Hello, this is the first time I have ever posted on any forum - I am in a dark place and I thought maybe someone out there might be able to help me make sense of it all. I lost my Mum four months ago, she had lung cancer. She lived for 5 months after her diagnosis and these were the saddest most awful months. She was terrified from the beginning, she coped minute to minute but her fear was the worst thing as I couldn’t help her with it. I keep reliving the last weeks, I just can’t get past it. She suffered so terribly in all ways - emotional and physical. I did all that I could but I felt helpless and so very very sad for her. The last night was traumatic, the nurse said it was Terminal Agitation. It was just awful, mum seemed in constant pain and distress for the whole night. Nothing eased her suffering, no medication or comfort. I cannot explain how appalling it was to see her suffer in this way. Nobody should have to endure that, I can’t come to terms with it at all. She had no peace. I can’t stop myself thinking about it, it’s like a film that keeps playing over and over in my head and it fills me with despair. I see her face, her pain and fear, I hear her cries. I wish I could have taken it all away from her. I carry this like a lead weight on my chest - life goes on, I have a loving husband, two wonderful teenage kids and a meaningful job but this darkness won’t leave me. Can anyone help?
Sylvie - I just wanted to acknowledge your post and say how very sorry I am reading about your loss and resulting distress. I can’t truly relate but my Mum is frail and elderly and I worry what will become of her when the inevitable starts to happen. I did however lose my Husband to a heart issue and the EOL symptoms were truly distressing. I remember in the Hospital leaving his bedside as I thought I was distracting him from sleeping and I slept in the day room instead. I wouldn’t have had I known about TA at the time. its a terrible thing to witness isn’t it.
You say you lost your Mum four months ago which in one way is just a blink of an eye but in another it’s such a long time to be struggling with such painful images. I remember being utterly traumatized myself and still am some 14 months later. Some people on this forum liken it to a form of PTSD and I agree. The only advice I can give is please don’t suffer in silence, the longer you try to cope alone the harder it becomes as you then start to suppress the feelings. It’s natural to go over events in the early weeks but if you feel the feelings are becoming unbearable and you are caught up in an endless cycle of rumination please seek out a sympathetic GP. to have a chat with. One with whom you know you’ll feel at ease with. I’m sorry I’m not being very helpful but I’m sending compassionate thoughts and I’m sure others will be along to offer their advice as well. Kindest regards.
Sylvia, my heart goes out to you. I totally agree with Tina’s advice. All I can say is whenever I think about my Dad when he was suffering in hospital I try and replace it with a happier memory, at least we were there for them at the end and they were not alone. We do the best we can at such a traumatic time, I tell myself Dad would want me to remember the better times. I know it’s hard. You will get there. x
Dear Sylvia,
I felt relieved and sickened to read your post. My mum died in February 2017 and she experienced terminal restlessness. I don’t think she slept at all that last week despite all the medication. She was 92 and fearful and crying with exhaustion and begging for sleep. She was the best mum in the world and didn’t deserve it.
I am so sorry that your poor mum suffered so and that you are living with such grief but it has helped me to know that I am not alone in this. I know the darkness you are talking about but I have no words of comfort to offer you.
Marigold
X
Hi,
I too had to face this especially over my mum’s final 48 hours as she had the terminal twitching and I lost her in December 2017 so still pretty raw for me. The only thing I am trying to do is erase those last 48 hours from my mind and although I couldn’t stand seeing my mum dead - I now am slowly realising that she did look so much more peaceful. I have terrible flashbacks of the last 24hrs and the coughing and gurgling too - but we were there and I know my mum knew I was there so I take great comfort from that and what I put myself through just to be with her and I’m sure your Mum would feel the same - what an amazing gift we were able to give to our mums - seeing them out of the world they brought us into. I can’t stand to think of my Mum the day before and it really upsets me - but I am so proud I didn’t leave her alone and isolated and worried - as I was there. As awful as the EOL twitching/agitation is - I’m sure like with my mum - we were a great comfort to them. Mine had had a mini stroke too 32 hours before she passed and was unresponsive - but when I kissed her goodbye after she’d had the stroke - she kissed me back - I was gobsmacked as she knew it was me as I’d be with her talking to her all day. Try and think of any little things that you know made a difference to her - if you were in her situation could you think of a greater gift from a daughter to cope with it all just for you.
So sorry you’re facing this, it’s awful and I’d never used a forum like this either but posted just before my mum passed as I knew I was in the final days and I’d had a two year build up to this and then it all happened within 9 days - and out of that 32 were awful - 32hours too many for my lovely mum - but in the great scheme of things - a smaller amount of time thank god.
