UKC

Excuse the anonymised profile.. I’m just back from watching my mum die over 48h from the flu, on the other side of the country. I can’t sleep, my brain is replaying every word, rasping breath and heartbeat. Everything I see, hear, touch or smell seems like her. I couldn’t even hold my wife’s hand when I got back.. it felt like mums.
 

I know some people on here have been through similar things.. and different forms of watching death. Any advice? 
 

August 7th, spent the last night of me mams life sitting beside her hospital bed listening to her breathe expecting each breath to be her last. Despite the grief of knowing what was coming, it was oddly a very calm and serene experience and felt honoured to be able to have those last few hours alone with her, amid all the flurry of the rest of the family being around. Held her hand, said a few words to her.

There was also the inevitable guilt of wanting her to let go and be out of the suffering. 

I'm really sorry for your loss.  Take some time out to care for yourself. If you're like me your emotions will be all over the place for months going from feeling absolutely fine for ages and then a sudden flood of sadness will be on you from nowhere. I still forget she's gone and go to send her a text now and again. When the cold weather hit a few days ago I picked up the phone to call her to make sure she was keeping warm.

Keep thinking nice thoughts. Use your friends and family as comfort, or spent time alone with yourself if that's your thing.  I've started visiting my granddaughters more often whenever I feel particularly sad. They're too manic and hectic to let me stay sad for too long.

Best wishes. It's a hard time. 

Take great care of yourself. Grief is a long process, and a complex one. Just when you need rest, you can't because your brain needs to replay.

Possibly - from experience - writing it down may help, might just distill the experience and allow the mind to settle.

Wise and compassionate words already on this thread.

Also try and take some comfort in the thought that at least you were with her for her last moments, as she was with you for your first.

You couldn't do any more for her, and it must have been so much better to have loved ones with her as she left this world.

I'd spent many hours sitting by my mom's hospital bedside, listening to her breathing, knowing her death was coming. Some time in the small hours, the nurses said to me, "Nothing's going to change for the next few hours, go home, have a shower, come back". I lived close by, so I did as they suggested. Driving back in the dawn, Guns n Roses' "Sweet Child o' Mine" was playing on the car radio when my mobile rang. I knew instantly what it was. My mom had died in that hour or so I was away.

It's good that you were with her and I'd take great comfort in that.

Mine was very similar Andy. Spent the night in the room with her, went out to get a shower at the hotel and on the way back I got a call from my cousin to say she passed. I was only about 10 minutes away. 

Grief is an individual thing and the way it takes people covers a very wide spectrum. Don’t compare how you’re coping with how other family members are.

In the short term try really hard not to dwell on the worst aspects of what you’ve just been through. Might sound trite but when your mind starts to fixate, try taking three deep breaths and redirect your thoughts to happier memories of your mum (sound physiological basis for the three deep breaths thing).

All the best

Sorry for your loss....

Your mind will have been overwhelmed and it's not possible to process the thoughts and feelings you have had and are still having...you may not have stored the experience in a way that your brain normally does whilst in a traumatic time....it'll likely sort itself out but only in time. Just be by your loved ones and try and accept that time is the thing....eat, drink, sleep if you can....best wishes..

I'm sorry to hear about your mum There is little I can say but after my parents died, I found that speaking to their relatives and friends helped me a lot, and now when I think them, I invariably reach for the idea in Mitch Albom's book, Tuesdays with Mori:

Your loved one may die, but your relationship doesn't.

Condolences, you have obviously lost someone that you cared very deeply about.

I think we will all have either been through it or will experience it in the future.

My only advice is that it is a very personal thing, its OK to be relaxed and pragmatic about it and its OK to be really sad.  The only thing that you should  not do is feel that you have to conform to anyone else's ideas on what grief should be or look like.

I have. Just tell my short story. My Mum was so awfully ill and suffering. Slowly, slowly over the years I got better about it, especially after the first year was past

Very sorry for your loss and condolences 

I could have written most of this! I had days in hospital with my mum drifting in and out of consciousness. I left for the evening to get some sleep as she seemed stable and got the call 15mins later. It really felt like she had been waiting for me to leave before she finally gave up as she didn't want me to be there when it happened. 

