Dads brain tumour update

 

Dads now in hospice, diagnosed November 2020 malignant stage 4 gliobladtoma had brain surgery had radiation and now he's receiving end of life care in a hospice. Lost ability to walk can barely see his tongue muscles aren't working very well hes delirious he can't hold a cup or feed himself he can't move he's extremely agitated he's on a driver with morphine steroids and levo going through it. From six months ago being a property developer and a bus driver to now end of life care. I turn 35 next month and its fathers day next month and can't imagine I'll celebrate that ever again. My little sister is only 14 my kids are so young too its all round just a nasty cruel horrible world. Hes never been ill never been in hospital a good honest decent man and this is how life repays him.

  • I am so sorry to read your post. My friend is 46 and has terminal cancer and i am trying to prepare myself for this end stage. It must be so upsetting for you with your sister being so young and your children little too and yes - life can feel very unfair. I don't know if this will help at all but i lost my father in law to Covid right at the beginning of the pandemic and we just couldn't believe it - what were the chances. It is still upsetting to read his dairy which ended a week before he died saying - not good. Hope it isn't Covid. However, we are now able to look back and think thank goodness he was fit and healthy until Covid took him and that he'd enjoyed a good life. I also have a friend who has just lost her son in this early twenties - as you can imagine - she is very angry with life too. I know it seems impossible right now but grief looses its edge and we start to remember happier times. Agitation is very upsetting to see. My father in law was like this the last few days before he passed and as no relatives were allowed in the house - my mother in law was left alone to manage. Luckily the hospice came out and sedated him and he passed in his sleep. I'm hoping that the restrictions have lifted enough for you to be able to say goodbye as a family.

  • Thanks for the response sorry about your father in law.

    One thing I do know is you absolutely cannot prepare yourself to lose someone. I thought I was preparing I thought I was prepared but I definitely am not. This man my dad, I only exist today because he created me, to then live in a world on a planet where he doesnt exist anymore ill never hear his voice ever again ill never get to call him dad ever again ill never get to buy a fathers day card ever again he will never see any of his daughters get married so much hes been robbed of. To make things exceptionally worse hes personality has now turned. Hes now being extremely rude and saying hurtful things to us and shouting and swearing which just isn't him its the brain tumour but to be on the receiving end of that still breaks us every single day. We sit with him all day everyday in the hospice we never leave him so he's alone we are constantly with him but its living hell it's torture to sit back and watch your young parent die is soul destroying. The pain is too much it hurts too much .  

  • Hi, 

    I'm sorry to hear about your Dad.  My Dad was diagnosed about the same time last year and is fading quickly now, it's an awful condition and the last few months have been like an exhausting rollercoaster for me and Mum.  Dad hasnt been able to walk for a couple of weeks now and can barely see and understand things but now and again he'll smile and say "thank you" and it's heartbreaking.  Like your Dad up until about a year ago he was retired but always wanted to pitch in and help and it's difficult seeing such a rapid decline in someone who always seemed so strong and ready with a joke.  

    Hope your kids and little sister are ok and get through it too - thinking of you all - I know it doesnt make it easier but you're not alone - take care   

  • Omg I'm so sorry to hear that I wouldn't wish whats going on, on anyone its truly heartbreaking. 

     

    Same as my dad sometimes he's there and so excited to see us and asks for us etc and so polite, flirts with the nurses infront of my step mum though lol but that's out of character but gets us all confused sometimes but generally we laugh that off. It's the personality change coming in that's hard to bare. 

     

    I've made lots of voice recordings on my phone of moments hes with it so I can keep them and asked him stuff about his childhood we never knew as hes long term memory is perfect so asking him as much questions I can so I dont regret anything as I couldn't live with not knowing things or asking the questions. I'd strongly advice that and it has really helped with my interaction with him. 

     

    I am truly sorry your going through this too. To lose a parent in this way is truly devastating. Please feel free to message whenever you like. Every body needs a stranger sometimes, sometimes it's just easier. My thoughts are with you and your family.

  • Thanks for the advice on keeping the memories, its a great idea.  Likewise feel free to message if it helps you also.  Like you, I've also found talking to Dad about the "old days" helps keep him engaged and it's nice learning about him even while all this is going on.  I guess all we can do is stay strong for them and do the best we can in the circumstances.