End of life - the question no one can answer but here goes.

[PurpleFlower1983]

My 94 year old grandmother was released from hospital to her care home on end of life care 8 days ago. She has emphysema and heart failure. She is now staying in bed all day except to be helped to the commode by two carers. She is drinking very little and is maybe eating one or two mouthfuls of food per day. She is allowed up to 15mg of oxycodone per day as required but has 1.5mg morning and night regularly to help with breathing.

On Sunday she began confusing her words and struggling to get sentences out, her oxygen was in the low 80s so from Tuesday she has been on 1 litre of oxygen. I have spent a lot of time with her, she is aware but dozing in and out of sleep. Her breathing seems quite laboured but no rattle etc and it’s regular.

Does anyone have any experience of this kind of decline? The nurses said it could be days or weeks but she has gone so downhill cognitively in the last few days. Thank you

My grandma was in this situation and died within 24 hours of the drifting in and out of consciousness started.

Stopping eating completely and sleeping more and more can be signs to look out for. It’s really hard. A doctor said to us “the body doesn’t like to let go of life”.

Whilst the carers are still getting her up to the commode, she’s fine. They will catheterise her or use pads when she’s nearing the end. If she requires more pain relief they will introduce a morphine driver, which again is another indication of her being close to the end,

My DM had a seizure on the Saturday morning and was put to bed. She was minimally responsive to us for the next couple of days but after that was asleep 24/7. On the Friday we were told that she was end of life and they ordered the meds from the GP - morphine, sedative, anti-emetic and something to soothe the rattle in her throat when the time came.

There was no change the next day but on the Sunday even as we were approaching her room we could hear the rattle. We sat with her for a while as the rattle got worse with nurses and carers coming in every 10 minutes or so. By the time we decided that it would be good for her to maybe have some relief before the nurse came in she made one last sound and went quiet. It was another half hour before her heart stopped beating. All in all it was just over a week.

My grandma went on like that for 3 weeks I’m afraid! No food no water, some drugs. Healthy until she had a fall then stroke; or stroke then fall, not sure. Wishing a peaceful passing for your grandmother 💐

My relative was 7 days no food or water or drip

When my nanna was out on end of life, she was in a care home with dementia, she passed within 24 hours: I’m sorry there is no answer to this and it’s horrific to go through, sending my thoughts to you

Actual end of life pathway is quite a formal thing. My stepfather was discharged from hospital back to his care home on an EOL discharge last October. I had a meeting with the doctor who completed the appropriate paperwork - meds to be prescribed if needed, contact with the GP, paperwork for the care home.
All treatment was withdrawn - no oxygen, no food, no fluids. He was asleep for a further 6 days and eventually died peacefully. Once he returned to his care home, he no longer had to pay fees as CHC funding was fast tracked by the hospital discharge team.
For some, end of life care can be days, weeks or months so the actual process is specific to their situation.

I’m a palliative care nurse specialist, it sounds as if she is slowly deteriorating and yes it could go on for a few weeks.
she will just sleep more and not want food or fluids. Try not to worry about this as it’s natural as someone approaches end of life - their body can not manage food and fluids in the same way.
if she needs cytosine regularly then once she is unable to swallow she wi have a syringe driver containing it and any other medication that she may need.
sending you love x

Thank you all so much, they have withdrawn all other meds and she does seem to be just slowly declining now. I know there is no definite answer but your words are comforting. I feel like I’ve read everything there is to read online.

They have said the oxygen is for comfort now rather than anything else.

I think the biggest thing for me has been the confusion, her body had failed her over the last 3 years but her mind was always still sharp. I think she still is still ‘all there’ but the confusion and inability to speak properly has come as a shock.

So sorry you’re in this position OP.
I was there a couple of years back and like you wanted to know what to expect, and basically it’s like having a baby - no one can tell you!
My relative started Cheyenne Stokes breathing, everything I read said that was days left, but she’d breathe like that for 4 or 5 days then stop, and then it’d start again a week later. She was also dying of heart failure and extreme old age.

I’d say if she’s still using a commode, you’re not quite last few days yet.
My relative lived about 6/7 weeks when they stopped regular meds and she became totally bed bound. Sleeping pretty much all the time, but some pretty wild hallucinations when she was awake!

The one thing I do remember reading that was correct in our case was that the Nasolabial lines - the crease from your nose to the corners of your mouth, will become much less prominent/disappear in the final few days/hours.
Look after yourself. X

This might be helpful.

https://www.hospiceuk.org/information-and-support/death-and-dying-what-expect/last-few-days

That could be a result of her lower oxygen level.

Is she still eating and drinking? Then it could be weeks.

So sorry you are facing this it’s such a tough time. For eol care my mum was 42hrs my dad 5 weeks. It’s so variable and u know at this stage all you want to know is “how long”. From the 2 experiences I have had nobody can really predict it those about to pass can surprise you and the medical experts. Take care

My mum was similar and lasted about 6 more days. Think of you.

An aunt was similar, and sleeping for most of the time. After the umpteenth UTI (she’d always been prone to them) she was refusing food and drink (though they were still offered) and since it was only going to happen again quite soon, it was deemed pointless to send her to hospital for drips etc.
She was in her late 80s with dementia, so I’m sure it was the kindest thing.

She is eating a few mouthfuls now and seems to have upped her drinking a little now too. She is still confused but seems to have stabilised over the last few days.

Her new normal now seems to be staying in bed dozing most of the day. She is conscious fully I think but more confused/forgetful, presumably due to the oxygen. It was such a decline last week that I think I assumed it would continue on that trajectory but she does seem to have settled into a new stable condition now.

We are going through this with my 97 yo FIL. He's still alert though sleeping a lot but still eating and drinking a little. He's so breathless with the heart failure and no drugs work. We thought we were going to lose him early last week. But he's rallied. Bed bound so can't come home as it just wouldn't work.
I was chatting to a care of the elderly consultant who said 97 year olds can be fairly indestructible. So I imagine 94 year olds are similar! It's hard watching them. I think could be a few weeks for us so we still intend to go on holiday next week. He's in hospital so well cared for.

Thank you for posting this. Someone also said this to me, if you can get into your 90s then you’re generally made of pretty strong stuff. We are also going on holiday as planned, it’s hard but who knows how long they will go on for!

Just to update, she seems to have stabilised into this new normal now, still staying in bed and not interested in the TV etc. but being assisted to use the commode and eating and drinking a little still. A couple of days ago her words were much better although the confusion/forgetfulness came back yesterday.