End of life care for my autistic uncle

FormerMember
FormerMember
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My poor innocent uncle is so poorly. He has rectal cancer thats spread to his lung and liver. It saddens me so much to see him so ill, so thin and gaunt. It really is near the end now, and I just can't accept it. I've had to clear up poo, sick and now blood - I cry everyday seeing him get worse and worse. I am struggling to cope with my emotions, I just want the world to gobble me up. I feel utter sadness and no happiness at all - is this normal? I'm scared if I feel like this now, how am I going to feel when he's gone... I'm worried I'm not going to be able to cope with the loss of him. With him having autism, it's very difficult to know what to tell him regarding his cancer... He knows it's going to get worse and can't be made better, but he hasn't been told he's dying... The rest of the family thinks he shouldn't know as he'll spend what's left of his life in fear. I don't know if I necessarily agree with this or not, it's so hard to know what's for the best. To make matters worse, we're having to care for his mum (my gran) who has severe alzheimers. None of us are coping, everything is such a mess. I also feel like my two daughters are suffering (9 month old and 3 year old) because I'm so eaten up with grief.

Life can be so cruel sometimes Sob

  • Hi ,

    Sorry to read about what you are going trough and wish I could wave a wand and make things better. I can relate a bit to the autism issues as my son has a diagnosis and I struggled in the early days about what to tell him about his mum. I wonder if your uncle might understand more than people give him credit for though.

    Perhaps from what you have said above a next best step might be to ensure you get the support you need, it is so easy to get caught up in other people's issues and put ourselves last. The feeling of grief when someone has cancer or any other life limiting illness if very common, we sometimes refer to it as pre-grief. 

    Are you collectively getting and support with both your uncle and your gran? A needs assessment and a carers assessment might help to ensure everyone gets supported in a way they need to make the most of life for everyone.

    <<hugs>>

    Steve

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