When is the end the end? Glioblastoma stage 4

In June 2017 my mother in law had what we initially thought was a stroke. After tests and results we were told it was a brain tumour. Left frontal lobe. 

By July 2017 she was recovering from surgery, they had managed to debulk the tumour. Next came the chemo and radiotherapy. 

She battled through and remained quite well in herself throughout all the treatment, we took this as a positive sign. 

The results after the chemo showed the tumour hadn't shrunk but hadn't grown either... another positive, was it now dormant? 

The hospital suggested stage 2 chemo earlier this year, after the first dose that is when things completely changed. It was very hard on her physically. She developed a blood clot in her leg so they prescribed blood thinners, she then began bruising all over her body. Blood tests showed her platelets were dangerously low. This was the first hurdle, treat the clot a d risk a bleed or leave the clot to prevent a bleed?! 

Fast forward a few months... she became partially blind (I think it's the tumour) so has stopped being as active. Latest scan has shown the tumour hasn't grown but she has got a big bleed on her brain. She still has the clot but the have stopped the blood thinners now because of this brain bleed.

She has collapsed 3 times now in 4 days. She rarely gets out of bed, she's very weak physically. She has been confused, sort of a dementia for the past year now. Mood swings and personality change etc 

I personally think she has done incredibly to fight this now for 18 months as I know they predict life expectancy of 12-18 months.

I know no end is the same for anyone, I want her to have care as my father in law is working full time and trying to be a full time carer. I feel she needs someone with her the majority of the time but she is quite a stubborn and strong minded lady who wont even have the word hospice mentioned. I hate the thought of her being home alone if anything happens but it seems everyone is burying their heads and hoping it doesn't happen, no one seems to have even discussed palliative care with any of them. As a daughter in law I feel limited as to who I can contact but she has 2 sons and a husband who are all worried about upsetting her. 

Sorry for the long post but any advice would be very welcomed right now, I want to help her at the end not just pretend it's not happening.

  • hello 

    my dad is the same he wouldnt even think about going into an hospice but he gets full hospice care at home, we all his kids do shifts so he is never on his own, he has 2 carers in on a morning to wash and change him .. he has a pallative nurse at visit at dinner and 2 carers on a tea time and we have a night sitter service so he has a nurse with him everynight from 10pm so we can get a break, reach out to sue ryder or another cancer care provider, they do all the same care that the hospice provides while hes staying at home 

    its still hard work but we get the support we need 

     

  • Hi .. do not beat yourself up, my mum was the same, she would not entertain going into a hospice.  My dad was run ragged and even although all the family pulled together to help he still got the heavy end of the work.  She was such a stubborn woman, didn’t even tell her friends she had cancer and we couldn’t either.  There is nothing you can do to change her mind and you don’t want to fall out with anyone at this time in her life.  It’s sad that she can’t welcome people into her life to help make it easier for her and her husband but she’s happy with how she is dealing with the situation, she’s taking control and it’s all she has left.  We are all different and it’s the way of an older generation believing they can manage without any help.  Try to give your father in law the help as he needs it.  Sitting with her to allow him a few hours away, or staying over, if she will allow it, to save him getting up in the night.  Try to sit and ask or listen to her talk, ask about her life, ask about when her boys were small .. every proud mum loves to talk about their kids.  I know it’s so hard but Let her die with her dignity.. that’s how she sees it .. take care