I’ve lost my Mum to glioblastoma and I’m lost

I'm 35 and I lost my Mum, my best friend, to the most aggressive brain tumour which came out of nowhere and stole her from us. On the 4th December I had a phone call from my brother in Ireland to say that Mum had gone to the hopsital to get some results of a scan and she had a brain tumour. They said it was the shape of a butterfly and that she would be transferred to Dublin for a biopsy. 

I was at a work meeting in Yorkshire and so I left to get to an airport and get myself and my two older sisters over to Ireland. From that day I think I was in shock and also running on fight mode, I organised our flights, car, hotel, I immediately started looking up information on this evil tumour and I saw the timelines the research suggested. It was like someone had hit me so hard I couldn't breathe. 

on top of that, because Mum always wanted to make sure we were all OK and not worry us with things, we then discovered that my Dad (who is a fair bit older than Mum) had vascular dementia and prostate cancer. He couldn't be left on his own, and Mum was not allowed to leave the hospital. 

I was by her side almost constantly from that day, and waiting whilst they did the biopsy, from which she was never quite the same, I've got a lot of anger inside over that as right up to having that done she was still walking and talking normally, but after that she battled hard to get back up and walking and talking. She was so determined, that we were able to bring her out for day trips at Christmas to my brothers house where all of our family were together to be with her and make it as lovely as we could. 

On NYE I was at home in the UK, I had a 20 min call with Mum at midnight and it was just like things were normal, even though I knew she was in the hospital. The next day she had her first seizure and after that it was a week by week decline. They said we wouldn't be able to bring her back to the UK, but we had to bring Dad as he couldn't stay in Ireland living alone and I knew neither he nor my Mum wanted him to be put into care. So my husband and I decided he would live with us and our 4 year old daughter. Again, I think I was in fight mode, organising everything, flying back and forth to Ireland to be with mum, I kept hoping I could somehow get her back to the UK because then dad could see her every day. I asked the amazing hospice in Galway, and to my surprise they said she was stable and they would allow her to make the long journey by boat, I then managed to get our local hospice to agree to take her, and booked a private ambulance. I was with mum the entire time; for the week leading up to our journey, we watched films and I talked to her and helped her with her drinks, she always loved a cappuccino, and she was still able to eat and drink and communicate with me. On the day, I asked the ambulance crew to stop by the ocean so Mum could see it one last time, which they did. We made the 10 hour journey, by ferry, and I held her hand the entire time. 

she was so determined she was going to make it to our UK hospice, and she did. We arrived at the hospice on 1st Feb, and from then we were all with Mum every day, my husband and I took our daughter in, and my Dad as much as possible, I think it became a new normal and in my mind I think I believed this was just how it would be from now on, mum would stay stable and just be there and we'd see her every day...

On the 18th Feb the Dr called me to say that she didn't think there was long left, Mum had declined. I was there within the hour. I went into Mum and she looked at me and I told her that I loved her, that I wasn't leaving her side and that we'd all be with her. She nodded and then closed her eyes, I called my brother and he immediately left his work and got on a ferry to come over. 

Both sisters, my Dad, my brother, one of my nieces and my husband and I were all with her, talking, holding her hands, and were all with her on the 19th Feb when she finally decided she'd had enough and passed away. 

I am the youngest sibling and I seemed to take on the role of comforter, I cried, but I also felt I had to support everyone else. I guess I get that from my Mum. I never thought I would be strong enough to cope with being there watching someone I loved so much pass away, organising a funeral, all whilst trying to 'be strong'. And now it's almost July, I discovered that I was pregnant not long after Mum passed away, with our second. I know she wanted me to have another. But I'm struggling to connect with the bump because I feel like it's not fair that this little bean won't ever have one of Mum’s amazing hugs, or hear her laugh. 

I've also been caring for my Dad 24/7 and the whole COVID situation has meant I've had no help from my older sisters, one seems to have high anxiety about getting involved in the care and doesn't seem keen to spend a day to give us a break. Sorry I know this is a long rambling post. 

