My beloved grandmother is reaching the end of life stage now. Advanced dementia, multiple health issues, severe weightless, Bed bound, mostly sleeping, minimum fluid intake. We always knew this was coming but the deterioration has happened so fast.
We have had such a struggle to with DNS in terms of getting her the correct pain relief, a fight at every corner and her pain is still not controlled. It's heartbreaking and draining.
I don't know how long we have but I don't think it will be very long. I have found many of the end of life stories on here comforting and helpful for preparing me for all that is to come, so if anyone would like to share their story it would be really appreciated, I'm not asking you to sugar coat it, I know the experiences vary massively.
Thankyou
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Life-limiting illness
End of life - A handhold and experiences please
WhenRobinsAreNear · 11/10/2023 21:51
My Dad died after a 6 year battle with dementia. Bed bound for 2 years. I knew in the last 2 weeks he was reaching the end. He was just different. Very hard to explain as he was non verbal. He was in a care home but I was able to visit often. The day before he died I asked the care home to call me at any moment. They said they didn't think he was quite there. But I just knew. I got my brother there to say good bye, told my dad it was on to go. He died the next morning, but I wasn't with him. Which I'm very sad about but it is what it is. I also think he chose to go when I wasn't there. I was relieved that he was no longer suffering.
I was with both my son and my mum at the end of their lives. Both times were peaceful.
My son had a brain tumour and was only 18 so it was horrific in that respect. I bought him in to the world and saw him out of it. I would not have, nor did I leave him for a second. He knew I was there. He was in an amazing hospice for the last few days and he was surrounded by family and love, so much love.
My mum was 71 and had had a stroke plus she had a myriad of other issues. She was terrified of dying and so I didn't leave her either. She passed peacefully after 11 days of little to no food. It was a shame she was in hospital but her needs were too complex to move her.
I've just had a cry writing all that. It's the hardest thing to do, to say goodbye to your loved ones. But if you can be by their side I believe they know it.
I had the chance each time to say all that I needed to. To tell each of them how much I loved them.
It was different with my son as he was only 18 but my mum and dad had both lived full lives so there was a comfort of sorts with that.
I wish your grandmother a peaceful end to her life's journey. Tell her everything you need to do that in the case you are not with her you know you said what you wanted.
Bluetrue · 12/10/2023 18:08
Hi OP
So sorry you haven't had any replies, I think many people are replying to the concerning events in the Middle East.
In my experience, end of life for my family member was very very difficult and the hardest thing I had to do was say good bye, knowing I would never see my family member again. But he was in so much pain and didn't want to live because he was in so much pain. We were devastated but accepted that he went to a better place. We miss him everyday and are thankful of the legacy he left.
All the best OP.
happyharpy78 · 12/10/2023 18:24
Hi OP
I lost my lovely mum a couple of months ago. The end of life stage for us lasted nine days from when doctors prescribed the morphine driver. For the most part she was unconscious and in no pain, though we did have a precious very brief spell of consciousness about three days in. If she became agitated the palliative team were quick to react and adjust the driver. A couple of hours before the end her breathing changed and despite having no prior knowledge we did know it was time. Finally she took a breath then gave a small sigh and was at peace. We played some of her favourite music during this time. It's a very strange feeling when the end comes as you have been waiting for it. Obviously there were lots of tears but I am grateful we had this time with her. It wasn't as bad as I expected it to be as she had been very ill for a while and though a cliche it was a release. My thoughts are with you OP. ❤️
minmooch · 12/10/2023 18:29
My Dad died after a 6 year battle with dementia. Bed bound for 2 years. I knew in the last 2 weeks he was reaching the end. He was just different. Very hard to explain as he was non verbal. He was in a care home but I was able to visit often. The day before he died I asked the care home to call me at any moment. They said they didn't think he was quite there. But I just knew. I got my brother there to say good bye, told my dad it was on to go. He died the next morning, but I wasn't with him. Which I'm very sad about but it is what it is. I also think he chose to go when I wasn't there. I was relieved that he was no longer suffering.
I was with both my son and my mum at the end of their lives. Both times were peaceful.
My son had a brain tumour and was only 18 so it was horrific in that respect. I bought him in to the world and saw him out of it. I would not have, nor did I leave him for a second. He knew I was there. He was in an amazing hospice for the last few days and he was surrounded by family and love, so much love.
