Struggling to come to terms with losing Mum

[MiniMaxi]

We lost Mum nearly three weeks ago to sepsis after the hospital made a lot of mistakes in her treatment.

She was 81 with other health issues, but after a run of serious illness three years ago I really thought we’d have her for a few more years at least.

I know it’s not been long, but am really struggling to come to terms with what’s happened. The worst part is that it could perhaps have been avoided (we’ll never know for sure).

I feel so responsible for not realising how serious it was and that the hospital was not giving her the treatment she needed. They waited nearly 24h to give antibiotics. I’m not a doctor but do have enough awareness of sepsis etc to have challenged them, and I was so distracted by my own life overwhelm plus the curveball of her being in hospital in a lot of pain, that I totally failed to advocate properly for her.

How will I ever get over this? I miss her so much. Friends and family are being supportive but there’s a limit to what they can do or say. The one person who would be able to work through this with me is her.

I'm sorry OP. Bereavements are hard work without the unanswered questions thrown in.

Is there not going to be an investigation into what happened around her death? Could you maybe complain and get answers that way?

The guilt you're feeling is normal but it's not your fault. Don't let it consume you. There is only a certain amount of control we have when it comes to medical stuff. This isn't your fault.

You probably should to talk to a professional IRL to help you process it and there will be some sort of mechanism in place to get some sort of debrief over her care.

Just one day at a time though. You've had a massive shock.

Thank you. It’s been referred to the Coroner and we also complained to the hospital.

I feel like somewhere along the line there will be an admission that they should have acted sooner, with all sorts of caveats about why they didn’t - but that won’t help me with coming to terms with the fact that I let her down by not asking the right questions. I keep going over moments in my mind… what did I say to the doctors when I first saw them (several hours after she was admitted to the wrong bloody ward). Did I throw them off track? Why did I stick to my evening plans and leave her because she seemed stable, when me sticking around and focusing on her needs could’ve changed the course?

It’s so hard. I have started therapy, it’s early days but I hope it helps. I just want to talk about it really, to help me process, but my Dad doesn’t want to discuss it at all, husband is really stressed about work, and young ish son is being lovely but should not bear the responsibility for supporting me. Thanks for your reply.

@MiniMaxi
I just stumbled across your post and had to reply because you sound exactly like me when I lost my mum 5 years ago. I too was racked with guilt - with similar feelings about not having called in a doctor earlier, but also in my case because it was in the middle of Covid and she was (eventually) taken to hospital where we weren’t allowed to visit, and it felt afterwards as though we were forcibly separated (well, we were) and I just hadn’t done enough to insist on seeing her, although they would have no doubt refused as it was an absolute hospital rule that nobody could visit to limit the spread of the virus (she didn’t actually have Covid, but still…).

Just speaking from personal experience, those feelings are exquisitely painful but totally natural and understandable. I don’t think there’s much of a way of not feeling them, but they will lessen.

You really aren’t responsible - but when such a shattering event happens, everyone’s instinctive reaction is to think ‘what if…?' This, though, is based not on reality but on the perfect, logical sequence of things you’ve constructed subsequently which might never have happened anyway. After I lost my mum, I talked to a very experienced medical professional who’d known us both (I was in floods of tears) and said ‘what if’ to him…and his calm response was ‘but people die, no matter what we do’. It felt brutal at the time but he was right. My mum had health issues, and possibly something we didn’t know about - we’ll never find out now. She covered things up very well. I’ve come to see that she may have been a lot more unwell and frail than we thought. Interventions by me, right at the last moment, were very unlikely to have made any difference (although I too had, and have, major concerns about the hospital care she received - we didn’t complain about it because it just all seemed pointless once we’d lost mum, though I entirely understand why you’d want to pursue it).

I talked all of this through with a counsellor for over a year of weekly sessions and while I will never entirely let go of the guilt, and will always wish that things had happened differently, I’ve reached a place of accepting that I can’t torture myself for it. You do your best at the time with the information you have - you didn’t know then what you know now.

It’s very good that you’re having therapy, and important that you can talk about it. I’m so sorry that it’s so painful for you - sending you all the best from one who’s been in the trenches with this.

Thank you @Brillig - I’m so sorry you lost your Mum too. It must’ve been very hard not to be able to visit her in hospital.

I’m glad to hear the guilt has lessened. I just keep going over everything in my mind, especially when I wake at night, and just want to say to her “sorry, Mum”.

