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

Oh op I am so sorry.

I lost my mil 2 weeks ago and she had the surge then 4 days later passed away.

We couldn't take her home from the hospital. There's no space in our home and fil felt he couldn't cope. We were also told that if she needed top up pain relief at home then someone would need to call the hospice nurse who could take up to 1.5 hours to come to give the meds and they couldn't come out repeatedly so we managed to get her into hospice where she was really peaceful until she slipped away.

💐
I'm so sorry you've been through this.
It sounds like a hospice was the best place for your mil, not everyone can manage this at home and after the fight we have had I'm glad you didn't go through that.
She's very much the same this morning, sleepy, won't drink, just wants to sleep. My brain is saying we won't see the week out,but I just can't judge it. She did one day where she didn't eat or drink at all then started again. I really hope she doesn't do that again as awful as it sounds, she's just prolonging her pain.
I keep telling my grandad he needs to come and get her now (he passed when I was 5).
Ive been reading a beautiful book call The in between, it's from a hospice nurse talking about her patients at the end. It's beautiful, doesn't sugar coat but there's lots of experiences of the surge and then it isn't long at all. I would say I'm prepared but I don't think you ever truly are 💐

Afternoon Robin - you have my huge sympathies. I'm currently sitting next to DMs bed watching her fade away. She was diagnosed with stage four ovarian cancer 18 months ago. Sailed through chemo. Had radiotherapy earlier this year and never got over the post therapy fatigue. Has been in and out of hospital since. Had sepsis three times. Into a hospice, out of it, then home then now into a residential facility. Was told last Wednesday she was in kidney failure due to not eating or drinking. They said she had 3-4 days left so I thought it best to leave her in the residential facility. I cannot fault the care but it's so noisy. The woman across the corridor has the TV blaring. Another has Irish music playing full blast. The GP has said there is space for her to go back to the lovely hospice if she'd prefer to get her end of life care there. It's so peaceful and clean and they have trained nurses who can deliver pain medication when needed (although she's saying she's not in pain). But she hasn't been awake long enough today for me to ask her what to do. I'm so sorry, that was a complete brain dump but I'm struggling so much. My brother is being absolutely useless and it all seems to be left to me. So I'm here with you, I know what your experiencing, and I'm sending a hug and a handhold to you because you most definitely need it right now xxxx

KindaDefinitelyMaybe - a handhold and a hug for you as well.

I am so sorry to hear this, I've got you, I am right here for you too. We can do this 💐
I'm so sorry for what your dear DM has been through, it sounds like it has been a hard journey for you both.
It's so hard what to do for the best, is she getting the adequate care where she is?
Nan is at home and sometimes I find the silence deafening, even with TV or music in the background.
There's a book I'm reading currently, I mentioned it in one of my earlier posts, it's been helping give me comfort so much,it might be helpful for you too.
Please, if you can keep us updated, this can be your handhold thread too if you like ❤️
Thinking of you x

We are still the same as yesterday, I managed to sit with her for a little bit and hold her hand, she was so cold. I showed her pictures of my kids and she had a smile on her face. I went to go to the toilet and when I got back she was fast asleep, I kissed her cheek but she didn't even stir, normally her eyes would have flickered a little or she'd have woken up.

Hope you're OK @KindaDefinitelyMaybe thinking of you xx

Still thinking of you and your family @WhenRobinsAreNear . I hope your GM is still peaceful today. If she is still not taking any fluids then I suspect it won’t be long now. I hope the nursing staff are giving her mouth care to keep her comfortable.

Thankyou, she's taken some fluids, probably 60ml in the last 24 hours roughly.
She's sleepy but peaceful and in no pain currently,i will try and go in later but I'm working today. I can access her care notes throughout the day and her carers will ring me at any point if any major concerns.

It doesn't sound like it'll be long now.
I'm horrified by the district nurses.
I'm so sorry, OP. This shouldn't be happening.

My precious Nan died in a similar way in 2021. She was bed bound at the end and just spent most of the time sleeping peacefully. They sedated her towards the very end and the final few days were spent in hospital in her own room. I had a baby which we were unable to show her due to covid at the nursing home but the staff at the hospital let us dress in gowns and take the baby on her final day. She died that evening and myself and my mom both feel that she waited to see my baby before she left this world. She wasn’t conscious when we visited but we put the baby next to her and told her what was happening and spoke to her and told her what was happening.
I guess no one knows as to what extent people with dementia are aware of what’s going on around them as it’s such a debilitating disease and very often the sufferer is unable to communicate effectively.. but I think the important thing was to get across that we were there with her and loved her. We held her hands, stroked her hair.. made sure she had human contact as my grandad died a few years before so I personally felt that in her position was important.
In the months before she passed we spoke about the pregnancy to her and about the baby when it was born even though I visited alone/with my mom. It was very sad as the home said she needed to be managed in hospital in the very last week. It robs close ones of their beloved family member but on reflection if you can find love amongst the heart break that’s all that mattered.
Best wishes to you and your nanna xx

I keep thinking the same but she keeps proving everyone wrong, she's fighting so hard to stay. I'm dreading the moment when she isn't here anymore, I haven't really had a chance to stop and think about it, right now it's all just practicalities, making sure her pain is under control and she's as comfortable as she can be. I'm disgusted too and I really hope we don't need to call on them because I've completely lost my faith.

