End Of Life care - how long is left?

[chronictonic]

After FIL's Funeral only a few weeks ago, my terminally ill (various cancers, discovered recently) MIL is now in End Of Life care.

She is at home, BIL & SIL have been caring for her wonderfully.
She went into End Of Care yesterday after DH got one of those scary 'it's soon' sort of calls. DH dropped everything and drove 8 hours (thanks train strikes) and thankfully made it in time.
In fact, having thought (& been told) it could be a matter of hours, she is holding up and still with us 24 hours later.
I have stayed at home with Dd9 as we didnt feel it's the environment for her and there wouldnt be anywhere else to stay.

I'm just wondering, how long? I know it's so hard say.. but what were your experiences of professional's predictions on the time line versus the reality?

I've been doing lots of research and it seems like it could be a week still... but I think DH and the others don't realise that and have taken the Dr's word for it and aren't prepared for it to last a while. I'm just concerned they will burn themselves out.

It's so hard not being there for them all. And now possibly facing Xmas without them all too. The plan had been to all go up there for Xmas as we knew it was her last and it's been such a hard and heartbreaking 3 months for everyone as they both went from OK to this in that time.

It's really hard to say, could be a few hours or it could be a few days. With my relative, we were told she was going at about 6pm, by 12am that night she had passed. Sending strength and love to you all

BIL got the call that the end was near for their aunt. He (more local) sat with her all night. She lived another 2 days and then died, without him by her side, on Christmas Day.

DGM died the night her DC got the call that it was likely to be soon.
It really is hard to say, such a difficult time for you all.

It was about 48 hours later for Fil. We were given a leaflet about what to expect and changes that would occur that would mean he was starting to fade.
Also some other things I didn't know happened when people die.
I hope it's not too long for your mil the waiting is so hard xxx

I'm so sorry, I dont think there are hard rules. We was told dh gran was at the end after a stroke. It did take a week. She went from conscious and agitated to unconscious over about three / four days. Once on the morphine driver it was obvious there was going to be no recovery. I noticed her urine was really dark on day five and her legs felt hot to the touch. That's when I knew it was hours. Very obvious that she had an infection and not possible not be in organ failure with no fluids. She was oblivious by then. It was really hard. Someone will know if it's hours if they are medical, but it's still really hard to predict. Sending you hugs x

My dad was on EOL care for 12 days. I don’t know what was keeping him going stubborn old bugger.

It was a privilege to spend the time with him, my Mum and my sisters.

Much love to you all

Hours to a week or two to be honest. Does she have any end of life symptoms? Eg confusion, rattle, loss of consciousness? She could “rally” and that sometimes gives people false hope. My grandma was in an out of consciousness for a week. FIL seemed “normal” (we knew he was terminal) a couple of hours beforehand but had suffered bouts of confusion over a few days. Hoping the journey is a smooth one for you all.

My DF had an extra week more than what they thought he would have

So sorry it’s a difficult time for you & the family. It’s so difficult to say, but no one can say for sure.

5 days for my dad. He was pretty much
unconscious the whole time, no food or water apart from the occasional ice cube on his lips the few times he seemed awake.

My siblings and I took it in turns sitting with him and the lovely nursing home staff kept us supplied with tea and biscuits. It was a very strange time- in some ways it seemed unbearably cruel and in others it was quite cathartic to have some final time with him.

So sorry your family are going through this at this time of year 💐

It is really hard to estimate without seeing the person, ( and even then it's hard) there are pointers, conscious state ( are they still able to communicate?, when was the last time they were able to eat and drink, what their breathing is like etc. if she has district nurses or hospice care at home they may be able to give a better picture but patients endlessly surprise us!

My dad had a massive stroke on 4/9. He also had pneumonia heart failure and his kidneys stopped working. I stayed at his bedside In Hospital until he passed away on 16/9. The palliative nurse had popped in and said she didnt expect it to be soon as his colour was good and she saw no indicating signs.
As we sat talking, his breathing slowed, and I held his hand tight talking to him. Telling him how much we loved him and what a wonderful dad he was.
He took his last breath.

The nurse was shocked. I wasn’t. I was just eternally grateful that I was with him 💔

Thank you all for sharing your stories and for your kind words.

In terms of EOL 'symptoms' :
She is 'sleeping' and is on Morphine. She is no longe eating or drinking, striggling with swallowing. Conscious but not aware who is who etc. This is what I've guaged from afar.

My Nan had two strokes within a couple of days of each other and basically lost all use of her body.

She was in hospital just breathing, couldn’t talk, move, eat or drink. Nurses had to keep turning her to stop sores developing. We decided to put her pain relief and let her go as she couldn’t do anything, had dementia & liver cancer.

When we decided to go pain relief only, nurses said it could take up to 7 days and my Nan passed away after 5 days.

So sorry your going through this so close to christmas.

I'm so sorry but it's really variable. I've had one younger person be at least a week at that stage. The other, in their 50s, was several days.

I'm sorry that we can't alleviate your worry but it could be minutes, hours, days or even weeks in some cases (it sounds unlikely in this instance). The waiting is awful but that and being as flexible as possible is all anyone can do.

No fixed time as everyone is different

Been through it twice, both my parents but the care they both had at EOL, I could not fault

It was a case of a waiting game, knew the end was near for my Mum as the Morphine Auto Syringe had upped its tempo 😔

Take it one day at a time or hour by hour, whatever is best for you 😔

I found this helpful guardianangelhospice.com/medical/the-last-few-days/#1081

Thank you, this is really helpful. I've come across quite a few different versions of this but this one is really well worded and comprehensive.

Thanks everyone for your support. It feels so hard to not be there, and trying to offer support over the phone to DH at such a time is so hard.
I know the best support I can give him is just looking after our DD and home and making sure he has nothing else to worry about or on his mind at this time.

posting my experience in case of help. My mother had a stroke last Saturday morning, which left her unable to swallow. she pulled out the NG feeding tube the hospital put in
We got the call on Monday morning to go to the hospital as her breathing was becoming erratic. A doctor that same day told us hours/days left
she died on Wednesday morning

My OH (not married or living together) died early November - his brothers listed themselves as next of kin and got a call on the Friday afternoon that he was on EOL care after being admitted a week earlier for an infection of some sorts. Was responding to antibiotics then went downhill, I got there 7,30am Saturday morning and he took his last breath at 11am. No one expected him to die that quickly but it was very peaceful and im blessed that i was able to be with him x

Sadly I went through this with both parents. My dad was over a week even with no food or water. My mum was over two weeks from getting that 3am phone call from the hospital telling me she had hours. However she did rally and sat up and had eggs on toast after a week of being nil by mouth. 🤷‍♀️

hope things are as peaceful as possible.