My mum was 71 and had had a stroke plus she had a myriad of other issues. She was terrified of dying and so I didn't leave her either. She passed peacefully after 11 days of little to no food. It was a shame she was in hospital but her needs were too complex to move her.
I've just had a cry writing all that. It's the hardest thing to do, to say goodbye to your loved ones. But if you can be by their side I believe they know it.
I had the chance each time to say all that I needed to. To tell each of them how much I loved them.
It was different with my son as he was only 18 but my mum and dad had both lived full lives so there was a comfort of sorts with that.
I wish your grandmother a peaceful end to her life's journey. Tell her everything you need to do that in the case you are not with her you know you said what you wanted.
Abfab63 · 12/10/2023 19:10
I lost my lovely Nan a month ago. She was 93 and the light of our lives. We lost her to cancer and it was fairly quick. She'd been in hospital for a week prior but managed to make it home for a couple of nights before drifting away in her sleep. I think it was only that last week she was really in a lot of pain and was then ready to go.
I will admit it's taken a while to sink in but the funeral really helped with closure. It was a lovely, albeit very emotional day.
My gosh I miss her so deeply but I just keep thinking how lucky she was. To reach that age, absolutely surrounded by love. I know she felt it to her core. She had the most wonderful carefree and full life. Knowing that has brought me a lot of comfort x
LittleHouseLily · 12/10/2023 20:15
Love and a handhold. You are doing all you can to advocate, I pray your gp finds a way to insist his patient gets appropriate pain relief.
JanglingJack · 12/10/2023 20:31
Sending you love OP
My beautiful Nan, my best friend, my everything passed over 5 years ago. I still miss her, she is never out of my thoughts and I speak to her every day.
I'd visited her on the Tuesday with my daughter who has her name as a middle name. She'd been in for a couple of months by then. Kept on the up mainly by antibiotics. Which looking back just kept her on the edge of life.
We bought her some melon pieces - just got the juice.
I hadn't planned on it being the last visit, but I knew and so did she. I said goodbye to her and as we left her hands were to her mouth and her eyes watched my little girl every step until she left the ward.
The next day my Mum an Auntie were with her and she passed peacefully.
I had a dream, it was so real - like she came to me. She told me "it's lovely here".
I believe she went feeling total peace.
My Nan was also frightened and confused. It always came when the antibiotics were wearing off or finished. She called me one night to tell me she was all alone. I was about to get childcare and go to the hospital until my Auntie took the phone and said that she was there, she'd popped out for a wee.
There is no good ending. I feel for you so much. I hope it is a peaceful ending.
Much love. X
My mother had dementia and the end of life care people lasted 6 weeks, tough old bird that she was.
@minmooch I will always remember you talking to us about your son. ❤️
to all.
That sounds very distressing for you @WhenRobinsAreNear to think that your nan is feeling pain at the end.
I lost both of my parents to end-stage dementia. With my dad, we had not realised it was 'the end' and he died peacefully in his room at the care home one morning . However, he had spent the last 6 months of his life in bed, unable to communicate and unable to eat proper food, and really it was a release .
My mum passed earlier this year. When she went into hospital I realised that she was further down the road than I had previously thought as she was struggling to swallow. She had an infection and was quite poorly in the hospital, eventually she returned to her care home on 'end of life'. The hospital had prescribed medication that the district nurse could give to make her comfortable, but she wasn't in any pain .
I think the end was peaceful for both of them, although there had been many difficult and distressing things on the way.
I hope you are able to get the care and support that you need for your nan
Mischance · 13/10/2023 13:09
Is there a local hospice nearby? You need the help of someone specialising in end of life care, not just the district nurse. There is no need for pain - we have the means to alleviate this.
When my OH was dying he was by that time in a nursing home. When there was a sudden rapid deterioration in his condition and as soon as the decision was made to not take him into hospital for aggressive life-saving treatment, the doctor ordered an "End-of-life Care pack" which was delivered to the nursing home. As well as other stuff this contained adequate means of pain relief and midazolam which is a sedative and can be given subcutaneously - at the first sign of restlessness or distress he was given this and he slipped quietly away with the minimum of distress.
You should not be in the situation where you have to call the district nurse when she is in pain, then wait for them to come. The means to relieve her pain should be on the spot. A specialist end of life professional could help you with this. It really is worth speaking to the nearest hospice about this. And the GP - tell him her pain is not being adequately dealt with.
I am sorry you are in this sad situation and having to fight for help. That is wrong.
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