I am struggling to cope after my mum died. She was not given the care and support she needed medicinally and the image of her suffering won’t leave me. She was released from hospital with all EOL medications and yet the care home staff and district nurses failed to administer to her properly and she was refused a syringe driver even when a doctor had authorised one. Had to film her gasping for breath, calling out for her mum and suffering in pain. It haunts me minute by minute and I just want to be with her.
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@Ru27
I am so sorry to read this. There is no way your poor mum should have suffered like this. I work as a paramedic in a gp surgery and am very passionate about making eol as painless as possible. I cant believe that they didnt start the syringe drive sooner there is no need for suffering in this situation. I dont know how you move past this apart from trying to remember the good memories. My mum died suddenly and unexpectedly alone at home and we found her collapsed at the top of the stairs. Its heartbreaking as i dont know if she suffered, i think about it a lot but cannot ever get an answer, but its better than witnessing her suffering. Sending you hugs
Thank you so much for your message. I am also so sorry to hear you have suffered so much with your situation. Loosing a mum is like nothing Ive ever known. I know it is meant to be the ‘natural’ way but nothing about it feels natural at all. Perhaps it would have done more so if she had been allowed to die in dignity.
Thank you for the work you do. There are so many incredible healthcare workers and medics who go out of their way to provide support, help and painless EOL but sadly a small minority can affect us all. I try and remember good memories but Im currently in the midst of regret, anger and just indulgent sorrow.
x
So sorry to hear of your awful experience. The hospital didn’t recognise my mum was dying and released her to recuperate in a nursing home without any adequate information being passed on or medication prescribed, and they gave her bedsores and c difficile which killed her, when she had only initially broken her wrist. So I’m not too fond of the health service. Sorry you had to face this but I hope these images will be replaced by good ones from her life and the things you did together.
My mum was on EOL for six weeks .I had to watch her stave to death in the NH. It was horrendous I had to fight for pain relief every step of the way. She died on the 26th of April this year. I close my eyes and see her in that bed still I was with her every day and night towards the end. No one should have to go through what she did I tried so hard to make it as painless as possible.
You could have done no more you were there and the memories will fade. Replaced by a lifetime of good ones till then we take small steps every day and get through with kindness.
My god I am so so sorry. That is horrendous. Why is it such a fight to get pain relief and make our loved ones comfortable? I just do not understand. There is no dignity or compassion in dying and it’s barbaric. Was she released from hospital with EOL medications or did you have to try and sort them all out at NH within community? x
Mum was released with the EOL medication but the NH was incompetent and under staffed and dismissive of my concerns and her needs, we tried to move her but without success it was horrendous and I was making decisions about her care, I thought they would look after her. I couldn’t leave her alone, I asked the GP and the Admiral nurse and the hospice but they all said that the NH had everything in place . i don’t know what to say all I could do was be there look after her and shout for pain relief st each stage , I think about it every minute of every day.
I just dont understand why this has happened. Where i work we mainly have care homes rather than nursing homes but they manage the eol so well. The meds are prescribed and the district nurses or hospice team are available 24/7 to go in and administer meds when needed or start the syringe driver. Being a nursing home its something the nurses can do themselves. Its just tragic that people are suffering unnecessarily. Everything is geared towards dignity in death. I really think as hard as it may be that you should be raising complaints against these nursing homes
I am not sure what to say to you, i had no concept of the world of NH’s and EOL before March this year of even the way people are treated in hospitals. The hospital ward mum was on before she was discharged could not cope she was left unchanged for hours as there was only person to change her before I returned in the afternoon. They left a six bed ward with two people that were dying on it unmanned and asked me to press the buzzer if one lady who would remove oxygen masks ans get into beds started to “play up”. I was on the ward every day for hours and helped others and my mum to eat as food was left in front of them.
As for the NH I was so glad once she was moved into there thinking she would be safe which she was as the basic care was adequate, again I was there at least 8 to 10 hrs a day and into the evening, Definitely no dignity in dying I cant write any more, I had to highlight her increasing pain at every step and I had raised my concerns right at the beginning as i said. No one no one should have to go thought that. I’m sorry there is no way I could raise a complaint I can’t even type this post without breaking down.
I cant get through a single day without thinking about it, sorry
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You did your absolute best. The NHS were incompetent with my mum and basically were responsible for her death when she only had a broken wrist. She caught c difficile in hospital and they didnt notice her decline. You did what you could do, as did we for my mum. My opinion of the NHS is at rock bottom. They were well staffed but didn’t seem to care.
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It breaks my heart to read all this. I too had to witness my Mum leave this earth in immense pain for literally no reason. I did complain and after one year, I got an apology from the NHS. The apology obviously brought me no comfort whatsoever but the validation that an injured dog would have been treated better did. My aim was to highlight the failings and lack of processes in place for EOL patients and to hopefully stop it happening to someone else’s Mum. I didn’t feel up to putting the complaint together at the time as it’s very difficult to revisit but what kept me going was the thought of her. What would she have done if it was the other way round? If I had died in pain? Probably arranged a picket line and march somewhere knowing her! That’s what spurred me on, she would have done it for me and without hesitation. Unfortunately, it did nothing for the images. They will never leave me and I have to endure those for the rest of my life but I hope she’s somewhere knowing I what did for her, that I validated her. My heartfelt condolences to each and every one of you.
If anyone wishes to read, I did find an interesting report, I have posted the link below and hope it works. I appreciate not everyone feels like it but for those that feel they want to, it may help to know that you’re not alone.
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Hi, I’ve just had a look through this and it’s so relevant to my mum too. Not recognising she was dying, care not in place, pain relief not provided. Do you know when it was written, I couldn’t see this? I trusted the NHS and really shouldn’t have done. I’m currently waiting for a response to my complaint but I’ve no faith anything will change.
Hi @Magsclar I believe it was as long ago as 2015 and just goes to show that literally nothing has changed since. Keep the faith with your complaint. I didn’t think it would drastically change anything, I did it for her but if I’ve stopped even one daughter or son not having to witness what I did, then it was worth it.
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Hi @Sal46, I did it for just the same reasons, to contribute to stopping this happening. Unfortunately nothing seems to change. My mum was barely eating, couldnt seem to stay awake for more than a few minutes, and was getting hospital-acquired delirium. All signs of her body shutting down, yet when I asked questions I was told she would be ‘absolutely fine’ to discharge and her notes were ticked to say not expected to die in the next 3 months. I’m so upset she suffered this and the bedsores and the terrible sickness from the c difficile when she had been alert and walking by herself when first admitted. We shouldn’t have lost her in that way. I’m hoping at some point standards will improve for other people. So sorry all of us have had to face this. X
Very much the same story with mum they said she was medically fit just don’t know whet to believe.
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@olive3 Don’t blame yourself in any way. It’s only because you have hindsight now that you have a clearer view of your situation. Remember you were being guided by medical professionals. You did what was right at the time, in those moments, with what you were being told.
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@Magsclar I can feel your pain through your words and it resonates with me so much. These were the strong ladies that brought us into this world who would have laid down their lives for us in a heartbeat. Why are EOL patients just kicked to the kerb? I wonder who makes these ultimate decisions and how they would feel If it was their Mum.
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And one day it may be them themselves, facing these uncaring attitudes. No-one should be facing this at the end of their life. I wondee, like you, why nobody seems to think it matters.
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