Glioblastoma multiforme brain tumour

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Dad passed away

Leer1975
Posted by

My lovely Dad passed away last night after a 3.5 month battle. He has been so poorly, particularly the past couple of weeks. We were expecting him to leave us over the next few days as he was unconscious but he actually passed when the carers turned him in bed late yesterday.

We are all so devastated at how quickly he has gone since being diagnosed. He has had such a tough time from day one and it's been so hard caring for him and meeting his needs. I looked after him at my house the last 3 weeks and spend all my time with him making sure he was well cared for. I know he would be proud of me and my mother as he didn't want to go to hospital or hospice.

I now have an empty hospital bed here and it's heartbreaking. I'm not overly impressed with the support we have received, although District nurses have been great. There's no emotional support for us and I've felt the full responsibility of Dad's care the whole time. Lack of specific support for GBM which is so challenging and we have had to work it out for ourselves. 

Warm wishes to all that have this or have a family member with it. I know how tough it is and I feel for you deeply. 

Thanks for the support you have given me at my darkest moments. Xxxxc

Madesp
Posted by

So sad for you and your family. Sounds like you did your very best and your dad would be very proud. The next few days will see you through as there's much to do with registering the death and arranging funeral etc and that in away is a good coping mechanism. The grief will be there but sounds like you have your lovely family to see you through and don't forget they need their mummy /wife back. Your job is done with your dad his time had come and nothing you ciould have done to stop it and please please don't beat yourself up about what ever else you think you should have done as it wouldn't have been any different.  I read your posts and I felt for you.juggling so much on your shoulders ...take care of yourself x

Mad 
Leer1975
Posted by

Thanks so much Mad, a new chapter has begun without my Dad and we will never ever forget him. My kids are going to buy a Xmas present for him and put it under the tree. He loved Xmas and we will try to celebrate as he would have wanted us to, it won't be the same but we will remember him. 

I wish you well and the strength to continue on this journey. xx

Madesp
Posted by

Yes indeed a new or different chapter. It's a circle of life. I lost my mum in April this year while my son was battling GBM but then she had reached a grand age of 88 and I was then to concentrate just on my son who was the most needy. I also lost my dad 2 years ago but he too was of grand age so I'm not new to losing loved ones but finding out my only son had an incurable brain tumour is the most heartbreaking pain I have never suffered anything like this even losing mum and dad it's just not the same. I do believe that I probably started grieving at the point we were told of the prognosis at first. ....then like a shot from the blue he's unable to walk and Ithe prognosis is now even worse .Had a scan in August and he's found to have mets in the spine. But he keeps me going. ....he rarely complains and if I can do anything to make his life a little easier then that's my purpose at the moment. I'm concentrating on making him happy and cooking his favourite meals when he has an appetite. When he hasn't then I can be there to rub his back or top up his drink or support my besutiful daughter in law with my wonderful grandchildren  etc. 

I wish you well and hope that after the funeral you will start preparing for Christmas and make everything as normal as you can for the sake of your sanity and your family who have missed you so much. It's OK to laugh one minute and cry the next. 

Maddy xx

Mad 
lthenderson
Posted by

Dear Leer1975,

In one and a half days, it will be the anniversary of my mother's death after a two and a half year battle with brain cancer. I too spent the last month of my mother's life taking care of her every need so she didn't have to die in a hospital or hospice. But we did have home hospice care and one of the benefits was that the day after her death, they sent someone down to help load up all the things that had been brought down to her that last month from automatic reclining chair, to hospital bed, to disposing of all her medications. They even helped us set up her old bed and move furniture back to where it had been before it all got shuffled around. It was really nice to not have to worry about such things and we could instead focus on grieving and making funeral arrangements. 

My condolences on your loss and wishing you strength in the days to come.

Leer1975
Posted by

Thank you so much and sorry for your loss. My husband has been fantastic and arranged for collection of all the items we had here for Dad. He also went out today and bought some new accessories for our living room where we had taken care of Dad, we wanted to change it slightly so that it looks different to how it was when Dad was there. I don't want to forget him but I don't want to sit there and picture my Dad in the bed, he hated that bed! He had a form of vertigo the whole time and clung on the bed rails so tight, he couldn't relax at all in it.

Thanks for you kind words I really appreciate it xx