Hi,

I am really so sorry to hear what you have been through. It must have been very hard especially as you were on your own and my heart goes out to you. My mum died about 3 months ago 5 weeks after diagnosis and although I wasn't in the hospital when she died, I was with her a few hours before. She was in hospital for the last 8 days of her life and because of covid and very poor communication from the hospital, I only got to see her the day she died. She was in a lot of pain, drugged up and agitated (like your mum) and the cancer had completely eaten away at her sinced I last seen her. I had lots of things going around in my head for months after - was she in pain?, was she afaid to die?, was she upset that I hadn't been to see her during her stay in hospital?

All I can say is that I hope things will get better for you as time goes on and gradually the happy memories replace the traumatic ones.

Oh Ghilgames_Diana,

I just had to reply to your post. I am so sorry to hear about your mum's passing and of all the stress that this has caused you. Losing our mums is one of the hardest things we'll ever do in our lives and I offer you my sincere condolences.

Sadly, although some of us do pass peacefully, this doesn't happen to everyone and it can be especially hard to watch a loved one suffer in this way. You will unfortunately hold these upsetting  images with you for a while, before you start to draw from the many happier times that you,ve both experienced. You will gradually find that these unfortunate images fade and you'll recall happier times instead.

Hearing is one of the last senses to go, so the chances are that your mum heard everything that you were saying to her until close to the end.

You are young to have to go through all of this, as was your mum. It is a shock to the system at any time, but especially the first time that you experience this. You have done well to be with her right to the end and I hope that, with the benefit of time, you will find peace. Please be kind to yourself and remember that there are no set rules when it comes to grief. It will take as long as it takes. Do you have someone to help you through this period?

My thoughts and prayers are with you. Please keep in touch. We are always here for you.

Kind regards,

Jolamine xx

Hi Diana, 

Firstly, I'm just so sorry to hear about your mum. I (24F) had a similar experience with my dad, 54, a couple of months ago. I don't think anyone can understand how awful this is unless they go through it themselves. I thought (or had been told) dying is generally peaceful too, but I found it harrowing and traumatic. I think I was sick after he passed. 

I think it's impossible not to have those questions after witnessing what we have witnessed - were they in pain? Could they hear us? 

If this brings you any comfort, I was told by the nurses that most of what we see before death is just the body reacting. For example, the agitation ie moving arms/legs up and down is called the Lazarus Reflex, and it's just a reflex reaction usually in brain dead or brainstem failure patients. The moaning is also apparently just the sound of air passing over relaxed vocal cords, even though it sounds distressed/sad. Crying could have been the eyes overproducing moisture as they've been closed for a while.

I know this is just unbearable but please know you're not alone and there are lots of people who understand and share those worries and questions you have. Please also know you did the absolute best thing you could do by being there with your mum.

Take care and all the best,

Laura x

Hi Diana,

I completely empathize with what you went through.  Three weeks ago I lost my lovely father to cancer and like you never appreciated just how traumatic the end could actually be.  Any other family members i have been with when they passed were significantly more peaceful.  I have been trying so soo hard to push the last images i have into a wee box far away from my day to day thoughts but at times it can become overwhelming.  I also put my fathers death down to the fact it was brain mets and we could literally see his brain shutting down in front of us after a series of seizures. 

Laura thank you so much for replying with explanations as to what the physical signs could be.  You really cannot comprehend just how comforting this is.  We felt so alone and unprepared for the end, we were largely left by hospital staff for his last few hours and felt quite vulnerable with regards to whether he required top up medication (it was left too late for driver to be put in place) and even when we did seek guidance from nursing staff it often took over half an hour for medication to be administered!

Hopefully in time we all can filter out the bad and remember all the good about our loved ones!