My grief and sadness and loss comes from the perspective that she was a brilliant mum and I miss her. Focusing on good memories and the things I love about her (the reasons why her no longer being here makes me sad) really helps with the darker moments.

Feels like I'm hogging the thread but it's brought me mam to the forefront of my mind today (in a good way).  I forgot that I'd ordered some jewellery for my cousins back home, where you upload a photo to the site and they embed the tiny image inside the pendant...so if you you hold it close to your eye and look towards a light, you see the image.  

They've all literally just arrived.  I'm looking at one now, my mam and my auntie (my cousins mam) together having a laugh.  (our extended family were more like brothers and sisters than cousins).  And there's another one I've had made for my daughter, sitting with my mam in Paris about 20 years ago.

Fighting back the tears here. I can't believe she's not around anymore.

I can't say much about the watching part, but my Mum died reasonably young and I find a few things comforting:

 - She wasn't on her own when she died which must have been reassuring

 - She didn't suffer (very much) and always said that she didn't want to live if her quality of life was poor

 - She knew we loved her and were going to miss her

 - It is the right way of the world for your parents to die before you, and there is no way she would have wanted one of us to go first. So we were always going to have this grief

You have my sympathy and empathy.

My mum died in December. She was just shutting down gradually over a few weeks and I'd asked to be notified if things changed significantly  - I also looked in on her most days. However, I managed to turn my phone off and missed a 2AM call - she died an hour afterwards.

I really don't know, despite being guilty and annoyed I'd turned the phone off, if I actually really wanted to be there or not but little sense in dwelling on it now I suppose and yes, a major feeling has been relief. I know she didn't want to be here and her dementia, for me, was a prolonged and painful departure. I don't feel outwardly hugely upset but know that for me grief manifests itself in stress and anxiety - for which I could probably do with some help. 

thanks everyone, massive appreciation..

The brain tombola has turned into a bit more of a jigsaw now. Pieces still moving about but not at the rate they were earlier. Sleep still not happening but it’ll come. Starting to form some more coherent memories of what we said and saw, which is comforting. The sadness is coming in waves. I hallucinated my mum walking into our bathroom as I walked out this morning, literally jumped in the air and screamed full pelt. Neighbours probably thought about calling the cops! Anyway, it’s been lovely to read all your first hand accounts and advice. Really grounding and helpful to know what others have felt and done.

TC, I remember clearly reading the threads about your mam. In fact, I thought of them while I was at the hospital wandering around looking for tea in the middle of the night, which is partly what encouraged me to post this. Thanks for replying.

Bulls Crack, if you think you need some help just get on it would be my advice.. GP can help you find something. There’s no shame in it, and no harm. I’ve delayed and tried to push through in the past. I shouldn’t have, only hade it harder. We all need a bit of help with this kind of stuff. All the best..

I can't offer anything much more to what's already been said but you do have my sympathies. My mum is still going (despite some serious episodes) but my dad died almost 30 years ago. The process of dying from cancer wasn't good. I was there but he was so far gone that I don't know how conscious he was of our presence. It didn't stop me talking to him so I hope he had some comfort from it. In the years since I've not really dwelt on it too much as we often had a difficult time relating to each other. I do often think about him though and regret that we didn't come to regard each other more as adults. It will be difficult (of course) when mum goes. As you'll be finding out there's a whole complex set of thoughts and possibly regrets (hopefully not too many) going through your mind. I suppose it's our way of processing what is one of the gifts of being human. I don't have a particular faith but I often wonder about the possibility of an afterlife and if we will ever see our loved ones again? Perhaps it's just a dream but if it is then the thoughts of being blessed to have had parents who cared enough to bring me up in a loving home and give me everything they did will be a great comfort.

