Dear Kirstin..

It is horrible isn't it!!!I am also the daughter of a caregiver. I am 21 and have severe Reflex Sympathetic Dystrophy and dystonia, (so severe chronic pain, wheelchair user, with very little use in arms (eg have to be fed, pushed, dressed etc). I am at uni now with my own team of 24hr carers..

BUT.....

my grandmother has terminal lung cancer... and it is so sad watching her get worse and worse. She was walking until 2 months ago when the tumour metasised to her spine and compressed it and now you can see the tumour moving up her spine every time I'm back (doing about 800 mile round trip once a week for 3/4 days to see her and help mum then come back to uni). Granny has only one lung, has neuropathic bladder and bowel (so incontinent) severe pain, joint stiffness, breathing problems and is now virtually bed bound. She is vagguelly with it but is so fatigued that all she does is sleep.

Like you I find it so hard to watch her go down hill.... and the frustration is immense. If I didn't go back to hers every week then mum would have no respite as she has to be there 24hours a day 7 days a week (we use my carers as respite) but I still find mum sleeping on the sofa next to grannys bed to keep an eye....

anyway, I really empathise with your situation.... it's how I feel most of the time.... especially as I can only help emotionally, am not much good physicallly!

anyway big hugs

Rosie xxxxxxxxxxxxx