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Bereavement

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

63 replies

PurplePenguin28 · 24/10/2024 02:59

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.

OP posts:
Oblomov24 · 24/10/2024 07:11

I'm so very sorry for your loss. What a very sad account. It sounds awful. Please don't feel guilty though, such a wasted emotion. You couldn't have done anymore.

Warmautumnbreeze · 24/10/2024 07:22

I'm so sorry about your mum. You did everything you could, it's not your fault that the trained professionals put up impenetrable walls. I do hope you come back to all these replies and it gives you the strength to seek some counselling for yourself to help you through this.

Ames74 · 24/10/2024 14:55

I'm so sorry, I'm not surprised you are traumatised by what happened ☹️

Absolutely nothing to feel guilty about but maybe a friend or relative could help you contact PALS. Even if you don't want anyone held to account, it should be investigated so lessons can be learned

Once again, I'm so sorry for your loss, and please don't blame yourself, you were there for your mum when she needed you and what happened is absolutely not your fault 💐

MounjaroUser · 24/10/2024 15:07

I'm so sorry you lost your lovely mum. She sounds amazing and you were so lucky to be brought up by her.

Nothing that happened was your fault, but I would be definitely making a complaint against the hospital staff.

Flowers
comoatoupeira · 24/10/2024 15:14

username1589 · 24/10/2024 03:18

I'm sorry for your loss 💐

You can make a complaint about the way your mother was treated.

You can also contact Cruse for bereavement counselling.

I've carefully read your post and you did everything you could under the circumstances. Rest assured you did the best for your mother.

You can also contact the Samaritans, sometimes it really helps to talk.

This.
I'm so sorry for your loss.
It wasn't your fault.
You did your mum proud, she was let down by others.

comoatoupeira · 24/10/2024 15:15

Not surprised that you feel awful about it, but it wasn't you.

Salmonfortea · 24/10/2024 15:29

What would your mum say to you right now if she could?
She sounds lovely and I bet she would be telling you to stop blaming yourself, listen to your mum's voice inside your head, her legacy is you will be able to hear her whenever you need her advice and your relationship means you know exactly what she would say.

mitogoshigg · 24/10/2024 15:35

You did everything you could but sometimes the damage is already done, the clot busting drugs were administered but could have been too late, not effective or whatever. Please ask in writing, perhaps via pals for a report into what happened, whether anything could have been done to change the outcome, but whatever the report says, you did everything you could

BorrowersAreVermin · 24/10/2024 15:36

Very sorry for your loss @PurplePenguin28.

We went through something very similar almost a year ago exactly. DM went to hospital feeling light headed and short of breath, she was diagnosed with a PE and given "clotbusting" medication. They then said there were complications with internal bleeding brought on by the medication and there was nothing more they could do. She passed away three days later from what turned out to be a stroke they completely missed.

We too felt let down by the medical staff and wondered if we had pushed harder for a doctor to investigate the outcome would have been different. I guilt is a natural reaction when the person involved wasn't capable of making decisions or pushing for themself. I felt I should have looked after her the way she had looked after me.

Five months is still a very short period of time though, your feelings will be raw and it's not always easy to understand them. I know everyone talks about time and while I don't think time necessarily heals I do think it takes time to make sense of and come to terms with your own thoughts and feelings.

AnellaA · 24/10/2024 15:49

OP, I echo the other posts - the death of your mum was not, definitely not, your fault.

I posted a while back about my own feelings of guilt after death of a parent. I got so many lovely responses - I cried my eyes out (again).

My rational brain says “everyone is telling you it wasn’t your fault. Listen to all these objective opinions.” But my heart is telling me “I should have foreseen how this would end, I should have done these things differently.”

Whatevershallidowithmylife · 24/10/2024 15:56

That’s awful I’m so sorry for your loss. You have nothing to blame yourself for, there was nothing more you could have done.