Funnily enough, I handled my Mum's death in a practical way - or so I thought. I had a (sick) newborn baby, a one year old and very little sleep that year. A year or two later I went to see a film with a load of acquaintances and embarrassingly for one reason or another - it was Mamma Mia 2 of all films - I just absolutely lost it and had to leave. Not before the whole room heard me totally out of control sobbing and wailing. I don't even know what happened. I try to laugh about it now but it was mental at the time (this is years ago btw)

I find myself having similar 'relief' thoughts that I know are completely rational, yet still feel slightly guilty about.  Knowing that she was in pain, and that her descent was really quick.  Also knowing how awful it was to watch my Nanna suffer through the fog of dementia before she passed...My Mam was spared from all that.  Totally rational, but it's goes against all norms to be 'happy' that someone has passed.  If that makes sense.

And as for missing my mams passing...she was there surrounded by loads of other people who loved her and who thought of her as a second mam.  That makes me smile.

Keep an eye on the stress and anxiety.  I'm not really one for outward / chest beating grief.  I prefer to deal with things on my own.  I'm definitely more emotional about little things these days.  Random acts of kindness and nice things make me smile / cry when they never used to.  I feel massively homesick at the moment but there's nothing I can do about it because home's not there anymore.  Places are and other family are, but she's not.  I might go back next week for a bimble along the beach

Wandering around the hospital in the early hours, stretching my legs and looking for tea was exactly what I was recalling as I read your post. Still very vivid memory

We both seems to have been blessed with a bloody awesome, world beating Mam who death has caused a massive hole in our lives.  I feel very lucky to have had nearly 50 years with her.

Rest assured that it is totally rational. That people you discuss it with will usually identify it as a 'blessed relief', or some similar words. And that is not merely a trite consolatory saying; it is an honest, impartial reaction to seeing the end of untreatable suffering.

I had the opposite with my dad at the end of his cancer. I'd seen him at the weekend - we'd talked about whether he wanted to be alone or he wanted someone with him and we agreed that I'd come and be at his side. I then came home on the Sunday night and on Tuesday got a call from my brother to say that he'd deteriorated and was going to be put on a syringe driver. We knew that this was the end and he likely wouldn't regain consciousness again (he was doing full on death rattles at this point) but we didn't know how long he'd last. I had to wait for my partner to finish at work and then drive me three hours back up to West Cumbria, getting there at about 11pm. I went in to see my dad and say goodbye and a couple of minutes later that was the end. I strongly believe that he waited for me to get there, which is sometimes a comfort but other times makes me feel guilty that he hung on in that state for so long.

For me, the process of his terminal cancer was such a traumatic experience that my main reaction to his death was just relief. There'd been so much anticipatory grief in the run up but I barely cried at his death, just cracked on with sorting out the funeral directors and admin. The proper pain at his loss only hit later and was so bad that I didn't know how I'd bear it, didn't know how it was possible to deal with this this gaping hole inside. For a while I couldn't think about him at all because it would just bring back the bad memories of that final year (like picking at a healing scab and making it bleed) but time has helped with that.

You've been through a traumatic event and your brain is understandably struggling to process it so just take it easy and try not to get lost in that feeling, distracting yourself can give your brain time to rest between periods of grieving. Replaying all that bad bits is a response to the trauma, and a way for your brain to connect with the last moment you saw you Mum. After a while it comes in waves, you'll start feeling ok and then it will hit you when you're not expecting it. Later there is a different pain when the feelings and the memories fade even though you may not want them to. Grief sucks. 

Time does heal. My advice is to rest as much as possible, eat well, exercise (this will do wonders for your brain), and do things for yourself. Don't feel guilty for being happy, she would have wanted you to be, keep reminding yourself of that. 

My Dad died in November, with me by his bedside. I had to be strong for a year as his carer, and I was strong for him and my family during the dying process so it wasn't traumatic for anyone, but when I got home after he died it hit me like a car crash, I'm still dealing with physical symptoms even with my mind in a better place. 

Lots of wise words so far on this thread.  I haven’t got much advice except the seemingly trivial ‘be kind to yourself’ and ‘take things at your own pace’.

My dad died suddenly in 2022 and my mum died in 2023 after a year of steady but relentless decline.  I spent the year between the two deaths trying to support my mum as best I could while she approached the end of her life.  This was the year that I’ve spent closest to the concept of dying (and to people who are dying) and it certainly gave me a different view of life and death and the fine boundary between them.