Like yours, I suspect she had additional health problems we didn’t know about. The main reason the hospital failed to reach appropriately was that her CT scan showed a few possible causes of her pain - one was an inflamed gallbladder (which is what killed her) but also a series of small “deposits” in her abdomen which they said looked like tumours secondary to a cancer she had removed a few years ago.

They focused entirely on the tumours, moved her to a gynae ward for no apparent reason (though perhaps they had some sort of reason), where she had next to no monitoring, no fluids, and they finally got around to giving antibiotics six hours after I said to the doctor that the only time she’d been like that before was when she had a previous gallbladder infection. My god I wish I had stayed. Put down my bag. Used my fairly analytical mind to look at all the factors and say to them “please can we just treat the gallbladder and deal with other stuff as it comes? She’s had sepsis before let’s do everything we can to avoid that”. But I take your point about the perfect what if path.

In the end we had to fight them for admission to ICU (which they eventually did) as some doctor had persuaded her in the middle of the night, after she developed sepsis, to agree to DNR on the basis of cancer returning - against her previous wishes. My poor Mum spent her last days afraid and in pain. She deserved so much better.

I’m pinning all my hopes on therapy tbh as I feel traumatised - a constant knot in my stomach that won’t go and perhaps I don’t deserve for it to.

Thank you for listening and for sharing your story.

I could have written your post 2.5 years ago about my Dad. Worst of it is I am a nurse with 30 years experience. My Dad was diabetic and had a wound on his heel that deteriorated very quickly - I got him seen the same day by the vascular consultant at the hospital he was under and she sent him home. He went back 36 hrs later and died a few days later from multi organ failure due to sepsis and DKA. He had a cardiac arrest in ITU and we were not with him when he died which absolutely killed me at the time. He was mid 60s so not a really elderly frail man.

I was so angry and blamed myself so much for not advocating for him. Thing is that you put your trust and faith in the professionals looking after them. You also don't realise how serious it is until it is really bad. I always advocate for any patient I look after to try and help them have the most peaceful death possible and I was robbed of that for my own Dad that was very tough to come to terms with for me.

I initially made a complaint via PALS as I knew there had been a lot of breaches in his care. This then turned into an investigation via the patient safety team. Once I had the report I approached a Solicitor and we are suing the NHS Trust for clinical negligence. I have just recently had the expert witness report from a Vascular Professor and their negligence is staggering - it was a very hard read but good for the case as the Solicitor said (which says it all really)

All I can say is that with time your feelings will lessen. I know my Dad would not want me to tie myself up in knots about what happened, the real fault lies in the hands of the NHS Trust in which he was admitted. You are only 3 weeks in and will be feeling all sorts of things at the minute. Give yourself time, feelings will fade and you will be able to look at things more rationally, you sit with your memories and smile instead of crying. I am sure your Mum knew you loved her and that is all that matters, try and remember her in life and not how she died as tough as that is right now one day you will get there. Take care xx

I’m sorry for you loss, @TangoWhiskeyAlphaTango123 - that sounds very hard, and a similar story.

Mum too died suddenly in ITU when we were not with her. We had been with her most of the day, but a friend who works at the hospital (A&E consultant) was with us and advised us to step away, get some food, and take a moment as Mum was declining and it could’ve been a long night. She sat with her. When we returned, my friend said the nurses had asked her to step outside as they were changing her bedding / turning her to prevent pressure sores or somesuch (no idea why when she was end of life). As they were turning her, she died suddenly - we rushed back in and I hope she was still there when I told her we were with her.

So many things are traumatic, and there are so many what ifs, that I just don’t know where to start.

I’m glad you have felt better with time. Thank you for your message.

Urrrggghhh, I am so very sorry that you lost your Mum in these circumstances. Its tragic and traumatising.

I lost my Mum suddenly to sepsis nearly 5 years ago. She was only 70. She collapsed at home with a kidney infection and whisked off to hospital and put immediately on antibiotics. A scan revealed kidney stones so she was whisked down to theatre for removal and a stent for the larger one they couldn't get. Back on the ward she woke from the surgery but was confused which they initially put down to coming round from the surgery. Later that night we got a call to say she was still showing signs of confusion that should now have passed so they were treating her for sepsis and she had been moved down to ICU.

The hospital were quick in recognising sepsis and changing her treatment and they did everything they could. But Mum went into organ failure and she died after a couple of days in ICU where she just declined and never recovered.

The 'what if's' are a very normal part of the grieving process and the cruelest part of the whole thing. They make you sick to your stomach as you question every conversation you had with the medical staff, every part you played in the process, and the things you think and feel you could have done but didn't. These intrusive thoughts are crippling and difficult to deal with, as well as also trying to grieve and get your head round the fact that your Mum is gone from your life forever.

