I’ve been in a relationship with my partner (who has RRMS) for two years, and we moved in together officially this summer. My partner is heading towards his first relapse since we met, and going downhill. His sleeping pattern is all over the place, there are nights when he can’t sleep, wakes up after a couple of hours, or conversely sleeps for twelve hours - there’s no consistency at all, leaving him sometimes nocturnal because he can’t keep to anything. It’s exacerbated his episodes of depression (down to the benefits system) as we rarely have a day we are able to get up and go to sleep together. He tremors a lot and his balance is failing - plus I’m pretty sure there’s things he isn’t telling me to try and stop me worrying (it isn’t working, had you noticed?).
I’m hoping for advice, really, as I’ve essentially become his full time carer (I have fibromyalgia myself and am unable to work either). I’m talking to Citizen’s Advice and our MP on the money issues this obviously causes, but I wondered if anyone had advice on a similar situation as it’s weighing heavily on my mind and amid trying to deal with the various out-of-house issues, housework and supporting my partner, any help is welcome.
Thanks in advance.
as well as talking to your mp and CAB, you should appeal against any decisions to stop your benefits.
i understand because i got mega stressed about PIP and they reduced my benefit from higher to standard rate.
i appealed but was then sent to tribunal.
i couldn’t sleep for worrying and the wonderful welfare rights lady suggested that we asked for it to be done on paper.
they agreed and then awarded me higher rate for both, so it can be done!
your partner should contact his ms nurse, he could ask for you to be included in the appointment which would be good for both of you.
take care of yourself as well as your partner.
Citizen’s Advice were amazingly helpful, a spent two and half hours this morning playing musical council desks with a lovely lady who seemed a treasure trove of information. I’ll summarise what they’re doing.
- Sending our estate manager to visit us at home on Wednesday to discuss a Single Access Point referral for a shared support worker and collect a letter we need to pen giving each other consent to act on the other’s behalf (to make things easier).
- Including me in an email discussion between our estate manager and the housing maintenance supervisor about what is going to be done with regards to desperately needed help with damp.
- Referring us for a home visit from Housing Registration in a hopeful first step to a property more suitable for our needs.
- Contacting our MP to chase up the help I previously asked for with PIP.
- Helping me apply for Carer’s Allowance, the Carer Premium and if the MP fails PIP again.
She’s also put a note on our file that communication is to be by email so we have a written record of everything that happens as she thinks we have fallen through the cracks in the council systems. I’ll definitely ask for everything with PIP to be recorded on paper, that’s a great idea and we should then have a record there too.
My partner sees Doctor Heales (not sure about spelling) at York Hospital and he has an appointment in January. I’ve not heard of any other nurse? I’ll definitely go with him to the appointment.
Thank you very much Carole, it’s helpful just to have support, hopefully things will look up from here.
Apart from finding out information myself through Google. Citizens Advice are the only people to help and point me in the right direction due to my persistence and no end of questions.
The whole Benefits System is run by people who are trained not to give out any information unless asked so they can ultimately save a few quid. So many people must just give up due to making themselves ill by continuing.
The bottom line is. If you don
t ask, you dont get.
Well, I don
t give up asking and I do get but it shouldnt be this way. Everything is a big secret.
Although I am diagnosed PPMS ( which is hard at times). I am also a full time carer for my partner Dee who is diagnosed with Dementia. So I`ve had a double whammy to deal with without help. I must be their worst nightmare but I will continue to get what is owed to us.
People on here have written in great detail about what you need to do to have the best chance of getting PIP.
Search PIP using the search box in the top right hand corner of this screen.
I found a lady from Adult Care, I think it was, to help me fill in the form. I didn’t think that I needed help with it, but she was so focussed and detailed, and, of course, not emotionally involved with getting the benefit.
And probably a good idea to see your GP with your partner because the whole process may take a while…
Lots of support on this forum,
Agree with all of the above. you should be getting help from social services too. Perhaps the support worker can help there. My partner and I are co-carers, yet we also need help with stuff neither of us can do - sounds lot like your situation. I get 6 hrs from Direct Payments, after a struggle to help me, but he gets nothing. So we took the decision to employ a PA for 3 hrs. a week.
I do sympathis with the sleep thing too. He can have broken sleep, which wakes me up, then I need the loo…I’ve resorted to taking co-codamol if its going to be a bad night, simply to knock me out. AND the all important nap in the afternoon. Grab it while you can, is my motto