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End of life, witholding fluids ?

Jake New

New member
I have been caring 24/7 for my Mother for nearly 4 years now. Since Sept 2016. Current dilemma is that at present she is in hospital after another kidney infection. Dr has just notified me today most likely situation is; that it is no longer safe to give her anything by mouth. So it is palliative care. If this is the case I want to get her home to be in her own bed with her family. Biggest problem is the issue of fluids. She is on I.v. fluids at present in hospital but we will have no way to give her food and fluid at home for comfort, as she moves into what will now be her final days. Is this normal and allowed. I feel it is against basic human rights. I do not want to see her suffering as a result of this. I want her home as would be her wishes. But would a hospice setting be the same or can they provide fluids.
Just trying to get best info to help in any way to keep her comfortable.
I am heart broken.
T.I.A for any info.
 

Banjomansmate

Registered User
Jan 13, 2019
1,956
Dorset
The Banjoman had an Advance Directive saying he did not want any intervention to be kept alive so when he took a downturn in his Care Home and could no longer agree to accepting food or fluids he was allowed to pass peacefully. His family came to visit and were fussing because he wasn’t receiving anything apart from having his lips and mouth moistened. The nurse/carer said to them “Has he asked for anything?” When they said “Well no, he cannot” it was pointed out to them that was because his body was shutting down and he couldn’t swallow and they couldn’t force anything into him.
I was informed of the downturn on a Wednesday and he died peacefully on Saturday.
 

Izzy

Volunteer Moderator
Aug 31, 2003
62,366
69
Dundee
Sadly my husband was in the same situation as Banjoman. He was on IV antibiotics and fluids to begin with but these were withdrawn, with my agreement when it was clear that his body was still shutting down. Preparations were being made for him to be transferred home to die but he passed away peacefully, with me by his side, before they could be completed.

Thinking of you and your mother and wishing you strength. I’m glad you have found this forum @Jake New and know that you will be well supported here.
 

canary

Registered User
Feb 25, 2014
12,973
South coast
I am so sorry to hear your news @Jake New

My mum did not take in any food or fluid at the end either.
The thing is, you see, that when someone with dementia passes away their body slowly shuts down over days, weeks, and even months. They then reach a stage where the body can no longer process food and fluid. At this point many people become concerned that their loved one is "starving to death", but that is not what is happening - the reason that they stop eating and drinking is because they are already dying and their body no longer requires it. In fact, giving them food and fluid at this stage can cause pain, because the body can no longer deal with it. So, you see, giving fluid is not a comfort at this stage. People who are dying from dementia can go a remarkable long time with no food or fluid - my mum went for 17 days, but most people do not last this long.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
Hi @Jake New

I am sorry to read about your news.

If your mum is nearing end of life, I would ask that IV fluids are stopped as they serve no purpose other than prolong the dying stage and also allow your mum to 'taste for pleasure' rather than keep her nil by mouth. I was clear about this when my dad was dying and I have also been clear about it with my mum who is now also entering the end stage of dementia.

Getting your mum home will require a lot of help in getting her there and also caring for her when at home, so if that's your wish then you need to raise this and see what can be done to achieve it. I also wish the same thing, but I can't provide the level of care mums unit can -and thats something you do need to think about. I'm not aware of any hospice care in the UK for end stage dementia, but I could be wrong. I know in the USA such hospices do exist.
 

Jake New

New member
The Banjoman had an Advance Directive saying he did not want any intervention to be kept alive so when he took a downturn in his Care Home and could no longer agree to accepting food or fluids he was allowed to pass peacefully. His family came to visit and were fussing because he wasn’t receiving anything apart from having his lips and mouth moistened. The nurse/carer said to them “Has he asked for anything?” When they said “Well no, he cannot” it was pointed out to them that was because his body was shutting down and he couldn’t swallow and they couldn’t force anything into him.
I was informed of the downturn on a Wednesday and he died peacefully on Saturday.
Thank you for this info. Every bit will help me to accept the next step. Decisions are being made on Monday so I am trying to make an informed decision. And be in a position to defend my decision with known situations.

