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When do we know we're approaching the end of life?

Nelehit

Registered User
May 1, 2016
5
New to the forum, and this may sound like a daft question but .... dad sadly had to move to a nursing home last Feb after a chest infection in Oct hospitalised him for three months and had devastating effect on his Alzheimer's. He hasn't walked, talked clearly since. Anyway, last Thursday he became poorly. Slept all day and only ate breakfast. Nursing home didn't seem overly concerned as he had no temperature but a slight 'rattle' on his throat. Eventually a dr visited dad and prescribed oral antibiotics but it appeared more as a precaution than anything. He basically hasn't eaten more than two bowls of soup since then (now Mon, 5 days later), with fluids being poured into his mouth, and he's slept with only momentary awake times. Still the nursing home are unconcerned but surely he should be perking up by now, if he's going to? Would they be able to advise and know when his life is fading away? I just don't know what to expect. An added complication is that my sister is in Greece until Thursday (3 days time) and as yet I haven't bothered her about dad's current health but should I be getting her home? I asked the nursing home directly and they didn't think I needed to contact her. What a responsibility on my shoulders if I get this wrong. Any help or advice would be gratefully received.
 

care2share

Registered User
Jun 14, 2015
92
London
New to the forum, and this may sound like a daft question but .... dad sadly had to move to a nursing home last Feb after a chest infection in Oct hospitalised him for three months and had devastating effect on his Alzheimer's. He hasn't walked, talked clearly since. Anyway, last Thursday he became poorly. Slept all day and only ate breakfast. Nursing home didn't seem overly concerned as he had no temperature but a slight 'rattle' on his throat. Eventually a dr visited dad and prescribed oral antibiotics but it appeared more as a precaution than anything. He basically hasn't eaten more than two bowls of soup since then (now Mon, 5 days later), with fluids being poured into his mouth, and he's slept with only momentary awake times. Still the nursing home are unconcerned but surely he should be perking up by now, if he's going to? Would they be able to advise and know when his life is fading away? I just don't know what to expect. An added complication is that my sister is in Greece until Thursday (3 days time) and as yet I haven't bothered her about dad's current health but should I be getting her home? I asked the nursing home directly and they didn't think I needed to contact her. What a responsibility on my shoulders if I get this wrong. Any help or advice would be gratefully received.
Hi Nelehit,
He does sound very poorly I must say, but it's not uncommon for someone to rally round. As far as your sister is concerned, I don't think you could be held responsible. You cannot be blamed if your crystal ball is not working, after all, she knew he was very ill before she went I dare say.
 

Nelehit

Registered User
May 1, 2016
5
Hi Nelehit,
He does sound very poorly I must say, but it's not uncommon for someone to rally round. As far as your sister is concerned, I don't think you could be held responsible. You cannot be blamed if your crystal ball is not working, after all, she knew he was very ill before she went I dare say.
Thank you for your reply. I just hope that we will know when he's approaching the end of his life. It's been such a traumatic couple of years and we don't know what to expect in the future.
 

lemonjuice

Registered User
Jun 15, 2016
1,535
England
New to the forum, and this may sound like a daft question but .... dad sadly had to move to a nursing home last Feb after a chest infection in Oct hospitalised him for three months and had devastating effect on his Alzheimer's. He hasn't walked, talked clearly since. Anyway, last Thursday he became poorly. Slept all day and only ate breakfast. Nursing home didn't seem overly concerned as he had no temperature but a slight 'rattle' on his throat. Eventually a dr visited dad and prescribed oral antibiotics but it appeared more as a precaution than anything. He basically hasn't eaten more than two bowls of soup since then (now Mon, 5 days later), with fluids being poured into his mouth, and he's slept with only momentary awake times. Still the nursing home are unconcerned but surely he should be perking up by now, if he's going to? Would they be able to advise and know when his life is fading away? I just don't know what to expect. An added complication is that my sister is in Greece until Thursday (3 days time) and as yet I haven't bothered her about dad's current health but should I be getting her home? I asked the nursing home directly and they didn't think I needed to contact her. What a responsibility on my shoulders if I get this wrong. Any help or advice would be gratefully received.
Thing with late stage dementia is that many sufferers seem to be 'nearing the end of life but can live for months and even years at this late stage.
If the NH isn't worried I certainly wouldn't be trying to worry your sister yet.

4 and a half years ago my mother was dying of heart failure. However after 4 months or so she recovered.

This time last year my mother was thought to be 'nearing the end' and was provided with a 'just in case' meds pack. Yet a year later she is actually much better physically, generally eyes open even if not really there as opposed yo sleeping most of the day and not interested in food. She hasn't spoken or been able to do anything for hersel, including feeding herself for over 2 years now
We have months of good health and then an emergency which it takes longer to recover from and then the round goes round again.
 
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Red66

Registered User
Feb 29, 2016
363
Hi Nelehit, you mentioned about soup and fluid being poured into his mouth, I do hope he is fully awake and certainly not breathing this in to his lungs. You haven't mentioned his swallow, or if his fluid is thickened. I know with my dad his fluids were thickened towards the end of life. Dad also had many underlying infections which they didn't seem to pick up on and each time he did lose his appetite a bit more than before, I used to think this is it but again he would rally. I have noticed that dementias appear to give some sort of strength and seems to try have an evil laugh with families. Not only inner strength but incredible hulk type strength/grip. Crazy. Infections really do knock them sideways. Sadly only time will tell. You will know when things are changing, rapid weight loss is a great indicator. I used to think end of life would mean death in a matter of days/weeks. I learnt it was months, my dad was well under 6 stone when he passed on Sunday. Such a hard thing and I feel your pain. My brother like your sister went on holiday, that's their choice. I felt my brother was selfish, but in reality he booked the holiday over a year ago, he arrived back on Saturday and made it up to see dad on Sunday 2 hours before he died. He waited for my brother, your dad could wait for your sister, but sadly that's out your hands, you have nothing to feel guilty for if anything does happen. No crystal ball but that doesn't ease your anxiety, and do you know what if you do get it wrong DO NOT feel guilty. It's clear to see you love your father and just want to seek what's best for him, he would be proud of you. Red x
 

