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Original poster

End of life - A handhold and experiences please

202 replies

WhenRobinsAreNear · 11/10/2023 21:51

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

OP posts:
Original poster
WhenRobinsAreNear · 13/10/2023 17:47

I am going to reply to those I haven't replied to in a little bit I promise I'm just a little emotional at the latest update.

Lunchtime call she was so confused, didn't know who the carers were and kept trying to pay them.

Tea time call she was talking in full sentences, the most lucid I've seen her in months. She thanked me for coming and gave me a kiss, I gave her a kiss and told her I loved her and left. I know i should have stayed and enjoyed that longer, because it may not happen again but I was just so freaked out. I've read a lot about the surge before the end and I couldn't get it out of my head that this is what that is. I've been called in to speak to the Dr and they are in disbelief about the resilliance from the district nurses. A syringe driver has be requested by the gp twice and denied each time because when they go out she is asleep and comfortable.
I am going to look into hospice at home care tonight and if it comes to it maybe it's even possible to hire a private nurse that will actually be there at the times when she needs the injections. I don't know, I just know it shouldn't be this hard.
The change in behaviour so rapidly has massively concerned me but oddly she wasn't in pain for once, I wonder if this means something? I can't see how the pain patches that haven't been working have suddenly started to work but I'm not a medical professional so who knows maybe I can stop fighting for pain relief.

OP posts:
Mischance · 13/10/2023 21:10

This is exactly what happened with my OH. His neurological illness had left him with nil mobility and confusion with the most dreadful paranoia .... he thought he was being chopped up and put down a sewer.
Several days after we decided not to treat his pneumonia but to let him slip away in peace ... he had drunk nothing for days and there was no turning back ... he suddenly became totally lucid. I fed him some trifle bit by bit, he told us he loved us, he asked to hear music he loved ..... etc. We were gutted and thought we had made the wring decision .... it was utterly bizarre.
I know what a shock this is when this happens and it really messes with your head, but how wonderful that you had the chance to tell her you loved her, and to feel that she understood you.
My heart is with you. I hope you can find a way of sorting the pain relief and I am so sorry that it is proving so hard.

Original poster
WhenRobinsAreNear · 13/10/2023 22:00

Mischance · 13/10/2023 21:10

This is exactly what happened with my OH. His neurological illness had left him with nil mobility and confusion with the most dreadful paranoia .... he thought he was being chopped up and put down a sewer.
Several days after we decided not to treat his pneumonia but to let him slip away in peace ... he had drunk nothing for days and there was no turning back ... he suddenly became totally lucid. I fed him some trifle bit by bit, he told us he loved us, he asked to hear music he loved ..... etc. We were gutted and thought we had made the wring decision .... it was utterly bizarre.
I know what a shock this is when this happens and it really messes with your head, but how wonderful that you had the chance to tell her you loved her, and to feel that she understood you.
My heart is with you. I hope you can find a way of sorting the pain relief and I am so sorry that it is proving so hard.

It's such a bizarre phenomenon, I can't quite get my head around it. I mean it might not be that but it seems the most likely. I know some people beg for this and don't get it and my heart hurts for them. It was a beautiful moment because until today I can't remember the last time she had ever kissed my cheek, it's not really something we did. Her last care call of the night she seems to have stopped talking like she was but the good news is she wasn't in pain. That is major progress. I'm at peace with this and tonight I can sleep easy, whatever I wake to tomorrow I know she went to bed tonight pain free. She even had a bit of chocolate.

OP posts:
Mischance · 13/10/2023 22:10

I am so glad that it has brought you some peace. It must have been wonderful to see her out of pain and to be able to share those precious moments with her. Sleep well.

INTERNETEXPL0RER · 13/10/2023 22:11

@WhenRobinsAreNear I’m sorry you are going through this with your grandmother , it’s sounds like you love her very much.

You say she is very religious so she might be comforted by some readings from the holy book in her religion ( I don’t want to assume what it is ). Or some prayers or sacred music. Even though she can’t speak she might still be able to hear.

Sometimes this allows people to depart in peace 💐

Original poster
WhenRobinsAreNear · 13/10/2023 22:20

INTERNETEXPL0RER · 13/10/2023 22:11

@WhenRobinsAreNear I’m sorry you are going through this with your grandmother , it’s sounds like you love her very much.

You say she is very religious so she might be comforted by some readings from the holy book in her religion ( I don’t want to assume what it is ). Or some prayers or sacred music. Even though she can’t speak she might still be able to hear.