I am sorry for your loss. Glad it was a peaceful passing. Much love.
Your words will also help me to have this discussion with my mother. When I do get her home. As cannot visit her in hospital.
 

Jake New

New member
Sadly my husband was in the same situation as Banjoman. He was on IV antibiotics and fluids to begin with but these were withdrawn, with my agreement when it was clear that his body was still shutting down. Preparations were being made for him to be transferred home to die but he passed away peacefully, with me by his side, before they could be completed.

Thinking of you and your mother and wishing you strength. I’m glad you have found this forum @Jake New and know that you will be well supported here.
Thank you. Yes hoping to get Mammy home Tursday or Wednesday. Really hoping she does make it home. It would be her wish to be at home. She is still communicating, bright and sitting out in chair for a good while each day. So I guess it's out of our hands at this point. What will be will be. Your kind words have helped me get my head back in a better place. Thanks.
 

Jake New

New member
I am so sorry to hear your news @Jake New

My mum did not take in any food or fluid at the end either.
The thing is, you see, that when someone with dementia passes away their body slowly shuts down over days, weeks, and even months. They then reach a stage where the body can no longer process food and fluid. At this point many people become concerned that their loved one is "starving to death", but that is not what is happening - the reason that they stop eating and drinking is because they are already dying and their body no longer requires it. In fact, giving them food and fluid at this stage can cause pain, because the body can no longer deal with it. So, you see, giving fluid is not a comfort at this stage. People who are dying from dementia can go a remarkable long time with no food or fluid - my mum went for 17 days, but most people do not last this long.
It is a horrible end for anyone to face. But thanks to everyones feedback I have a clearer head and a clearer picture of where we are at. She was eating and drinking well up until about 10 days ago. Was put nil by mouth just on Sunday past. Swallow had been giving a bit of bother but she was still eating well on pureed diet and thickened fluid. Think its the speed that this change has all happened that has taken me by surprise. But thanks to everyone here my head is in a better place. Not there yet but heading in right direction. Thank you.
 

Hoped

Registered User
May 17, 2020
11
I am so sorry.
We had a similar situation too with my Dad recently.His decline was very rapid. We managed to get him transferred to a hospice from hospital where we were allowed to see him all day and stayed with him the night he passed.
The care at the hospice was very good.
Take care .
 

Jake New

New member
Hi @Jake New

I am sorry to read about your news.

If your mum is nearing end of life, I would ask that IV fluids are stopped as they serve no purpose other than prolong the dying stage and also allow your mum to 'taste for pleasure' rather than keep her nil by mouth. I was clear about this when my dad was dying and I have also been clear about it with my mum who is now also entering the end stage of dementia.

