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Mil is dying but I don't understand the process

51 replies

Knitwit101 · 06/10/2021 09:20

Please don't read if this upsets you, I'm sorry if it's insensitive. I don't know where else to post.

Mil is dying in hospital. Treatment and liquids were withdrawn on Sunday morning.

We went to see her on Sunday and she was just lying in bed, very peaceful, just like she's sleeping. But I know she's heavily sedated.
We went in on Tuesday evening, so 3 full days after treatment stopped on Sunday morning.
She just looked the same. I had thought she might look a bit worse, a bit greyer, a bit more sunken and dehydrated. But she just looked exactly the same. Hands still nice and warm, still a healthy looking colour, still breathing regularly.

What can we expect in the next few days? I've tried to ask the staff but they have been spectacularly unhelpful. I know they're busy. I asked if there was anyone who had 5 minutes to chat to our kids and answer some of their questions but they said no-one was trained in that sort of thing. She's just in a hospital admissions ward, not anywhere specialist.

So we're feeling a bit abandoned tbh. It's very strange.

We had prepared the kids as best we could for Sunday maybe being the last time they saw her, then they were able to see her again last night, I thought maybe after that she might look more upsetting and they shouldn't see her again, but last night she looked fine so maybe they could go again?

I can't square the fact that she's dying any day now with her looking so "healthy". I feel like we're putting the kids through the wringer every time we talk about it. That's 3 times now on the advice of the medical staff we've told them granny will die soon and she's still here. I guess we just stop saying that and say something a bit more vague.

I just don't understand.

Kids are 15, 13 and 10. 13 yr old doesn't want to see her or talk about it, the other 2 want to know every detail and see her every day.

OP posts:
LouLou198 · 06/10/2021 09:37

Sorry you and your family are going through this OP. It's also upsetting that nobody on the ward feels able to talk to you and your children. Lots of people die in hospital, staff should be prepared to help families through this difficult process. Most people die within a few days of fluids being withdrawn, some surprise us and can live a few days longer. When time is very short you may notice her breathing changes. It may become noisy/rattly, the staff should give drugs to alleviate this. Her extremities May feel cool to the touch, and may have a mottled appearance. She will sleep for longer periods, but may wake up briefly. It's such a difficult time, not knowing when the end will be, families often feel they are living in limbo. Hopefully she will be very settled, but if she develops any symptoms such as pain or agitation the staff should provide injectable medications to alleviate this, and may use a syringe pump that delivers medication continuously through a small needle placed just under the skin. With regards to your children, it is normal they are all coping with this in their own way. Go with what they want, if they want to visit, let them. It will help with their grieving process. Hope this helps, just ask if you I can answer any other questions Thanks

TheLongDrop · 06/10/2021 13:43

Look up stuff from Kathryn Mannix.
She's spoken on several podcasts talking about the death process and what to expect.

podcasts.apple.com/gb/podcast/griefcast/id1178572854?i=1000445756941

Her book is called 'with the end in mind' and is excellent although it might take a while to get through it.

Biggiraffe · 06/10/2021 16:05

A lot will depend on her general health prior to Sunday, if she was fit and well and had a sudden illness resulting in a poor prognosis meaning further treatment is futile , then she could survive several more days maybe as much as a week without hydration
On the other hand if it’s been a general decline of poor health over weeks/ months , she may be coming to the end of her life in a few days
Changes in breathing will indicate there isn’t much time left
My sympathies to you and your family, a very sad time
Hearing is the last sense to go , so please keep talking xx

Spiindoctor · 06/10/2021 16:23

No one warned me when DPs would actually die - I'd even made a trip away to friends when DM died as she looked so well when I left.
I think the bottom line is no one knows when it will actually happen. They can probably only narrow it down to within several days, maybe.

Maverickess · 06/10/2021 16:23

I'm sorry you and your family are going through this, it's a hard time and unfortunately there's no 'set' way people deteriorate and die, it's quite hard to call, even for someone experienced in dealing with it, I know that's really hard and the waiting is like torture.
In my experience, breathing becomes ragged and can sound harsh - as a pp said there are drugs that can be administered to alleviate this to a certain degree, along with pain and agitation. It may be that MIL is being treated with those drugs now as you say she's heavily sedated. Often things can continue a little longer while the person is sedated or on medication to alleviate the secretions because their body is now under less stress being helped with the symptoms, in these circumstances people do tend to 'slip' away, which can feel almost sudden. Other signs are a 'sunken' appearance in the face, and a mottling effect in limbs, hands and feet and possibly the end of the nose/tips of the ears.
💐 For you all.
My advice would be to tell the children that she's comfortable and not in pain or distress to although no one can accurately say when, it's not going to be very long now. Only you can decide if it's appropriate, however personally I would let them see her.

Knitwit101 · 06/10/2021 16:47

I listened to the podcast @TheLongDrop suggested above. It was so lovely. Thanks for the recommendation and all the support.

It's so tough

OP posts:
ArnoldBee · 06/10/2021 16:55

I was told for 25 years that this time your Grandma is going to die so it was difficult to believe when it actually happened. Be age appropriate with your kids that shes really poorly and they're not giving her medicine anymore and she's stopped having food and drink. She won't be coming home from hospital and it's up to them if they want to see her again?
People often look the best they have for a long time just before the end.
Winstons wish resources are often recommended on here.

