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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 Treatment and liquids were withdrawn on Sunday morning.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:
ApolloandDaphne · 13/10/2021 08:17

It can take a while after fluids and food are stopped. The care staff have no way of knowing how long it might take. I took my FIL about 10 days but my friends DM took over two weeks. It is so hard, all that waiting and hoping they go peacefully.

Laurapb88 · 13/10/2021 08:50

We brought my nan home to die as was her wish and she battled on until the end we were told she would be an hour or two at the most she lasted a week and even when she was going she must have taken 5 last breaths a minute apart some people fight to the bitter end I think this is what your mil is doing sending lots of love x

NameChangeWithACold · 13/10/2021 21:31

Still thinking of you OP FlowersFlowers

StopGo · 13/10/2021 21:52

The death journey isn’t peaceful, gracious or gentle. I’ve witnessed it four times in the last two years. It’s brutal and can be long winded. My DF spent six weeks dying and I’m not sure I will ever come to terms with it.

Basically they die from the. Inside out bit by bit. I’m sorry to be so graphic. Your MIL sounds correctly sedated many are not.

YouveBeenLittUp · 13/10/2021 22:06

Sorry your going through this OP. My grandmother is currently at home to die too and it's really really difficult. She's still taking small drinks occasionally but can see her sleeping longer every day. The nurses told us she would probably just eventually sleep more and more each day. I think the main thing is they have the correct pain relief and aren't in any pain.

It's a really difficult situation, I hope you are all doing ok (well as much as you can be) Thanks

SunshineCake1 · 13/10/2021 22:10

It seems so cruel to withdraw fluids for so long. I clearly don't know why they do or why it is okay but it seems awful.

@Knitwit101 I am sorry for what you are going through and hope your DC are doing as well as possible.

gogohm · 13/10/2021 22:33

It's so hard isn't it? The decision to move to palliative care and not artificially hydrate or feed isn't taken lightly, and it's tough to watch. We went through this last year and it was about 2 weeks, slightly more actually I think, I didn't keep notes and can't remember which day it was they took out the drips.

7catsisnotenough · 13/10/2021 23:54

@Knitwit101

Take your children (if they want to go), let them speak individually to MIL, tell her that she is loved and you understand how hard it is, that it's ok for her to go now. Sometimes being given permission to go is what the dying person needs.

It's heartbreaking to go through, my thoughts are with you all 💐

NameChangeWithACold · 14/10/2021 05:10

Thinking of you OP xx Flowers

beastlyslumber · 14/10/2021 05:57

It is tough, OP. Hope the end is peaceful when it comes Flowers

Lovelydovey · 14/10/2021 06:12

This sounds so hard for you, my thoughts are with you. Glad you are able to be with her. We were told the hearing is the last sense to go so did lots of talking, and then when this stage was prolonged, played songs and even tv programmes that my DM loved (flashback to watching Sarah Jane adventures on a iPad while holding my dying DMs hand).

Is she being overseen by the palliative team and has someone from there spoken to you? I found them much better at dealing with families and being able to explain the situation and make decisions about next steps.

My DM refused treatment and passed away 48 hours later. At around 43 hours I asked the doctor looking after her what was happening and what would happen if this stage was prolonged - their response was to talk about restarting treatment and sending her home, which was completely unrealistic and to be honest terrifying. The palliative nurse was much more reassuring and able to explain what was happening.

trockodile · 14/10/2021 06:22

I’ve just been through this looking after my mum at home (she died a week ago).
The first thing is that withdrawing food and drink for a palliative patient is not cruel I promise. Giving them orally by this stage can be dangerous (asphyxiation) and can put the body under an undue amount of stress. Proper mouth care should keep the patient comfortable.
Mum was conscious but sleeping a lot in the last few days. She had been very ill and in bed since May. She was on a morphine driver and didn’t seem to be in too much pain. The worst was the secretions in her chest but i genuinely do think it bothered us more than her. Fluids stopped on the Fri/Sat and she died on the next Wednesday. During the day she had been awake, and it happened quite suddenly at night.
Its hard for the children and I would try not to focus on them saying ‘goodbye’-reassure them that she knows they love her, and its ok not to visit-they’re not abandoning her at all. it was only me and my dad with my mum in the last few days as the family all live quite a distance and 16 year old DS was staying at his girlfriend’s. I just kept reminding her (and telling them I was doing so) how much they love her.
There aren’t really any words-but i just wanted you to know you are not alone, it’s an awful time but you will get through it.Sad

ShakespearesSisters · 14/10/2021 06:32

My poor nan lasted a month before finally expiring when they said it would be just a few days. She had wasted away somewhat by the end from having been on the larger side, her eyes were very sunken. It was awful her deteriorating for so long. I wish they could have done something so it didn't drag out. We were told she was comfortable and in no pain but it was awful. Big hugs x x

romdowa · 14/10/2021 06:37

My gran lasted over 10 days with no fluids or food before her body finally gave up. They told us she had an extremely strong heart. I said my goodbyes 2 days in and then couldn't face going back again. It was incredibly hard waiting for the call and knowing she was just lingering on. She wouldn't have wanted that. My heart goes out to you and I hope your mil will be at peace soon 🙏❤

PermanentTemporary · 14/10/2021 06:58

Just to say that someone who is asleep wouldn't eat or drink. Adding fluids given by needle isn't always right as the body is shutting down naturally and doesn't process them - there can be swelling or the fluid gathers in the lungs. Aspiration isn't always the big worry by this stage and people who still want a sip from time to time can usually have one. But if not alert they won't be asking for it.

