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Carers UK Forum • Struggling with feelings of guilt after my mother died
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Struggling with feelings of guilt after my mother died

Posted: Thu Jun 10, 2021 7:02 pm
by Agnes _2009
Hi everyone,

I am a former carer.... I cared for my mother full time from the day she was diagnosed to the day she passed away.

When my mum was diagnosed with terminal lung cancer that had already spread to her brain we,were told that with radiotherapy and immunotherapy treatment she could still have years to live so, I was not expecting (or ready) for the little time it took to get to the end.... or maybe I just didn't want to face the reality of the situation and so when she started getting worse I kept telling myself that it was the side effects of the treatment that were causing her health to decline so rapidly and that we just needed to get her through the treatment and then she would be able to enjoy her life in relative comfort and we could still make more memories and enjoy our time together for however long she had left... but, the last time she was admitted to hospital because of a infection she developed after her first course of immunotherapy she got really depressed and while in hospital she stopped eating (she had given up) and the doctors decided that whatever happened from that moment on my mum would not go back to hospital and would not receive any further treatment. I was furious with that decision because I was not informed and she was not in the right frame of mind to make that decision alone but, I respected it.
When she was discharged that last time and was brought back home I was shocked to see how poorly she was (she weighed 4 stone 😪) and that is the moment I was forced to face the fact that we were getting to the end and she was sent back home to die. Just short of a month later she passed away.

The week of mum's death I was worried about her and called her doctor who organised a video call with us and got in contact with a local hospice to help me with the end of life care plan for my mother. Shortly after we had a visit from a hospice nurse to show me how to administer the stronger pain medication safely and also to leave the "just in case" medication box that the nurse would need to give mum to help ease her discomfort at the time of death if necessary.
The staff from the hospice were and still are a great support. They are amazing.

The day before mum died (Saturday 19th of December) I called the nurse at the hospice because it looked like my mum was having difficulty breathing and I was worried. After a video call the nurse said that my mother was in the process of dying and what I thought was problems with her breathing was in fact perfectly normal when people are dying and she said that mum looked comfortable and she didn't look stressed or afraid. I was then told that mum would probably pass away during the night or early the next day. At this stage of the conversation I can't even speak because of how much I was crying... like I never cried before.
The nurse was lovely and she was telling me how well I have been doing looking after mum on my own and that mum was so lucky to die at home with us, etc and then she said "if I decided to stay with mum during the night it was ok but if I missed the moment of mum's death that was also ok". After the call I decided that I would stay with my mother through the night... but I didn't because I couldn't stop crying and it was too painful so I went to her room regularly to check if she was comfortable and to wet her lips. At around 2.50 am I asked if she wanted the light off and she nodded so I turned it off, stroked my mum's hair, kissed her forehead and told her I loved her... only went back to her room in the morning and she looked like she was asleep but she was dead.
Now I really struggle with the fact that I was not there for her when she died and I wish I could go back and do things differently... I didn't stay with her because it was too hard and painful for me, I was SELFISH
Sorry for the long post and thank you for reading it

Re: Struggling with feelings of guilt after my mother died

Posted: Sun Jun 13, 2021 11:03 pm
by bowlingbun
Someone should have told you that this often happens. A friend of ours for many years died in the hospice almost as soon as his wife had left. He'd been a brave soldier, fought at Montecassino, but very modest, I knew him for 30 years before a family member told me. I'm sure he'd been putting on a brave face, but wanted to die without any fuss, upsetting anyone. Almost as if admission to the hospice gave him "permission" to end the fight against cancer. His wife found this difficult to start with. I want to "slip away" without a fuss when my time comes. My "boys" know I love them,by the things I do for them, and vice versa.

Re: Struggling with feelings of guilt after my mother died

Posted: Mon Jun 14, 2021 7:41 am
by Woodpecker
Dear Agnes
You should feel proud of the love and care you gave your mum. I do understand that you feel you should have been with your mum when she passed, but she wanted to spare you that moment. Your mum knew you loved her, that's what matters. My mum passed away in a nursing home. She waited until my brother and I left, just for a short time, then slipped away. My mum wanted to spare us the pain, it's what mums do. xx

Re: Struggling with feelings of guilt after my mother died

Posted: Wed Jun 16, 2021 5:49 am
by Agnes _2009
Hi,
Thank you both so much for your messages.
My mother was just as you describe your friend and your mother, the sort of person that did not want a fuss... and I also think that seeing me crying would have made it harder for her to feel she could go. .. we had a short conversation about her dying a few days before she passed away and I felt like she was almost asking me to let her go and making sure I knew she loved the kids (her Grandkids) and I more than anything else in the world and that she knew how much we loved her.
I just felt like I had let her down and that I should have been by her side at the moment of her passing away but after reading your messages I now realise that she would not have wanted to make the moment harder for me and for herself.
This sounds completely crazy but in the week before my mother died the days were grey, cold and it rained non stop through out the week but the day she passed away (20th December 2020) it was the most beautiful winter's day I have ever seen... and to me it was her way to show us she was free and that it was ok to let go....silly I know.
Thank you both so much for your support.