My mother has mixed dementia. She's been looked at by the speech & language people, who said she has a strong swallow, but we and the care home had seen her struggle. She was still eating fairly well. On 19th Feb she developed a chest infection (the 2nd recently) & I couldn't help feeling she wasn't going to recover. She stopped eating and drinking or taking medication and was much more confused, but I was told by the home that they confidently expected her to live 3-5 years. Since then, the chest has cleared but she's still as confused and is clearly unable to swallow solids, nor does she want to. I've now been told that she won't recover. She's drinking plenty again, but only orange juice and tea or milk that the home is adding cream to. She won't eat soup, pureed food or any other drink including fortified drinks. I can see her weakening & I know she's now dying, but I'm wondering how long she might survive like this. I know it's a 'how long is a piece of string' question, but presumably there's some broad timescale I can expect. Can anyone help with that?
Not eaten since 19 February
- Thread starter Misstep
- Start date
I wish I could but it`s an impossible waiting game. It sounds as if her body is shutting down but it can be so different with each individual.
I hope your mother doesn't`t seem to be suffering.
I agree- how long is a piece of string?
My mother spent the last 3 years with a 'poor swallow', but trained carers managed to help her 'eat' and keep going for years. Even when the swallow 'really started to fail and she was doing little more than having fortified drinks it was months - might be as much as 9-12 months I can't quite remember exactly how long now.
Much depends on the expertise of the carers to 'help' the person swallow. There are a number of techniques used, some of which in my opinion veered very close to 'force-feeding- just not using a tube, but everyone is so frightened of being accused of 'assisting' in someone's death.
My mother spent the last 3 years with a 'poor swallow', but trained carers managed to help her 'eat' and keep going for years. Even when the swallow 'really started to fail and she was doing little more than having fortified drinks it was months - might be as much as 9-12 months I can't quite remember exactly how long now.
Much depends on the expertise of the carers to 'help' the person swallow. There are a number of techniques used, some of which in my opinion veered very close to 'force-feeding- just not using a tube, but everyone is so frightened of being accused of 'assisting' in someone's death.
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Thank you. At the moment at least she isn't suffering. I'm praying it stays that way
Just reading thorough this board, as it’s where my man is. Hope u r doing as well as can be expected, under whatever circumstances you have found yourself at. xx
My mother went through something similar, she stopped eating /went off her food for 5-6 weeks before being admitted to hospital ( ulcer infection/ confusion / delirious ' thought to be on too many pain medications they tried to tit-rate her off them ....but they forgot!) -
We thought the pain medication - pain patches and codeine might be a reason for the coincidental loss in appetite - it seems logical question to ask
However the doctors assumed immediately, it seemed, that she was "letting go" - end of life phase
i didn't see that one coming - its the first time in her life that she wasn't eating well and she was so fit /young for her age - 81 - nothing significantly medically wrong with her except a small ulcer - and she was still a strong personality - lots of fight - the end of life diagnosis didn't make any sense - but that's whats assumed by doctors - so many variables but so many broad assumptions made by doctors - they don't make any sense, its very hard to believe a thing they say, especially time frames regarding end of life.
I tried for a second opinion but once a patient is labelled with dementia the doctors don't tend to think outside the square in my experience, they just follow suit.
In the end Mum died to the shock of doctors and family of a brain bleed - a hematoma grew so big it eventually gave her a stroke , but there was definitely lots of neurological symptoms for a long time leading up to the diagnosis - for many months -completely ignored by 6 hospitals - loss of appetite, loss of eyesight , hearing, balance, leg strength....ability to walk/falls - its likely to be the main reason she stopped eating - she was in so much pain from brain bleeding - peripheral neurpathy but no one picked up on it.
Mum didn't eat too much towards the end but still enjoyed drinking milk /protein shakes and a slice of bread and nutella, sometimes porridge, but she played with her food a lot of the time - It was like she couldn't see that it was there - or didn't know what food was? Despite this lack of appetite she put on 4kg of weight mainly from the protein shakes in 5 weeks .
Mum's swallow function speech was OK till the end, but possibly due to the bleed on the brain rather than dementia she didn't want to eat ...or just didn't know what food was?
On the odd day stupor like she would try to eat the hospital bed sheets - her basic instincts would kick in - i'd swap the bed sheets for a bit of toast and nutella again - i knew that's what she wanted
After the bleed grew into a stroke Mum and the doctors finally figured out the issue (now too late) lasted 11 days without food or water - i think she shut down due to dehydration in the end - she was very strong willed .
