Turmoil - Long post advice needed
- Thread starter fullmoon
- Start date
Just left the NH after a very long day. Mum was very restless before the driver was fitted and remained so for over two hours so a sub-cut of diamorphine was used to make her comfortable. This took over an hour to kick in. Her feet are again warm after being very cold today - the coldness had travelled up to her knee but now she seems normal again. She had been sleeping peacefully for some while before I left. It really is difficult to know whether to stay or go as I suppose anything could happen now. The staff have assured me she will be checked at least every 30 minutes and as we lived very close I am hoping I would get to her if any significant change occurs. After 14 hours today I do feel emotionally and physically tired.
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The warmth returning happened to dad also...just when I felt the end was close as his legs were cold up to his thighs...his knees warmed up..and so the wait continued. Try and get some rest...refresh..eat..before you go back. As you say it could happen at any time and even when you just nip out to the toilet. I stayed at dad's NH with him for 6 days...nipped home..and he passed away!
This forum is such a comfort, by sharing here I know I am not alone in what I am experiencing.
I am just finishing some chores before I start today’s vigil. Thank you so much for your reply x
The vigil continues. We stayed with mum until 4:30am this morning as her breathing changed a couple of times and she needed extra diamorphine in addition to her driver. We decided to go get some rest as I had been with her since 10am previous day. At 7:47am nurse was ringing to say breathing had changed so we rushed back.
Mum has had another diamorphine top up this afternoon and her driver had been repositioned to her tummy. This is Day 9 since she became ill and day three of the driver. This wretched disease just won’t let her find peace
Mum has had another diamorphine top up this afternoon and her driver had been repositioned to her tummy. This is Day 9 since she became ill and day three of the driver. This wretched disease just won’t let her find peace
Praying for continued strength to help you through this most difficult of times. Praying also for peace for your dear Mum.
Still holding your virtual hand
It will end, though it feels like forever while you are going through it.
It will end, though it feels like forever while you are going through it.
How often people said that to me over those last emergencies and it did seem as if my mother was going to defy everybody by gaining a Guinness record for survival
. I even broke down in tears at one point thinking I can't go through this again. I thought she would outlive me as I was near the edge. However one day it did all come to an end and she went very gently- for which I am extremely grateful.
The NH rang at 7.01am yesterday morning to say mum had taken a down turn. As I was opening the front door to leave the house a few minutes later the phone went again ... she passed at 7.05am.
After spending so much time with her I feel so upset not to be there particularly after the nurses account . The nurse said mum has become restless at 1.30am - jerking and twitching. I was not surprised by this as this had been happening. Apparently she administered extra diamorphine but still mum did not settle. However, what she said next is really playing on my mind - she said mum was actually pulling herself to get out of bed as well as jerking. I naturally replied, ‘but she was not awake?’. Mum had been unconscience since the Tuesday evening - the nurse replied that her eyes were open and she was . She said she then injected her with the prescribed Midazolam and mum then quietly settled again. She kept saying, ‘I feel really guilty for not ringing you’. I said she should have rang as the fact she was awake was a major change! I had told them to ring me if there was any change.
She added when mum passed at 7.05am it was really peaceful.
What I can’t get out of my head is the struggle she endured earlier and the fact she had even came around. My husband and family are cross she told me this - they are saying it would have been very distressing for me had I been there - but it is just as bad because I am visualising what she described and feeling terrible for not being there when she needed me...
After spending so much time with her I feel so upset not to be there particularly after the nurses account . The nurse said mum has become restless at 1.30am - jerking and twitching. I was not surprised by this as this had been happening. Apparently she administered extra diamorphine but still mum did not settle. However, what she said next is really playing on my mind - she said mum was actually pulling herself to get out of bed as well as jerking. I naturally replied, ‘but she was not awake?’. Mum had been unconscience since the Tuesday evening - the nurse replied that her eyes were open and she was . She said she then injected her with the prescribed Midazolam and mum then quietly settled again. She kept saying, ‘I feel really guilty for not ringing you’. I said she should have rang as the fact she was awake was a major change! I had told them to ring me if there was any change.
She added when mum passed at 7.05am it was really peaceful.
What I can’t get out of my head is the struggle she endured earlier and the fact she had even came around. My husband and family are cross she told me this - they are saying it would have been very distressing for me had I been there - but it is just as bad because I am visualising what she described and feeling terrible for not being there when she needed me...
It's a horrible time and I understand what you are going through. I won't go into details of the last two weeks of mum's life, which were appalling and distressing for everyone (physical illness not the dementia) and I could spend hours beating myself up for letting her get into that physical state before anyone realised that she was in fact ill and another few hours trying to get inside her head and see if she understood the pain she was in and why no-one could stop it. But I can't do that and, being brutal, get on with my life. What I am trying to say, no doubt badly, is that over time I am sure these feelings will fade - not go away entirely but become less. They catch me out sometimes but I am sure that they will fade in time.