Sometimes this allows people to depart in peace 💐

Thankyou 💐
She can communicate a little but mostly just nods or shakes her head. Shes completely deaf in one ear so communication and understanding is hard to gauge . Her vicar did come out to say final prayers to her and she was so peaceful. Put her hands together to pray whilst I stroked her hair and half way through reached out to hold my hand for the rest of it. She was anointed with holy oil. We do leave the TV on for her as that's something she started to enjoy but some music might be nice for her too, thankyou for the suggestion. She used to get recordings from the Sunday Church service so maybe we could play that to her also 💐

OP posts:
INTERNETEXPL0RER · 13/10/2023 22:46

That’s a good idea about the recordings, especially if it’s traditional hymns that will be familiar to her from her youth. Or you can find older hymns on YouTube.

Im glad her Vicar came out to pray with her, it sounds like she found that very comforting.

PowerVandhana1986 · 13/10/2023 22:55

Good on the part one.

Original poster
WhenRobinsAreNear · 14/10/2023 09:10

Spencer0220 · 13/10/2023 13:23

OP I am so sorry for what you and your family are going through.

As PP said, I would try and contact the local hospice. They cover all sorts of conditions these days. And once they accept your nana as a patient, they will have all sorts of things to support her and you. Including a 24 hour phone line and on call nurses that can do house calls at any time.

If your nana has carers, was this put in place by social services? Even if not, it's worth talking to them. They also have lots of experience with end of life care. Particularly, ask them about talking to someone called an occupational therapist.

They will have a depth of knowledge with various different equipment and manual handling and even something simple like different moving techniques for the carers might make a difference.

If you do get taken on by the hospice, even as a home patient, they also have occupational therapists.

I hope that your nana has a peaceful and comfortable end and that you can all find the closure you need in this.

Don't be afraid to reach out for your own support.

Sending big love and hugs

Thankyou 💐
We pay privately for carers and she has two come 4 times a day. They are the most fantastic carers you could ever ask for, every single on of them, they care for much. They've been fighting to get district nurses as hard as I have and are just as upset and disgusted with the while thing too. I'll speak to them on Monday to see if we can get some more help either by being referred to the plaiiative team or hospice at home. We will do whatever we can, I don't know if you can employ private nurses, maybe someone who could be there and make their own judgement at the right times.
My anxiety is through the roof at the moment but I'm still controlling it well, I'm nearly 2 years odd medication so I'm reluctant to go down that route again, I know myself well enough to know when that time comes though and I do have fantastic support from my partner and parents, I'm not alone in this ❤️

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 09:13

TheLongGloriesOfTheWinterMoon · 13/10/2023 13:35

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. ❤️
Flowers to all.

💐 Bless her, I hope it was a comfortable and peaceful end when it came. I think we are 3 weeks in from the end of life meds being prescribed, I know there's no way to tell how long it will be, it's natural to want to know though I'm sure x

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 09:17

ShinyAppleDreamingOfTheSea · 13/10/2023 13:43

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 Flowers

Thankyou 💐
I'm so glad both of your parent were peaceful in the end, it brings the family a lot of comfort when that's the case. Dementia is an awful disease, it's like you constantly grieve them even though their body is still here, you know the person is not.
I will fight forever for the support she needs, I promise they will be sick of me and I don't care.

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 09:18

FallingStar21 · 13/10/2023 13:47

Hi OP, I don't have a personal story to share, but wanted to tell you about this book which I believe could bring a lot of comfort to both you and your nan 🙏
Written by a hospice doctor, it has many beautiful accounts of real patients' experiences at the end of their lives.

Death is But a Dream: Hope and meaning at life's end https://amzn.eu/d/4SDCRcG

Thankyou, I will have a look at this, I've been given a book very similar to this but I haven't yet found the time to pick it up which I really should 💐

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 09:21

Alonglongway · 13/10/2023 13:57

My dad died just about 12 months ago. He had dementia and had lost mobility and speech. The nursing home were brilliant about recognising he was reaching the end and very gently told us. We spent a lot of time with him the last week. He didn't open his eyes very often but sometimes did, sometimes tracked movement, seemed to smile when we played his favourite music. He had stopped eating but they offered him food and drink and there was a day middle of his last week where he ate some food and said hello to people. We told him it was ok to go. I got a call early on a Saturday morning to say it's time to come. I wasn't able to go immediately but my daughter did and stayed with him, talked to him. I then arrived and she came out to meet me and he died in the few minutes he was on his own. I don't know why that happens but I have often seen it described. It is also a huge relief to see their suffering end.

