Sorry to hear someone if your family is going througbh this Onyx - all these posts will be hard to read, and I'm sorry if I add to your distress - but I remember wanting to know everything as well


- TBH, it's pretty gut wrenching at times... I felt I grieved for my grandmother when she had the diagnosis, more than when she actually died. I couldn't visit her at the end, I knew that she didn't want to live this way and that made it so painful to see her. We had extended family in other states who did not understand why we didn't see her, and as such we don't see them anymore either, which is sad, but really - she wasn't grandma to me by then - I wish I could have spent more time with her, but I wanted to spend more time with MY grandma, not this empty shell that was left....

sorry to be so depressing - but there is no denying it's a tough journey. I read something at the time that said the average time someone lives following diagnosis is 9 years - I remember holding onto that at the beginning, and at the end, wishing it would happen sooner. it's yuck that's for sure. There are mixed feelings of grief and relief when someone dies following a long illness, so don't beat yourself up if you (or other family members) have mixed feelings at any time throughout this. It is all normal. Remember that everyone in the family will deal with it in their own way, you can support each other by not judging each other for this - if my cousins had been able to say - I wish I could make this easier for you, and I hate this too - it would have been really helpful.

my advice, is to spend as much time as possible with the person now. Fun times, just doing the normal things you all enjoy - take lots of photos and video of them the way they are now.
one of my cousins made a photo album and put pictures of everyone in there so grandma could look through it - which was nice. It made us feel better, even if she didn't look at it.

last thing though - also remember that each person's experience will be different, my grandma sort of 'lost herself' after having surgery for a duodenal ulcer, and that was when she was 'gone' to me. they say it is much more difficult when they do go under anathestic, and then she never went home, so there was nothing familiar for her either. The longer they stay at home, the better in terms of their memory - but they have to be looked after as well, so all these factors need to be weighed up. it may be longer and much easier for your family. and I sincerely hope so. try not to get too distressed by these negative stories, it's unfortunate that's it's a degenerative disorder, so the outcome is sad, but there is always hope that it will be a smoother ride for you guys xxx xxx

best wishes...


Mummapan, just highlight the blank section and you can see the white text (kinda cool trick really!)