The doctors refused to treat her - she wasn't considered a candidate for neurological care because of the dementia diagnosis and age
Even though the brain bleed could have been the cause of the dementia it was never considered by the doctors - they assumed there was no case for the possibility and therefore no point looking into the matter further.
They assumed mum was weak because of her age and the dementia diagnosis - they predicted that she would likely only last 24-48 -hours . however the palliative care team said sometimes these bleed reabsorb so there was a small chance she could have recovered.
They didn't bother to determine the location or the type of bleed they just decided to provide palliative care .We weren't given any choice.
We weren't really kept informed about the progress.
There was no drips or feeding tubes considered. We asked the palliative care team about water but the said if Mum was given water her kidneys would shut down - she had to fight the battle on her own - either recover quickly or starve or dehydrate - she perished in the end.
There was no one to discuss options with - the doctors just seemed to vanish for 11 days.
If the doctors picked up the bleed she could have lived another 5-10 years.
Strokes mimic dementia. Doctor never test for chronic bleeds despite the prevalence. Its not on the doctor radar until its too late damage done
A lot of people get strokes and then dementia follows -It's all related. i'm not sure which came first in my case - i think it was mainly the bleed.
Its really sad . it was a really rough time - you don't know what to do and you cant get much help from doctors either - there just as confused
I wish you all the best for mothers care and comfort
We thought the pain medication - pain patches and codeine might be a reason for the coincidental loss in appetite - it seems logical question to ask
However the doctors assumed immediately, it seemed, that she was "letting go" - end of life phase
i didn't see that one coming - its the first time in her life that she wasn't eating well and she was so fit /young for her age - 81 - nothing significantly medically wrong with her except a small ulcer - and she was still a strong personality - lots of fight - the end of life diagnosis didn't make any sense - but that's whats assumed by doctors - so many variables but so many broad assumptions made by doctors - they don't make any sense, its very hard to believe a thing they say, especially time frames regarding end of life.
I tried for a second opinion but once a patient is labelled with dementia the doctors don't tend to think outside the square in my experience, they just follow suit.
In the end Mum died to the shock of doctors and family of a brain bleed - a hematoma grew so big it eventually gave her a stroke , but there was definitely lots of neurological symptoms for a long time leading up to the diagnosis - for many months -completely ignored by 6 hospitals - loss of appetite, loss of eyesight , hearing, balance, leg strength....ability to walk/falls - its likely to be the main reason she stopped eating - she was in so much pain from brain bleeding - peripheral neurpathy but no one picked up on it.
Mum didn't eat too much towards the end but still enjoyed drinking milk /protein shakes and a slice of bread and nutella, sometimes porridge, but she played with her food a lot of the time - It was like she couldn't see that it was there - or didn't know what food was? Despite this lack of appetite she put on 4kg of weight mainly from the protein shakes in 5 weeks .
Mum's swallow function speech was OK till the end, but possibly due to the bleed on the brain rather than dementia she didn't want to eat ...or just didn't know what food was?
On the odd day stupor like she would try to eat the hospital bed sheets - her basic instincts would kick in - i'd swap the bed sheets for a bit of toast and nutella again - i knew that's what she wanted
After the bleed grew into a stroke Mum and the doctors finally figured out the issue (now too late) lasted 11 days without food or water - i think she shut down due to dehydration in the end - she was very strong willed .
The doctors refused to treat her - she wasn't considered a candidate for neurological care because of the dementia diagnosis and age
Even though the brain bleed could have been the cause of the dementia it was never considered by the doctors - they assumed there was no case for the possibility and therefore no point looking into the matter further.
They assumed mum was weak because of her age and the dementia diagnosis - they predicted that she would likely only last 24-48 -hours . however the palliative care team said sometimes these bleed reabsorb so there was a small chance she could have recovered.
They didn't bother to determine the location or the type of bleed they just decided to provide palliative care .We weren't given any choice.
We weren't really kept informed about the progress.
There was no drips or feeding tubes considered. We asked the palliative care team about water but the said if Mum was given water her kidneys would shut down - she had to fight the battle on her own - either recover quickly or starve or dehydrate - she perished in the end.
There was no one to discuss options with - the doctors just seemed to vanish for 11 days.
If the doctors picked up the bleed she could have lived another 5-10 years.
Strokes mimic dementia. Doctor never test for chronic bleeds despite the prevalence. Its not on the doctor radar until its too late damage done
A lot of people get strokes and then dementia follows -It's all related. i'm not sure which came first in my case - i think it was mainly the bleed.
Its really sad . it was a really rough time - you don't know what to do and you cant get much help from doctors either - there just as confused
I wish you all the best for mothers care and comfort