Getting your mum home will require a lot of help in getting her there and also caring for her when at home, so if that's your wish then you need to raise this and see what can be done to achieve it. I also wish the same thing, but I can't provide the level of care mums unit can -and thats something you do need to think about. I'm not aware of any hospice care in the UK for end stage dementia, but I could be wrong. I know in the USA such hospices do exist.
Thank you
I will discuss the taste thing that sounds interesting.
Yes I.V fluids will be stopping when all is sorted for getting her home. Hoping tomorrow or the next day.
I am truly blessed that here in N. Ireland we do have a fantastic care plan in place. With 2 carers coming in 5 times a day to do the physical care.
As I have Lupus and fibromyalgia I am limited on what I can do. ( I can do lots but have to limit physical as I do pay for it later, if that makes sense). I can do more the company thing. Keeping her safe entertained, making her feel secure, talk about old memories hold her hand that side of things.
Also now that we have protective bubble situation where family members can visit. Other family members will be able to come in and visit and allow me to get a break. My husband a d daughter are here with us too so they can sit s spell to get a wee break.
Marie Curie will hopefully be able to offer a few night sits. So I can go get some sleep. I do have a bed in my mums room so can lie down in with her and rest too. My daughter takes a turn and sleeps in with her too. So hopefully it will be doable.
My sister got in to visit yesterday Mon 6th 1st visit allowed since she was admitted 3 weeks ago for an ongoing UTI and I am going today. CANNOT WAIT TO SEE HER. SO HAPPY 😍
Yes there is hospice care as it was offered but not sure were it is.
At the minute she is content and comfortable so hoping we can share her last days with her as a family and it will be a peaceful end.
Community palliative care will come to the house and sort a pain driver to administer all meds that are needed to keep her comfortable. They will sort mouth care swabs and anything else that she will need.
We need to get a hoist but the social services will sort that out.
So all in all we have things pretty planned out. Once we get the hoist and things all in place, ambulance will bring her home. It is all in the man above hands and I have made my peace with it now.
Thank you again for your advice. I will be keeping you in my thoughts and prayers.
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
Thank you
I will discuss the taste thing that sounds interesting.
Yes I.V fluids will be stopping when all is sorted for getting her home. Hoping tomorrow or the next day.
I am truly blessed that here in N. Ireland we do have a fantastic care plan in place. With 2 carers coming in 5 times a day to do the physical care.
As I have Lupus and fibromyalgia I am limited on what I can do. ( I can do lots but have to limit physical as I do pay for it later, if that makes sense). I can do more the company thing. Keeping her safe entertained, making her feel secure, talk about old memories hold her hand that side of things.
Also now that we have protective bubble situation where family members can visit. Other family members will be able to come in and visit and allow me to get a break. My husband a d daughter are here with us too so they can sit s spell to get a wee break.
Marie Curie will hopefully be able to offer a few night sits. So I can go get some sleep. I do have a bed in my mums room so can lie down in with her and rest too. My daughter takes a turn and sleeps in with her too. So hopefully it will be doable.
My sister got in to visit yesterday Mon 6th 1st visit allowed since she was admitted 3 weeks ago for an ongoing UTI and I am going today. CANNOT WAIT TO SEE HER. SO HAPPY 😍
Yes there is hospice care as it was offered but not sure were it is.
At the minute she is content and comfortable so hoping we can share her last days with her as a family and it will be a peaceful end.
Community palliative care will come to the house and sort a pain driver to administer all meds that are needed to keep her comfortable. They will sort mouth care swabs and anything else that she will need.
We need to get a hoist but the social services will sort that out.
So all in all we have things pretty planned out. Once we get the hoist and things all in place, ambulance will bring her home. It is all in the man above hands and I have made my peace with it now.
Thank you again for your advice. I will be keeping you in my thoughts and prayers.
That sounds like a plan! I wish I could do the same for mum. I sincerely hope it all goes smoothly and wish your mum and you peace.
 

Jake New

New member
That sounds like a plan! I wish I could do the same for mum. I sincerely hope it all goes smoothly and wish your mum and you peace.
Thank you so much for your kind reply. Alzheimers sucks.
Mum has made it back home on Wed evening. Nil by mouth. Drs said she would not feel hunger or thirst. So I was content it was the way things were meant to be after the lovely replies about other loved ones coming through this and that was exactly what happened for them.
My mums story however has not followed that path.
Thursday night during the night. Mammy was both hungry and thirsty, starving were the words she used.
The Marie Curie nurse who was in promised her a big bowl of porridge in the morning. Did her mouth with wee mint mouth swabs. And a wee bit of glucogel to the inside of her cheeks as she is diet controlled diabetic. She settled back to sleep.
Friday morning she was tired but by 10am she was looking her porridge for 2 solid hours I tried distracting her, talking about Anything and Everything, swabbing her mouth a wee bit of glucose etc. But she kept coming back to being hungry and wanting something to eat and drink that she was hungry. She felt her swallow was ok. Not like in the hospital.
I gave her a bigger blob of glucogel and she swallowed it with one gulp. She was begging. So far as she said bring her across to the neighbours at least they would give her a cup of tea and a biscuit. So I made thickened tea softened a biscuit I it. . Only gave her a couple of tsp as was weary of doing it. But she managed to swallow.
Long story but I contacted S&LT and GP got the go Ahead to continue what I was doing a few spoonfuls at sa time. With thick yoghurt consistency.
Thoughts are loss of swallow in hosp. Was possibly due to minor stroke. And maybe function was returning. That was day12 with no food on Fri and day 3 of no fluids. She eat half a jar of babyfood egg custard and has continued to do this over the weekend.
She has gotten weaker and tireder but still feeling hunger and thirst. It has been so difficult. All meds have been stopped. Gp said no to fluids on Fri. I now feel maybe decision was wrong but we had travelled too far down the road to reverse it. Low blood sugars as she is diet controlled diabetic. So so hard. She just had 220ml of water by mouth...... and half a jar of baby apple And strawberry.
Settled back to sleep now.
Difficult times.
 