Allthecatseverywhereallatonce · 24/10/2024 16:13

Hi @PurplePenguin28 I am so sorry to hear about your dm. I can completely understand why you feel as you do. What I would say as a nurse is that your concerns should have been listened to and escalated to the Drs. You know your mum best, if a relative was as concerned as you I would have ensured a senior HCP saw you.

Please do not let this go, it may be that this outcome sadly was inevitable for your dm, the clot busting drug can cause bleeds on the brain but, this is why she should have been monitored much more closely.

PALS are a good place to start but, try to find out the name of the matron for that ward and contact them. It is likely a coroner may need to be involved, at which point the care will be reviewed but, if not, the hospital should look at the care given and make improvements .
What sort of ward was your dm on?

Sadly standards of care are not what they should be in the NHS and it really needs addressing.I am so sorry for your loss. Please try to be kind to yourself.

JT69 · 24/10/2024 16:13

Didn’t want to read and run OP. Sounds like you did everything you could and you did advocate for your lovely mum.

There is no failure on your part. If you feel strong enough sounds like PALs could helpful as you need closure after such a trauma. Take care of yourself OP x

Igmum · 25/10/2024 07:46

So sorry for your loss Flowers. As others have said you are really not to blame. Sounds like there is nothing you could have said or done to persuade them to pay attention. Yes, please do complain if you feel able to.

khaa2091 · 25/10/2024 07:59

I'm very sorry for what has happened to your family and how unlucky your mother was.
PE kills many thousands of people a year and therefore is high up everyone's must do something quick list in a hospital. Do you know if your mother was actually thrombolysed for her PE or just given medication to stabilise the clot?
If she was thrombolysed that implies that her doctors thought this was a massive imminently life threatening PE. Unfortunately it carries the risk of bleeding in the brain in approximately 3% of patients. If this happens then there is very little that can be done to treat it and patients are given supportive therapy to try and get them through it. If the damage is too severe (which is not unexpected) then the patient is kept comfortable and allowed to die.
I am not for a moment justifying how you were treated, but I suspect after your mother had been given the drug because statistcally she was more likely to die without it then there was very little if anything that could have been done to change what happened.
I'm very sorry that you feel that you should have done more, but I don't think that any amount of fuss would have changed what ultimately happened.
Best wishes.

Unexpectedlysinglemum · 25/10/2024 13:45

I'm so sorry. This was 100% not your fault.

Member869894 · 25/10/2024 13:59

Oh darling having just spent 2.weeks in and out of hospital being fobbed off/ overlooked/ passed on by staff until the point that I became desperately ill I can wel understand how this must be playing on your mind. You did everything you could and had every right to trust that she was in the hands of professionals who would not let harm come to her. It sounds as though the hospital failed her but you must certainly did not. Please go to Pals and talk it through
Xxx

PurplePenguin28 · 27/10/2024 17:59

misspositivepants · 24/10/2024 03:29

I am so so sorry for your loss.

it isn’t your fault. I had a not to dissimilar experience when my dad passed away, missed opportunities by medical staff and me feeling I didn’t effectively advocate enough him. I made a complaint to PALS but it doesn’t bring them back, but I hoped no one else would go through the same.

we put so much trust in medical professionals and rightly so, that their job they sound like they performed inadequately.

5 months is such a small timeframe when it comes to grief. It hits me like a tonne of bricks some days 4 years later.

I’d Suggest some counselling, and making a complaint as way for you to be able to work through this.

sending you light, and a reminder it wasn’t your fault x

Thank you for your kind words. I’m so sorry to hear about the loss of your Dad, lovely. The loss of a parent is hard enough to deal with in the best possible circumstances, but to have this kind of experience on top is beyond heartbreaking. I hope that raising the complaint was able to bring you some closure about what happened and the people involved were dealt with 💐.

OP posts:
PurplePenguin28 · 27/10/2024 18:12

AlwaysFreezing · 24/10/2024 05:53

I had something very similar happen with my mum (also early 60s) in a hospice. The feelings of guilt were enormous.

