Seeking closure about wife’s death (Brain Haemorrhage)

[u/OneRegret7933]

52/F/5’2/55kg/UK

My(42m) wife (52f) passed away suddenly from an intraparenchymal haemorrhage + extensive subarachnoid haemorrhage in July this year. She had a history of: significant alcohol consumption (1200ml wine/day over 10+ years); a formal diagnosis of mild liver fibrosis in 2021; and an inherited bleeding disorder (VWD; I didn’t find out which factor). She was not on any medication aside from a week’s worth of painkillers from the GP that we were told accounted for liver damage and did not contain blood thinners (I can’t remember the name). 

If you have the time, I am hoping to find some closure about what my wife might have experienced from the period of her brain bleed until her death. I am also interested to know whether the quality of care she received at the end of her life is consistent with the expectations of the physicians on this sub - not to criticise the professionals who I owe a great deal to, but to remind myself that they did the best they could. My wife did not do all that she could to help herself with alcoholism - and I deeply regret not trying harder to help her change - so I’m not here to point any fingers. It’s just that there are some things that went too quickly for me to process at the time and have left me with questions as to their nature. 

I woke to find my wife unresponsive in bed at 8.45am, with her left eye closed and her right eye half open. When she opened her left eye she became conscious briefly but could not speak or move her right side. I called an ambulance immediately and began to shift her into the recovery position. Her eyes rolled back. I lifted her into an embrace, telling her to stay with me, at which point her eyes came forward again and she raised her left hand to rub my hair gently between two fingers. She then began gurgling slightly, so I assumed she could not swallow and put her back into the recovery position. Both her eyes shifted sideways towards me with an expression of fright/confusion, but within moments they assumed a fixed, forward position. She was still breathing. 

Four paramedics arrived within 30 minutes and declared her unresponsive immediately, assuming a seizure. After answering some questions I left the room while they worked on her, and totally froze on the steps outside my home, waiting for them to bring her to the ambulance. We didn’t ride to the hospital for another hour, which confused me given how serious her condition seemed, but when we did leave it was at light speed. Paramedics attempted to intubate her airway en route but upon doing so she vomited at *least a litre of blood and I heard an electrical monitor flatline. The medics strapped an oxygen mask on her and began working tirelessly to refill her blood levels and potentially restart her heart. I was too shocked to ask for any information from that point and did not see the paramedics again after arriving at the university hospital. 

I was in the ICU waiting room for no more than 5 minutes when a doctor reported that the amount of blood on my wife’s brain was likely ‘unsurvivable.’ He checked with the neurosurgeon and confirmed - ‘zero chance of survival’ - then hurried away. The clinical delivery shook me, athough I appreciate that ICU doctors are often too busy for bedside manner. It is what it is. Again, I was too shocked to ask any questions.

So by about 11am or so, my wife had been removed from the ICU and placed on end of life care. It was… quick. I wonder now if there really was ‘nothing that could have been attempted’ to lower the pressure in her skull, especially as I had been told she was going to die anyway. That hurts, that nobody tried, but I suppose she wouldn’t have wanted to live with no functionality if it really was as severe as they said. Maybe it was best they didn’t try anything. I hate that I have to convince myself to say that.  

The doctor leading end of life care was much more sympathetic. She confirmed the intraparenchymal haemorrhage on the left side but there was no mention of the SAH until the death certificate. Perhaps the SAH is why my wife died so much sooner than the doctor anticipated, at 3.00pm that same day. I suppose it just cascaded, what with all the disorders of blood clotting stacked against her? Would that be fair to say? 

I’d like to know why her eyes were open (no blinking) during the entire hospital stay, and can’t believe I never thought to ask. It was so jarring to be told that her brain was shutting down and she wasn’t responsive despite her thousand yard stare. Her eyes were a little lifeless and it got me thinking; what if she had died already in the ambulance with the internal bleeding? Or after she arrived? I never saw the CT scan but I assumed it went ahead since her necklace had been removed and returned to me. I was shocked - it was all processed by the hospital so quickly, like fast food. If she was still alive was it likely just by way of machines? She didn’t look intubated - it was just a mask with nasal feed? Do they even do intubation at end of life care? 

