I blame myself for my DMs death and don’t think I can live with the guilt.

[PurplePenguin28]

I’m sorry in advance for the long post. I just feel so overwhelmed and lonely, I need to get it off my chest.

My mother passed away suddenly 5 months ago, she was 62 and was well up until an undiagnosed leg DVT traveled to her lung one day while she was in town.

She was out shopping and suddenly felt a pain in her chest and was breathless and lightheaded. She sat down on a bench and called me. Within 10 minutes I had met her and we went to A&E where they did tests and diagnosed a PE (pulmonary embolism). It was quite large and so a fast acting clot busting drug was advised, it was administered in A&E that evening and she was transferred to a ward in the early hours for observation with 24 hours strict bed rest due to bleed risk and to continue treatment with more blood thinners.

I phoned the ward mid morning for an update and was told that my mother was fine and to just come back over to the hospital for normal visiting time.

On arrival at 2pm we found my mother sat in the chair beside her bed, she hadn’t been in the bed at all and wasn’t being monitored. She was being sick and was drowsy. We questioned straight away and were told that the doctor had said that she should be mobile and that they had no concerns. We asked to speak to a doctor and were told they would be around to speak to us soon. Hours passed, we kept asking and waiting to see a doctor, but nurses kept saying everything was fine and the doctor would see us soon. Afternoon visiting ended at 4pm, we stayed until nearly 5pm hoping to see the doctor but were firmly told to leave and come back at 6pm for evening visiting, so not wanting to upset staff and be removed we went for a coffee and waited in the hospital foyer until 6pm.

On arriving back on the ward I found my mother’s condition was still very poor. We hadn’t been able to hold a conversation with her since arriving at 2pm, she had become barely conscious and she still hadn’t been seen by a doctor. Nurses still maintained that she was fine and they had no concerns despite family continuing to ask for help and to see a doctor.

My mother went into a self induced coma around 9pm that evening and passed away. A doctor finally arrived after she had a seizure and an emergency call was made, but it was too late. A CT scan showed that she had bleeding in her brain which had caused irreversible damage.

I feel so responsible for what happened. My mother was so strong and always stood up for the underdog and for what was right. She was a thoughtful and caring mother who did so much for me, she was my best friend, but the one time she needed me to stand up for her I failed. We put her into bed that afternoon and put her on the monitoring system, which was flagging issues, but that didn’t matter either. The staff just shut off alarms and said she was fine. I feel like I allowed them to gaslight me. I didn’t push hard enough, I didn’t fight and cause a fuss for fear of being thrown out and now my mother is gone. I don’t know how to go on living with what happened.

My goodness. I’m so sorry x your pain is so evident in your post.

you did not fail her. You did all you could

I hope one day you can find peace x

thank you for your kind words. I’m so sorry to hear that you’re unwell and not being listed to. It feels like a lottery, it takes that one time to get a good one and you know you’re okay. I hope you’ve got the help you need? 💐

Oh OP I totally get it. I lost my beloved Dad last year to sepsis and DKA and feel exactly the same. The worst part is I am a Nurse. He had a diabetic wound on his heel that rapidly deteriorated, I had him admitted to the surgical assessment unit for the vascular team to review him and he was just sent home. He was a type 1 diabetic, awaiting heart surgery and had many red flags. The hospital didn't even do a set of bloods. He was readmitted 48 hours later and died of multi organ failure following a cardiac arrest in ITU the day after - none of us were with him and I will never ever forgive myself for not shouting louder for him. The care was just awful.

What I did do was raise a complaint via PALS, this was then escalated to a significant incident (catastrophic as he died) and investigated via the patient safety team. A strategic judgment review concluded that if his treatment had of been different in the early stages his outcome may have been different. I took this to Solicitors and am now suing the NHS trust for clinical negligence. Even if he had survived there was a section in his notes where he was down for amputation of his leg the next day. I am not suing for money but I literally cannot do anything else - I want them to know he was not just another man in a bed, he was a beloved Father and Husband an their treatment was appalling.

The guilt is hard really hard. The irony is, in over 27 years of nursing, I have been with many many people as they have died and have always advocated for my patients to have the 'best' death they possibly can knowing relatives will live with the memory of it forever and yet my own Dad wasn't afforded the same breaks me.

You are absolutely not responsible.
RIP to your dear mum. How horribly sad.

You did stand up for her and was "assured" at each point. I would seriously consider a formal complaint for negligence

Op, your role was your mum’s daughter and you played your role to perfection.

You were not the medical professionals. You responded to your mum’s call for help, you got to her remarkably fast, you took her efficiently to the people whose role it was to handle the medical side. It was not your fault.