Myself and sister have lost our best chum and loving mother to lung cancer , in March  she was diagnosed after a year of the docs saying it was thrush in her throat through her inhalers   that's the reason she lost weight . No eventually advised to get a scan then was told it was lung cancer . She then took a blood clot to her led and was hospitalised,  home again . Told to go through chemo when she was 7 stone . I feel the GPS did not help . Told she had a tumour would last 3 months , then diagnosed as being wring , now thought it was a blood clot . Then told she would live longer , not to be , she lasted 3 months , I have no faith in any  NHS now . On the wed a nurse came to talk to my mum privately in bedroom to ask if she was knowing what was happening without our consent to this my said hope my girls can cope . She then came back to tell us we have a few days with her , we stayed with my loving mum held her hand , placed lots of fairy lights in her room,  played alexa , sang songs . Not knowing that it took 5 days for her to pass. We were exhausted gave her a face massage , lay beside her , yet the agitation in her face and the death rattke we heard all day on the Sunday which was the final day . Not one nurse told us how hard it could be , we then sat from 2 until 5 seeing how agitated she looked then called the district nurse who then gave her more morphine and midazalam , which supposedly is a sedative , told us she would sleep . Nope she looked towards the window jaw dropped eyes dilated wide and iris enlarged non responsive took 20 mins then eyes slowly dropped lay back and then she was gone . I have never suffered anything so traumatic in all mine.  Nurses should of told us how bad it could get I'm traumatised  and so is my wee sister . Heartbroken 

Hi everyone,

Apologies for not replying here for a long time.It has been 6 months since she has died and I kind of stopped looking at these forums since ,as I needed to recover and try to carry on.

I can say that with time it gets better.I am not sure if it is my own mind trying to protect me and blocking some memories or if the moment itself is not as freshly imprinted on my mind.

I still have nightmares and I still remember certain moments which marked me,and which will probably be there until my end,however, I found comfort in trying to enjoy life more.It is hard, but possible.I know my mother would have never wanted me to close myself down and stop living so I keep on pushing.

I also found some relief in reading about NED experiences, as I do hope she is in a better place now where she can no longer feel pain and hopefully watch over me.

BE strong !

Diana

Hi I too have had a very similar experience. 