Keep chatting on here - it really helps. x
Hi Sylvia
I am so sorry for your loss I too lost my mother 4 mths ago I also am very distressed and in a very dark place . I don’t know how to get out of it also lost dad the previous April. … I have a loving husband and 3 sons and also a job in the uniformed public sector but this does not help at all… I cry all of a sudden very easily which I never did but the pain is unbearable… Unlike you I was not there at the end got there 5 mins too late same with my dad the last 5hing I saw was my mam looking at me going with her eyes half closed this memory won’t go away
I am going to see a medium as I am hoping for some answers if you believe in that sort of thingmaybe it would help ? I dont know what else to say I don’t like medication so won’t go to the doctor … I think the healing process will take a long
Time sending kind Thoughts. …
Hello Sylvia I am so sorry about your mum. Your story is my story my mum was diagnosed with lung cancer in 2007, in the February and because she lived 90 miles away and I was still working we thought it best for her to come and live with us, which she did until she died in the October. She too got very agitated for 24 hours, although and it was an awful thing to watch , but its very hard not to keep reliving it, the only way I got through it was because she accepted that she was terminal and just said “everybody comes and everybody goes and its my time”, she said she didnt have any pain just felt tired… No one can tell you how to cope, but you will - dont expect too much of yourself, why wouldnt you feel down and why wouldnt you cry , and why shouldnt you feel angry ? you did everything you could do to make her last months comfortable and that is all that you could have done.
I have just lost my husband in September on holiday, his last few hours were horrific so I am dealing with my own grief now and like you I keep reliving what happened, I cannt help it so I do know what you mean, I think maybe we go through it because we cannt believe whats happened but it hurts and maybe we have to go through the pain before we can go forward, I dont know but its very hard. I have a loving family but they are dealing with their own grief so I tend to say that I’m ok when I’m not,
I hope you get some comfort from this forum and know that people are thinking about you and know exactly how you are feeling, that youre not going out of your mind and thats its normal to have the “grey days” and perhaps it will help you, as its helped me to feel a little more positive.
regards
June
I am another who watched their Mum have TA. I wish doctors would explain about this to people properly as it is frightening, I was just told vaguely that Mum might twitch a bit but it was more like fitting. Luckily for Mum we had wonderful district nurses who came straight out when I phoned them to make her more comfortable. Mum’s last 36 hours she was unconscious with a syringe driver pumping morphine into her for the pain she was in. She never came round but at the end gave some horrible coughs.
Mum passed away in the summer of 2016 so it is nearly 18 months. I was better for a while but the last 6-8 weeks have been very low again. I keep telling myself that I have come huge strides already, no longer have the terrible meltdowns I had at first. It comes hard when you live with your Mum as I did. I have since moved house through necessity and love my new home to bits. It’s warm, comfortable and I feel safe but I would much rather still be at home with Mum. Coming home tonight I sat on the train with tears in my eyes knowing there would be no one waiting to hear about my evening out.
Lucy999 your post was lovely, what a super daughter, I bet your Mum thought the world of you.
Thank you Mel, you’re lovely comment made me shed a tear last night but it was so lovely thank you.
I’m sad to read your post as my mum also had the horrible coughing and gurgling and eyes rolling during her last 36hrs. Memories I’d rather erase. It was almost like choking and it was terrible to watch but I still don’t regret it but somehow you have to live with it.
Gives nd some hope that in a few months I may be a bit more stable with emotions and I’m not the only one.
Xx
Hi Lucy,
The worst of the things you saw will recede in memory as time passes. I will be honest not completely, I can bring to mind as quick as anything things I saw but I try not to. Other things that happened though not funny at the time make me smile now. The day I walked in and found Mum had somehow got out of bed and messed herself enroute to her chair. She was sitting asleep with her hair in mad corkscrews and looked like a naughty school girl. It took ages to sort her out and was in fact the last time she got out of bed.
I am hoping as the weather gets warmer and the days longer I will start feeling a bit better. The cold days with not much sunshine are soul destroying. Don’t feel like going out much but I do. I am lucky to have great friends who have put up with me being not very good company sometimes.
Mel
Hi Lucy,
I send you my Wishes that you feel a little better as time moves on.
Like yourself, the first time I had ever posted on a forum was when I lost my Dear Mum on the 2nd jan, this year.
She would have been 69 yesterday. We love our mums so much, So to see them in any pain is just agonising.,and feeling helpless to stop their suffering.
No wonder you feel the way you do, it would be quite abnormal not to have these strong emotions.
I found that reaching out on this forum brought me the initial comfort I needed, and am very grateful. Just to know others out there do care, even though are strangers to us and can offer support and advice since they’ve experience similar situations to us.
