Help me cope with watching my mum in distress before she died

[TheFarSide]

My mum died a week ago of heart failure and pleural effusion - she had been ill for a long time with a blood condition which meant she was severely anaemic and had fortnightly blood transfusions for the last two years. In recent weeks she had become very breathless. She was admitted to hospital with chest pains, and given painkillers and oxygen, but deteriorated over three days. She was only 75.

I live two hours away, and by the time I got to her bedside she was very confused. I'm finding it hard to forget her gasping for breath and her big frightened eyes when we first went in. She was very agitated, trying to pull the oxygen mask off, and trying to pull out a catheter. She was bleeding from where the needles were taped on her skin. The nurses gave her morphine and she spent the last few hours in relative peace, but I'm not sure she knew by that stage that we were all there with her - my dad, brother, DH and I.

I whispered to her over and over again that we were there, that we loved her, that she would soon feel better (we knew she was dying and would then be out of pain). Compared to the trauma that some people go through, I know I need to be grateful that she was pretty much unconscious for the last few hours but I'm having terrible trouble worrying that (a) she was in pain and distress and (b) she didn't know we were there.

Has anyone had the same experience? How do you cope?

[Marlinspike]

I have no experience or knowledge to answer your questions, but I just wanted to say I am so sorry for your loss, and that the manner of your mother's passing was so distressing for you.

Hoping someone will have some more constructive comments and advice soon.

[shakti]

Hearing remains for a lot longer than people think so I am pretty sure you would have heard you. I also firmly believe (ex nurse who has sat by many beds) that people know if their loved ones are there. In my opinion (and I know this sounds mawkish but I am sincere) love communicates until the end.

As for being in pain, it is very hard to know. I can tell you that morphine affects the memory as well as pain perception. It is highly likely that she forgot the pain as soon as she became comfortable.

Please just remember that you were all there - if she was conscious enough to wonder if you were there, she would have known you were. I hope you ma manage to untangle that sentence!!!

I am so sorry - losing a parent is never easy. Be kind to yourself and have a hug x

[bedhed]

I haven't posted on mumsnet for a while, but just came across your post. I am so sorry for what you are going through. My dad died 3 years ago, the last day was very traumatic like yours. My dad also had respiratory distress and died in ITU. I was also haunted by this experience, and it played in my head like a video stuck on loop.

It is very early days for you. Your grief must be very raw, and only compounded by what you experienced. It took a while, but in the end I was able to see that though awful, the last day of my dad's life was only a tiny part of his life. In a way you will never really know the answer to your questions and this is the awful thing about grief. However with my father I am sure he knew we were there, as I am sure your mum did too.

[TheFarSide]

Thank you - kind words always help Marlin and it's good to have a medical perspective Shakti.

She was in a critical care unit. I didn't like to see her being pulled about, and I couldn't see the point of her having an uncomfortable catheter in when she was dying, or being disturbed to have her blood pressure taken. The nurses were great though. I guess they were as gentle as they could be.

[TheFarSide]

bedhead - thank you so much.

[iliketea]

Can't tell you how to cope, but allow yourself time to grieve. Grief is a very individual emotion, and manifests in many ways.

Did your mum die in hospital or hospice? They may have bereavement counselling available that you can access. Otherwise, you could contact cruise. Because your bereavement is so recent, they will probably recommend waiting a few weeks.

Take comfory in knowing that you supported your mum in the last few days of her life - i'm sure loved ones are aware, even if they are unable to express it.

[nickschic]

Im really sorry for you .

I dont know if you are a believer in God or not but sometimes you can find a great deal of solace in prayer and contemplation,I think that love is so very strong that its tangible even at that moment of death and it is my absolute belief that your Mum will now be at peace healthy and vibrant as she was in her healthier years,I think death is very much like a trip to the dentist,we dread it,we fear it and then when we go the moment passes so quickly we walk out and see that yes we have survived.

For those left behind the grief is hard we think we should be able to stop all intervention to have the textbook peaceful 'death' we read about uninterupted by machinery by rules and regulations- you did everything you could to show your love to your Mum right to the end and just as when we ourselves deliver our babies and may see them hooked up to machinery reliant on support we know that by letting the 'medicine' take over we are doing right in the longer term.....you did right for your Mum,her fear was fear of the unknown a fear we all have but at the moment of death when your love was still around her I believe God waited with warm arms to welcome her.

Be kind to yourself allow yourself time to grieve to feel sad to feel anger but soon you will remember your lovely mum in her healthier days.

[racetobed]

Hello thefarside, i'm very sorry you're feeling in doubt she knew she was with you. Please remember, whatever you're going through right now, you are not alone. You have my deepest sympahty.