I'm 38 my mum 76 in October last year following a few months off feeling off and constipation She had a stroke effecting her right side. She had 2 years prior had a TA and a year prior had a small heart attack. This time she was in the bath and my dad had to lift her out. She could walk but struggled. She was reluctant to call Abulance so I drove her in. She spent 3 days on stroke ward and was discharge on the premises my dad could care for her. Her constipation continued so she went to walk in centre and docs she also had fluid in her tummy they both sent her home with laxatives. Soon after she became so weak she had another appointment at docs who told her to go to hospital as he didn't know what was wrong with her. After 1 week was diognosed with cancer then had the fluid drained. She was told it was overian then moved to another ward where she recived little rehabilitation so I asked why she couldn't come home once I started to ask questions they referred her to the christie and It took me a long while to get any info but 3 weeks later and 2 weeks before Christmas she came home. She had to have blood tests weekly to monitor sodium levels. Her appointment at the christe was 10th Jan. While at home her astisis came back and she grew weaker so I asked the christie if she could come sooner they said not so finally she had to be taken via ambulance transport provided by them. She was in the christie for 5 days they said to weak for chemo but we will drain and they try and optimize with physio then hopefully can have chemo. She needed to come off her blood thinners before her tummy could be drained so they kept her in. I rand the nurses and my mum every day. My dad was down as next off kin. On the second day I rang n mum was really happy in a room with another lady haveing a nice chat saying how nice it was. The next day I rang n the nurse said she had fallen. No one rang to tell us she just dropped it in when I rang.  Everyday I spoke to my mum she sounded weaker and weaker. After 3 days she was moved to a private room and she was complaining off cold/numb hands. I rang n told nurse the next day her speach was slured I rang n told the nurse. They did nothing. The third day  my mum rang me and said to me "my speach has gone now" I could just make out what she said I told her not to worry and then spent an hour trying to get through to the ward I eventually spoke to the deputy manager and explained I had spoken to my mum who has rang me n had a stroke. She couldn't believe I was ringing her she spoke to the ward who rang me n said yes it seems so I'm sorry you had to ring n let us know. We are just takeing her for a scan to confirm. Then they explained she would be moved to a stroke hospital. On the day my mum rang me at 11am she got to the stroke hospiral at 8pm. It was clear to me no more could be done regarding cancer so I new she needed to come home. I then spent 4 days leasing with staff to get her home  the staff where evil. They would shout across the room when I rang to ask how she was. Doctors told me my mum had tried to leave even though she couldn't walk. My mum cried every time I spoke to her. She had a blood clot in her arm her arm and hand was dead. Completely black no feeling in it. She was bed ridden and double incontinent. I had to get her home I fought and fought and finally after 5 days she came home. She was so pleased. She died 2 weeks later at home. It was horrific. She groaned for 4 days. I cared for my mum we had no carers luckily I have 2 older brothers n my dad but mainly me. I learnt on the job how to role change continence wear, everything. We started oral mophine and was also prescribed oral paracetamol but this never came. On the day my mum died they placed Intrevena in leg my mum was pushing them away, she had daily jabs in her belly to thin blood, the nursed asked me to hold my mums hand away n I did I hate myself for it. She didn't want it. Shortly after she was sick brown bile. So the nurses helped me change her. After the first lot off jabs she was calm for about half an hour. Nurse said we had short days left.She couldn't speak, or swollow. I was told syringe driver would be with us in 2 hours. Nothing I was ringing nurses n docs couldnt get through then  docs rang to say they had to access  her I said we'll can't you hear her she said yes. Next thing I had the doctor, student doc n 2 distric nurses in the house trying to find paperwork from morning visit it was lost. The doc asking me if I wanted help with carers I was baffled n beside myself my mum was groaning with pain n this is what was going on I begged them to help her they did another jab she calm for about an hour then started to be sick again we sat her up she seemed unconscious her eyes white but breathing we tried our best to help her get it out but I didn't stop I was trying to call nurse docs again nothing so rang an ambulance. The paramedic couldn't see from notes what she had had in jabs so just gave us a sucker to help remove vomit from mouth. Then nurses showed up. I has put mum on her side as the vomit was contiuouse she looked so uncomfortable I didn't know what to do. The nurses did nothing. But laugh with the paramedic. Again I was beside myself holding my mums head with my brother sucking vomit from her mouth asking why is she being sick getting no answers. Eventually he breathing changed n I realised n so did my brother so we tried to say our goodbye. Then I asked a nurse to please help us get her comfortable then she went. It was horrid I was so relieved after the ordeal but now I can't stop asking questions why everything was done wrong for my mum even on the day she died. Even hospice lady was due to come to us the day after she died. I feel completely cheated n have so much hate for all the medical staff who dealt with her. She was the most caring selfless person iv ever know. She did not diserve he treatment she recived from the incompitent staff at every NHS venue she felt with. I cant get the struggle off pain agitation restless Ness and vomit out off my mind. My poor poor mum.

I'm so so terribly sorry to hear what you have been through with your mum. My mum passed away after an 8 month battle with lung and liver cancer which was horrendous - I had mixed experiences with NHS staff but sometimes I couldn't believe the way she (and I) were being treated and how hard we had to fight for her dignity - confronted by sometimes callous or just incompetent staff. Some of her hospital (and home) experiences were living nightmares frankly - they still haunt me. Many services who should have been there for her just weren't, and it's clear we no longer have a remotely functional NHS. My mum was a retired NHS child psychiatrist who fought so hard for her patients, saved so many children and gave her whole life to others. I am now being told I have PTSD from the experience - anxiety, flashbacks, difficulty controlling emotions, insomnia, memory loss etc. I'm normally a completely stable person, so these symptoms are very new for me and it's difficult to stay functional.

You mum is at peace now at least. I'm sure she woulnd't have wanted to you to be consumed by the ordeal, but I know it's hard to live with the sense of injustice, and it can be worrying that it might happen again with another loved one. I hope you are recovering from the horror of it and managing to embrace life. I'm sure she would have wanted that.

So sorry to hear about what you have went through I watched my partner of 25 years pass away after 6 weeks of being diagnosed of cancer.  And In the end she was in a hospice.  At the very last stages she cried out and did not pass peacefully so I relive that moment so often. I had to have counselling it does get easier but never gives away