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Elderly parents

We have stopped treatment, we are nearly 4 days on, what to do?

17 replies

TheM55 · 02/04/2024 01:12

My FIL, who is 83 has had a massive stroke nearly 6 days ago, blue lighted into hospital and put on the stroke ward. Not conscious but some slight movement on left hand side. Put on various drips (insulin as has diabetes and antibiotics as suspected infections also at play) heart rate 140, gasping for breath, and basically just struggling. Not responsive to anything, does not know (it seems) that we are there. Doctor told us that there was no hope (beyond some sort of miracle) and that we might have to consider moving on to Palliative care, We have tearfully accepted this and asked for them to do this - main consideration that they are made "comfortable" and also his wishes (he has given do not resucitate permssion and has made it quite clear that he would prefer not to survive in these circumstances, so there is no wavering there). Since then they have taken everything out, and put a syringe driver in giving painkillers, but have withdrawn everything else, including fluids etc. They have let us stay in the hospital. We are 4 days on at the bedside now. Whereas we understand that they can only do so much, we feel like they have just abandoned us to "no care" at all. (they do come in every 4 hours or so and every 24 hours to replenish the syringe delivery). He is still unresponsive, but lifts his left arm every so often and puts it to his mouth. We have asked, but told that this is commonplace., We are very worried that he is suffering. Please can someone help. Thank you.

OP posts:
Noyesnoyesok · 02/04/2024 01:17

If you think FIL is distressed please flag up to the nurses. Am guessing that they can give prn medication ie extra meds to help with agitation etc. Don’t wait,just advocate.

Runnerinthenight · 02/04/2024 01:17

That's so tough to watch - my heart goes out to you.

My mother was 20 years younger and had cancer when she was put on the syringe driver. My (limited) understanding of this is that the patient has all the pain meds they need and they are basically 'out of it'. Mum had liquids in her mouth every so often (sorry I forget, it's been more than 17 years now)>

But listen, ask someone. I think nursing staff do get hardened to this because it's their 'every day'. It's not yours. I'm sure they will be more than willing to answer your questions.

For everyone's sake here, I hope the agony isn't prolonged. I'm so sorry x

RMNofTikTok · 02/04/2024 01:22

4 days without fluids is a long time. I'd discuss starting a fluid drip or even decent mouth care with them for comfort measures. Whilst dying people do not need much fluids, thirst like that can be agonising. If his kidneys are still functioning there is no need to withdraw fluids so early on.

RickyGervaislovesdogs · 02/04/2024 01:28

I’m very sorry for what you are going through.

My dad had cancer, he had a syringe driver, no fluids. Took three weeks for him to pass. I was also under the impression they are oblivious to their surroundings. I would also ask about mouth care or fluids.

Keepingittogetherstepbystep · 02/04/2024 01:43

Sorry for what you're going through. It's a difficult time and hard to get your head around.

We were given some sponges to keep my dad's mouth moist. He was also a diabetic and survived 4 days after a fit in the middle of the night, 2 days after being admitted with sepsis. He slipped away peacefully 6 days after being admitted.

hulahoopqueen · 02/04/2024 01:51

If you mention your concerns to them they will likely offer mouth sponges with either normal or thickened water to moisten the mouth which can make things much more comfortable.
My grandma passed in summer of 2020 in the middle of the august heatwave, and it took 6 days after she had treatment stopped and just put on the syringe driver.
Godspeed to your FIL x

ForsythiaPlease · 02/04/2024 01:51

Ask the consultant what medication is in his syringe driver, and what it is treating.
Then ask why fluids (which don't treat anything) have been stopped

Mum1976Mum · 02/04/2024 01:56

We went through this exact scenario and it took my Nan 7 days of no fluids to pass. A lovely nurse came in to explain things to us. She said that the body was shutting down and that it could cause pain and choking to administer fluids other than just wetting the mouth. As the body is barely functioning it doesn’t need the fluid that you and I need. It’s horrible waiting for them to die and definitely made me believe in euthanasia when there is no hope of recovery. I’m so sorry you’re going through this.

wandawaves · 02/04/2024 02:09

In what way do you feel he is suffering? You need to be specific and explain it to the nurses. For eg if he is grimacing he may need extra analgesia (he should be able to have extra as well as the syringe driver). If he seems restless and fidgety, they have a medication for that. If his breathing is a bit 'rattly' there is a medication for that.
They are right to not come in and rouse him, but they should be coming in to check in him for signs of pain or other discomfort. They should be doing regular (2 hourly would be good) mouthcare to manage the discomfort around that, and reposition him for comfort as well.

Please don't ask to restart fluids, that will just prolong the inevitable. His body will be shutting down; he doesn't need the fluids that we need.

If you are comfortable doing mouthcare you can ask the nurses to show you how. Some family members like to be actively caring at this stage. Some aren't though, and that's ok too.

Capmagturk · 02/04/2024 02:20

Sounds like he is "reaching" which is common if someone is dying. You absolutely shouldn't give fluids/drips at this late stage, it can be seriously detrimental and cause further issues and pain. You can use a little sponge to wet his mouth and lips. I'd recommend watching some videos by hospicenursejulie and hospicenursepenny on instagram on end of life they are extremely informative and helped me know what to expect when my mum was dying last November. They also speak about why people don't need fluids. So sorry you are all going through this.

alrightjackie · 02/04/2024 02:24

I've PM'ed you, @TheM55. I've been in the same place and I know how distressing it is. Take care of yourself - it's easy to forget to eat, drink or sleep properly when one of your loved ones is this close to the end. xxx

peloton2024 · 02/04/2024 02:25

ForsythiaPlease · 02/04/2024 01:51

Ask the consultant what medication is in his syringe driver, and what it is treating.
Then ask why fluids (which don't treat anything) have been stopped

He won't have fluids as it can cause more issues in dying patients
A syringe driver is usually for pain relief, to dry secretions, sickness and for any agitation

TheM55 · 02/04/2024 09:14

Thank you for all of your messages. They have helped explain what is going on and also reassured us that this is not out of the ordinary. As often with these things, after I posted the question FIL has passed away during the night. We are heart-broken, but also have some comfort that they have not suffered and is not continuing to struggle on. Hopefully this thread will give some help and advice to someone else who is facing the same thing for the first time. x

OP posts:
MereDintofPandiculation · 02/04/2024 09:21

So sorry, @TheM55 Flowers

Akela64 · 02/04/2024 09:34

Condolences @TheM55

RMNofTikTok · 02/04/2024 23:20

TheM55 · 02/04/2024 09:14

Thank you for all of your messages. They have helped explain what is going on and also reassured us that this is not out of the ordinary. As often with these things, after I posted the question FIL has passed away during the night. We are heart-broken, but also have some comfort that they have not suffered and is not continuing to struggle on. Hopefully this thread will give some help and advice to someone else who is facing the same thing for the first time. x

I'm really sorry for your loss.

ByUmberViewer · 02/04/2024 23:25

I'm sorry for your situation and hope things progress gently. The syringe driver will contain pain relief so he shouldn't be in any pain. There is little else to do now, other than wait and be there for him he can still hear you, hearing is the last sense to go I think.

With regard to setting up a fluid drip I think people misunderstand - People don't die because they aren't drinking any fluids - rather - they aren't drinking any fluids because they're dying. Setting a fluid drip up will just prolong things unnecessarily.

Ask about mouth care though.

Edited to add I've just seen your update - so sorry for your loss 😔

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