Have you spoken to the hospice?
I'm really sorry things are like this. It sounds really difficult.

She was definitley waiting for your baby 💐
They say the last sense to go is hearing, she heard it all I truly believe that, and she was comforted by you and your mums love for her and happy to finally meet your little one even if she couldn't tell you that herself. She knew your baby was so loved and she could go in peace. I'm so sorry you are without your nana ❤️

So the irony today is it appears I can't get a hospice referall without the district nurses reffering her... I'm sure we can sense how that might go. I am going to try tomorrow to see if I get anywhere

I'm so sorry @WhenRobinsAreNear , it's such a hard thing to watch your loved ones pass away. My DM had dementia but it was a physical illness that took her, sadly she wasn't really awake at any time on her last day but I know she could hear me. My DB had passed away years before and I told her I'd be OK and she should go and look for him, within ten minutes she'd started to change and passed away. Your DM knows you're there, she knows you love her. I hope she'll pass away peacefully

Morning Robin - can you speak to a district nurse? I managed to get hold of mine yesterday after going through the community MacMillan nurse. She came to see DM and has started the process of her being moved to the hospice - great news. Only the home she's in have just phoned to say she's fallen out of bed and they've had to phone an ambulance as she's complaining of pain in her hip. So chances are she's going into hospital DESPITE updating her Respect form last week to say no more hospital admissions. I can't do this anymore. It's just too much...

Oh my goodness, I am so sorry. This sounds awful. Are you able to get to her? It's so hard to know what to do in this situation personally, I mentally struggle with do we treat this or that or do we focus on the comfort. Sometimes it's a minefield of emotions and you always feel like you're doing the wrong thing. I'm hoping you can't get down there and speak to a doctor who has compassion, fingers crossed you can come up with the best plan for your mum together. This was one of my hesitations of a care home because they did this to my partners grandparent, his heart stopped, they called an ambulance even though there was a DNR in place and they brought him back.. They couldn't find the paperwork and the paramedics were duty bound to try.
Nans isn't updated to home care only currently, I'm going to have to do this too I think. Sending you all of my love 💐

I'm so sorry 💐 this sounds very similar to our situation, the dementia isn't end stage but the rest of her body is giving up. When she does open her eyes it is as if she still knows who me and my dad are at the very least, I always thought this would go and maybe it still will but right now I'm going to cherish it. I'm glad your DM found peace with your DB, I hope you're doing OK x

Can you ring the hospital where the DNs are based and complain to their manager?

My dad went downhill very quick, august 2021 he was up gallivanting in London on his own at 96 with a day at Lords Cricket ground with one group of friends, followed by a dinner with a load of people he'd never met before and a night away. Thoroughly enjoyed himself after all the lockdown times. He died 19/10 (so 2 years tomorrow) from advanced pancreatic cancer which was only diagnosed 12 days before he died.
He was a pleasure to look after in his final days, he was very open in his communication so we could ask anything and he'd tell us the answer.

Very frightening to see such a rapid decline happen in front of my eyes, but I was well supported by my own family who after I moved in to look after dad came over every night to feed me and spend time with dad and one of dads friends who was a similar age to me and came and helped a huge amount. It all happened so quickly we couldn't organise help in time, but the local hospice who had really been our only support on this brief journey by checking on the phone in most days, offered dad a bed and he died there very peacefully 48 hours after he was admitted. My first experience of a hospice and it was awesome. 1 doctor, countless nurses, support staff and volunteers to 10 inpatient beds, modern en-suite rooms like a private hospital.... a beautiful place with kind gentle people on hand to make one's final journey as "easy" as possible. I can't describe how wonderful it was for dad and such a relief for me and dad that he ended up surrounded by people who knew what they were doing rather than the blind leading the blind which is how we had muddled through! He died peacefully and with dignity which is all I had wanted for him

Thanks @WhenRobinsAreNear I'm OK, my DM passed away a few years back, and although I don't think time heals all wounds, it does become a managable grief rather than the sharp pain it is at first. Once again, I hope your DM passes peacefully and that you'll find some comfort in knowing she's no longer in pain

I am sorry you are facing this. I understand the district nurses’ issues. Just a thought - could you record your gran in the times of distress to show the district nurses as they miss it during their visits? So that they can see her levels of pain and discomfort.

I hope your gran is peaceful and I hope the knowledge that you are protecting her, advocating and caring so much for her will bring you peace. 💐

That's such a good idea.
Record her when she's distressed. More than once.

I'm sure it'll help if the nurses can see her when she isn't fast asleep.

So sorry for you OP. I've been through similar recently and felt very let down at the end as the district nurses just didn't see the urgency.

It was about 3 days after she stopped swallowing consistently that she died.

The only way I got through it was deep breaths each morning and force myself to do my best to care for her when basically just wanting to hide.

Brief update

She's in pain again, district nurses have been rang at 4pm... They went to speak to the carers and are now coming out for the night care call. They have no record of the syringe driver being requested and now seem to be running around panicking and actually facilitating coming out at a care call...
The nurse on the phone even said 'I don't understand why this hasn't been done and we have done nothing'

I'll try and catch up on messages later