Only after a year of dealing with the practicalities of both their deaths (probate, executor duties, clearing and selling the family home) have I really begun to process their lives, their deaths, and my own future.  I’m strangely thankful for the mental jolt which makes me look at my remaining time alive, and how to live it.  I do find it a bit sad to think of all the things which will happen to me and my family which my parents won’t witness, but the blunt inevitability of this fact stops me from pondering for long.

My dad has cropped up in a couple of dreams recently – most recently carrying a large cake across a road while I was driving (I stopped to let him across, obviously!)

My dad developed Parkinson’s in his early 50’s which he managed quite well. In his early 60’s and over a 40 week period he developed neurosarcoidosis, osteoarthritis, an arm amputated, paralysed from waist down. These 40 weeks were in Hospital, 25 of these in the Walton Centre for Neurology. He was given the Last Rites twice in this period. He lives for another five years, regularly blue lighted to hospital, list counter over the number of time we were told ‘prepare for the worst.’  He didnt want to live anymore and I promised myself not to feel bad about myself if I felt a bit relieved when he died. We were in hospital when he died but not at his side. Miss him like mad, sob when I hear his favourite classical music, was a bit relieved when he died and did not feel bad. 

This may sound a bit weird and if it's inappropriate I apologise, but it really helped me to focus on the positives.

I was at my mum's side, administered her last shot of morphine, then took her pulse and announced that she'd gone. Over four months she'd gone from fit and full of energy to diagnosis, failure of chemo, to palliative care. She should have had decades ahead of her. On the positive side she'd had time to say goodbye to the huge number of people from round the world who loved her. She was horrified of ending up with dementia like her mother, and a few years before had asked me, as the most responsible offspring, to ensure that if she went that way I would "take her to Switzerland". Thank f*** I won't have to do that. And most of all, although it was too early, this had had to happen. I had to see my mum die, because the alternative would be far worse - that she'd see her child die. It's silly, but that's still a comfort to me.

I don't think that's silly, inappropriate or weird at all.

I still have my parents, but we had a close call last year, and dad is in decline. I already find myself in tears at times, thinking of how I will miss sharing my news with them; what I have been doing, where I have visited, and what they have been doing (which, sadly, isn't much these days). Especially when walking in the area where they have lived, and enjoyed for the last 37 years.

So my heartfelt hugs go out to all those grieving.

I held my mother's hand as she breathed her last.

It would have been much tougher if my brother had not been there.

Now you can think back to the vibrant woman who brought you into this world and smile about the memories without the stress and worry. Try to laugh at something she and you laughed about together.

Look after yourself.

Queen Elizabeth II got it right with "Grief is the price we pay for love" 

Such a good thread - lots of great advice and experience here through sad (but ultimately universal) themes. Two things strike me as worth saying:

1) there's a lot of stuff that ideally could be sorted out before our loved ones die, but this requires a fair amount of planning and forethought on something most of us would rather gently avoid - talking about dying and practicalities with your parents...

A good friend (John Oakstone) wrote "Twilight Shepherd: A beginner’s guide to looking after your ageing parents" - it's on Amazon and I think available as paperback or ebook. There's a lot of practical info in there including navigating hospitals and care homes, and planning to make the "sadmin" as manageable as possible, which might feel anywhere between impossible to a blessed distraction from the pain, depending on your personality. I'd highly recommend it for those of us still lucky enough to have parents, even though they drive us nuts sometimes - we can still be aware of how lucky we are to still have them and how we will miss them in strange and unexpected ways when they are no longer physically there - but still emotionally connected. If you want a book that tells you practical stuff like how to manage going with an elderly parent to A&E with tips like: ideally bring a book, charger, some food: although going for food or coffee is a welcome break, you can guarantee that when you come back the doctor will have been and you will not have been around to give your part of the story. A cushion – NHS seating is basic.  If there are other people who can help, immediately set up a rota system. Don’t all sit there until 2 am and then feel bad there’s no one to be there for the ward round at 0800 then it might be for you!