Wishing you the best.

I'm so sorry you went through this, I'm glad your dad had such a good care home. I read often how family members do choose to go when the family have stepped away for a moment, I think it's their way of protecting us that one final time, that's how I like to think of it anyway. Thankyou 💐

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 09:24

I think I've caught up and replied to everyone, if I haven't just let me know please. I don't want to miss anyone. I massively appreciate everyone reaching out with their stories and advice and I am so sorry for all of your loses 💐

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HangingOver · 14/10/2023 09:24

Hi OP, I'm sorry for your troubles. I really really hope you can get a syringe driver in place. My mother had one at the end and I didn't really understand it's purpose until I had to have a large dose of midazolam myself for an operation. After that, I was incredibly reassured that she died without fear. It's literally impossible to feel fear when you're full of that stuff. Wonderful drug to see people overt the other side. Warm and peaceful feelings only.

HangingOver · 14/10/2023 09:27

Something to expect if she does get one though...and I've heard others say the same... For us all communication stopped when the syringe driver started. DF found this incredibly hard but I was just pleased she wasn't agitated. But it's good to know that's coming because it feels like a milestone when it happens. DM just looked asleep.

Original poster
WhenRobinsAreNear · 14/10/2023 09:30

HangingOver · 14/10/2023 09:24

Hi OP, I'm sorry for your troubles. I really really hope you can get a syringe driver in place. My mother had one at the end and I didn't really understand it's purpose until I had to have a large dose of midazolam myself for an operation. After that, I was incredibly reassured that she died without fear. It's literally impossible to feel fear when you're full of that stuff. Wonderful drug to see people overt the other side. Warm and peaceful feelings only.

Thankyou 💐
I'm glad your mother had the syringe driver and was calm and peaceful. Thankyou for giving me reasurrance of how the midazolam works, it's nice to hear that's what it does, rather than from a bulshy district nurse who just focuses on the side affects and the reasons they won't do it.
I have lost all faith that we are going to meet a district nurse that does something at the correct time I really have.

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 09:33

HangingOver · 14/10/2023 09:27

Something to expect if she does get one though...and I've heard others say the same... For us all communication stopped when the syringe driver started. DF found this incredibly hard but I was just pleased she wasn't agitated. But it's good to know that's coming because it feels like a milestone when it happens. DM just looked asleep.

Thankyou, yes, I've unfortunately been through this already this year with my partners grandpa and although he didn't have a syringe driver (he should have again district nurse failing) he was given morphine and midazolam injections and his final 3 days he was completely unconscious, it can be hard to see but when they are peaceful it helps. We had district nurses then who would be called because he was agitated and by the time they came out decided he didn't need it. I hoped this wouldn't happen again

OP posts:
Original poster
WhenRobinsAreNear · 14/10/2023 17:17

I think we are definitley looking at a surge.
She keeps removing her covers and clothes even though 2 days ago she couldn't move at all. She wants to go and visit her friend. She keeps saying she wants to go home. She would like egg and chips for dinner.
This is beyond heartbreaking

OP posts:
cptartapp · 14/10/2023 17:34

I was a district nurse for many years. The service is on its knees with lack of staff, uncoordinated services and delays in treatment. And that was 15 years ago. It won't be any better.
I would never choose to die at home.
I'm so sorry for your situation.

Original poster
WhenRobinsAreNear · 14/10/2023 20:51

cptartapp · 14/10/2023 17:34

I was a district nurse for many years. The service is on its knees with lack of staff, uncoordinated services and delays in treatment. And that was 15 years ago. It won't be any better.
I would never choose to die at home.
I'm so sorry for your situation.

Thankyou 💐
I'm seriously starting to wonder if this is the best place for her but then again she wasn't like this 8 weeks ago. 5 weeks in hospital turned her into this. I know it's time constraints and tick boxes but it doesn't make it easier. Some promise the world and deliver nothing. Others just outright refuse.

OP posts:
Original poster
WhenRobinsAreNear · 15/10/2023 17:44

Back to sleepy state today 😞

OP posts:
Spencer0220 · 15/10/2023 18:01

Sending huge hugs

Original poster
WhenRobinsAreNear · 15/10/2023 20:25

Spencer0220 · 15/10/2023 18:01

Sending huge hugs

Thankyou, it's hard to know what to expect now. She's had 50ml fluid only today and is now refusing drink. Just wants to sleep.
She will go when it's her time I know.

OP posts:
INTERNETEXPL0RER · 15/10/2023 20:53

💐