I was at my grandfather's bedside when he died 26 months ago. He, too, was very panicky and distressed when we arrived at the hospital before spending several hours slipping in and out of consciousness and finally dying five hours later. We were all with him.

I remember feeling (strangely) embarrassed in front of my family about telling him how much i loved him, and actually, i couldn't verbalise it, so i pretended to sing to my new baby daughter, knowing that it was a way for him to hear my voice for the last time. Anyway. The point is that I am convinced he knew we were there, and that he even understood my stupid singing as a coded ' i love you'.

In fact, he actually died the very moment my uncle (his son) walked through the door. It was as if, despite his apparent unconsciousness, he was consciously holding on until the moment his son arrived. I later reflected that the initial (horrible) panicky state he was in was probably him fighting death because we were not all there. It was only when we were all there could he actually pass away.

From what you write, it seems that it was the same for your darling mum too.

[TheFarSide]

Thank you.

I recognise I am lucky I had time to get to her and be with her at the end. I wish I could believe in God because it clearly gives people great comfort, but I am a sceptic who needs proof.

I need to stop dwelling on the bad bits.

[issynoko]

Give yourself time to move on from the traumatic last hours and think about all of the time you had with your Mum - that is the real sum of her life. Also, as others have said, I understand hearing is the last sense to go so I bet she did hear you. It might not have been only morphine that gave her peace at the end. Your voice and the sense she was loved and had you with her might well have had just as much to do with it. I have lost both my parents too and didn't get there in time for Mum, although was there with Dad. As time goes on it was not being there at all that bothers me most with Mum. You were there and I am sure you were helping her take her leave gently. Don't worry about God and take your comfort from the comfort you must have given her at the end. X

[TheFarSide]

I think my mum was waiting for my brother who arrived quite late in the proceedings.

When I spoke to her and told her to relax, we were there, brother was on his way, etc, she did seem to quieten down from her agitated state. When my brother arrived later she was doped up on morphine and semi-conscious, but when he whispered in her ear her breathing rate increased on the monitors.

At the time I felt she knew, but then over the next few days I started to doubt my memory. I think I am just torturing myself.

Thank you for sharing your experiences - it's extremely comforting to feel I'm not alone.

[Mbear]

Oh TheFarSide I'm so sorry for your loss..

I had something very similar nearly 7 yrs ago with my db and it is truly the most horrific thing to witness, even though I can now say that I would not have missed it for the world. There are just so many emotions skating around. He was sedated, but when they came to excabate him, he started pulling at his breathing apparatus, at that time I was the only one with him and it shocked me to the core and I had a panic attack. I think I was expecting not to have any cognition, iyswim. He didnt wake up, but I just never thought that he was still in there right to the end.

I think it is ok to say that it was the worst thing ever. And that it changed me. I too am not religious and have never sought to question why, I have always just accepted what is.

The main way that I have coped over the years (and for me, I am sorry to say it has stayed with me) - but to sort of break it down into 'that was bad, but it was only 1 hr of his life' - what I am badly trying to say is that I work very hard to not let his death define his life.

I always worry about posting my experiences on threads like these as it is such a personal journey that I don't want anyone to think that my way will work for them.

I really, really wish you well x

[TheFarSide]

Thank you. You are right, the distress was a tiny fraction of her life. She had a happy life and was very loved. I need to focus more on this.

I think as people have said I just need more time.

I do tend to dwell on things. I have also been feeling guilty about throwing away all her underwear - my dad wanted it out of the way. I found myself thinking "I should have kept one bra & knickers in case she needs them". It feels disrespectful.

Somebody slap me.

[Mbear]

You are very early into a long journey - I have a little more time and cynicism on you. I found that I could not do right for wrong, I questioned everything I did and back again, I think it's just such unfamiliar territory and my brain thought that I could erase memories by throwing things away, or by laughing or anything that you do day to day.

You don't need slapping, I promise. You need lots of hugs and tea and time x

[saffronwblue]

My dad died peacefully but with a very traumatic couple of days in the last week of his life. It took me a few months to a year before I stopped replaying those scenes and was able to remember all the wonderful times of his life. But this transition did happen for me and I hope it will happen for you too. Losing a parent rocks you to the core, I find.

