End of life - A handhold and experiences please

[WhenRobinsAreNear]

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

Im so pleased your mum finally had the care she needs. You must be exhausted, you have spent such a long time battling for this.

I hope you are able to get some rest now, knowing that your mum is more comfortable.

I'm so pleased she's more comfortable now. Thank you for taking time to update us when you must be utterly exhausted. Massively well done.

Oh that must be such a relief. God it took a bloody fight to get that to happen, but you will always know you did your very best for her. What are your thoughts now regarding residential care?

In a predicatable turn of events because nothing is ever simple.
Yesterday I popped in to hear the alarm on the syringe driver going off, braced myself and went to check it. She was so unrousable but her head was lifting on and off the pillow and she was so clearly unconfortsble. I rang the DNs straight away and they got out in less than an hour which was great and the Nurse who came was fantastic. Explained that there was a lot of irritation around the site and because she's effectively got nothing on her there's a change it had stopped working as there's no fat to go into. Basically we needed to move it to a different arm. He went in to see her and saw her discomfort, read the notes the carers have been leaving since it was put in (she's still been in pain even with this) he upped the doses of morphine and midazolam and gave her small doses of both until the driver was up and running. She was the most peaceful I've ever seen.
Then the exact same thing happened again about 4 hours later....
Im so so sad, why is her journey to comfort so difficult

I'm so sorry to read about this - unfortunately the needle has to go into fat, so if your mum is very thin this can prove difficult.

Just ring the nurses every time the alarm goes off. I know that isn't much comfort and I appreciate you've been through so much to get to this point, but you haven't got much choice.

At least she got the dose increased. That isn't much help to you if the thing keeps alarming though.

This has been such a nightmare for you.

Sadly it sounds as if her situation is now such that it needs frequent review and specialist management. I think it may be too much to hope that the DN team is able to provide this. Is a hospice bed out of the question?

Id say she's a maximum of 35kg now and that's probably being generous. Still haven't had any movement with anyone sitting with her over night so my biggest worry is that she does it then. She had only been alone 2 hours the first time and the discomfort was very noticeable. Dn considered putting it in her leg but that's the source of her pain mostly so we were reluctant to do that. Just trial and error

Placing a tiny needle under the skin in her leg is probably a very good idea actually.
It's such a little needle. Have your seen one? Patients don't even notice them being inserted in my experience.

Sending 🤗

I’m so sorry that the care your lovely GM has been receiving has been sub-optimal (generous description). I think a hospice would be better for her. Her pain would be more carefully monitored and she would have people around her at all times.
Just so you know if I was her, I would be honoured to have a lovely, caring GD like you.

Thankyou all I will try in a bit to reply to you individually but wanted to give a quick update.

It's definitley become very apparent as many of you have said that she needs more care than she's gettingr. Her Dr tried really hard to get her into a hospice but she does not meet the criteria, for the local one and there are no Marie curie nurses available to sit with her at this time which is completely understandable. The sad decision has been made for her to move into a nursing home next week. They have on site nurses so none of this ringing the DNs out business and hoping you get ones that gives a shit, 24/7 care and it's less than a 10 minute drive if we needed to get there in an emergency. It's a heartbreaking decision but ultimately I think it's going to be the best on the long run.

I am however a little concerned thay we might not get to Monday. I've visited a few times today and her room has felt awfully strong, at first I thought it was urine but after kissing her goodbye for the day earlier and realising her cheek smelt the same I am not so sure.

I can't really type my experience but just remember however you feel it's normal and natural and don't worry. When this was my mum I had the craziest thoughts, and thought I was going a bit crazy but it all passes in time 💐 xx

I’m a DN and hope I can answer some of the questions posed on this thread.
Firstly the communication from that team sounds appalling and I would definitely raise that issue when you feel up to it.
In end of life care a GP may suggest a syringe driver but as they don’t manage them they don’t usually understand the process.
If a patient is still taking oral fluids/diet/medication it’s usually not appropriate to commence a driver as there is no need-the medication is able to be taken orally, a syringe driver will give the same medication (or a similar alternative )just via a different route.
When a patient is in the community the DN can only respond to the call when they receive it, they may plan a visit but then be held up at another call, receive an emergency call etc. the same as a care agency so even a planned joint visit can not marry up.
With your nan being by herself for long periods it wouldn’t be recommended for a driver do to no one being around should something go wrong with the driver or an adverse reaction to a drug. For example if the patches/oral meds were to be stopped and a driver commenced at 5pm and your nan knocked the driver out at 8pm she would have zero pain relief until her breakfast call the next day.
Lastly a DN can only administer medication on what they see during their visit, there lane something called spontaneous pain in which case a driver is not recommended as it doesn’t treat it effectively.
hope your nan has a peaceful passing 🌺

@WhenRobinsAreNear you think she's not going to make it another week?
You may well be right.
Is she drinking anything at all?
If you think she's about to die in a couple of days, perhaps you need to arrange for members of the family to stay with her 24/7 now.

