Struggling to support my mum with stage 4 glioblastoma

Hi all. 
My mum has a grade four gioblastoma and treatment isn't being done as it's not going to make any difference and she's just not strong enough. She's so confused all the time and doesn't remember myself and my brother, but is able to recognise many others... dates and times etc. I'm quite hurt and confused by this but my question is; how do I cope with the constant nonsense chatter, repetition and asking questions. It's non stop absolute nonsense chatter that 90% I can't understand. I want to support but I just don't know how. We have prompts of photos, dates and similar but to no ease.

I feel like I'm being selfish but I can't take it much more!


  • Hi there ...

    This is one of the hardest things to get our heads around .. it hurts .. it's confusing .. and it's the unknown of where or how to come to terms with everything ... 

    All I can say is my expierance with those that have gone through this .. one thing is your mum probly remembers you and your brother as children ... my sister with her dementure used to say her daughter wasn't her daughter and say she was lying ... she thought our mum and dad were still alive even though they had been gone thirty years ago .. she was worried she'd get told off for being late home ..

    She turned from the kindest wisest lady to sometimes feeling angry .. and would often those close to her to "go away" .. every visit was so hard ..

    What helped us was thinking it's not her saying these things it was the dementure / cancer or whatever they have .. so we accepted she must be more confused then we were ...

    We went into her world .. where ever that was at the time .. if she thought mum was comming we told her mum called to say she was going shopping / visiting someone and would be back tomorrow .. we stopped trying to tell her the truth as that would upset her .. 

    Imagine living in your mum's thoughts .. how hard that must be for her ..  remember she taught you talk  she held your hand and so slowly got you from taking a step, to walking yourself .. took you to school .. held your hand through growing up .. which as a mum of two lads isn't easy .... 

    Now it's time for you both to hold her hand .. help her on this journey , go into her world .. it's lovely you show her photos but if she doesnt remember them , that's o k ... my sister loved her rock and roll music .. Bill Hayley and the like .. we'd sit and play it on u tube and even near the end she'd tap her fingers and toes and sing along .. she knew the words even then .. music is amazing .. try and find her music and see if it works .. your doing amazing ... no one teaches us how to get through these times .. but with understanding and love you'll be pleased you did ... take care and know your not alone .. many of us have been where you are now ... Chrissie x 

  • Hi

    I don’t know whether this will help, but I can share my experience which is still very raw. 

    My wife passed away from a glioblastoma a few days ago.  It was diagnosed 6 months ago and by the time it was diagnosed she had lost the ability to retain short-term memories and had also lost a lot of her long-term memories. We never told her about the tumour and she never really asked what was happening to her.  If we had told her she would have forgotten 5 minutes later anyway.

    It is natural to feel frustrated and angry.  I did on many occasions.  My wife was able to recognise most of her close friends and family up until the end but she had no grip on dates and times or recent or past events.  At the start we showed her the same set of photos several times a day and each time it was like seeing them for the first time. 

    I think the best advice I can give is to stop trying to make sense of what she is saying.  Just go along with it and don’t worry about whether it makes sense.  You may just need to give the same response many times but just do this very calmly if you can.  You are not trying to make her remember, you are simply trying to respond in a way that makes sense to her at the time.  Do not worry about telling her things that are not true – focus on giving her responses that you think she would want to hear.  My wife was unable to remember that someone very close to her had passed away many years ago and in the end I stopped telling her that they were no longer with us as it just upset her then she promptly forgot again.

    At the start I tried to use photos to help her remember past events, holidays etc but quickly realised that it just upset my wife as she knew that she should have recognised them.  I stopped doing this very early on. You need to accept that your mum’s memory and state of confusion will not improve and is likely to gradually worsen.  This is really hard.

    You will not be able to do this on your own.  You will need regular time out, even if this is just a 15-minute walk in the fresh air once a day.  If you have friends and family nearby see whether they would be willing to spend time with your mum even it is only half and hour every so often.  I found that having 2 friends chatting to each other in the same room as my wife worked well as she could engage as much or as little as she wanted to. 

    You are doing an amazing job but you will probably never feel that what you are doing is good enough.

    As Chrissie said, you are not alone.

    Take care.

    O  x