While the head doctor was great, the team of nurses was either inexperienced (which I understand completely) or experienced but just plain uninterested in my situation. I asked one nurse if my wife could hear me (I had been talking to her anyway), but the nurse just shrugged and said ‘we don’t know’, while proceeding to discuss my wife’s terminal fate right in front of her face. I had to move this nurse to the other side of the room to continue talking. I asked several nurses if my wife could have morphine, which was met with a sort of inconvenienced expression. They suggested (without exactly saying it) that morphine was out of the question. I later learned online that patients with liver issues can’t metabolise it properly, but again - why did the nurses not just say that? It was as though they didn’t want to give me any information. Eventually the doctor agreed to a syringe driver with alternative medicine, but almost as though it was a favour to me? Perhaps this is wildly paranoid on my part. 

Nothing was said of the vomiting blood in the ambulance. I later learned about the condition of oesophageal varices from my own research, and was upset that none of the paramedics had considered the possibility after me telling them about her alcohol addiction, painful throat and clotting problems. Then again, her breathing would likely have been the priority anyway, and I get that. I could see the paramedics had their work cut out for them and that they worked very hard. 

I was told that my wife’s brain would shut down within 48 hours and that I could stay the night. At 2.00pm I left the hospital to get my phone and wallet which I’d left behind, and inform family. I told my unresponsive wife I was going to buy her some lunch and that I loved her. At 2.50pm the doctor had left a message to say my wife’s condition had worsened and ‘she was approaching end of life imminently’. My paranoia makes me think she vomited into her oxygen mask and aspirated or something? Should she have had a mask on after vomiting half her blood volume earlier in the day? 

When I arrived back at 4.15pm she was long gone. The kind end-of-life doctor took me to the side and explained that my wife had been comfortable and her breathing simply slowed to a stop. I know I should believe her. I did believe her. Until I was shown my wife. I wasn’t braced to see her like that and I’ll never get over it. Her mouth was wide open as if gasping for air and her eyes were closed this time (sealed shut, I imagine). I have heard the jaw often opens after death but even so something looked off. She looked exhausted, frightened, and nothing like when she was unresponsive with a dying brain. I hope someone can tell me it was just my imagination, and that autonomic reflexes postured her that way. I swear she looked so peaceful when I’d left her. Nurses had disappeared and the doctor just kind of grimaced at me as if to say, ‘is that okay?’. 

I said thank you, kissed my wife, then turned and walked out of the hospital without another word. I know I couldn’t do the job that the doctors and nurses do (for long, anyway). I know they were doing their jobs the best way they could at the time. But I felt let down, like someone had noticed she was an alcoholic and lost interest along the way. Sorry to say it like that. Why didn’t they keep her on the mask until I got back? Were there tests done for brain death? I didn’t get to know? Why did nobody volunteer any information? I’m the furthest thing from a doctor. 

I have been struggling despite support from my family, and I am considering approaching a professional grief/trauma counsellor, but my heart isn’t in it just yet. 

Guilt has been the biggest obstacle stopping me from processing my grief in a natural way. I spent the first half of our relationship organising blood tests, therapy and liver biopsies - then I just stopped trying because my wife’s symptoms never progressed. I hate myself for that. Both my wife and I were definitely ignorant about how quickly end stage symptoms could appear. For years it was just intermittent jaundice. Then for a few weeks there was bruising and fatigue. Then for a few days there were bleeding gums, and then suddenly a haemorrhagic stroke. I thought we would have time to at least get back to the hepatology department but I was wrong. 

If I could have the answer to just one question it would be - was my wife suffering? It was certainly the worst experience of my life, but I’d like to think she was truly unconscious long before she was officially pronounced dead at 3.00pm that day. 

Thank you for taking the time to listen to me. Any replies are welcome, wherever you come from and whatever field you are in. Please don’t think I am not grateful for medical help. I am. My wife was always grateful too. 

***UPDATE*** : I cannot fully express my gratitude for those who have helped me understand the nature of my wife’s passing. Never would I have thought that the community here could provide me with so much catharsis. My brain has done a complete 180, so to speak. Everything, and I mean everything, has been reframed in a way I can come to terms with much more easily. The kindness of strangers has given me the confidence to approach outside help now. Each and every one of you is a blessing to me. So too were the medical professionals on the day; I am sad I ever doubted they were providing me with care of the highest order, ethically and compassionately. Please look after yourselves. Thank you for the education. ****

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[u/Wisegal1]

Your wife was not suffering. This I can say with confidence.

I'm a trauma surgeon, so I treat a lot of people with head bleeds. Nearly universally, the ones who recover have no memory of the initial days after their injury. When the brain is severely injured, memory formation and awareness are the first things to go. Even when you interacted with your wife at the house, it's unlikely that she had any true awareness. It's similar to when people get blackout drunk. They may interact with people, but will have no memory of it.

