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EOL care and current position

Kph100

Registered User
Sep 3, 2021
10
0
Hi all

Only made a few posts on here but have a few questions.
My father has undiagnosed type of dementia He has been having carers into his home for a couple of years but started to become incontinent and shortly after a carer found him on the floor next to the bed on the morning visit.

He was admitted to hospital about 6 weeks ago and initially they were waiting for a placement in a community hospital but he has deteriorated. He had lost weight before his admission but seems not to of eaten much for that time and is very frail and thin.
Two weeks ago the OTs were talking about discharge locations but he clearly was not engaging with them.
So to cut long story short, last Thursday / Friday they stopped IV as it would appear they had been giving that until my return (live away) and basically made it clear that he was in EOL stage.
So hes not eaten properly for ages, is very thin and has had no fluids all day Friday, saturday and Sunday.
He is still producing urine in his catheter and yesterday was alertish, not so much today.
He is bed bound.

So my question is when you google about how long a person can live without water, medical websites say 3 or 4 days but forums with relatives gone thru this have said sometimes upto a week or two.

Dont get why there is such a disparity and what is more likely ? he still has colour in his skin etc.

The hospital are deciding Monday as to where they think he should go, ie hospice.

Thanks.
 

canary

Registered User
Feb 25, 2014
18,895
0
South coast
Hello @Kph100

Im so sorry to hear about your dad. That must have come as a shock.

If you google how long a person can live without fluid the answers you get ill be about how long a healthy person can live without fluid, which is indeed only a few days.

When someone dies from dementia, however, it is not the same. In this case the body is closing down slowly over days and weeks and eventually the body cannot process food and fluid anymore, but the slow process of the body closing down continues and they can go for many more days without food or fluid. My mum went 17 days with nothing, although it is not usually that long.

When a healthy person goes without fluid it is the lack of fluid that kills them, but when a person with dementia dies the lack of fluid happens because they are already dying, it does not cause the death.

I hope your dad can be kept pain free and comfortable. Now is the time to say the important things to him.
xxx
 

Kph100

Registered User
Sep 3, 2021
10
0
Hello @Kph100

Im so sorry to hear about your dad. That must have come as a shock.

If you google how long a person can live without fluid the answers you get ill be about how long a healthy person can live without fluid, which is indeed only a few days.

When someone dies from dementia, however, it is not the same. In this case the body is closing down slowly over days and weeks and eventually the body cannot process food and fluid anymore, but the slow process of the body closing down continues and they can go for many more days without food or fluid. My mum went 17 days with nothing, although it is not usually that long.

When a healthy person goes without fluid it is the lack of fluid that kills them, but when a person with dementia dies the lack of fluid happens because they are already dying, it does not cause the death.

I hope your dad can be kept pain free and comfortable. Now is the time to say the important things to him.
xxx
Thanks for your reply,

seems odd that the body can deal with no fluids for so long when its in a bad way anyway, compared to a healthy person, I get that not wanting food and fluid is part of the end stage dementia and part of the dying process but doesnt seem to equate for my little brain :), even thou they are using much less energy as bedridden.

Wait and see

Thanks again
 

CAL Y

Registered User
Jul 17, 2021
362
0
Thanks for your reply,

seems odd that the body can deal with no fluids for so long when its in a bad way anyway, compared to a healthy person, I get that not wanting food and fluid is part of the end stage dementia and part of the dying process but doesnt seem to equate for my little brain :), even thou they are using much less energy as bedridden.

Wait and see

Thanks again
@Kph100 . I know it’s hard to believe isn’t it but @ canary is right.
My husband went without fluids for about 10 days. I was amazed that a person can be in such a terrible condition and still keep hanging on.
 

update2020

Registered User
Jan 2, 2020
275
0
So very sorry to hear about your Dad.

You can also look up end of life care online by searching for ‘anticipatory medication uk’ or ditto ‘hydration’. There is quite a lot on info on the NICE, BMA and various NHS websites.
 

Kph100

Registered User
Sep 3, 2021
10
0
Well, we are at day 6 with no fluids. Food stopped before that as noted.

He is now just laying with eyes open and no blinking. Not sure that he can see anything as no reaction.

Mouth open with no moving or closing of it and sounds his breathing is just via his mouth with puffs. This is still fairly regular between every 3 and 4 seconds.

Kind of wish it just ended for him but know will take its own course. Horrible to watch isnt it.
 

canary

Registered User
Feb 25, 2014
18,895
0
South coast
Horrible to watch isnt it.
Yes it is.
Its a sort of twilight world where you dont seem to aware of anything beyond that room.
It amazed me ho mum kept going - the body seems to cling to life.

Hearing is the last thing to go, so make sure you have said all the important things - I love you, thank you, Im sorry and (if appropriate) I forgive you. Tell him it is OK to go.
 

Izzy

Volunteer Moderator
Aug 31, 2003
67,275
0
71
Dundee
Well, we are at day 6 with no fluids. Food stopped before that as noted.

He is now just laying with eyes open and no blinking. Not sure that he can see anything as no reaction.

Mouth open with no moving or closing of it and sounds his breathing is just via his mouth with puffs. This is still fairly regular between every 3 and 4 seconds.

Kind of wish it just ended for him but know will take its own course. Horrible to watch isnt it.

Oh it is indeed @Kph100. I absolutely recognise your description. My husband died 6 years ago this month and your description is exactly how he was. I just held his hand and talked to him. So very sad.

Thinking of you and wishing you all possible strength.
 

Kph100

Registered User
Sep 3, 2021
10
0
Now at day 8 since fluids in form of IV stopped.
He's still eyes open no blinking, breathing thru mouth that doesn't move, he very occasionally moves very slightly.
No response to touch or conversation so like hes in a coma.

His breathing yesterday was steady but today seems to be faster with a larger exhale every so often, then more shallow breathing. Doesn't seem like reached the Cheyne stokes breathing that's described.
 

Duggies-girl

Registered User
Sep 6, 2017
3,356
0
Now at day 8 since fluids in form of IV stopped.
He's still eyes open no blinking, breathing thru mouth that doesn't move, he very occasionally moves very slightly.
No response to touch or conversation so like hes in a coma.

His breathing yesterday was steady but today seems to be faster with a larger exhale every so often, then more shallow breathing. Doesn't seem like reached the Cheyne stokes breathing that's described.
Cheyne stokes breathing doesn't always happen. My dad just quietly stopped breathing. It's a difficult time for you and I hope he finds peace soon.

Wishing you strength