Timeliness of end of life.

[Menopausalmum43]

I've got another thread on here as my mother in law is at end of life but this is just a question as I'm watching her cling on to life by a thread and it's breaking my heart. She has been discharged and is at home. She has s syringe driver and is on oxygen. She has had no food or water for three days. Definite deterioration since yesterday but still here. We are here 24 hours as day in a shift one of us at home with our kiddo. I just don't have any idea how long this takes. Its awful we don't want her to die alone but sustaining this level of vigilance is hard and watching her slip away. If you have done the last hurdle with a relative would you mind telling me how log this part took your loved one.

That was meant to read "timelines" not timeliness it won't let me edit the headline.

@Menopausalmum43 thank you for your update, sorry you are still waiting. Just a couple of things to note, patients will become restless between 3:00 - 6:00am, more upsetting for you than them. And when people die, you think it is all over and done with, and about 60 - 90 secs later, they may give a loud exhalation, which is when you think actually they are still with you but it is merely the air leaving their lungs (a bit like a balloon going down), it is really disconcerting if no one tells you it may happen. Still thinking of you and your family.

Even when people lose the power of speech there can be communication. Holding a hand is a form of communication as is stroking hair.

My mother in law stopped eating and two days later she passed in hospice. Sorry if it sounds blunt, but We knew she’d pass that day as she was unresponsive lying there with her mouth wide open and her eyes closed. The nurses called the family to come as they knew. She passed within hours.

My parent was 3 days. I'm surprised at how long people are surviving without liquid as I assumed my parent actually died of dehydration rather than the cancer.

I think from what i've heard of palliative care nurses, many people just want to die alone and people hanging around all the time just prolongs the process.

My Gran died two weeks ago after a few weeks on end of life care in a care home. She only moved in there in January after a hip fracture and few weeks in hospital.

She was 92, had spent the last 3 months telling everyone she didn't know why she was still here and wanted to go. She was restricting her food and fluids.

She was semi-concious up until the day before she died. All of her 4 children and numerous GC were in and out, she died with one of her DC there but that was only because that DC refused to leave and was being a twat to be honest.

In and out of lucidity for the 3 weeks before that. Some days talking normally, others saying some words with her eyes closed, other days, not responding at all.

A friend was in a similar situation a year ago and the family spent two weeks by the bedside with her saying nothing at all.

Another family I know from a different culture, their Mum had always been at home and they were all gathered at her bedside for 'the end' 10 months before she actually died. At the end she weighed 5 stone, hadn't spoken for months but seemed to respond to family around her. when she died, only a few members were there in comparison to the multitude that had been there before.

It really depends.

But don't fear someone dying alone. Or thinking that shouldn't happen. It really doesn't matter and families put undue stress on themselves wanting to be there. Death is part of life and love is love. You don;t have to be there at the last breath for the person to know they were loved, often, they don;t want you to be.

She is the kind of person who was happy in her own company but very anxious, she went mad when I had to go home when she was in a and e because I had to get home to my son. She asked us to stay eith her if she was dying and of course i said id try. Ironically my husband was caring for my uncle who died this morning! You couldn't write it.
She is still with us, skin has changed on her hands, knees and feet. She keeps trying to cough. Sunday will be day 5. I'm hoping she goes tonight 🙏

My Dad hadn't had any food or drink for nearly 3 weeks, went onto the syringe driver on the Monday morning and died late Friday afternoon. I'd sat there nearly all week, and was with him Friday when I thought I'll take a break and go get some lunch. I kissed his forehead as I left, and told him that while I would miss him forever, he was OK to leave and that although I'd struggle, I'd manage without him. The contrary old bugger died less than 10 minutes after I'd left, his colour and breathing were unchanged from days before.

It's draining. Take breaks when you can.

@Wakemeupbe4yougogo so so sorry for your loss. Sending 🫂🙏❤️

@Menopausalmum43 so sorry you are still waiting. Sending 🫂🙏❤️

Thanks:)

I've been here from 8 this morning husband did the night shift. Leaving at about 6 to have our tea together and then back till 12. Husband ill take over at that point. I'm up for work as I can't afford to use any more time. 😪 . It's horrible I could cry. I'm tired and irritated just want this to all be over.

Hugs OP. Been there 3 times, once during covid. It's the hardest thing.

Can't imagine what is was like in covid, I've watched people die but not sat bedside for this length of time before. When is been my family we've just done a few hours each. My husband has family too but they don't do anything. I can understand that people fins it hard to deal with death and dying but I'm in he camp that the dying persons need are paramount and people need to just get a grip. They've got a life time to deal with the trauma, the dying person has hours left to live. They've all come up with excuses, work childcare, not feeling to well. My argument is that I've got work, I have childcare, there is just us and I can pretty much guarantee that she feels a damn sight worse than they do. I know hate is a string words but I hate them right now.

Not only was visiting strictly limited but mum has alzheimer's and didn't understand what was happening. Luckily for us the ward clerk employed some common sense and empathy that helped a lot. Strictly it was the same 2 people every day only but I have 2 siblings. Clerk put us all down as mum's carers so we could all go and say goodbye to dad. But we could only go for an hour a day or mum got too distressed.

i am so sorry to hear this. went through similar last year. we were very quiet around the bed. we spent 15 min talking and reminiscing - telling stories she loved to tell or hear and she passed while we talking. it was all about her parents and country of origin.

heartbreaking but i like to think she enjoyed listening and slipped off x

I wouldn't mind it so much if we could sit around her and share memories but it's very long hours of silence interrupted only by equipment to help her to breathe and gasps as she stops then starts.

@Menopausalmum43 it feels like the longest wait. Sending 🫂🙏❤️💐 here if you want to talk x

Yep. Every minute feels like 10 and you are hoping the end is quick but you don't want it to happen at all.

I've been through this recently, sending you lots of love.

@countrygirl99 yep been there many times. You want it to end but at the same time....

When my MIL died at home, I just felt huge relief when she finally died. There were plenty of family members in the house, but she actually died in the presence of the carer who had come in to wash etc her.
I couldn't make any decisions for her, because she had 3 sons and it wasn't up to me.
But it confirmed to me that, when it's my time to die, I 1) definitely don't want to be at home and 2) definitely don't want any friends or family sitting by my bed. I thought it was barbaric, particularly for the dying person. Leave me in the hands of the professionals.
So, OP, I think it's OK to give yourselves permission to step away.

My father had pancreatic cancer and was skeletal and was on the pump for about 5 days before he died. He was however helped by our gp who administered some pain relief drugs which had the side effect of stopping your heart. He had previously metabolised a previous drug . I am forever grateful to him. This is why we need assisted death in this country !

I know it may sound silly, have you told her it’s okay for her to go?

Its not silly, my mum and nan told my grandad it was ok to go and shortly after they left, he passed.

I think its common for people to wait for loved ones to go before passing, I think i be the same as wouldn't like a scene lol.

my mum had end stage dementia and had a serious seizure. She was in a nursing home and the staff told me she would have another fit and then pass away that night. She lasted 3 months. It was grim. In the last few days I told her it was ok to go. I read to her in the last few days, she would listen and drift off to sleep. She was agitated at times but hearing my voice she seemed to calm down. It seemed better than just holding her hand and watching her breathe.