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.
Myself and my brother were just taking about this very same thing. My mum died almost 30 years ago and it was so peaceful and she just drifted off to sleep. My dad on the other hand was so different. It was horrific watching him. The end of life was so so different and very very traumatic for all concerned. I can’t stop going back and reliving it - worst time of our lives and we just weren’t prepared for it
I agree there are so many things missed with cancer . My son who had learning disability and epilepsy with mild cerebral palsy . He died from secondary bone cancer which went into bone marrow , they were not sure of primary . I took him for regular blood test, and when he got pains in legs the hospital and I took him to find out about physio , they said muscular and there was 3 months waiting list for physio . They pain got so bad he could not get out of bed, got him to hospital , they said secondary bone cancer he died within 3months aged 47 years.My point is when they are on medication for a long while ,and people who have learning disabilities don’t tend to complain as they are in plain a lot of their lives , They should be offered ,scans ,endoscopy, colonoscopy every couple of years.That goes for the elderly and other people with disabilities.
I think we hurt ourselves over and over and over wondering “what if the doctor has done that?”, “what if the hospital had done this?”. I’ve done this myself. It doesn’t help, it just makes our pain worse. As cruel as it sounds, nothing will bring them back. I think we have to let it go. It causes us endless pain and we can’t change anything. Remember the good times. They are still in our hearts. They will never leave us. They are now free from pain, remember that. They are living in heaven and will be watching over us and not wanting us to be in pain. xxx
I think one of the worst things is cancer patients have to go to different hospitals for different test. There is only certain hospitals have pet scans, some don’t have scans . So when tests are needed it waiting on transport then relatives are not allowed in with them. Like my son it was painful for him to be moved every time.
@Anne62 I can empathise with everything you’ve written. My Dad was hospitalised for almost 6 weeks til his death in March & I firmly believe it was hastened by the nhs. I saw for myself how wards were run. Never getting questions answered. It was always: “you want such & such”. You’d ask where they were & were met with”Oh, they’re not in today”. Made me mad seeing those posters about being respectful to staff when we were constantly fobbed off. I’m in the middle of a complaint letter & I’ve received the access to records form. I understand there has to be certain criteria to gain access though. It is a trauma for those left behind & you drive yourself crazy with what ifs but I’d like to think if it was me, someone would be fighting for answers on my behalf.
Hi Youareunbelievable,
Totally agree with you about feelings of what if etc. We only torture ourselves more by thinking like we could have done more but yet we can’t move past it.I also believe they are in Heaven and that one day I will see my mum again. I feel she is looking down on me and guiding me. It gives me great comfort and that’s what matters the most in this part of my stage of grieving.
Deborah
Hi suki2
So sorry to hear about your Mum and the traumatic experience you went through.
I went through a similar thing when my Mum had a massive stroke a year ago to the day.
Mum lived alone although disabled due to arthritis, luckily her district nurse was due to visit and found her and called for an ambulance. She was rushed to the nearest hospital’s stroke unit. I was advised to wait an hour before going to the hospital, when I arrived a consultant told me she was seriously ill and the next 24-48 hours would be crucial.
She was paralysed on one side but I was relieved when I saw her that she was aware of where she was and could reply in one word answers when we spoke to her and could open her eyes with difficulty. The next day she was on oxygen and antibiotics as she had developed pneumonia. She was unable to swallow but when we asked her if she was hungry she said no. The consultant asked to see the family after 10 days and explained she would not be able to go home or do anything for herself so the alternative was a nursing home. She had always said she never wanted to go into a home. It was suggested that she was put on palliative care and made as comfortable as possible, and we agreed.
The next day her oxygen had been withdrawn as well as the antibiotics. Four days later the curtains were drawn around her bed and when I went in I couldn’t believe it was my Mum, she was staring and looked terrified, I ran out in tears and went to the hospital chapel. When I returned to the ward she had gone. I feel so ashamed I didn’t stay and hold her hand.
So I do agree with you that palliative or end of life care is so traumatic for the patient and the family. I wish they had let her go the day she was admitted. To watch a 99 year old lady lie there for 2 weeks often with a tear running down her face was heartbreaking and cruel.
I think all we can do is try to remember the good times and hope the bad memories will soon fade.
Aw. thank you for your reply. I have had so many on here but I just haven’t had the time to thank everyone. Your story has touched me deeply. I am starting to feel a bit more - well this is just part of life and death, it IS (or can be) just absolutely awful and cruel, when someone dies and it may be the same when I die. I am starting to think my mum’s passing was quick (7 days) and we didn’t have a period of surgery recovery and chemotherapy along with facing the inevitable death at some point. She would have been so distressed … butmaynbe she wouldn’t have been if I had been there supporting her. I don’t know. I say this now at this moment in time but I go back and forth fretting. It sounds terrible but hearing how long people lived in fear and distress, even if they got to share their last words, a quick passing is maybe a blessing. Maybe… thanks for sharing your story, big hugs to you. I couldn’t stay with my mum either, my sisters and brother did but it was just too much for me and we were the closest of all of us. I think my mum would understand. I’m sure your mum would too. xx