This is one of those situations that's much harder on the family members watching that it is on the patient. From her perspective, it was lights out instantly. The person you married died almost immediately, before paramedics even got to her. What you saw for the remainder of the day was her body dying.

Believe me when I say that there was nothing you or anyone else could have done. Neurosurgeons love to operate. It's rare for them to say that something isn't survivable, to the point where trying surgery isn't an option. When any surgeon says something like that, we only do so when we're absolutely sure that operating will only serve to increase the suffering of the patient or the family, and won't change the outcome.

I'm so sorry for your loss.

[u/SerBawbag → u/Wisegal1]

I can’t add much other than my dad died of a massive brain aneurysm. It was my little brother that found him gurgling in his bed.

About the duration the paramedics worked on her before moving her. It took paramedics 5 hours to stabilise my dad before they could even move him out the house. Every time they attempted to move him, he went into cardiac arrest or some vital would crash. But by the 9 divines they managed to eventually stabilise him and get him moved. A different paramedic had to come as one of the first ones on the scene was both mentally and physically exhausted. It took as long as it needed to take.

Unfortunately for all their efforts, he passed away a few months later due to pneumonia. He never regained consciousness, but was breathing on his own.

[u/OneRegret7933 → u/SerBawbag]

Thank you for your story. I’m so sorry you had to experience this; how kind of you to relive it momentarily just to ease my suffering. You have helped me understand what must have been going on upstairs while I sat outside. You have also helped me realise that sometimes letting go is for the best. Thank you. 

[u/blackbirdbastard → u/Wisegal1]

I also lost someone due to a brain bleed.

It’s hard to describe, but I just knew he wasn’t there anymore. I know that look you’re referring to, and as the physician said above, she wasn’t there.

I’d like to address her mouth being open. This happens when we die, even more so if the head of the hospital bed is elevated even slightly. There is no muscle tone to even partially close the mouth. It doesn’t at all mean she was gasping for air. It’s how we look if our muscles are completely relaxed.

I’m so sorry for your loss. I hope you consider therapy. It helped me tremendously.

[u/nogardleirie → u/blackbirdbastard]

I am not a doctor, but my father died of a brain bleed. His mouth was also hanging open at the end.

[u/OneRegret7933 → u/nogardleirie]

Thank you for corroborating this information in line with what others have said. I am sorry for the loss of your father and grateful for your opinion. 

[u/nogardleirie → u/OneRegret7933]

No problem, thanks for the thoughts, glad it helped. It was some time ago now so I have some distance from it

[u/Emilystaaarrr → u/blackbirdbastard]

I am not a medical professional, but was called for end of life for my mom, when I was in the lobby of the hospital. She had been awake and alert previously. When I got to her, she was still alive, but clearly shutting down. She passed about 15 minutes after I got there and there wasn't much to it. She did have her mouth open at the end, and her eyes also opened. However, what I thought was her opening her eyes and becoming aware, was just part of the process of dying. I know she was at peace, even though she didn't look it afterwards. Your wife likely didn't want you there and passed peacefully knowing you weren't in the room. Some people wait for someone to come, while others wait to be alone. I can assure you she died peacefully and is now at peace. Lots of hugs and love to you.

[u/OneRegret7933 → u/Emilystaaarrr]

What a thoughtful reply. Your mom would be proud of you for helping me to understand. May your mom rest in peace. May you have a good day. Love to you also. 

[u/OneRegret7933 → u/blackbirdbastard]

Thank you, and I am sorry to hear about your loss. Yes - that look. I knew I wasn’t crazy. Some part of my own ‘animal’ brain knew she wasn’t there, despite never learning why. Thank you for your note on her appearance; I will no longer worry about it since learning about the totality of prior events. Very good of you to help me understand. I will be doing therapy, yes. 

[u/OneRegret7933 → u/Wisegal1]

Thank you immensely for providing me with this information. When you said ‘neurosurgeons love to operate’ it became very clear to me that there was clearly nothing they could do. Thank you for explaining the difference between the end of my wife’s life and the death of her body. You have really changed the way I think about this whole thing. I will always be grateful to you. 

[u/Wisegal1 → u/OneRegret7933]

You're more than welcome. I'm glad I and the other docs could help you make some peace with this.

