measures were called for.I looked at every job I did and everything in the house. Did I need my late husband's grandmother's china cabinet and his collection of Coronation mugs. NO! I didn't need so many books, chairs, etc. The flower borders in the garden went. I had a dishwasher, a washer/dryer, even changed the clothes I wore to avoid ironing. The end result was a house much easier to run and clean. Your older children are old enough to do their own rooms, and their own washing. The youngest can help lay the table and tidy up afterwards. By streamlining everything you can save lots of time and work, so hopefully you can work again? Social Services should have told you about Disabled Facilities Grants for the ramp. When did your wife last see an Occupational Therapist, who might be able to make suggestions.