There's definitley been some apalling stuff you're right. And that has overshadowed a lot of the rest of it. I one hundred percent appreciate what you're saying and I have said it time and time again, I know you can only go on what you see, it's just heartbreaking and frustrating that things haven't always lined up for her to have some help. There never appears to be a solid answer. We've tried so many patches, oramorph she can't take enough of because she doesn't drink enough in general to take affect and it didnt work anyway. But we are having to repeat ourselves constantly. Yes she needs to be in a home with constant care. We tried to keep her home too long. My biggest worry is her being woyjooy pain relief over night but theres nothing I can physically do, I've got a young baby who I can't leave at night and would be so inappropriate to take them with me and have them there overnight too. No one else is willing to do it in the family either. So I'm stuck

Still drinking, probably 400ml in 24 hours, still taking bits of custard here and there. She's been much more thirsty today though drank the most she has in the last 2 months but her level of consciousness is massively decreased. So hard to know

I'm so sorry it's this hard.

From what you say it does sound as if she may not have much longer.

I'm sorry the rest of the family aren't able to help. I hesitate to make this suggestion as I don't have children, but if the family really really can't step up, perhaps you could reconsider why you feel it's inappropriate for you to take your baby with you overnight? Or perhaps they might step up if they know you are seriously considering this? It might be time to be frank with them about the time you think she might have left.

FWIW I completely agree with @Fraaahnces , you have been and are being the most amazing granddaughter.

Holding you and your lovely nan in my thoughts.

Is there no room for the baby there?
If your grandmother dies overnight when nobody is with her, you'll feel beyond awful.

@TheShellBeach @MontyDonsBlueScarf
Theres one more care call still to happen tonight before I rush to any decisions.
Technically yes there's room for me to take baby but nowhere proper for them to sleep.
I have expressed my concerns and they are dealing with if in different ways. I think they would prefer to not be there and just find out after the fact whereas me and my cousin would both prefer to be there however we both have children to conside, we've been doing everything in the day that we can.
When I say we are all burnt out and exhausted it's and understatement we all have nothing left in the tank. We should have made the care home decision sooner because now it is there fear she won't make it. Everyone keeps not believing that it's as close as it is and doesn't seem to be listening or seeing the severity even though I've told them everything I've said here and more.

This is a terrible nightmare for you.
What about your dad?
Won't be be able to stay?

There's nothing stopping him.
Other than the fact he doesn't want to. It's been really hard. From the outside thay makes him look like he doesn't care but he does. He's just not able to do it. It's too much for him. And he's so burnt out. He's been dealing with everything for her for 3 years straight. Then I'm full of desperation and upset because I want him to do it but understand why he feels he can't then I want to but I physically can't. We've been at each other's throats the last few days because of it too. I can't do it all and I know he can't do it all but it not being split equally currently.

Being with her 24/7 is not the same thing as making sure she's getting the best possible care. Many people pass when the family leaves the room for a few minutes, almost as if it's something they need to do alone.

My DH's great aunt was palliative. In a care home. Her sister went every day and great aunt kept hanging on. One of the carers told grandma to go, as maybe sister didn't want to cross over.

Understandably, grandma didn't want this to happen.

So she stood up, put her coat on. Said goodbye to her sister, told her she'd be back later. Carer wished grandma goodbye very loudly and made a racket opening and closing bedroom door. Turned lights off.

Very, very quietly, grandma sat down with her coat on. Said nothing. Sat in the dark.

10 minutes later, her sister passed very peacefully.

Bloody men are useless and this side of “woman’s work” is utterly thankless. I’m sorry you don’t have more support.
I don’t know if you are in the UK… I am not. I do know that you should email your local MP, PALS and/or ombudsman (equivalent) about the shitty communication and lack of care your DGM is receiving. I’m a nurse and utterly gobsmacked by the DN’s refusal to follow Dr’s orders and properly palliative your DGM.

*palliate - stupid autocorrect