Mum is hanging on

Raphael3 1 month ago

3 replies

My mum was sent home from hospital 2 weeks ago to her own flat with me looking after her. We were told that her bladder cancer had spread to her lymph nodes with other complications and is incurable. She deteriorated very quickly in the first week. She walked into her flat with me on the discharge day and has deteriorated daily. By day 6 she was in a hospital bed and by day 7 not taking any oral food/medicines and on a syringe driver, barely conscious. The district nurses have been really supportive. This last week she has deteriorated more slowly. This is day 14 she has lost so much weight she looks like a different person and not talking at all. Before she became unconscious she said 'I want to go, why can't I go'. Me, my brother and her friends are really surprised how fast she deteriorated in the first week compared to the second also how much longer she will be here. She seems to be battling on for some reason. I'm sharing this and wondering about other peoples experiences. 

Daffodil 1 month ago

Dear Raphael3,

W e are so sorry to hear about your mum's swift deterioration following her return from hospital two weeks ago. It is good to hear that she, and you and your brother, are well supported by district nurses. It sounds like you are doing a lot for your mum. Thank you very much for reaching out in this forum.

As for the question of your mum hanging on to life when she had expressed the wish to go, I hope other members of the Community are able to share their experiences.

Meanwhile, I don't know if you have explored the resources on the Marie Curie website yet? We know that it can be upsetting to think about the end of someone's life or read descriptions of what may be happening in their final weeks or days. But if you feel ready to access this information, it is available under the heading 'What to expect at the end of life' here: https://www.mariecurie.org.uk/information/end-of-life. This page also contains information about caring for someone at the end of their life. Finally, it is important to look after yourself in this difficult time, too. 

Take good care,

💛 Anke, a Member of the Marie Curie Online Community

Raphael3 20 days ago

Thanks for your reply Anke, 

My mum passed away yesterday the day just before my brother wa due to leave to catch his flight home. She had two weeks at home from the hospital discharge with her family and close friends visiting her. The second week was the hardest watching her fade away getting thinner and not really responding at all in the last few days, only grimacing in pain when being moved. We were really fortunate that she kind of chose to pass while my brother and I were in the room holding her hands and speaking to her as she took her last breath. 

I didn't really know what to expect from this last two weeks and it certainly hasn't gone how I expected. The most important thing is that we were able to care for her at home and that she had family around her. This Marie Curie online community and web info helped me to understand end of life care. Thank you. 

LauraCW 12 days ago

Hi Raphael3, Thank you so much for your post. I’m so sorry to hear of your Mum’s death. I am so pleased that you and your brother were able to be there with your Mum at the end. It sounds as though you looked after her beautifully. I imagine life feels very strange and difficult now. Please do reach out if you think that we can support in any way. Marie Curie does also provide Bereavement Support over the telephone if this is something you feel may be helpful at any point. Take care. Warmest wishes, Laura, Marie Curie volunteer for the Online Community Team