I also had therapy and it was a godsend for me. To talk to someone about these awful feelings I was having, trying to understand them and just cry, feel sad, feel angry and all the other feelings that engulf you in your grief. Without my counsellor being there to listen to me and help me make sense of it all I have no idea if I could have got through on my own. Even though on the outside I was the one 'being strong' for everyone else.

I sympathise with you greatly right now as I now how soul destroying these thoughts are. All I can say is that you will get through and come out the other side and one day you will be able to make peace with your Mum's passing.

Until then continue to reach out here, make sure you talk to someone, anyone, but a counsellor or therapist is great as they are impartial and don't know you. So it enables you to be fully open.

Sending hugs xx

I’m sorry you lost your Mum. Am out for a few hours but will reply properly later. Thank you.

I'm very sorry about your mum.

I think you're putting too much pressure on yourself to even be thinking about "coming to terms" so soon. Right now is just a time for getting through each moment and looking after yourself without thinking about the future. It's when you think about the future that it amplifies the pain and causes the overwhelming feelings about not being able to cope or it never ending.

Right now, stay in the present and just focus on getting through. One minute at a time. One hour at a time. One day at a time.

Have you had any support from the bereavement charities? They all offer different kinds of support and services so it is worth exploring to find the right fit.

https://www.sueryder.org/grief-support/services/

https://www.mariecurie.org.uk/services/bereavement-support-service

https://www.cruse.org.uk/

There is also good, reliable information here about coping after a traumatic experience:

https://www.rcpsych.ac.uk/mental-health/mental-illnesses-and-mental-health-problems/coping-after-a-traumatic-event

Can I ask what kind of therapy you're accessing and with whom? It's very, very unusual that any therapist would work with someone so soon after a bereavement or traumatic experience. The evidence shows it can actually do more harm and prevent the natural healing process. I am therefore a little concerned for you.

I lost my mum in traumatic circumstances and it hurt so much I thought it would kill me. However, I am still here. The pain and intrusive thoughts and memories will ease. The best thing you can do is take care of yourself gently, try not to fight the pain just let it happen and care for yourself through it.

One thing that it may help to know is that your body can only physically sustain intense pain and emotion for limited duration, so even when it feels unbearable and like it will never end it will ebb. Focusing on noticing the waves can help make it feel more manageable because then you know it's not going to last forever. You might notice that after crying you feel different - numb maybe, calmer maybe. Notice those fluctuations and it can be a comfort.

I really am sorry you're going through this. It won't always feel as awful as it does right now. 💐

Sorry for the long delay in responding. Am so sad to read what happened to your Mum. At least the hospital were responsive but - similar to my situ - it sounds like they kicked into gear just that bit too late.

I really appreciate your thoughts and kind words, you’re exactly right that it’s the combination of the “what if” ruminations, the trauma, and the loss itself that is so hard to get over. Of course I would be devastated even if it had been definitely unavoidable, but at least my head wouldn’t be spinning in this way.

I do feel heartened, though, that others who’ve gone through the same experience have made it out the other side. Thank you for sharing your experience.

Thank you @dragonballet for your advice and for sharing your experience. I’m sorry you lost your Mum too, and glad to hear you made it through.

I haven’t spoken to the bereavement charities yet, but will do. The Sepsis Trust offers support as well.

The therapist (counsellor? Not sure of the right term) is via betterhelp, which a friend recommended. It’s an opportunity to talk to someone impartial really - I have a lot of support from friends and family, but also need to be able to function in the day to day. I wasn’t coping at all really for the first couple of weeks and - although I in no way expect to be OK with what’s happened anytime soon - need to get to a point of coping asap for the sake of my own family plus being able to support my Dad.

I appreciate your point about focusing on the now. I think Christmas approaching has made that future-focusing more pronounced as it’s something in the short term that normally we would have celebrated together with both my parents. Then beyond that you just think, “hang on - this isn’t temporary - it’s ’never again’”. I’m trying not to focus on that aspect too much, it’s just so sad.

I'm so sorry for your loss, please try not to blame yourself. Sometimes things are out of our control. My Mum died last year at age 69 and I also torment myself sometimes with what ifs, I think it's normal but I know it doesn't help us and our Mum's would not want us to think that way.

Sending you so much love and hope you can come to terms with things in time x

Thanks @KylieKangaroo you’re right - she definitely would not want me to feel this way, and I’m sure that’s true of yours as well. I’m so sorry for your loss too. I really appreciate the support and encouragement, thank you.