LouLou198 · 14/10/2021 07:09

This may seem a bit odd, but have one of you given her "permission" to go? Someone gently talking to her, even if you think she can't hear you, and gently telling her she is loved and it's okay to go. I've looked after people at the end of life for 20 years, and I have seen this happen many times. It's such a difficult time op, especially with it going on so long for you.

moonshine3600 · 14/10/2021 07:39

@LouLou198

This may seem a bit odd, but have one of you given her "permission" to go? Someone gently talking to her, even if you think she can't hear you, and gently telling her she is loved and it's okay to go. I've looked after people at the end of life for 20 years, and I have seen this happen many times. It's such a difficult time op, especially with it going on so long for you.
Not lying this is what happened to us. My dad was hanging on and he said I need to go, I said to my mum tell him he can, he then died that night.
MadameXanadu · 14/10/2021 08:57

I’m so sorry OP to read what you’re going through. Just so very traumatic for you and your family to experience. It’s hard to watch the death process, it’s not like films or tv drama at all; most people are unprepared as we are all sheltered so much from the reality of the death process. My heart goes out to you at this very difficult time. Flowers

My parents used to own a nursing home.I was in my teens and early 20’s when I worked there for a number of years as a health care assistant.

Yes, patients do tend to sleep more and more as others have said, their body just shuts down over a period of days or weeks. They can look well, are always warm and seem quite normal really but have limited consciousness.

Once a patient is on that journey, it’s a process that you can see happening but it’s generally gradual. Some people just never open their eyes again, others have periods of lucidity- it just depends on the individual. Some days you’ll see little change.

Breathing becomes more shallow. Occasionally, people ( not all) get a death rattle, called cheyne-stoking which can be fairly upsetting to listen to, so prepare yourself for this if it happens. This is the abnormal pattern of breathing of apnea soon before death and it always takes place fairly close to the end. Skin usually becomes mottled, a sort of purple, brown, although still warm. Sometimes, you can see large areas of this discolouration on arms and legs especially.

The one thing I often noticed when a patient was close to death, was the smell. It’s actually not that unpleasant, but very distinctive. It can smell slightly sweet, it’s hard to describe. It usually happens 48-24 hrs before death. I remember one lady in particular, whose odour was incredibly strong in her final days. It’s all the chemical changes going on in the body. So you might notice this, but you might not. Hospitals smell strong anyway, so in that environment, it may not be obvious. Usually patients become incontinent, so may need to be changed by nurses if applicable. In the final days, usually just keeping patients comfortable and clean is all that’s necessary. So you might wish to wipe her brow or brush her hair.

Patients only go cold once death has taken them, so don’t expect her to feel cold. Although sometimes people can feel
rather clammy and slightly odd to the touch- almost slightly sweaty.

I used to massage the hands of those dying - just nice normal things you know? So I would recommend holding her hand as much as possible. I know that sounds so obvious, but sometimes we forget in our own distress. I used to massage the skin and nails with a nice handcream, chat to them, brush their hair, tell a joke, talk about nature, general news, a favourite book or the weather and smile at them. A calming, gentle approach I felt helped.

I remember seeing people become weaker and they may just suddenly die when you least expect it or they linger on. Sometimes they just fade away overnight or simply stop breathing after a period of seemingly more awareness. So it’s hard to know when the moment of death will happen, it’s quite sporadic, but many elderly people do tend to pass during the night when the body is at it’s lowest ebb.

I can only speak from my own experience. I looked after the elderly, so this is simply from my own perspective. It was often a relief to see patients out of suffering and the one thing I can say is that the body is literally a shell once you’re gone.

There was one patient who was in so much pain that I was literally crying in a heap after she passed, I was so relieved she was out of such awful suffering. I spent some time with her before the undertakers came and talked to her for a while. I could absolutely sense her standing right next to me for a few minutes, then she faded away. It was a such special moment. I still carry her in my heart to this day and often think about her. I knew she was at peace and free. I took so much comfort from that.

I hope that helps a little OP. Try not to be frightened, she will pass when it’s the right time. Just stay with her as you’re already doing and talk to her as much as you can when visiting. You’re absolutely doing the right thing.

Take good care of yourself and may your family be comforted and supported during this very difficult time. Sending you and your mother in law my thoughts and prayers Flowers

beastlyslumber · 14/10/2021 09:13

That's a really lovely and comforting post @MadameXanadu

NameChangeWithACold · 16/10/2021 08:39

Any news OP? Thinking of you Flowers

Knitwit101 · 19/10/2021 14:11

She died at the end of last week. She lasted 10 days on end of life care which is way more than anyone expected. She just stopped breathing overnight when she was on her own.

She seemed peaceful enough right to the end, I really hope she was. Ds9 is bothered a bit by the idea that she might have been worried or scared and she couldn't tell anyone. But as far as we can tell she had as good a death as you can have.

Thanks for all the support, I appreciate it.

OP posts:
PermanentTemporary · 19/10/2021 14:40

Thank you for telling us Knitwit Flowers

LemonJuiceFromConcentrate · 19/10/2021 14:46

Such a moving thread. Thank you OP, and everyone. And I’m sorry for your family’s loss Flowers

2bazookas · 19/10/2021 15:35

She's not dead yet, so her needs should still be the main focus.

Although she is sedated and non responsive she may still have hearing and be aware of 5 people around her. To her that presence may feel rather oppressive and confusing.

  Your children are sad, upset and apprehensive;  those are not emotions  she needs  to be aware of  or pick up from them.  

For her sake, I would suggest that you reduce visitor numbers now to just DH,. FIL if he's till around.

  Tell the children, it's time for you and me to let her go.  This is her  time .
SwimStressNameChange · 19/10/2021 15:59

Sorry to hear your update op Flowers glad it was peaceful X wishing you all the best, look after yourself Flowers

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