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Autistic burnout while supporting a seriously ill parent - where do I start?

ThePixelPusher

Hello everyone,

At the moment, my dad is seriously ill in hospital and I'm trying to support him while also trying to navigate my own health, as well as the GP, social care and benefits. My Dad has always been my filter to the outside world, and I've realised that I think I'm approaching autistic burnout and I'm finding executive functioning much harder than usual.

I've contacted my GP, Macmillan, Carers Support West Sussex and a few local organisations, but I wondered if anyone who has been through something similar had any advice.

In particular I'd be interested to know:

  • What support actually helped you when you reached burnout?
  • Was there an organisation that made a real difference?
  • Did anyone find an autism advocacy service that was genuinely useful?
  • If you claimed PIP as an autistic adult, what evidence did you find was most helpful?

I'm not looking for medical advice, just to learn from other autistic adults who have been through similar situations.

Thank you.

Parents

  • Hello, sorry you’re going through all this. I came on here because I’m really overwhelmed and part of that is my Dad’s been diagnosed with stage 4 cancer. It’s all too much. I have been made redundant and am starting a new job in September so lots of new and unfamiliar things coming up. There seems too many people at home but no one I can talk to. How is it for you? What do you need to feel supported or more able to cope?

  • in reply to Nutmeg

    Thank you for replying, and I'm really sorry to hear about your dad. It sounds like you're carrying an awful lot as well, especially with starting a new job on top of everything else.

    To answer your question, I think I'm functioning because I have to rather than because I'm coping. My days seem to revolve around hospital visits, trying to sort things out for my dad, and then coming home exhausted. The things that used to help me regulate my everyday routines have almost disappeared, and I think that's why everything suddenly feels so much harder.

    I don't really have much of a support network outside my dad, so I'm trying to reach out now rather than waiting until I completely burn out.

    Can I ask how you're managing with your dad's diagnosis? Have you found anything that's genuinely helped, or are you still trying to work that out yourself? Also, have you found Macmillan supportive? They've been helping me a bit already and I've been pleasantly surprised.

  • in reply to ThePixelPusher

    At the moment my Dad is waiting for detailed results of his biopsy so we don’t have any clarity on the longer term outcome. I’ve done my own research which doesn’t look good but waiting and not knowing is unsettling. At the moment he’s in a rehabilitation unit to try and improve his strength and movement. I haven’t contacted MacMillan yet but good to hear they’ve been supportive. I regulate by being by myself, walking and listening to music. It doesn’t change the situation but I know I need to gI’ve myself alone time. 

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  • in reply to ThePixelPusher

    At the moment my Dad is waiting for detailed results of his biopsy so we don’t have any clarity on the longer term outcome. I’ve done my own research which doesn’t look good but waiting and not knowing is unsettling. At the moment he’s in a rehabilitation unit to try and improve his strength and movement. I haven’t contacted MacMillan yet but good to hear they’ve been supportive. I regulate by being by myself, walking and listening to music. It doesn’t change the situation but I know I need to gI’ve myself alone time. 

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