Hi all, firstly I want to acknowledge how amazing Sue Ryder is and how it has helped having this forum. I have just started counselling last week and have signed up to the Greif coach text messages. I’ve been in the forums which have helped me feel less alone.
My mum’s tumour was discovered about 2 months before she died. We didn’t know it was cancerous - just a lump - need a scan. She put off a CT scan because she was unwell. Second scan showed bowel tumour. We waited THREE weeks for results. 2 days after results (GP said - well - I don’t know what the GP said they receptionist discouraged me from speaking to her mum went alone to the along which I deeply regret ) - but my mum said the outlook was not good but I didn’t know if she was over worrying- 2 days after this result which I had chased and chased during the 3 weeks - she is admitted to a and e after seizures and delirium at home. She came to when ambulance arrived. She was type 2. 80. She ate a yoghurt herself when she was in an and e (actually on a covid ward). They took one set of full bloods, a second from the vein. Her blood pressure was very low and didn’t come up after 3 litres of fluids. The doctor told her he was very concerned it wasn’t coming up. She was exhausted. Her temperature had settled and her pulse but not her bp. I took the doctor aside and he said her lactate levels were 8 point something and said she had hours to days to live. I couldn’t believe it. Scan in the hospital showed the tumour has grown massively over the last three weeks whilst we were waiting for the results. I left my mum with my sisters that night who asked for a sedative for her as she was trying to get out of bed. I know she could only sleep on one side was probably uncomfortable. I went home thinking I need to prepare myself to take care of her. But after that sedation she was never really allowed to wake up. Put straight on to palliative care with what seemed like 8 hours, sedated, no fluids, no more obs since a and e, they did weirdly give her glucose on day 2. She took 7 terrible days to die. The whole time I was asking questions as I felt they were NOT doing the right thing. I honestly believe they killed her. They didn’t giver her a chance. Inside I’m angry with my sisters for asking for sedation.
It was 5 months ago. I am a full time second carer for my tetraplegic husband. My mum was my main source of support and gave me lifelong unconditional love. This is destroying me that it feels like they killed my mum and secondly I let it happen. I feel like there is a terrible protocol in place ending the lives of older people. I suffer from depression anyway and I feel like I have nowhere to get help apart from here. I am no further along in grief whatsoever. Like I said, I’m about to start week two with my counsellor at Sue Ryder but I know in reality there is no help for depression, or grief from the NHS or in the community without a very long waiting lists. Also because I’m not very well, I think having counselling from a volunteer from Cruse won’t be equipped enough to help me. I did try and get help from Cruz but got lost in the cycle of administration emails where they wouldn’t reply and then I missed the deadline because I wasn’t well and looking after my husband or sorting out my stepdad. I suffer from chronic fatigue and it’s all very messy. And desperate feeling.
I keep trying to get myself together to get the medical records but mentally keep failing to do so. I don’t even know who I could take them to to see if there was wrong doing. Spoke to Irwin Mitchell who are only interested in the late diagnosis (my mum had all the symptoms of bowel cancer for two years and it was still missed by her GP, I just can’t understand how it’s been missed and feel so angry about it. My mum was given some medication to lose weight because she was Type II diabetic. I thought she was still on this medication but apparently she stopped it a long time ago but mum didn’t tell me. And she lost loads of weight and gone extremely thin. She had bleeding which she thought was haemorrhoids. She was struggling to eat and lost her appetite. She had extreme fatigue and back pain. The doctor thought her weight was okay but she had gone down to skin and bone all apart from the stomach where the tumour was.) my main concern is what happened in the hospital at the end of her life. I went through several years of a legal case with my husband and it was very traumatic and I’m not sure of it go through this with my mum either, but I can’t get any answers. Feel like I can’t carry on without any answers.
My mind goes through the details all the time. The drivers…. Sedation …How when I last spoke in her ear she wailed and reached out for me … I actually ran away. I was in the hospital but could never sit long with her because it was too devastating, I felt like I was dying too. My sisters stayed with her but I think if I had stayed there - the consequences may have been different. At the time in the hospital we collectively agreed. I suppose to ending her life as we’ve been told that the operation successful would take a year to recover from and she would need full-time care at home. But I never saw the scans. I never had any evidence of how about the council was which makes me suspicious. I still don’t know if we took the right decision. I know in an and e the doctor said to my mum you shouldn’t even be speaking to me with levels this high. What this says to me is that something else is going on. If it’s not normal it should’ve been investigated or watchful waiting should have been going on. I’ve done some research myself in the fact she was fitting for two hours or more. Could’ve been the reason why her lactate levels were so high. I’m wondering why didn’t they do something to get her blood pressure back up? Why didn’t they give her even 24 hours just to see if it would recover? They never even took obs again … well so it seems and my sisters confirm this.
I am seriously concerned about the protocols for end of life in hospitals for elderly people and the damage they do not only to the patient but the ongoing trauma for the family too. What can we do? There are so many of us. I felt we weren’t part of the decisions and were not given enough detailed information.
I’d be interested to hear anyone’s thoughts and experiences who may have gone through similar. Sorry, this is so long.