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

This is a perfect reminder thankyou.
The level of care she needs has long moved past what we can give at home and ultimately it needs to be less about our guilt that we didn't manage to keep her at home to die and more that she's somewhere where she gets the correct care constantly.

How are you and your family today?
I keep hoping that you've been offered a hospice bed. Or a nursing home place.

OP if you look in The Lady magazine you'll find live in carers there. Will finances permit you paying someone to look after your grandmother?

Just for a few days, perhaps?
They generally charge a daily rate.

She's refused to eat or drink this morning, her morphine was upped again yesterday. Had 2 lovely district nurses, one even went out of her way to ring 111 for emergency morphine which I picked up. Syringe driver did its beeping again, was just a kink luckily.
We've been very lucky and she will be having a Marie curie nurse sit with her overnight which if she continues to not eat or drink for the rest of the day will give me massive peace of mind. There's a perfect crossover with carers so she will have someone with her constantly from 8pm tonight now ❤️
I hate that all of this fantastic help has come after the awful decision to move her to the home but I know it's still the best decision for her.

Massive congratulations to you for making this happen. Now you can let go of the responsibility and go back to being her beloved granddaughter. Much love.

So glad things are looking up. But sorry it's coming too late

Your darling GM is so lucky to have you fighting in her corner @WhenRobinsAreNear

I think we are the closest we've been now,
She needed a morphine injection in the night, her face has changed, she's yellow, her breathing was shallow for a bit. I can't believe the difference from 11pm last night to 7am this morning, forever thankful for the most amazing Marie curie nurse

Thinking of you at this time 💐

From my own experience, and I say this as gently as I can...

If she is yellow, her liver has likely stopped working.

It's a sign it won't be long, I'm afraid.

I'm so sorry OP. 🌷

It's OK don't worry, I know her being here still on Friday is unrealistic. Whenever she's ready 💐

This miserable anticipation is absolutely excruciating, but take solace in the fact that you have done everything possible for her and she would be so proud of you and how you've held everyone together. I hope you have a good support network around you for what will happen next.

And I'll also add that I was, and still am, surprised by how fast the end was. I read a lot about it, about how breathing will slow and occasionally stall, then they'll start again. DM took two big breaths, raised her shoulders, let out a tiny little cry and went. I sat waiting for the next breath but it never came!

@KindaDefinitelyMaybe oh my goodness, so glad you managed to be there. Sounds like she was very peaceful in her passing. My experience from partners grandad was that the breathing was like that for days.
We managed to get her into a nursing home today with on site nurses etc. She's peaceful and comfortable. I just went again and stroked her hair and spoke to her, she didn't open her eyes at all. She opened them once this morning and they were glazed over. I feel so much better leaving her there than I did leaving her at home, I didn't expect to feel that.

I'm so glad she got to go to the home. She will be well cared for.

Sending so much love 💜

I really hope so.
I'm really struggling tonight, feeling very lost as there's all of a sudden nothing to do, no running around fighting for this. It's completely taken care of. Yes that is wonderful but the adjustment is hard. I think I'm also full of emotions now because it is so clear she really is dying and soon, I'm the grieving relative finally. It's so bizarre. I managed a little nap earlier, trying to just keep myself strong for when the call comes to go to her. I am jusy so sad, this long drawn out dying it horrible.

It's completely natural and normal to feel this way.

Be kind to yourself.

I've been to see her today, she slept the whole time I was there until it came to me kissing her goodbye, she reached her hand out from under the covers to hold mine, then let go to try and wave, she then sighed a little. It was a beautiful moment.
Her breathing is not great but not at final stages yet, still has moments of being regular.
I've got a feeling she's just going to go, I'm not sure she will give us much warning,but if that's the case then that's how she wants it.

🤗🤗🤗

That often happens @WhenRobinsAreNear. They wait until you leave the room or go to the loo and just disappear. I’m so pleased she’s no longer in pain and is able to rest peacefully as she deserves and she recognised you and showed you that you are very loved.

I haven't had a chance to go yet today but I am meeting her vicar there later on as a bare minimum. We are going to take some more photos in and something to make the room smell a bit more like home. It's hard to know how much to do, as I don't know whay she's aware of anymore

I would take a few home comfort items in. If she does have lucid moments, she will enjoy them.

In any event, they will help the staff have some knowledge of your DGM. Even just talking about the photos might also provide comfort to her.

I used to volunteer in a hospice, and I can't tell you how helpful it was to have family photos when a parent could no longer talk. They lit up when we took an interest and it helped break the ice.

Parent = patient.

Autocorrect 🙄

You've done so well on her behalf. She's being cared for now.
I hope she has a really peaceful death.