The nurse did not contact you so she may be beating herself up about it, you are beating yourself up for not being there, etc. etc. All we can ever do in our lives, for anyone, is our best and I am sure that you did that.
Big hugs.
The nurse did not contact you so she may be beating herself up about it, you are beating yourself up for not being there, etc. etc. All we can ever do in our lives, for anyone, is our best and I am sure that you did that.
Big hugs.
Oh @fullmoon . Firstly my condolences to you and your family. Your dear Mum is finally at peace but you are in awful distress at not being with her when she became restless and later when she peacefully slipped away. This is so difficult. What you describe was indeed a major change and I totally understand your upset at not being with your mum. I don't believe anything I say will help but I know of many sons and daughters who, having been constantly with mum or dad, find death happens when they've popped out of the room. I know your circumstances are very different because you specifically asked to be contacted, and I think perhaps a face to face chat with the nurse might be appropriate? Could it be that your mum did not wish you to witness her passing? Your dear Mum is now at peace but instead of knowing and thinking about her suffering being over, you are tormenting yourself. I am sure your mum would not want this for you. I hope in time your pain will end. This was not your fault. God Bless your dear Mum and God Bless you. You are in my thoughts.
I’m so sorry @fullmoon condolences to you & rest in peace for your dear mum. It could be that the nurse did not think she would pass & of course as so many people have said that so many pass when their loved ones are not there so please do not feel guilty. She may have been only marginally conscious & probably not aware of anything when she stirred. You will only beat yourself up with this.
I remember when my dad passed, he had been in hospital for a week & to be honest, I’m not even sure if anyone knew he was actually dying.
The family visited him on Thursday night & he was talking, having a laugh & a joke.
I got a phone call Friday morning asking for me & my mum to get to the hospital as he had slipped into a coma & he died a few hrs later. We were by his bedside. Was it comforting to be there? Yes & no, to be honest, it haunted me for ages although it was very peaceful. It was very sad to watch him pass away in front of me & what happened afterwards is just a blur. I prefer to have remembered him as he was on the Thursday night rather than Friday morning. I hope you can see what I mean by that xx
I remember when my dad passed, he had been in hospital for a week & to be honest, I’m not even sure if anyone knew he was actually dying.
The family visited him on Thursday night & he was talking, having a laugh & a joke.
I got a phone call Friday morning asking for me & my mum to get to the hospital as he had slipped into a coma & he died a few hrs later. We were by his bedside. Was it comforting to be there? Yes & no, to be honest, it haunted me for ages although it was very peaceful. It was very sad to watch him pass away in front of me & what happened afterwards is just a blur. I prefer to have remembered him as he was on the Thursday night rather than Friday morning. I hope you can see what I mean by that xx
(((((((((((hugs)))))))))))) @fullmoon
I stayed with mum for 48 hours sleeping on the floor of her room after she had been put on a syringe driver as I desperately wanted to be with her when she passed away, but after that time I had to go home to check on OH - by the the time I got home she had passed away.
One of the older, very experienced carers said that she had seen that happen so many times - the relative who had stayed beside them popped out to go to the loo, for example, and then they passed away. She said that she thought that many of them seem to wait until their relatives had gone and they were alone and she thought they did this so that they didnt upset anyone.
I know that you, like me, wanted to be there at the end, but what is important is that you were there during her life and not whether you were there for her final seconds.
I stayed with mum for 48 hours sleeping on the floor of her room after she had been put on a syringe driver as I desperately wanted to be with her when she passed away, but after that time I had to go home to check on OH - by the the time I got home she had passed away.
One of the older, very experienced carers said that she had seen that happen so many times - the relative who had stayed beside them popped out to go to the loo, for example, and then they passed away. She said that she thought that many of them seem to wait until their relatives had gone and they were alone and she thought they did this so that they didnt upset anyone.
I know that you, like me, wanted to be there at the end, but what is important is that you were there during her life and not whether you were there for her final seconds.
I am sorry that your mum has passed and also glad for her that her torment is finished. I too missed dad's final moments where I had stayed with him for 8 days. I am not sure that this was the case with dad...he had a steely determination to do things in his own time his way...but staff also told me that often the person passes away when their loved one has left the room. Whilst the nurse described to you how your mum looked so assumed she was fully conscious and aware in reality she probably wasn't and it was unfortunate that she felt the need to tell you. Perhaps she misjudged that the final moments were sooner than she anticipated but that is perhaps understandable as dad had many moments during the previous 3 days to end of life when staff and I thought end of life was minutes away only for him to settle. You were with your mum when it mattered and gave her comfort so perhaps try to remember her peacefully in her last few days rather than dwell on what you were told.
Thank you all for your support and sharing your own personal experiences you have all helped me so so much. I will probably stay away from the forum for awhile to try and heal as at the moment everything is so raw. However, in the future I hope to be able to check in and contribute in the hope others will take some comfort from my experiences.
Wishing you all peace and happiness xx
Wishing you all peace and happiness xx
