Feeling Useless

I'm 21 and my husband is 28. We've been married just over a year. He had a benign brain tumour since he was 10 so 2002 and had it operated on. In 2017 he had his routine mri scam which showed that his tumour had begin to grow. We got married in 2019 a month after we were told that chemotherapy and radiotherapy had shrunk the tumour slightly and stopped it growing. We also bought our first place together.

 

4 months after this, we were told it had carried on growing and was now a grade 4 tumour. As my husband is young and has tolerated all treatment well they have carried on giving him chemotherapy. 
 

Now sitting here writing this post in April 2020 I don't know how we've got to where we are. I know my husband has managed to live a lot longer than statistics would say but within 6 weeks he has gone from working a full time job to not being able to do anything for himself. He can't stand, go to the toilet or even feed himself. I feel like I have no idea what to do to help, some days he does not even know who I am. The carers that were coming in to help now don't due to the corona virus and me being home with my husband to help. 
 

I don't feel like I can cope anymore and I feel extremely guilty of this, I am still sitting my university exams but have also become a full time carer whilst managing to keep our home in an acceptable state.

 

I'm also dreading what is to come. We haven't made any plans and due to him having a tumour since 10 he was not able to get any life insurance. I'm terrified of financially what is going to happen but more than that I have no idea how I will cope without my best friend. I feel like we have had such a small amount of time together and that it is being taken away from us both so young.

 

i suppose I'm just looking to vent and family and friends as much as they care, they don't seem to understand. Any advice of how to stop feeling so guilty and stressed out and how to comfort my husband on such an awful time would be amazing.

  • Please please don't feel guilty- you are doing an amazing job and should be proud of yourself. I lost my dad on Friday to cancer that had spread to the brain and spine, he had decreasing movement and was in unbeatable pain so ended up in a hospice. Even then we weren't able to be with him 24 hours a day because of children, but the time we were there was exhausting. I don't know how you are managing on your own. Some days it's so hard you feel like you can't cope but then you just do because you have to. Do you have a local hospice you could turn to. The staff there are amazing and will support you to and can offer financial advice. Stay strong

  • I feel same, all happening too fast and cant go near my sister and she is going downhill fast now, no visiting allowed and she might never see her son again.  At least we can all chat on here xxx

  • I'm currently looking at hospices but it's not really something my husband wants. Which just adds extra guilt as I really can't cope. It's not just the emotional part of it it's the physical. He's completely immobile and I'm having to get him from bed to wheelchair, sofa, toilet etc. He's almost 5 stone heavier than me and a lot taller. 
     

    I just don't know how anybody copes with this. I'm also told if we manage to find him a place in a hospice I won't be able to see him for 12 weeks due to COVID-19. How am I going to be ok with that and explain that to my husband also.

  • Don't think half the general public understand the heartache and pain people who have ill or elderly family members that we don't know how much time any of them have left are feeling. Such uncertain times with cancer as it is without having to deal with not being able to see anybody due to the virus.

    i do hope both her son and yourself manage to see her as soon as x