Nelehit

Registered User
May 1, 2016
5
Thank you all so much for your replies, and I'm sending very best wishes for all you are going/have gone through too.
It's just the cruellest thing I've ever encountered. Seeing my dad, a retired A Level maths teacher, reduced to someone who can't do anything for himself, smile, speak, read, answer simple questions about what he'd like for lunch etc. Just awful. He does appear to be still swallowing ok although he is refusing all solids, seems to be wretching a bit, and has loose bowels. No thickened fluids as far as I'm aware unless you count soup. I'm finding it so hard to know how to support my mum who has, since dad went into the NH last Feb, sat with him for 5 hours every day with virtually no response from him. I don't know what's best for my two sons (aged 5 and 7) as to whether they should see their grandpa like this, but equally they're on school holidays so it's hard for me to be there as much as I want to because of childcare. I also live 40 miles away. I have no problem with my sister being away as before she left, dad was eating and drinking well and no major difference for months - just didn't want to misread the current situation and not get her home if I have the chance to. Feel so sad.
 

Jessbow

Registered User
Mar 1, 2013
2,966
West Hertfordshire
If he seems to be swallowing okay, I doubt he is on thickened fluids- when people have difficulty swallowing, they are prescribed a powder that goes into their fluids, so even a cup of tea takes on the consistency of something approaching thin wallpaper paste.
Not all people need it.

Be guided by the nursing home - they will have been here many times,and are pretty good at knowing when the time is approaching.

Maybe he has an upset stomach, with his loose bowels etc. Aim for his fav foods/sweet treats and see if you can tempt him. Mums nursing home always had angel delight in the fridge- more solid than yoghurt- sometimes just a spoonful of that was enough
 

Evie5831

Registered User
Nov 7, 2015
108
Certainly for me a recurring problem is "what happens if I get it wrong" but you can only do your best. My dad was termed end of life about three weeks ago and was not expected to pull through, he was moved to a palliative care nursing home 12 days ago and has started to pull round again. Like others have said on here, end of life doesn't necessarily mean something is going to happen quickly. In regards to your sister I would take the NH advice and not mention it to her. My two sisters and I have decided to take our holidays as planned, agreeing it's been a very tough year and a break may fortify us for what's to come, and have agreed that if something does happen to Dad while one of us is away the other two will deal with things.
Guilt is something as the family of someone with dementia you live with constantly but TP have a great bunch of people wHo you can get support from day or night. There is always someone around to listen.
Stay strong
 

Harrys daughter

Registered User
Jul 12, 2016
385
Our dad's been on his last legs on and off now for 3yrs up until May this yr I wouldn't leave the area so no outings or hols on my days off from him case he popped his clogs while I was away then a switch went in my head I think it's called exsaustion and I go when ever I can although it's not often the guilty monster is the hardest to deal with trying to not feel guilty for wanting our life's back (we car for dad at home) x
 

lemonjuice

Registered User
Jun 15, 2016
1,535
England
Our dad's been on his last legs on and off now for 3yrs up until May this yr I wouldn't leave the area so no outings or hols on my days off from him case he popped his clogs while I was away then a switch went in my head I think it's called exsaustion and I go when ever I can although it's not often the guilty monster is the hardest to deal with trying to not feel guilty for wanting our life's back (we car for dad at home) x
I think this just proves the statement that although the PWD is at the terminal stage, that doesn't mean immediate or even in the near future.
 

Nelehit

Registered User
May 1, 2016
5
It turned out to be the end of life

Just an update ..... Dad never regained any strength from his chest infection and we were called to his nursing home last Sunday afternoon. He had barely eaten more than a few mouthfuls of soup for days and his ability to swallow vanished. He was taken off all food and fluids and made comfortable. After over 50 hours of sitting by his side holding his hand with my mum and sister, he finally passed away late Tues eve. He's now free of this horrid cruel illness, but that relief is so tiny compared to the huge feelings of loss. Sad, sad times. My sister and I have decided to do the Alzheimer's Society memory walk in Plymouth in October along with my two young sons as a way of doing something positive in dad's name. Rest in peace dad.
 

Tattoo Lane

Registered User
Jun 28, 2016
176
Devon UK
I am so very sorry, sending loads of love to you all. xxxxxxxxxxxxxxxxxx I wish I could make it better for you, but maybe this is what Dad wanted, he was probably fed up with being so unwell. Try and remember him as he was, not as he died, a strong man, laughing and happy to be with you. xxxxxxxxx
 

sleepless

Registered User
Feb 19, 2010
3,223
The Sweet North
Please accept my sincere condolences on the sad loss of your father.
I am sure that in time, all the good memories you hold of him will overtake the sadness and loss of the past couple of years.
Meanwhile I wish you and your family comfort, peace, and the strength to go through the coming days and weeks.
 

jhoward

Registered User
Aug 3, 2011
183
83
west sussex
thoughts and wishes to you

Thinking of you, Nelehit.
Your father was so fortunate in having you there by him in his last hours, just as a companion as he moved on. Blessings to you.
 

Red66

Registered User
Feb 29, 2016
363
So sorry for your loss. Your Dad is now at peace. I know how you feel, I sympathise with you and your family xx