Lewy’s bodies dementia and terminal cancer help

(5 Posts)
Redcentre Mon 19-Aug-19 16:15:04

Hi everyone, I hope I’m posting in the right place. Feel like mumsnet people are the most helpful from past experiences!

It’s about my MIL’s Parkinson’s with lewy’s bodies dementia which she was diagnosed with 6 years ago after 2 years of symptoms. She’s young (60) and was so active and positive. She was a wonderful grandmother. She’s now been struggling with cancer (skin) since January 2019 and its now spread to lesions one other parts of her body and the first has grown to the size of a grapefruit and needs dressing every day. We are so helpless as is my FIL who manages somehow to be her full time carer.

She’s on a lot of morphine and can’t be treated for the cancer at all.

Our family are extremely upset by the fact she is in pain, unable to relate to anyone and we haven’t got any idea of what will happen or how to help more. It’s so rare to have this and all cancer forums I’ve found don’t include Lewy’s body dementia and Parkinson’s.

We’d be so grateful for others’ experiences and advice. Feeling very alone and helpless. Thanks so much

OP’s posts: |
MereDintofPandiculation Tue 20-Aug-19 12:18:13

Is she at home now, or in a hospital? On the face of it, this would seem like a case for hospice care, but that's something I've had no experience of.

Redcentre Tue 20-Aug-19 15:57:43

Hi thanks so much for your reply. She’s at home but gets support from the local nurses who dress her skin tumours every day. My FIL looks after her.

OP’s posts: |
MereDintofPandiculation Wed 21-Aug-19 09:49:25

What would you like to happen, in an ideal world? Is it important to everyone involved to keep her at home?

MereDintofPandiculation Wed 21-Aug-19 09:52:18

I'm asking, because those of us who have managed to get help usually have done this by being very firm with all the professionals involved and laying down limits on what we can do. But it's more difficult to do that if you're determined that a loved one should stay at home if the professionals involved think they should go into some sort of care.

And also because I have no experience of your mix of problems, and I'm trying to make sure this thread keeps getting bumped to the top till someone who can offer practical help reads it.

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