I wonder if you have seen a GP to ask for any help?
I think the more avenues you can explore, the better to ease your suffering. Everyone is different so you need to find things that can be effective to you.,and sometimes it’s surprising to find things in unusual places.
Just don’t keep your feelings bottled up,when there is plenty of help out thereto explore.
The mind and body are connected, so if you can get your body working as best as possible it will help your mind. I find that walking and taking in as much fresh air as poss helps me tremendously. As does eating as healthy as poss and regular.
Since my mum passed away me and my brother decided we needed to get healthier and loose weight. In just over a week or so of making these changes its very encouraging to see and feel the differences already.
For me, the improvements in my sleep are so welcome, had forgotten what it was like to sleep decent and wake up feeling refreshed. I put it down to the relaxing walks and fresh air, and the chance for my mind to calm down and just switch off for a while.
I find candles, and low lights soothing. But basically anything you can find to create a relaxing environment will all contribute to ease your stresses.
Have you ever tried meditation? There are tonnes of videos on you tube, just find the ones that suit you. I found the deep breathing, music and guidance can slow my mind and body down and afterwards feel a load better. Hypnosis was incredible for me and yoga too.,both can help greatly with stress/ anxiety etc , but key is to find a good practitioner that works for you,
These are some suggestions that have helped me a lot over the years when I’ve been in stressful situations/ dark places.
So, on an end note, I hope you might try some of these ideas? I’m sure they will help you if you can practice them?
All the Best To you And your family xxxxxx
Y
I lost my dad to cancer, by the time they found it, it was so far advanced he didn’t have long… I was there morning noon and night every day… It is the most traumatic time of my life, its 6 years on and I have days that are horrific still… The one thing I keep at the forefront of my mind… Is how bad it was at its worst and I wouldn’t want that suffering for him… Although I have daily heartache, its more bareable than watching him suffer… Its not easy by any means, but the pain is easier to cope with, when I think of him not suffering … Hope yr grief goes soon x j
Hi I completely understand how you feel. I lost my mum January 17 to dementia - an extremely cruel disease! My mum spent her last 5 weeks of her life in hospital - her deterioration was so rapid she lost the ability to swallow along with mobility in her legs. She suffered terribly for the last two weeks - constantly thrashing around in bed and extremely agitated, again like your experience no medication seemed to help. Myself and my sister found the whole experience traumatic. The sad thing being she could not communicate her pain. I constantly relive my time spent at her bedside. I kept telling myself I couldn’t bear to see her suffer this way and tried hard initially to focus on that thought. Having said that I don’t think it’s helped.People tell me to try to focus on happier times when mum was well - which I find difficult. I guess we have to try to remember that our mums wouldn’t want us to feel this way - easier said than done.
Take care
Caz
It’s nearly a year since my Mum died. For me too it plays in my mind like a horror film. We are conditioned to tell people ‘Yes, it was a peaceful passing’, when, the reality, I have found after being truthful to lots of people, is usually far from that. My Mum really struggled, as did my Nan, who died a few days before my mum. It broke my heart to watch my Mum. I had all these ideals in my mind, of her drifting off in her sleep. When the syringe driver with the ‘end of life’ drugs was finally administered, mum did relax. I try to think of those moments. I also try to focus on the times we had together before she was sick, and the times we had together when I was caring for her, when we had long cuddles and a few good giggles. You are not alone with this, and when I tell people it was a struggle at the end, it seems like a relief to people that finally they can be honest about their loved ones end. Focus on the good and let’s hope that in time the memory of the last bit will fade. Much love to you all. x
Hi Sylvia, I just want you to know that I’ve experienced exactly what you are talking about. My mum was diagnosed with lung cancer and died 2 weeks later, in December. I can only describe the whole thing as traumatic and the memories are unbearable. As you say, the anxiety and distress was just awful. I cry all the time about it. My poor, brave mum. I felt helpless as well and i had to keep leaving the room as that terrible noise when she breathed was simply unbearable. I’m lucky that I had the support of my sisters and the wonderful macmillan nurses. The final days got worse and my mum stopped talking to us but whenever she heard my voice she put her arms up to me to cuddle her. It’s so painful to remember. I slept at the hospital at the end, I couldn’t bear to leave her. I just hope that as time passes, these memories will fade and all of our happy years together will comfort me. It’s all too painful at the moment. This week I’ve felt a bit calmer, I don’t know why. I’m still taking one day at a time, just functioning enough to get to work and sort my children out. I can’t say anything that makes you feel better but, for me, reading your post just made me think that someone else understands. It’s my first time using a forum as well, it helps to share with people who aren’t emotionally involved with me. Thankyou for sharing your story x