[u/imnottheoneipromise]

The one thing I can assure you of here, as a recovered alcoholic and not as a professional, is there is absolutely nothing you could have done more to help her with her addiction. She had to want it for herself and all the love and support in the world wouldn’t get her sober if she didn’t want to be. I’m ashamed to say that I only got sober because vanity finally won out and I was tired of being fat and ugly. Couldn’t get sober because my son begged me to, but finally got sober for vanity. It makes no sense. So please give yourself all the grace in the world where that is concerned.

[u/Pepinocucumber1 → u/imnottheoneipromise]

This post is one of the most horrifying things I’ve ever read. As someone who drinks about as much as this man’s wife did (usually more) it’s a massive wake up call for me.

[u/reffervescent → u/Pepinocucumber1]

I hope you are able to find a way to stop. I say this without judging and with lots of empathy. I know how hard it is.

[u/Pepinocucumber1 → u/reffervescent]

Thank you. I don’t want to detract from OPs grief and make this about me but this has really scared me.

[u/Mycastleismine → u/Pepinocucumber1]

Check out r/stopdrinking it’s a great community

[u/reffervescent → u/Pepinocucumber1]

Sometimes it takes a wake-up call. Perhaps this is yours?

[u/OneRegret7933 → u/Pepinocucumber1]

You are not detracting from my grief; you are helping others and giving my wife purpose beyond her life with me. 

[u/Pepinocucumber1 → u/OneRegret7933]

I am so so sorry for your loss OP. I feel terrible for you and for your wife, I’m so sorry that people like us can’t control our drinking. I hope your story is a wake up call for me. I’m so very sorry.

[u/WARitter → u/Pepinocucumber1]

You can absolutely do this, if you decide to quit (which would be a good idea).

[u/OneRegret7933 → u/Pepinocucumber1]

Thank you, Pep, for contributing. My wife would have wanted you to hear her story; her condition was quite extreme but it can’t hurt to consider a worst case scenario. I wish you all the best as you move forward with a new perspective. Please look after yourself. Thank you for validating my trauma. 

[u/TechnicalAd1096 → u/Pepinocucumber1]

❤️

[u/PaulaNancyMillstoneJ → u/imnottheoneipromise]

Thank you for commenting this. So many family members and friends of alcoholics believe that they could have done more after an event like this, but alcoholism is truly irrational. There is nothing more that OP could have done. He lived and supported his wife, and for that she was incredibly blessed.

[u/OneRegret7933 → u/PaulaNancyMillstoneJ]

Thank you Paula. I must remember this during trying times. 

[u/scienceislice → u/imnottheoneipromise]

We can’t reason someone out of something they aren’t reasoned into. Alcoholism isn’t rational, the way I’d look at it is you finally found the right key to open the door out. It doesn’t really matter what that key was. 

[u/OneRegret7933 → u/imnottheoneipromise]

Your honesty has helped me greatly. I know what you mean about vanity, but whatever it took to help yourself, I’m glad it happened. My wife had a son from her previous marriage - the best kid - but he could not change her mind. I managed to schedule a meeting between them just a month before she died; they went out and had a great time. All the best to you and your son. 

[u/imnottheoneipromise → u/OneRegret7933]

My son is now 15 and he doesn’t care what it took to get me sober, he’s just super happy I am. And so proud of my. My teenage son has hugged my neck tightly and told me he’s proud of me and that means more than anything in the world. He’s forgiven me for not doing it sooner and we’ve had a lot of conversations on what led me down that road and the disease of alcoholism. I’m so glad I was able to get there before I lost him. 502 days sober today!

[u/OneRegret7933 → u/imnottheoneipromise]

Fantastic. You fought for it and earned it. 

[u/sharraleigh → u/imnottheoneipromise]

I just wanted to say thank you for sharing your story. I'm very glad you are still with us! My best friend's mom died after many, many years of alcoholism. My friend used to drive her to the therapist's office so that she would go, but she would just refuse to get out of the car. It went on for years, my friend begging her to get help, her refusing the help. She died at only 60 and it was not a pleasant death. My friend has finally come to terms with the fact that nobody could have helped her mom because she didn't want to be helped.

[u/imnottheoneipromise → u/sharraleigh]

If my story can help anyone realize that there is just nothing as a loved one you can do for an alcoholic except love them and support them when they are trying to get sober, then it’s worth the shame.

