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Dear All,
I look after my ex-girlfriend with whom we share a daughter.
She has a rare form of cognitive dementia that means she needs guidance to do even the most basic tasks like going to the loo and constantly worries she is doing the wrong thing. (Think bart simpson in the back of the care only instead of "are we there yet" it's "am I eating this right" "have I upset you" "do I need the toilet".
I agreed to look after her after SS made lots of promises about me not having to give up work, lose my savings, my company and backing up those promises with quotes from the care act. If I didn't agree she would have been sent to an ATU, pretty much her worst nightmare.
4 years down the line and I'm no longer able to work as Ali doesn't sleep at night and I only get one night cover a week. I have lost my company and most of my savings. I'm pretty sure that my career is a wreck and I'm constantly either doing paperwork for benefits, for Ali's healthcare or to keep our support funding.
We get respite but even then I'm a single dad with a teenage daughter and elderly father whose wife and other son (my brother and mum) passed away in the last 18 months.
My health has taken a few tumbles with my blood-pressure skyrocketing, my type 2 diabetes getting out of control and my depression and migraine acting up.
We are lucky to have a great social worker from a local hospice but she is overrun with all the problems caused by Universal Credit and cuts to CHC PHB's. We (that's the SW and I ) were badly advised by both JC+ and a National Advice agency that applying for Universal Credit would increase my money and stop the drain on my life savings from claiming just pip, Carers allowance, and child tax credits. We are now getting less than before.
Not sure anything is going particularly right for us at the moment but both my charges are happy so at least thats something.
I'm not sure why I joined this forum really, I just think I wanted to know if others share my situation as I keep being told that my situation is unique and so we don't fit the models that would allow us to get a decent level of support.

Pleased to make your acquaintance

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Martin hi - a quick read of your post tells me this is TOO MUCH for you to cope with.

Something has to change - to 'give' if you like - and the one person who must NOT 'give' is YOU - as in, you must not break because that is no good to anyone, least of all you.

You have sacrificed a HUGE HUGE amount for another human being, who happens to be the mother of your daughter. But this seems to be turning into a life sentence for you. Is this fair?

Her disorder is not of your making, and you have given up SO much to her. do you not think it is time to 'step back' and say 'I've done my bit'.

Your daughter is reaching her majority, and will be starting on her new, independent life. I'm sure she is very, very proud of what you've done for her mum. But I'm sure that with her new adult eyes she will know that you cannot, cannot be expected to go on 'pouring out your life' for your ex, and it is time for 'others' - including the state, which is what it will probably boil down to - to 'take over'. (ABOVE ALL, obviously, SHE must not 'take over', and you will be there to stop that happening, I am sure.) ('Young carers' are the one category above all that shames our society to the core....)

This is only my take on it, and it may sound a bit 'ruthless' but there it is. Love can go a long way, and so can caring and a sense of decent human responsibility, but as I say, we are ALL entitled to 'our own lives' and that includes you.

I appreciate options and alternatives are very, very limited, but even if the 'solution' is a lot less 'happy' than the current one for your caree, nevertheless, I think it should be explored - hopefully some sort of compromise can be achieved, whereby you get enough time to 'remake' your own life and career, and yet still 'put something in' to your ex's care needs.

There's a huge amount of cumulative experience on this forum, plus, of course, the experts on Carers UK itself.

Hopefully some ideas and recommendations can be put forward to you ,that might work to give you a better 'Life/Care' balance!
Hi Martin, welcome to the forum. I also hate the way we are all supposed to fit neatly into pigeon holes - there would never be one designed for me either.
As far as finances are concerned, consider speaking to our CUK advice line - emailing is better than phoning. They helped me with a problem with DWP, who didn't know their own rules, and I was £50 better off as a result.
What pratical help are you actually getting at the moment?
bowlingbun wrote: As far as finances are concerned, consider speaking to our CUK advice line - emailing is better than phoning. They helped me with a problem with DWP, who didn't know their own rules, and I was £50 better off as a result.

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
Open Monday to Friday, 10am to 4pm

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 9am to 7p

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.
Thanks for getting back to me on this.

I will try getting some advice on the benefits from Carers UK.

I'm not sure I could live with myself if I was to ask to hand her over to a Care home until it was absolutely necessary. As her condition is incurable & degenerative she wouldn't get the therapies that currently help her maintain her cognitive abilities. I have never turned my back on a friend in need.

Even then getting her in would be a lengthy process involving the COP and the local CCG accepting responsibility.

As far as rebuilding a life, well after 50 the likely-hood is that the future of someone working in IT is likely to feature the words "do you want fries with that?" or "can I supersize that latte for you?" But looking at it this way, I started my work career sluicing out cowsheds and picking fruit, so maybe even working a fry station would be a step up from that.

Thanks for sharing your perspectives they are really appreciated even if they are in the words of the song "the good advice that you just cant take".
It doesn't have to be all or nothing, I never mentioned residential care!
There are lots of options in between. You are suffering from sleep deprivation, that needs to be sorted for the sake of your own health. The helpline will talk you through what should be possible in relation to care options and money.