For a long time, I couldn't get off to sleep as it all ran through my head again and again. I'd feel like I couldn't breathe. Panic would set in.

In the end, I got some counselling as I knew I couldn't continue like this. It is still difficult to even think about, I'll be honest. But, it's no longer my over riding image in my head, ifs no longer the last thing I think about at night and I no longer feel any where near as guilty as I did (every now and again, I do get flashes of that guilt, but it's fleeting and my rational thinking takes over).

This was not your fault. Your mum was incredibly unfortunate to have that clot, and it sounds like the hospital didn't do everything they could have. It's so difficult to advocate for someone when your on an institutions turf. Hospitals run to their own time and ways. They are the gatekeepers of access to doctors and medicines and scans. There is very little you can do to disrupt the rhythm.

Be kind to yourself. It sounds like you did advocate and did try, but a set of circumstances conspired against you, despite your best efforts. We can't control everything.

Focus on the good things, the happy memories. Tell us a couple?

Thank you for your kind words. I’m so sorry to hear about the loss of your mum, lovely 💐.

You're definitely right about the hospital staff. It was as though they decided on the level of care and treatment my mother needed when she arrived on the ward and no matter what happened throughout the day didn’t matter. My mother’s situation evolved but they wouldn’t budge.

How you describe the not being able to breathe is so true for me too. It’s all going around in my mind constantly, but I’m usually able to keep some control over myself during the days while around others, then during the night when the house is quiet and I’m alone the thoughts get so overwhelming I can’t cope. It’s like I’m letting out everything I’ve been holding back all day, which I suppose is healthy to a certain extent, but I spiral into the deep guilt and panic attacks. I’ve considered contacting Cruse a few times and my GP, but I haven’t yet. I should speak to someone xx

OP posts:
Ozanj · 27/10/2024 18:14

This is the hospital’s fault. I hope it’s being investigated OP?

PurplePenguin28 · 27/10/2024 18:23

PermanentTemporary · 24/10/2024 06:32

I'm so sorry for your loss Flowers

Please read @Bunnyhair's post. I'm sorry you are feeling so distraught. Please do consider therapy. You are bearing a burden alone that is absolutely not your fault and you deserve help.

I don't want to bang on about my experience but I do know what you mean. My husband was extremely ill (mental illness), we made it to an urgent appointment, I could not get through to them how different my husband was to normal, they assessed him as 'no risk' and he was dead within 3 hours. I will never forget that feeling of trying to communicate through what seemed to be a glass wall between me and the staff. It took years of therapy for me to be able to live with it all.

Yes I think you should make a complaint. But that's not your responsibility either. Please be kind to yourself. I'm certain your mother would think the truth- that you did absolutely everything you could for her.

Thank you for your kind words. I’m so sorry to hear about the loss of your DH, lovely. It’s truly heartbreaking when you are there, doing everything in your power to help your loved one and the people who are able to won’t listen. The “glass wall” describes it so well. I hope you are okay and the counselling helped you to be able to focus on your happy memories. Take care of yourself lovely 💐

OP posts:
PurplePenguin28 · 27/10/2024 18:27

Ihopeithinkiknow · 24/10/2024 04:19

I'm so so sorry for your loss.

I was reading this expecting to see how you feel guilty because you dismissed your mum and told her it was nothing to worry about and that's where your feelings were coming from, it looks like the opposite is true and you did everything you absolutely could to help your lovely mum but you were fobbed off by the people who should have been the ones to care for your mum.

I know now you are going over everything in your head and thinking that you should have said this or said that and because you didn't you blame yourself. Please be kind to yourself and when you are feeling a bit stronger you should absolutely put a complaint in because it sounds like your mum was completely failed in what should have been the best place for her.

I don't know you or your mum but I do know that she knew you did everything you could and got to her straight away after she called you and I hope that brings you some comfort.