TheLongDrop · 06/10/2021 17:07

I'm glad it was helpful @Knitwit101

Sending strength at this challenging time. Take care

StinkingCold · 06/10/2021 20:27

So sorry you are going through this OP. My mum died a few weeks ago. She looked 'healthy' right up til a few hours before. She was mentally aware right up til time of death. Even after she died she looked well and was warm to touch (it's not like the movies. She didn't go grey, or utter last words and pass, or go cold), and I had to see the heart rate monitor and see no pulse to truly believe she was gone. If she's having no liquid you might want to wet her brow and her lips to help her feel comfortable if the nurses allow.

(I really really hope for you that your mils death is peaceful. My mum started gasping for breath as death approached, as well as soiling herself. I found it all incredibly traumatic and can't get it out of my head. I think it was worse because she looked 'well' and was alert and so I felt she must have been terrified - though she was on loads of morphine equivalent so I was reassured she wasn't in as much distress as it appeared. I'm only saying this so you are prepared, and so that if things happen this way for you (though I hope it's.peaceful) you know you are not alone. I feel mum went before her time and her looking so well added to the distress. But appearances are deceiving and clearly your mil is unwell and my mum's body had given up even though her head and brain were very much still young and healthy. Try and get a conversation with a doctor if you can)

Knitwit101 · 06/10/2021 21:17

We've been in to see her again tonight and she looked like she was dying. Such a change from yesterday. It feels a bit more real now.

She still seems peaceful though, I hope she is.

OP posts:
olidora63 · 06/10/2021 23:38

As a nurse who cares for the dying I can only say that the main priority is that the patient is comfortable,not distressed and not in pain. It is genuinely really hard to know when the patient will finally die . I have had times when a patient has lived for many days after I really thought they would have left this world!
We had another resident who was very unwell and died within hours after my shift a few days ago . The main priority is dignity and peace .💐

Knitwit101 · 06/10/2021 23:51

Thank you for what you fo @olidora63

OP posts:
Knitwit101 · 06/10/2021 23:52

What you do even.

Heartfelt post ruined by a spelling mistake

OP posts:
olidora63 · 06/10/2021 23:56

Bless you ..I really hope that it will end peacefully for MIL ..it really is so difficult and sad for you all ..big virtual hugs 🤗💐💕

Lifeispassingby · 12/10/2021 21:43

How are things OP? Thinking of you all x

Knitwit101 · 13/10/2021 07:41

Thank you @Lifeispassingby

She's still with us, nearly 2 weeks after we were first told she was dying. 10 days since she stopped being actively treated and was moved o to end of life care. She hasn't had any food or fluids since then. It's horrid. The kids are totally confused, we're all just exhausted. Mil had a couple of days of being reasonably lucid but hasn't opened her eyes for a couple of days now. I don't know how she is still going.
I guess today or tomorrow, but we thought that this time last week.
I wish it would be over now, this is too much for all of us, and I'm guessing it's too much for her too, although she can't tell us. Maybe she's cherishing every last minute of living? Who knows.

OP posts:
TheGriffle · 13/10/2021 07:49

Oh Nitwit I’m sorry this is happening. It’s an awful awful time being in limbo. Your poor dh must be in bits.

My mil lasted around a week after she came home from hospital in end of life care. She had a tiny bit of food and drink when she was first home but refused after that. Your mil must be very strong (or stubborn!) to still be here bless her.

I hope she passes peacefully when the time is right and your dh, you and your children find comfort that you were able to be there for her.

TheGriffle · 13/10/2021 07:50

Knitwit sorry, silly autocorrect!

NameChangeWithACold · 13/10/2021 07:54

Oh I'm so sorry for you OP :( it will be soon now given lack of fluids :( please look after yourselves FlowersFlowersFlowers

JumperandJacket · 13/10/2021 07:56

Sorry you are going through this.

podcasts.apple.com/gb/podcast/conversations-with-annalisa-barbieri/id1567190358?i=1000524036065 I found this podcast really helpful when my MIL was dying.

Mantlemoose · 13/10/2021 07:59

We were the same with our gran, it went in for 2 weeks. She was perfectly peaceful and then she just didn't open her eyes again.

Hathertonhariden · 13/10/2021 08:03

My dad had a massive stroke at the start of covid and never regained consciousness. It took a week after they withdrew fluids for him to pass away. Only my mum was allowed to go and see him and we got very little info from the hospital. We were allowed to ring the ward mobile phone which they took to him so that we could say goodbye. (Well we assume they took it to him, it was all very awkward). When the end actually came it was very quick and mum didn't get there in time.

It is the not knowing and being in limbo that is so distressing but they can treat the symptoms to keep her comfortable. Thinking of you x

Glitterybug · 13/10/2021 08:07

Winston's wish might be good for resources to help your children through it. I'm sorry for what you're going through. My dgm passed away a few weeks ago and i thought she was going to pass away sooner than she did - she hung on for another week but like you, i just wanted it to be over for her by that point.

lnsufficientFuns · 13/10/2021 08:07

How awful for you OP
It really is just a waiting game

Longer and longer sleeps then it comes
A gentle way to leave the world Flowers

moonshine3600 · 13/10/2021 08:13

Very sorry op.
My dad lasted 4 days after meds and liquid stopped.
He peacefully passed in his sleep.
Sending you love.