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Caring for someone with mnd -Carers UK Forum

Caring for someone with mnd

A place for those 18-35 to chat about all things caring.
I've been carering for my friend Ian for about 9 months now we finally got his diagnosis a few weeks back so apparently we can now get funding for care but it's a slow process, even for an urgent refereal
I've gone from them being my voluntary carer to being there almost full time carer and I'm struggling I'm mentally and physically exhausted, to get them up th stairs I have to rugby lift them up the stairs up everyinch of those 14 steps as they can't walk without help as due to there condition they can weight bear they cling to the double banister ad I lift them I sorta got thrown into carering for them as there nearest relative is a 3 and half our drive and there partner is pritty much useless she will cook for him but not feed him she will try help him of his comod and clean it only if he's peed she can't get him upstairs but will drive him to appointment . I deal with all the good bad and unglyside some, I wash him and it takes along time but I gernally don't mind my I didn't chose to do it I sorta fell into it cause I'm on furloughed but I go back to my chefing job and I'm scared for him as I wasn't available for most of one day as I went to see my nan first time I'd been to see her sinse lockdown one. He wasn't on his own his partner was supposed. To be there and a few nebours. We're helping but I don't think they'd been preaped or realised how in tense carering for him and the fact he needs help with everything from pulling his cloths downand up to helping up of the loo and help gettingouttaaa chair. Unfortunately he had some falls in the bathroom and he expected too much from them, a nebours would gernally be a bit freaked getting a half dress man off the floor he refused to have amblunace called . have sinse bought a rise and recline chair and it's been really good. The auldult services are dragging feet and charity's are waiting on funding he's condition is moving swiftly I'm struggling to keep up, they will provide equipment but not help, I have chronichhealth ccondition is cfs and fibromyalgia and JA, back isuess and being investigated for eds cause I've dislocated both my shoulder reapeally lifting him on top of this I have autism, mental health issues, I'm reaching my limit and in so much pain and having to be always alert incase he falls or chokes or needs something I have no time for my self, I'm struggling to keep showing a brave face and keeping positive even tho motor neroun diases is terminal and diegerative a lot time be time we receive some the equipment he isn't physically capable of using it we applied for a rail to be put on the path in January a person arrived to fit it last week the man I care for can't walk without his walker which he can only do few steps and he sittts on the outside walker and can kick his legs along for short distances before I have to push him
How do I be brave for him when I know what's coming he doesn't want to know what next step of his diases as he's no able to face it I do the research I've got the knowledge and give if it if he asks questions a little at a time as he's terrified and just want his life back. I can't eat for the anxiety and stress, how do i hold the mask of positively up when inside I'm crumbling

. I'm struggling to find any support or there anyone like us I've reached out to prince's trust which supposed to be our nearest carers support and had no reply
STOP lifting, immediately!! You MUST call an ambulance. He cannot make you lift him because he can't get up. It's not his choice to make. He needs more care, ultimately a team of carers at his home, or residential care I'm afraid.
What is the GP doing?
Ask for an urgent Occupational therapy assessment, an NHS Continuing Healthcare Assessment. Ask for counselling. There's a lot to consider. Most importantly whether or not you want to continue to be involved?