My name is Ruth. My mum’s name was Pam. Before her stroke, mum was fit, active, full of life and cared for my dad. A truly amazing lady.
Mum had a stroke on 31st January 2023 aged 81. It was a huge shock. By the time mum made it to hospital (Nottingham University Hospital) the diagnosis wasn’t good. We were told that mum’s stroke had been significant and the outlook was very poor. The next 24-48 hours would be critical but with minimal chance of recovery.
Mum was mainly unconscious although she did wake for 10-20 seconds on a few occasions.
Mum was moved from A and E onto the acute Stroke ward.
I can only describe the ward experience as horrific. Patients and family treated as a massive inconvenience. Absolutely no care. Alarms left to go off. Patients left in undignified conditions. Truly awful. The first night I overheard the one young doctor on the ward grumbling that he ‘hated’ being on ‘this’ ward. I heard the nurses complaining that they were understaffed without the correct skill sets. I heard a cleaner being told to ‘pretend to be a nurse’. It was terrifying.
After 10 hours mum hadn’t been seen by anyone. A sign above her bed said Nil By Mouth - Regular Mouth Care. No mouth care was given. Mum wasn’t turned in her bed. Mum’s incontinence pads weren’t changed. It was absolutely awful.
By the third day we finally managed to get mum on a drip and a feeding tube was inserted. Still no time with a doctor to understand how mum was doing. Still limited nursing care. A large bruise had appeared on mums eye. At this point, exhausted and extremely worried, I made a scene and demanded to see a doctor. Within 10 minutes I was in a side room with the doctor we had seen when mum was admitted to A and E. I had thought that mum seemed marginally better. He disagreed. He said that the very best we could hope for, would be for mum to be permanently bed bound, doubly incontinent, tube fed, needing turning hourly to avoid bed sores, no speech, damaged sight and severe cognitive impairment. At this point, my heart broke. Seeing mum in that environment and hearing that prognosis was devastating. I immediately brought up the topic of moving mum to end of life care. Me, not the doctor. He ‘agreed’ that it was the right thing to do, and reassured me that if it was his mum, that would be the route he would take. So that was it. I demanded a private room for mum. I asked the nurse to remove the feeding tube and for mum to have morphine. Mum was also given a muscle relaxant. Mum was effectively starved of food and water, and died 2 and a half long days later at 2.40am, with me at her side. It was a horrific experience. To call it End of Life Care is a complete oxymoron; there was no care. We didn’t see a doctor and had to demand more morphine for mum, in the desperate hope to relieve her of any pain as she lay there being starved to death.
The guilt is overwhelming. Did I make the right decision? Why didn’t the doctor raise the option of end of life care? Why did he leave that to me?
I guess I’m here trying to find some form of validation; hoping that others, in hindsight, might have done the same. Hoping to learn that the quality of life for some patients after a severe stroke is so poor that the end of life route was the right one.
I am overwhelmed with guilt and I miss my kind beautiful mum without measure.
Please don’t feel guilty you did the best thing you could for your Mum, shouldn’t have been left on your shoulders, but that it the State of the NHS!!! If its any consolation, I made the decision for my Mum and although hard at the time, and the guilt, it was the right decision and I now do not regret it in any way. My Mum wouldn’t have wanted to live like that. I agree with how disgusting it is with their treatment of End of Life Care, its a joke. But please know this, you did make the right decision, and in time you will come to realise this.
Thinking of you. Jane.
Hi Ruth I am so sorry to hear of your mum’s stroke and the pain and heart ache this awful situation has caused you and your family. I’m not speaking as a professional in any way but as a Stroke Survivor and I can only say that I would have wanted my family to make that same decision for me if I was in that situation. I can only say that in my opinion you did the right thing and as heart breaking as that was, I 'm sure that in time you will be able to see that.
In the meantime, please try and remember the good times you had with your mum and cherish your memories. Please don’t feel guilty. You may need some bereavement counselling to help you get through this.
I wish you well and hope you find some peace and you can come to terms with the distressing situation you found yourself in and the decisions you had to make.
Take care of yourself.
@Ruth2 welcome Ruth, what a horrendous time you’ve had. I’m so sorry you had to experience all that.
I am 100% sure that you made the right decision & in time you will come to realise this. I am sure your mum wouldn’t have wanted to be bed bound with 24 hr care & all that that brings. It’s just a shame that you were left to sort everything & that the end of life care was anything but acceptable.
Take comfort from the fact that you did your very best for your mum in truly awful circumstances.
Sending my heartfelt condolences to you & your family at this sad time.
Lots of love
@Ruth2 my heartfelt condolences on the loss of your mum.
I doubt your mum would have wanted to live like that, you had to make a heartbreaking decision in truly awful circumstances, please try not to feel guilty, I believe you made the right choice.
Remember your mum as the vibrant, loving, caring person she was.
Sending big hugs to you and your family, take care and best wishes
I was very sorry to read your comments about your Mom, Pam. It was an awful experience for you.
My Mom was taken because of a massive stroke. Her treatment was awful too but she was an independent woman and would not want to be kept alive with no hope of recovery. Although it was hard to say, we agreed to ‘Do Not Resuscitate’ (DNR).
Having had a stroke last year, I have advised my family that I would want a DNR in the same situation.
It is still very early days for you after losing your Mom. You are grieving. That is sad enough without beating yourself up.