2) listening to the radio the other day it was pointed out that there are only two possible outcomes if you meet the love of your life: they leave, or one of you dies. That's it. There really aren't many other possibilities. Acceptance that the best outcome is that one of you dies is really hard, but made easier with some planning for how to manage. We often put in a lot of time and effort to our parents but may be less good at sorting out ourselves... so get a will written, think about EPOAs, make sure they have the potential to access your passwords for the hundreds of online things that need sorting out at a time of huge stress and inflexible bureaucracy etc. Particularly the will. We all need one, whether we realise it or not, and dying without one (hit by bus, fall, avalanche, random medical event) is more often than not a disaster for those left behind. 

Thanks for starting the thread and I wish you all the best - there was a great podcast with Elis James and John Robins talking to the recently bereaved Rev Richard Coles that I listened to the other day (driving down the Cleddau valley after exploring Fiordland) which talked about CS Lewis' comment about grief being a new landscape rather than "a journey" which was very helpful. 

b

There are times when I'll be pedalling my bike along, and I think of my dad, who died 10years ago before meeting my kids, and my eyes just well up. In the last year he would call me 4 or 5 times a week, and it took me a long time to understand that he wouldn't call anymore. His birthday still pops up on my calendar funnily it's the wrong date because I put it in wrong. I'd always have to message him to check because I could never remember. 

Take your time, take care, cry a bit if you need to and don't bottle it all up.

My one piece of advice: do hold your wife's hand. Everyone is saying grief is complex. Everyone grieves in their own way. But when I grieved I hugged the grief so hard I shut out the people who loved me. My Dad told me, as he was dying, "This time don't do what you did before." I took his advice. It's not wrong to get over it. 

Thanks. I have.. a lot. I was just shocked by my initial visceral reaction to her hand when I walked in the door at 3am. I couldn’t touch someone I loved because she was, in many ways, too much like mum. I guess I’d been holding mums hand for hours by that point. Brains are weird. Especially in extremis.

I'm sorry for your loss. 

Your experience chimes with me in some ways and it doesn't really help that we don't really talk about things like this.

I was there when my grandma died and I don't think it's an experience I will ever forget. Immediately afterwards I remember doing very similar to you and rushing to ask a friend who'd gone through a similar experience about it. I was frustrated with myself for not realising that what we were hearing was the death rattle, and not having held her hand. We'd had conversations with her early in the day; she went to sleep, as was normal; and eventually she didn't wake up. At the time I was in the kitchen dishing up tea (I was reminded at the time of Auden - 'about suffering they were never wrong, the Old Masters...'). But ultimately that didn't really matter. We'd been there. 

I have now really come to understand the concept of a good death and that is all I can hope for myself. It also made me realise I have already had one of the greatest loves of my life.

I hope it isn't inappropriate to say that the experience of seeing someone you love die and waiting for the undertakers and all that stuff isn't easy. Death is visceral. 

Do what you need to do, whether that's holding people's hand or not, and please don't worry about whether you're reacting as you're supposed to react.

It's over two years now and there are still occasions when the loss wrenches at me but there are probably many more where we laugh about what she would have said. (I darn all my outdoor kit with her sewing kit and I can only imagine what witty remark she would make of my needlework...) 

Wishing you all the best.

I’ve hesitated about posting this but here goes. I’ve had a near death experience about 10 years ago and without going into a great deal of detail I found it quite comforting and am no longer afraid of death. Of course I want to live a good life with friends and relatives but I’m no longer afraid of passing. 

I was with both parents when they died; 15 & 25 months ago - I definitely feel it was better that I was there even though (as far as anyone could tell) neither of them had any awareness of me in the last few hours.

It's an experience that you keep on replaying in your head, but hopefully, you'll follow a "normal" pattern and the frequency with which this happens will reduce with time. I'm almost at the stage when it only bursts into my consciousness very infrequently, but having said that, I still haven't managed to watch the short video of my mum in hospital about 4 days before she died when she was still fairly compos mentis.

So no particular advice - except that it will get better even if it's never 100% - hang in there.

My mum died with dementia in 2016. One of my sisters and I were there when she went, it was about 6am on a beautiful august morning and I'd just arrived to take over 'watch' from my sister who'd been sitting with mum overnight. She'd been unconscious since we'd all been called back home a few days previously. I had been wishing for some time that she just wouldn't wake up one morning because of the awful decline and life that dementia had caused, and my sister and I breathed a massive sigh of relief when she breathed her last breath. I felt a horribly complex mess of emotions - that relief, gladness, and intense sadness and devastation that mum had gone.