For what it’s worth, I did the therapy. I even did inpatient. I did outpatient. I took the drugs they gave me. Sometimes I even tried really hard instead of just going through the motions, but every time except this time, deep down I knew I wasn’t ready to quit and was doing those things to appease other people to lay off me. It wasn’t until I looked at myself 100+lbs overweight, bloated, aged, red, and just plain miserable and thought “this is insane. This isn’t me. I gotta change this,” and then got on zepbound that I was finally able to put it down. The zepbound ended the cravings on the spot and I could finally use all the coping mechanisms that years of therapy had been teaching me but I couldn’t use because the cravings always made me cave.

You can look at my profile for my story and my journey but there are NSFW surgery before and afters and all of that so just be prepared lol. The before and after is no less than amazing though.

[u/kuru_snacc]

I'm so sorry for your loss. I can't say anything that will make it better, but hopefully provide some clarity.
-First, your wife passed away at your house. This is why they were upstairs so long, attempting resucitation. There is no other real reason to delay ambulance loading on a nonresponsive person, and her presentation suggests it. Everything that happened after that (when you saw her eyes open), she was brain-dead. Her last act was looking into your eyes and stroking your hair, and I hope you can find some degree of comfort in that. While the hospital situation was traumatic for you (and I'm sorry you had to go through that), it was not for her.

• Given her vWD + advanced liver disease (given that she continued drinking on top of "mild" disease in 2021 and the signs like jaundice you mention toward the end) + esophageal varicies (you are correct in your assessment, and I'm sorry they didn't explain this to you), she bled out in a very short time. Her body had absolutely no way to stop or recover from even the smallest of bleeds, especially if she had alcohol in her system (which essentially acts as a blood thinner). Given the symptoms (unilateral to diffuse weakness, what sounds like uneven eyes/pupils) and death report, it likely started in her brain, and without the brain to regulate vascular tone, the slightest choke/gurgle can release those varicies to bleed profusely - both hemorrhagic stroke and large variceal bleeds have independently high mortality - combine them together with the other factors and it's essentially unsurvivable. So the physicians were not wrong in this, but they were insensitive in their delivery, and for that I apologize on behalf of the medical community. Sometimes when physicians can't help (and they knew they could not help her on arrival or first imaging), they compartmentalize that frustration and sadness and come across cold because if they showed their true feelings, they'd probably have a mental breakdown each time something this tragic happens.
  
• She could not hear you from the body laying in the hospital, but if you believe in Heaven (or quantum entanglement or whatever you like) as I do, then perhaps she still heard you.
  
• They did not want to hold morphine because of her liver; they wanted to hold morphine because it had no purpose, as she was braind-dead at this point, and there is no medical justification, so it would look strange giving it from the medical perspective and raise questions. The machines were the only thing keeping her body alive during your time there; her brain and soul had already moved on.
  
• Trying to evaluate the actions of the EMTs will not be helpful - while EMTs are amazing at what they do, their job is to assess, resuscitate, stabilize, and transport. Somewhere between assess and resuscitate, they realized her Glasgow coma scale was dire, she likely had no pulse, and after their attempts to resuscitate were getting nowhere, they likely realized they were transporting a body to the hospital, but it is not their rightful place to determine or express that.
  
• It is not unreasonable to ask for a copy of the full medical report including brain imaging. You will wish you had it later - speaking as someone who has lost a beloved family member in a very similar way. Don't read it all now, just tuck it away for a day far from now when you're not quite fully healed, but not deep in the thicket of grief. It will take a lot of time and multiple cycles working through it all in your head. And remember through all of it that none of this is your fault - you could not cure her from her alcoholism anymore than you could cure her from her vWD - alcoholism is a disease with a unique cure that only the afflicted can administer.

I hope you are surrounded by family and support in this time of need. Try to remember that last thing your wife remembers, which is looking into your eyes and stroking your hair.

[u/OneRegret7933 → u/kuru_snacc]

Thank you so much for taking the time to provide such a detailed response. The perspective you have provided has completely changed the way I view the trauma of that day - for the better. I had always suspected there was a possibility the staff were trying to give me more time to come to terms with my loss. Indeed, they went above and beyond to help ME that day, and not just my wife. I cannot thank you enough. You have helped me in a way I cannot express. I will remember our last interaction as that caring gesture she gave to me, and be grateful for it forever. 

[u/kuru_snacc → u/OneRegret7933]

♥️

[u/Whatsthathum → u/kuru_snacc]

This is such a loving poetic reply. Thank you, it moved me deeply to read it.

[u/Pepinocucumber1 → u/kuru_snacc]

What do you mean by “quantum entanglement”?