I worry there's something wrong with me because I've not cried floods every day like I thought I would, it comes over me at random in strong awful waves and when I cry it's like my heart has been ripped out. But now its been 4.5 months I feel that everyone outside of my closest family, is expecting me to be OK. But I'm really not, some times I just want to be with Mum, wherever she is. I can't bare the thought of living the rest of my life without her. We talked or messaged every day, and I feel like there is a huge void that noone can fill.

i try to be strong for my little girl, I get up each day and try to carry on as normal. I also made a huge career change which I told Mum I'd do when she was in the hospice, and I'm going to re train as a teacher, after years in marketing. I suppose it all made me evaluate my life and that time is so precious I had to have more time with my daughter/s. 

So sorry for this long ramble, I just feel like even though my husband and my best friends have been so supportive they don't quite get how it feels. I just feel so alone, and whilst on my face I might look like me, inside I feel despair and loneliness and I'm not sure how I can ever feel 'normal' again or feel happiness again. 

xx

Parents
  • Hi dont you go apologising that what we are are all here for to support one another youve shown what a lovely kind caring person you are ime sure its helped getting it off your chest when you lost your mum they say mum is god in  the eyes of a child and for some that goes into adulthood some i say because there are many that arnt so good .i dont think we ever truely die .maybe our bodys do but but the love and things that make us is energy and thats here till the end of time your mum will still be around some where watching ive learnd there things go on in this world that we will never understand or are ment to not the god thing but ill not critisise that as how can take a good look at your daughter i mean a realy good look youl see your mum in her. as to your partner how can he truely understand how you feel its your mum but sounds to me like hes doing his best.at the moment you will be thinking is this it am i going to feel this way forever a scary thought but trust me the sun will shine again but it takes time have you had any counciling it can realy help you can get maybe a few answeres i used my local hospice counciling service i figured they deal with loss every day and dont just get it out of book thanks for sharing your story with us we are  all in this a club none of us want to be in but dam glad we are i lost mum dad a grandchild .and two years ago the love of my life the sun shines now not so brighty but it does shine i mentioned it so you know ive been where you are now and its its agony you didnt feel was possible just take it a day at a time it dose get eisier you have no choice parts of your brain does it for you. best wishs and so sorry for your loss .as to your sister well not everyones as strong age dosnt have much to do with it .paul ps sorry about the spelling i have mild dislexia and the spell correction needs turning off on this site its terrible

  • Thank you so very much for your kind words, my heart also goes out to you for everything that you've also been through. 
     

    I promised my Mum that I would take care of Dad, and I hope that wherever she is, she feels that I am making her proud. 
     

    A friend said to me only the other day, that a photo I shared of my little girl looked just like my mum, and that really gave me a boost. Someone said to me; that she lives on in me and in my children, and I also read that our energy never dies, it remains on this earth. 
     

    I have got in contact with Cruse bereavement team and I am waiting to have someone allocated for my sessions with them. I think after that, I might still need a private counsellor, but will see how it goes.

     

    meantime, sending love and support and so glad I posted, it's good to not feel alone in this new normal.

     

    Take care 

Reply
  • Thank you so very much for your kind words, my heart also goes out to you for everything that you've also been through. 
     

    I promised my Mum that I would take care of Dad, and I hope that wherever she is, she feels that I am making her proud. 
     

    A friend said to me only the other day, that a photo I shared of my little girl looked just like my mum, and that really gave me a boost. Someone said to me; that she lives on in me and in my children, and I also read that our energy never dies, it remains on this earth. 
     

    I have got in contact with Cruse bereavement team and I am waiting to have someone allocated for my sessions with them. I think after that, I might still need a private counsellor, but will see how it goes.

     

    meantime, sending love and support and so glad I posted, it's good to not feel alone in this new normal.

     

    Take care 

Children
  • Hi thanks ime doing ok now its a dull ache now but i thought ime going to be like this forever but ime not . Yes cruz is ok ime surprised you have got some counciling from them but i do suggest you talk to your local hospice there everywhere just ring and ask fo visiter center then ask there i when to drs one one and it was someone that had got it from a book you cant learn this that way the councilers usualy start out looking after the sick anyway your choise but in my case yes i had my adult kids but how could they understsnd the pain Shakespeare's said everyones an expert at dealing with grief till they have to go through it themselve yes your mum is in your child and you but more than that .sorry your dads suffering dementia seems to be another scurge on humanity but dont wear yourself out or feel guilty if he needs to go in a nusing home my cousin felt terrible guilt over it till we had a chat about it like you her brother was rubbish but some are weak its just how they are made just dont wear yourself out i bet your mums smiling now knowing what a great daughter she has i would be in her place .p