My dad had died 25 years earlier when I was in my late 20s, and after mum died I ended up Googling 'middle aged orphans' and it is a thing, and helped to explain some of the discombobulation I was feeling at losing mum despite it being a relief and absolutely the natural order of things. Losing people who've been there for your whole life is tough regardless of the blessed relief side of things.

Draw on happy memories to give you strength; accept that odd things will set you off - a smell, a piece of music, something really mundane. The intense grief will fade, but it will take time.

Thinking of you.

You’d be surprised. The medics tell me hearing and awareness last a lot longer than you think. Even when checking for a non existent pulse, the nurse treated my mum with such respect, using her name and speaking as if she could hear. I understand why but it was beautifully done.

mum hadn’t responded to me or dad for hours but I read her a card my 9yo son had drawn and my wife had texted me a photo of. That was a hour before she went. She managed to flutter her eyelids and move her lips. Dad and I immediately disintegrated in tears. That was special.

I have a neighbour who looks like my mum. We used to joke about it when my mum was alive (with my wife and mum, I've never spoken to the neighbour). I still get a twinge when I see her walking down the road.

My dad died during the early days of covid (he didn't die of covid, he died of cancer, but it was the covid lockdown period). I was working in a care home at the time so was worried about being a risk of covid to my mum, so I saw my dad when he was dying, but my mum wasn't in the room with us so I left so that she could be with him until the end. 

I was sad I couldn't be there, but it was more important for my mum to be there. 

For various reasons, I conducted the funeral. He wouldn't have wanted a religious funeral and I felt odd having a celebrant who didn't know him or anyone else. So I did it. 

It was hard, but I was proud to give him a good send off and I do think it helped to process it, standing up in front of the 10 people who were allowed there! But actually the process of writing what I was going to say gave me a chance to reflect and put feelings into words. 

I'm not saying that you should necessarily do the funeral (although maybe you could), but maybe actually some sort of process of writing stuff down or saying out loud would help?

At the end of the day though, we are all different and what helps one doesn't help another. Take your time and do whatever you need to do.

Thanks. This thread really is UKC at its best. I’ve been here 20 yrs and I’ve seen most of you about on various threads. It means a lot

Both my parents died whilst in medically induced comas.

The night before my Mum died I slept in the hospital on a sofa, she died peacefully the next morning with the family around her. 

Spend 3 days/nights in the hospital when my Dad died, that was much more stressful as we were just waiting for the inevitable to happen. He never came round until the end when he opened his eyes, looked to the corner of the room and smiled (I'd like to think he saw my Mum).

I always remember them with a smile and I'm glad I was with them when they passed. Every year I bivy on top of Ben Nevis as a reminder.

Hope this helps

Euge

its so hard i saw my sister going through it, a few months before my partners dad died, it was only a couple of years back but its much better now although I still think of her as many days as not, but very hard for 6 months to a year and so heart breaking at the time I can't even explain it.

Wow, what an amazing thread.  Such honest and varied accounts if something most of us will experience but which seems largely taboo.  Thank you all those who contributed and thoughts with you Offtherecord and everyone else.  

I don't many people are 'afraid' of dying themselves - are they? We all realise that it's inevitable of course, and most of us will be hoping for long, happy, fulfilling lives. But 'fear' of death? Do people actually have that?

It would be very reasonable to be afraid of a long, lingering, painful death - but that is another matter.

I think the 'usual' response to a near death experience is to concentrate the mind on what really matters, and to make the person involved more grateful for what they currently have.

Do you mean heavy sedation and/or pain relief? Or something else?

I was with my mother last year when she died, and I had concerns (which I discussed with the medical staff at the time, and was finally satisfied about) that sedation/pain relief could be overdone for the benefit of the onlookers (*), rather than for the person dying. I was worried that I might be losing the chance of communication with my mother in her final couple of days.

(* E.g. to minimize the occurence of so-called 'agitations' in the dying person.)