Think I'm just waffling now lol but after losing my son 2 years ago I went through a lot of what ifs and buts and I know just how awful that feeling is. Sending you love x

Thank you for your kind words. I’m so sorry to hear about the loss of your DS, lovely. The loss of a parent is hard enough to deal with, but to have experienced the loss of your child is beyond heartbreaking. I hope that in time you’re able to remember the beautiful moments that you shared with your DS and they bring you comfort. Be kind to yourself lovely 💐

OP posts:
PurplePenguin28 · 27/10/2024 19:51

Thank you for your lovely words, everyone. It really has meant a lot 💖 I did read them a few days ago, but was in floods of tears and couldn’t respond.

You all really have helped. I had started writing up a complaint but hadn’t been able to look at it in a while, but reading your comments gave me the strength to get it finished. I spent most of Thursday and a lot of Friday doing it and I emailed it to the hospital. It’s fair to say that it was VERY long, but hopefully I covered everything needed 🤞🤞.

When my mother passed the hospital said that they didn’t think any investigation was needed, but I disagreed straightaway and phoned the medical examiner to explain what had happened. There wasn’t a staff shortage or any other reason for their failures. The examiner put it to the coroner and they thought an investigation was warranted too. The hospital dragged it out being awkward about the statements the coroner had asked for, who ended up having to threaten them with court for failing to submit in the end. The hospital did eventually send them in and the coroner concluded that a full inquest is needed. The news of the inquest going ahead was 6 week ago and as an extra gut punch, I also received the staff statements and Stage 3 Mortality Review report on Friday. It was a difficult read and we’ve got a pre-inquest hearing in a few weeks. I’m nervous about it but also glad that we’re actually getting an inquest. It goes to show that the hospitals can’t be trusted to do the right thing and if families have any doubts or concerns we need to push. Part of me knows that this is what my DM would have wanted and I hope that our efforts will result in some sort of justice and change so others don’t go through the same, but I’m also kicking myself with the thoughts of “too little, too late” and “why couldn’t I do this while she was still alive to fight for”. I can’t help feeling like dirt.

Thank you for your support and advice about talking to someone. I have thought about contacting Cruse or my GP a few times, but haven’t yet. I do live with my DH and DD, but still feel so alone. I don’t think my DH gets how I’m feeling at all and I don’t want to put it on my DD, she’s only a teen and already been through so much the past few years with different things and she was really close with my DM. I feel so alone but I’m working hard to stick with it 💖

OP posts:
PurplePenguin28 · 27/10/2024 20:23

Allthecatseverywhereallatonce · 24/10/2024 16:13

Hi @PurplePenguin28 I am so sorry to hear about your dm. I can completely understand why you feel as you do. What I would say as a nurse is that your concerns should have been listened to and escalated to the Drs. You know your mum best, if a relative was as concerned as you I would have ensured a senior HCP saw you.

Please do not let this go, it may be that this outcome sadly was inevitable for your dm, the clot busting drug can cause bleeds on the brain but, this is why she should have been monitored much more closely.

PALS are a good place to start but, try to find out the name of the matron for that ward and contact them. It is likely a coroner may need to be involved, at which point the care will be reviewed but, if not, the hospital should look at the care given and make improvements .
What sort of ward was your dm on?

Sadly standards of care are not what they should be in the NHS and it really needs addressing.I am so sorry for your loss. Please try to be kind to yourself.

Thank you for your support, lovely 🥰.

I’m aware now that there’s a 1 in 50 risk of a brain hemorrhage with the thrombolysis drug they gave her, 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. I 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 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 and didn’t. 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 and she would have had the best chance possible of getting through it. She was on a normal respiratory ward, but in a higher risk level side bay with 6 beds.

OP posts:
PurplePenguin28 · 27/10/2024 20:29

Ozanj · 27/10/2024 18:14

This is the hospital’s fault. I hope it’s being investigated OP?

Thank you. Yes, we’ve complained to the hospital and because I complained to the medical examiner very soon after my DM passed, the coroner has also investigated and decided on holding an inquest x

OP posts:
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