Carer too tired to look after me properly, won't take care of themself — Scope | Disability forum
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Carer too tired to look after me properly, won't take care of themself

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frocktopus
frocktopus Community member Posts: 2 Listener
Tl-dr carer hasn't been taking care of themselves and now can't take care of me.

My carer and me live together and are both isolating together an a flat, they're kind of my partner (they came out asexual and are probably aromantic so we've slaid into friendship, but both v much love each other)

Over the last 5 years they've been getting more and more fatigue, more back pain, realised they probable have ADHD, and need more and more sleep to function. They've gone to a g.p once years ago, fobbed off, and have never done anything about it since.

Which would be fine, I don't want anyone telling me how to deal with my health, but they're getting to the point they can't take care of me properly, and still aren't doing anything about it or really accepting the situation.

I have autistix meltdowns and panic attacks about it every few weeks to a month, or tell them how much is impacting my health, and they do more care stuff for a few days (used to be a week or two) then go back to bring tired all the time.

They keep giving me food poisoning bc they can't cook properly, I keep getting infections bc they can't wash me often, and I'm in constant boom and bust trying to do things they used to, but I'm really too sick to do (I'm pretty much bedbound but still very ill while I'm bed.)

One of the main issues is they're not up to going to hospital appointments or a and e with me, they can't feed or look after me if they do, so I keep choking on vommit and not getting help when at hospital bc I'm non verbal most the time, but bc they aren't going to the drs about it, but hospital won't supply help anymore to accommodate me bc "I have a perfectly healthy carer who could go with me"

I'm very immunocompromised so can't have anyone else in the house to help, not that we actually have people around who can help "small town, people leave a lot, or at our age most friends have kids and jobs etc" we've been offered direct payments by the council for a 2nd carer but no one wants a 10 hours a week job "fair enough, I wouldn't lol" and again, small town not many people about too take the job, we've had 2 applications sine 2020, neither available at times needed, but tbh there's not a lot they can do without coming in the house anyway, and covid cases are really high here.

I know there not being lazy, it's health stuff just like mine, but it's making me feel like a burden and tbh I don't think I'll be safe much longer, it causes so many avoidable health emergencies, they're so used to not thinking of themself generally, but how do I get through to them to go and advocate harder at the g.p and try and get a diagnosis or at least a blood test out something to see what's up?

I can't find much about this at all, everything I don't about carer burnout etc is aimed at carers, but nothing about accidental neglect from it or impact on the caree 
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  • frocktopus
    frocktopus Community member Posts: 2 Listener
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    Sorry about all the typos, I'm using rubbish speech to text x
  • Alex_Alumni
    Alex_Alumni Scope alumni Posts: 7,562 Disability Gamechanger
    edited May 2022
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    Hello @frocktopus and thank you for reaching out on the community last night, don't worry about the typos.

    I'm really sorry to hear about your current situation, and we'd like to offer you as much support as we are able to. I'll be emailing you a little later today from community@scope.org.uk to check in, so keep an eye out for an email.

    All of this is undoubtedly having an impact on your and your carer's mental health, so if you need to, please reach out to the mental health charity Mind, text "SHOUT" anytime to 85258, or call Samaritans on 116 123 to talk things through.

    Talking about things can be so helpful, and I hope that posting on the community has helped in some way, as it shows you're taking positive steps to ask for help.

    If you feel we can help with anything further please do say, and I hope the community can be a supportive place for you :)

    Alex
    Online Community Coordinator
    Scope

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