You did raise questions, so you didn’t just sit back. But once you have raised questions and been told all is in hand, how can you possibly know otherwise? You aren’t the doctor.

I’m sorry to hear of your loss; but your mum had a truly loving daughter of whom I am sure she would be proud. Her last clear memories will be of you responding lovingly to her call for help. She went out of this world wrapped in that knowledge of love and care for her. That’s all we can hope for, and you made sure she had it. Well done OP,

I really feel for you. My mother died of a rare chemo reaction and in a similar way no medic at the hospital would believe me that she was deteriorating, she then collapsed into a coma and by then it was too late.
I also felt gas lighted by various nurses and doctors who all had said my mother saying she could not breathe was anxiety. It was actually her lungs filling up with fluid.

I was beyond devastated, and in an effort to deal with my feelings I raised a complaint to the Ombudsman about the hospital failings. I also went to psychotherapy to deal with my ptsd as I was stuck in scenes in the hospital replaying what I should have said or done.

Seven years later I have reached acceptance.
What happened is not your fault. Your mother would not want you to live with guilt and sadness. We cannot bring our mothers back but can only live as they would have wanted with hope and positivity. Time will be the healer and you are only five months in, so go easy on yourself.

Sending you huge virtual hugs.

Thank you for your support, lovely 🥰.

Yes she was given Alteplase for a saddle PE. I’m aware now that there’s a 1 in 50 risk of a brain hemorrhage with this drug, but I only know because I’ve researched it online since my DM passed. This wasn’t explained before she had the treatment unfortunately. Had my DM been aware she may well have chosen the other, slower acting treatment option they were looking at. The clot was caused by a DVT and quite big, but other than shortness of breath DM was okay. I understand just because she presented as otherwise well, this was still an emergency, but she had some time to properly weigh up the pros and cons of both treatments. I do also understand that having this treatment means that she may have died anyway, but she started showing signs of neuro issues from not long after breakfast and nobody acted. They didn’t follow the correct protocol for the Alteplase aftercare and instead put her on 12 hour obs on the NEWS chart and ignored her. There were loads of failures throughout the day that I’ve put into the hospital complaint, and there is going to be an inquest, so I don’t want to say too much as I don’t know how much I’m allowed to talk about now, but the truth is that the staff had so many opportunities to respond to her symptoms over many hours and didn’t. It wasn’t a sudden catastrophic bleed and they also kept giving her heparin the whole time which would have made the bleed worse. Had they responded straight away, she may still have passed. We’ve got neuro specialists involved to try and answer that but even if she had passed, we would have known that she was taken care of with dignity, she would have had the best chance possible of getting through it and family would have had this time to say goodbye instead of the ones that were there being in a high state of anxiety and stress just trying to get help 😢.

I know you’re just telling me the facts to try and help put my mind at ease about my mums passing, I am very grateful for you taking the time to explain and share what may have happened. Had my DM had better nurses taking care of her I know she would have been treated very differently, no matter the outcome.

Well. somebody is responsible for your mother’s death but it is certainly not you. If really don’t see what else you could have done and I’m pretty disgusted by your description of how the medical staff behaved. I’m so so sorry for your loss. 62 is no age at all, and this patently should not have happened. Please be kind to yourself, and well done for trying to get the answers. You can’t save your mum, but maybe you will save someone else

The guilt is not yours to carry. You cared, you were there fighting for her. You could not have done more than you did, as you went over and above your call of duty.

It was all in the hands of others.

You must not blame yourself, remember you are completely innocent.

I'm so very sorry OP. This was NOT your fault. No matter how many times I or any other say this to you, it won't change how you feel but I can promise you it was not your fault.
Please speak to the Ward Sister and Matron and ask for a representative of the PALS/patient experience team to be present. Have they said whether they are referring your Mum's death to the Coroner or the Medical Examiner (it will be one or the other). They will make contact with you. Tell them EVERYTHING you have said here and any other worries about your Mum's care. This is not okay x

I would absolutely complain to Pals, and ask for a meeting with the consultant to talk through what happened - this is what Martha’s Rule is meant to avoid.

If it helps at all, if your mum had a catastrophic bleed from the clot busting drugs, it is likely that nothing anyone did would have changed the eventual outcome. Of course that doesn’t mean the nurses should have fobbed you off, that was quite wrong of them, and of course has made this even more distressing than it needed to be. But it might reassure you that nothing you or anybody did would have helped.

What a wonderful loving daughter you are. That was your Mum's whole experience of you, the deep love that your writing shows. She would have felt that every day of her life.
Being ignored by medical professionals is a particular kind of trauma, like screaming under water. I hope you get support to navigate this.