Jessbow

Registered User
Mar 1, 2013
3,045
West Hertfordshire
It is very Difficult times.

Im afraid my thought pattern would be that,its been made quite clear that she is dying, what difference does it make if I have her a spoonful of something if thats what she wants?

I'm afraid that I would be doing exactly the same as you. Personally I would rather My mother died happy on Tuesday, than lasted til Friday, feeling unhappy that I didnt give her what she wanted
 

canary

Registered User
Feb 25, 2014
12,973
South coast
Ah. This does sometimes happen @Jake New
If your mum is hungry and thirsty then give her something while you are waiting for the SALT. You may find that she has indeed rallied, although it may be short-lived. End of Life in dementia can be a roller coaster.
((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
 

Palerider

Registered User
Aug 9, 2015
1,858
North West
I don't think allowing food or oral fluids is a problem @Jake New, if a person is asking then it should be tried, comfort does include eating and drinking, but its not the same as artificially giving fluids into a vein, which is a very different kettle of fish. There are some differences of opinion on feeding when swallow is affected, but the way you have tried sounds about right to me if you have any concerns -its a difficuklt balance, to thicken fluids or not to?. Taste for pleasure is very important even at the end stages as it can give considerable relief as well as good mouth care. I find ice lollies a good item to have or ice cream as well, even if just a little to quell the desire for something. Its so hard to watch this, and you are doing a great job for your mum. My mum is stil up and down and hanging on with milk shakes -just about for now, so she too is unwell one day and rallied the next, but these episodes are moving closer together and more frequent of bad days than good.
 

Jake New

New member
Thank you so much for your kind reply. Alzheimers sucks.
Mum has made it back home on Wed evening. Nil by mouth. Drs said she would not feel hunger or thirst. So I was content it was the way things were meant to be after the lovely replies about other loved ones coming through this and that was exactly what happened for them.
My mums story however has not followed that path.
Thursday night during the night. Mammy was both hungry and thirsty, starving were the words she used.
The Marie Curie nurse who was in promised her a big bowl of porridge in the morning. Did her mouth with wee mint mouth swabs. And a wee bit of glucogel to the inside of her cheeks as she is diet controlled diabetic. She settled back to sleep.
Friday morning she was tired but by 10am she was looking her porridge for 2 solid hours I tried distracting her, talking about Anything and Everything, swabbing her mouth a wee bit of glucose etc. But she kept coming back to being hungry and wanting something to eat and drink that she was hungry. She felt her swallow was ok. Not like in the hospital.
I gave her a bigger blob of glucogel and she swallowed it with one gulp. She was begging. So far as she said bring her across to the neighbours at least they would give her a cup of tea and a biscuit. So I made thickened tea softened a biscuit I it. . Only gave her a couple of tsp as was weary of doing it. But she managed to swallow.
Long story but I contacted S&LT and GP got the go Ahead to continue what I was doing a few spoonfuls at sa time. With thick yoghurt consistency.
Thoughts are loss of swallow in hosp. Was possibly due to minor stroke. And maybe function was returning. That was day12 with no food on Fri and day 3 of no fluids. She eat half a jar of babyfood egg custard and has continued to do this over the weekend.
She has gotten weaker and tireder but still feeling hunger and thirst. It has been so difficult. All meds have been stopped. Gp said no to fluids on Fri. I now feel maybe decision was wrong but we had travelled too far down the road to reverse it. Low blood sugars as she is diet controlled diabetic. So so hard. She just had 220ml of water by mouth...... and half a jar of baby apple And strawberry.
Settled back to sleep now.
Difficult times.
It is very Difficult times.

