I have been devastated by the final hours of my mums life. She had terminal cancer and I was helping to care for her at home. She eventually lost the ability to swallow so was put on a syringe driver. She then became barely conscious. However was still complaining of pain. Her breathing changed early in the evening and she was moving around with a look of discomfort on her face. We called the community palliative care team and the nurse came out. She said mum looked in pain. They gave her more morphine but it didn’t settle her. For four hours we had to sit and offer comfort and hold her hand as she panted like she was running a marathon. Her heat was racing she was very agitated and sweating badly. We called the palliative nurse back but she said there wasn’t sign off to give her any more morphine we had to watch desperately waiting for an hour to pass for her to be allowed another dose. Then suddenly she stopped breathing, head turned to the side eyes opened and she was gone. I want to know if anyone else has been through a death that wasn’t peaceful. Is it normal? Was she suffering? Should she have been able to have more pain relief? I am tortured by it. All I have experience of reading about are mostly deaths of people slowly slipping away peacefully away as if to sleep, or Cheyenne stokes breathing fast then slow. Not the horrendous ordeal we went through.
Hi Emma, I too have experienced the same thing. My Mum had metastatic triple negative breast cancer. Her last chemo was July and then there was no more treatment. Mum had been pretty good all through her 2½ year ordeal but started to change in personality about 4 weeks before she died 1 week ago. She started to talk more slowly, became more reactive and angry. We made the palliative care referral 3 weeks before she died and getting things in place was a nightmare - we thought palliative care was all under the one umbrella but we were wrong. We had to fight for everything, especially with the GP who were more concerned about their staff shortages and had no sense of urgency whatsoever. They prescribed meds to chemists that were closed, sat on prescriptions and we had to chase up daily. I spent a lot of time on hold, in a queue at the drs because I was on hold for over an hour. The carers were lovely, they would change mum 4 times + a day as she lost the ability to stand and walk to the loo. This was very degrading for her and she pleaded with me to just let her die. As each day passed she became more and more agitated, every time she woke she would ask 'am I dead' and then got hysterical and angry when I said no. I spent day and night at her bedside. She told me that she 'trusted me with her life and I've left her down and she'll never forgive me'. The agitation got worse, sometimes the nurse would give anticipatory meds but then a different nurse would say she's not agitated and do nothing. The day before she died she was climbing the walls, trying to get out of bed, screaming and shouting that she wanted to die and why wouldn't we help her. They upped her syringe driver and she was peaceful for that evening. She then died at 5.39am the next morning, were were all with her. It was THE most appalling, traumatic and undignified experience to witness. I feel like I have let her down. She wanted to die at home and none if us we're prepared for what was to come. No-one warned us what to expect, you just assume that your loved one sleeps more and then passes away peacefully. Not so. It was 2 weeks of heartbreak and conflicting emotions, anger, frustration, devastation. The nurse told me that mum knew what she was saying and that it wasn't terminal agitation. I'm heartbroken that I've failed my mum when she needed me the most. I feel devastated that her last few weeks were full of pain, anger and distrust. I told the nurse that I wouldn't let my dog suffer like this so why is this happening to my mum? They were giving her drugs to sedate her till she died, bu
t they didn't do it quicky enough and she had days of upset, anxiety, hatred for us because we couldn't help her. How is this acceptable in the 21st century? My dad has said that he will not put us through that if he is in a similar position - he's said that he'd go into a hospice so we don't have the trauma. My parents were lovely, kind, hardworking and generous caring people and their union has ended in such a cruel and traumatic way. None of us will ever get over what Mum had to go through, our hearts are forever broken