Thanks Loshy. I’m so sorry that the NHS has failed you too. It’s so sad and frustrating x
Thanks so much Jane. I’m really sorry that you had to do the same with your mum. Was your mum given a similar prognosis? I hope you don’t mind me asking x
Thanks Sue. It’s certainly made me think about making my family aware of my wishes. It’s just that I’m so worried that the doctor simply dismissed mum as being too old / unknown to care about. I keep questioning if I should have asked for a second opinion. I did ask, and got to see, the scan results, but I may as well have been looking at Latin as I didn’t know what I was looking at. I did see a dark patch on the right hand side but it wasn’t as huge as the ‘severe’ diagnosis made me think it would be. But what do I know xx
Thank Ann. Yes, you are right. Mum would not have wanted to live like that. I wonder, are there actually people that are simply ‘existing’ with such tragic stroke damage?
Thank you Mahoney. Yes mum was full of life. She waited all her life to be a grandma too, but sadly only had three years of my beautiful daughter, Pearl. They loved each other so very much. Pearl still asks where her ‘Ba-ba’ has gone
Thank you Cynthia. I’m so sorry for the loss of your mum. I do hope that your own recovery is going well. X
Hi Ruth, in answer to your question, yes my Mum was given exactly the same prognosis. And like your Mum it was awful to watch her slowly die, but I still to this day know in my heart of hearts I did the right thing for her (even though it wasn’t pleasant ) and I know this is what she would have wanted. In her earlier day, she always used to say, don’t let me become someone who is not me.
I worked in Veterinary Practice for 40 years and she always used to say just bring some of your euthanasia stuff home from work and do it for me!!! I wish in a way I could have done that for her at least it would have been quick. But honestly do not feel bad you 100 per cent did the right thing.
Keep your chin up, thinking of you, Jane.
Blimey. So sorry Ruth.
I’ve only been in hospitals to support my parents and recently my brother (mother had a stroke and dementia followed, brother bad stroke and still battling).
In all cases we, the family, were the ones providing any care. We really couldn’t trust the wards to be there when needed. Google was a best friend when we gleaned any news, and I know that is a dangerous route, but we felt there was no option.
Wards were FULL of staff, just noone to look after patients. All busy with admin and at computer screens.
I wish I could feel sorry for the overworked, under funded NHS, but I don’t. I just feel angry and let down, knowing that if I end up in hospital its where many go to die.
My rant over - you should be consoled for doing what you could, and the only thing available. All the care in the world would not have changed that outcome. It just seems terrible because it too so long for anyone to pay it any attention.
I hope there are some good news accounts of care received in hospital, because so far it is very negative.
Hi Ruth what an awful tragic experience and in your situation i would have acted very similarly as when my mum was very poorly snd in hospital. Quality of life was massively important to her and whilst her brain was very clear snd sharp right up until the end her body was letting her down and she knew what she wanted.
Her care in hospital was brilliant and it is so variable in different parts if the UK its like a postcode lottery.
Mum passed 6 years ago in August and in so many ways im really glad she passed on her own terms and before any sign of covid.
My stroke was May 22 and the care ive had from the same hospital trust has been and still is 1st class despite the pressures and poor resources that the nhs have to cope with daily.
As others have said remember your mum how she was and all the great times she shared with Pearl xx
great to see at least some good experience. I know its hard for them too.
Sadly my brother’s stroke, 15 months ago, was smack in the middle of lockdown policy still remaining in place in hospitals. He only saw his son once through an outside window because it seemed the hospital preferred the convenience of not having to admit friends/family. We were chasing the ward often to have stupid video calls on a ward tablet, which noone could ever find or work. It was a rough time and also when time mattered most in terms of regaining some functions. Thankfully dropped left side of face and swallow reflex did recover.
Anyway, this was the time that there was uproar about the way Residential Care Homes had been treated, and I managed to contact the MP in North Norfolk who was very efficient (LibDem) and agreed to raise the isolation of patients once again in Parliament. Nothing actually changed though and after 6 months in ‘isolation’ he was turfed out to the best care facility we could find locally.
Faced with the rapid drain of lifetime savings (no house), and limited rehab/physio, we all agreed together to try medical tourism and get him to a Care Resort in Thailand. What an adventure (not all easy). And soooo much more attention to post stroke rehab available. And actual care and availability of carers. Not waiting 20mins+ for assistance with a bathroom visit or mobility, which was the experience in the UK.
There are social downsides with being away though, and after 1 year he will need to return.
Not looking forward to the isolation rooms back here, tbh. But this is the change in scenery needed.
Thank you Ruth. I’m getting there. Sending best wishes. Cynthia
So sorry to hear your story about your mother. This happened to my wife when her father was dying of Cancer and end of life care is actualy down to a family member to try and figure the best step forward for this. A doctor can advise you with your options " Yes its an absolute joke" i dont know if i am right with this part but was you your mothers " next of Kin " then if so you did what you thought was right for your Mum. Do not feel guilty please or it will tear you inside out as its been 8 years when my wifes father passed now and she is still suffering through guilt thinking " i could of done more i could of been there more " we can only do our best when the worst possible unseen scenario comes.
This is my first post on this forum, I feel compelled to reach out to you Ruth. Your mum was so lucky that her precious daughter was strong enough to stand up for her and brave enough to take the humane decision when she was no longer able to do so for herself. Give yourself a big hug and remind yourself that your Mum’s lifelong strength clearly lives on in you. Respect.
Hi @Lara, just thought I’d say hello and welcome to the forum.