[sphil]

I empathise very much with you. My Mum died of bowel cancer at 72, 18 months ago. The first few hours of her last night were amazing - she was lucid, positive and calm. The whole family was there and we all got to say everything we wanted to say. She told us that she wasnt afraid to die and that her life had been 'such an adventure'. I remember thinking that if this was death, I wasnt afraid of it. And then it all went wrong - her pain increased and they didnt have a morphine driver on the ward. Because it was night time, there were no nurses available to go and fetch one. We waited three hours for a porter to bring one up and in that time she was in terrible pain. Once it was fitted she became comfortable but was no longer conscious, and she died three hours later. I find it very difficult to forget those three hours of pain and focus on the wonderful time we had before, even though I know its important that I do so.

[lucymr]

Hi Thefarside. I've only just seen your thread or I would have replied earlier.
My dad died just before Christmas last year, I was 38 weeks pregnant at the time with my first child. He died of cancer and was in pain for a while towards the end, was on morphine and very confused. The thing that worries me most is that during the last few days, his speech was so slurred that I couldn't understand what he was saying to me, which broke my heart at the time and I still think about it all now. But what I would say to you Thefarside, is that it does get better - it's only been a week with you, so you're bound to feel completely raw and terribly upset. I had to leave my dad a week before he died as I don't live near him and had to go back home for antenatal stuff - it was all hugely stressful but I know that he knew I was there and I believe your mum did too. Like an ealier poster said - if your mum was with it enough to wonder where you were, then she was with it enough to know that you were. This is true.
I still feel terribly sad about my dad (he was 64) especially as he never got to see my daughter who was born 2 weeks later - and I am crying now as I type this, but it does get easier. When I think of my dad now, I think of him when he was well, or I think of some of the lovely things he said to me when he knew he was dying but could still communicate.
Take care of yourself and your family - always talk about your mum and the things she said, or would have said if she were here now. It helps. I never understood what people meant when they say that people don't die because the memory lives on, but I actually do now - it's a cliche but it's true - remember her and she is still there in some way. People are only really gone from your life when you forget them.

[TheFarSide]

Thank you so much everyone for sharing your stories - it really does help to feel I'm not alone. I have temporarily switched off so I can deal with the funeral tomorrow, especially as I am giving the eulogy. I have started reading Virginia Ironside's "You'll Get Over It" and am finding it extremely helpful. I am touched by all your support - thank you, thank you, thank you.

[nethunsreject]

SO sorry for your loss .

Some great support here. I'd also agree that it is VERY early days. It will feel less raw over time. I was with my Dad while he died and he had periods of distress while he was going which I found totally and utterly traumatic. I dreamt about it a lot afterwards and there were things I avoided for a while as they reminded me of those moments. Little things like the sound the bathroom tap made when you turned it off which reminded me of how his breathing was. This lessened a lot over time and now when I think of him I remember happy stuff, and the boring but cosy everyday stuff. Only occassionally will something remind me of his last moments and I have a cry and a cuddle from Dh and feel okay again.

Be gentle on yourself It is a very hard time. Lean on each other and talk, talk, talk about her. It all helps.

Did she know you were there? Yes, I'm sure on some level she did.

Un mny hug x

[ninah]

Good luck tomorrow TFS
fwiw I am sure your mother knew you were there - you say at the time you felt you knew, I think perceptions of this kind in these situtations are correct

[GingerbreadLatte]

How did it go TheFarSide?

I hadnt posted before but had beeen following your thread after a similar experience.

GBL x

[TheFarSide]

I was in a bit of a state at the funeral but managed to get my act together to read the eulogy after what felt like a very long pause to gather myself. From now on, I will always go to funerals and send cards, as it meant a lot to me to see so many people there.

We had a wake at a local pub and one of my old school friends showed up who used to be an intensive care nurse, so I pinned her in the corner and interrogated her about what happens when people are dying. She filled in some gaps, explaining why my mum was confused (medication and/or lack of oxygen due to her breathing difficulties), why patients pull out their oxygen tubes, how difficult it can be to give the right amount of morphine as too much can get rid of pain but also slow down breathing, which is a problem if someone is already breathless.

I find even after 10 days the trauma of watching her die is slowly fading and being replaced with memories of happier times. I am now able to talk about her without breaking down but am missing her very much. I don't want to sound like a drama queen, but I feel like a changed person, as if life will never be the same again and I am no longer safe. The Virginia Ironside book is proving very helpful.

[lucymr]

Well done THefarside and I really mean that - you obviously coped VERY well to be able to read the eulogy, you should feel proud that you managed this. You did something for your mum. I could NOT have done this, although I was 39 weeks pregnant at my dad's funeral which didn't help me keep myself together.
You are right though - there are years and years of happy memories which will become more and more prevalent in your thoughts as time goes on. Keep looking after yourself and your family. xx

[TheFarSide]

Thank you lucymr and everybody else - I can't imagine coping with a close bereavement while pregnant. You're all heroes!