Im afraid my thought pattern would be that,its been made quite clear that she is dying, what difference does it make if I have her a spoonful of something if thats what she wants?

I'm afraid that I would be doing exactly the same as you. Personally I would rather My mother died happy on Tuesday, than lasted til Friday, feeling unhappy that I didnt give her what she wanted
Exactly my feelings. It is just purely forger comfort. I just want her comfort. I know she is dying. If it was my dog I would help her pass over. But as that is not allowed. I will not stand by and let her suffer if there is anything I can do to alleviate it. 5 tsp of apple sauce is not really going to extend her life but it maintains her comfort. My end goal is helping her across the finish line at home in her own wee bed surrounded by loved ones peacefully as is possible.
Love and light to you all thank you for assisting and joining me on my journey and sharing your own journey with your lived ones. May they all find comfort and peace.
💗🙏✌
 

Jake New

New member
Thank you so much for your kind reply. Alzheimers sucks.
Mum has made it back home on Wed evening. Nil by mouth. Drs said she would not feel hunger or thirst. So I was content it was the way things were meant to be after the lovely replies about other loved ones coming through this and that was exactly what happened for them.
My mums story however has not followed that path.
Thursday night during the night. Mammy was both hungry and thirsty, starving were the words she used.
The Marie Curie nurse who was in promised her a big bowl of porridge in the morning. Did her mouth with wee mint mouth swabs. And a wee bit of glucogel to the inside of her cheeks as she is diet controlled diabetic. She settled back to sleep.
Friday morning she was tired but by 10am she was looking her porridge for 2 solid hours I tried distracting her, talking about Anything and Everything, swabbing her mouth a wee bit of glucose etc. But she kept coming back to being hungry and wanting something to eat and drink that she was hungry. She felt her swallow was ok. Not like in the hospital.
I gave her a bigger blob of glucogel and she swallowed it with one gulp. She was begging. So far as she said bring her across to the neighbours at least they would give her a cup of tea and a biscuit. So I made thickened tea softened a biscuit I it. . Only gave her a couple of tsp as was weary of doing it. But she managed to swallow.
Long story but I contacted S&LT and GP got the go Ahead to continue what I was doing a few spoonfuls at sa time. With thick yoghurt consistency.
Thoughts are loss of swallow in hosp. Was possibly due to minor stroke. And maybe function was returning. That was day12 with no food on Fri and day 3 of no fluids. She eat half a jar of babyfood egg custard and has continued to do this over the weekend.
She has gotten weaker and tireder but still feeling hunger and thirst. It has been so difficult. All meds have been stopped. Gp said no to fluids on Fri. I now feel maybe decision was wrong but we had travelled too far down the road to reverse it. Low blood sugars as she is diet controlled diabetic. So so hard. She just had 220ml of water by mouth...... and half a jar of baby apple And strawberry.
Settled back to sleep now.
Difficult times.
It is very Difficult times.

Im afraid my thought pattern would be that,its been made quite clear that she is dying, what difference does it make if I have her a spoonful of something if thats what she wants?

I'm afraid that I would be doing exactly the same as you. Personally I would rather My mother died happy on Tuesday, than lasted til Friday, feeling unhappy that I didnt give her what she wanted
Exactly my feelings. It is just purely forger comfort. I just want her comfort. I know she is dying. If it was my dog I would help her pass over. But as that is not allowed. I will not stand by and let her suffer if there is anything I can do to alleviate it. 5 tsp of apple sauce is not really going to extend her life but it maintains her comfort. My end goal is helping her across the finish line at home in her own wee bed surrounded by loved ones peacefully as is possible.
Love and light to you all thank you for assisting and joining me on my journey and sharing your own journey with your lived ones. May they all find comfort and peace.
💗🙏✌
Ah. This does sometimes happen @Jake New
If your mum is hungry and thirsty then give her something while you are waiting for the SALT. You may find that she has indeed rallied, although it may be short-lived. End of Life in dementia can be a roller coaster.
((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
Salt has given permission verbally over the phone. So at least that is good. I wont be getting any unnecessary lectures
 

Jake New

New member
Thank you so much for your kind reply. Alzheimers sucks.
Mum has made it back home on Wed evening. Nil by mouth. Drs said she would not feel hunger or thirst. So I was content it was the way things were meant to be after the lovely replies about other loved ones coming through this and that was exactly what happened for them.
My mums story however has not followed that path.
Thursday night during the night. Mammy was both hungry and thirsty, starving were the words she used.
The Marie Curie nurse who was in promised her a big bowl of porridge in the morning. Did her mouth with wee mint mouth swabs. And a wee bit of glucogel to the inside of her cheeks as she is diet controlled diabetic. She settled back to sleep.
Friday morning she was tired but by 10am she was looking her porridge for 2 solid hours I tried distracting her, talking about Anything and Everything, swabbing her mouth a wee bit of glucose etc. But she kept coming back to being hungry and wanting something to eat and drink that she was hungry. She felt her swallow was ok. Not like in the hospital.
I gave her a bigger blob of glucogel and she swallowed it with one gulp. She was begging. So far as she said bring her across to the neighbours at least they would give her a cup of tea and a biscuit. So I made thickened tea softened a biscuit I it. . Only gave her a couple of tsp as was weary of doing it. But she managed to swallow.
Long story but I contacted S&LT and GP got the go Ahead to continue what I was doing a few spoonfuls at sa time. With thick yoghurt consistency.
Thoughts are loss of swallow in hosp. Was possibly due to minor stroke. And maybe function was returning. That was day12 with no food on Fri and day 3 of no fluids. She eat half a jar of babyfood egg custard and has continued to do this over the weekend.
She has gotten weaker and tireder but still feeling hunger and thirst. It has been so difficult. All meds have been stopped. Gp said no to fluids on Fri. I now feel maybe decision was wrong but we had travelled too far down the road to reverse it. Low blood sugars as she is diet controlled diabetic. So so hard. She just had 220ml of water by mouth...... and half a jar of baby apple And strawberry.
Settled back to sleep now.
Difficult times.
It is very Difficult times.

Im afraid my thought pattern would be that,its been made quite clear that she is dying, what difference does it make if I have her a spoonful of something if thats what she wants?

I'm afraid that I would be doing exactly the same as you. Personally I would rather My mother died happy on Tuesday, than lasted til Friday, feeling unhappy that I didnt give her what she wanted
Exactly my feelings. It is just purely forger comfort. I just want her comfort. I know she is dying. If it was my dog I would help her pass over. But as that is not allowed. I will not stand by and let her suffer if there is anything I can do to alleviate it. 5 tsp of apple sauce is not really going to extend her life but it maintains her comfort. My end goal is helping her across the finish line at home in her own wee bed surrounded by loved ones peacefully as is possible.
Love and light to you all thank you for assisting and joining me on my journey and sharing your own journey with your lived ones. May they all find comfort and peace.
💗🙏✌
Ah. This does sometimes happen @Jake New
If your mum is hungry and thirsty then give her something while you are waiting for the SALT. You may find that she has indeed rallied, although it may be short-lived. End of Life in dementia can be a roller coaster.
((((((((((((((((((((((((((((((((((((((((((hugs))))))))))))))))))))))))))))
Salt has given permission verbally over the phone. So at least that is good. I wont be getting any unnecessary lectures
I don't think allowing food or oral fluids is a problem @Jake New, if a person is asking then it should be tried, comfort does include eating and drinking, but its not the same as artificially giving fluids into a vein, which is a very different kettle of fish. There are some differences of opinion on feeding when swallow is affected, but the way you have tried sounds about right to me if you have any concerns -its a difficuklt balance, to thicken fluids or not to?. Taste for pleasure is very important even at the end stages as it can give considerable relief as well as good mouth care. I find ice lollies a good item to have or ice cream as well, even if just a little to quell the desire for something. Its so hard to watch this, and you are doing a great job for your mum. My mum is stil up and down and hanging on with milk shakes -just about for now, so she too is unwell one day and rallied the next, but these episodes are moving closer together and more frequent of bad days than good.
👍🍭🍦🍹 a wee brandy or sherry. My mum was never a drinker but enjoyed an odd sherry or brandy. At a wedding.