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How long does 'late stages' last?

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Buddha

Registered User
Feb 20, 2012
18
0
Wales
Hello all. Feeling totally overwhelmed and lost. Mum was diagnosed 7 years ago with Alzheimer's. She's 81, in hospital at the moment and no-one can tell us anything about her prognosis. We're currently appealing a CHC decision (She was refused), looking at long term care, and are feeling utterly lost in the process. When people describe Mum's condition, health professionals say 'Could be months, could be years'. Does anyone have any thoughts about this? We love our Mum dearly but watching her disappear is part of our lives now-heartbreakingly so of course-but how long does she have to live like this? I am sure I am not alone in thinking this-what are people's experiences of living with the unknown, the 'could be months, years' ? Thank you.
 

karaokePete

Registered User
Jul 23, 2017
6,100
0
N Ireland
Hello @Buddha, unfortunately what you have been told is true. Like so many other aspects of dementia, there is no certainty.

My wife hasn't reached that stage yet so I don't have actual experience and maybe others will be along later to tell of their experience; or you may find some answers in the sub forum you can reach by clicking this link https://forum.alzheimers.org.uk/forums/end-of-life-care.73/

May you and your family have the strength you need to get through this difficult time.
 

canary

Registered User
Feb 25, 2014
15,188
0
South coast
Im afraid that "It could be months, could be years" is simply an honest answer. There is no way of knowing.
All you can do is deal with what its like now and not look too far ahead. It is impossible to plan for dementia.
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,995
0
67
Toronto, Canada
Again, I must iterate it is an honest answer. My mother didn't speak for several years before she died and she was wheelchair bound for the last 10 years of her life.

If it is any consolation to you, my mother was quite serene at the end. The first several years were horrific, as she was violent and aggressive, both physically and verbally. As she lost awareness, she became calmer.

Is your mother reasonably settled and content? If she is, that's a blessing and I feel the most we can ask for.
 

nitram

Registered User
Apr 6, 2011
22,673
0
North Manchester
As others have said prognosis is difficult especially if there are no comorbidities.

Quite often the end is accelerated by complications such as aspiration pneumonia, or recurrent UTIs leading to kidney failure.
 

Kikki21

Registered User
Feb 27, 2016
2,268
0
East Midlands
I would say it all depends. It depends on the type of dementia she has. It depends on whether she has any other illnesses.
My poor mum had several seizures back in December last year & had a fresh CT scan.

She has mixed dementia, mainly vascular & Alzheimers. I asked the consultant then for a prognosis & he said weeks & months - rather than years & months.
My mum is now in a care home & is deemed to have no capacity. She has declined since then but has her 90th birthday in 2 days. I wonder if she is hanging on for that. Who knows?

My mum also has heart & kidney disease, it’s very likely that she will have a stroke or a heart attack & a DNR is in place. Although she can still talk, her memory is shot to pieces, she can only walk with a frame, she is becoming more & more incontinent both ways. It is sad, very sad.
 

Buddha

Registered User
Feb 20, 2012
18
0
Wales
I would say it all depends. It depends on the type of dementia she has. It depends on whether she has any other illnesses.
My poor mum had several seizures back in December last year & had a fresh CT scan.

She has mixed dementia, mainly vascular & Alzheimers. I asked the consultant then for a prognosis & he said weeks & months - rather than years & months.
My mum is now in a care home & is deemed to have no capacity. She has declined since then but has her 90th birthday in 2 days. I wonder if she is hanging on for that. Who knows?

My mum also has heart & kidney disease, it’s very likely that she will have a stroke or a heart attack & a DNR is in place. Although she can still talk, her memory is shot to pieces, she can only walk with a frame, she is becoming more & more incontinent both ways. It is sad, very sad.
Thank you so much for your response. I am so sorry to hear about your Mum. Hope you can have a meaningful celebration with her on her 90th. Sending strength and thoughts. x
 

Kikki21

Registered User
Feb 27, 2016
2,268
0
East Midlands
Thank you so much for your response. I am so sorry to hear about your Mum. Hope you can have a meaningful celebration with her on her 90th. Sending strength and thoughts. x

Thank you @Buddha to be honest I am quite surprised that she is still with us. I can’t believe that the large seizure she had didn’t finish her off completely. I think if she had gone back to live at home on her own then she would not be here. Being in a care home had probably increased her life expectancy. X
 

thebaglady

Registered User
May 14, 2017
9
0
Hello all. Feeling totally overwhelmed and lost. Mum was diagnosed 7 years ago with Alzheimer's. She's 81, in hospital at the moment and no-one can tell us anything about her prognosis. We're currently appealing a CHC decision (She was refused), looking at long term care, and are feeling utterly lost in the process. When people describe Mum's condition, health professionals say 'Could be months, could be years'. Does anyone have any thoughts about this? We love our Mum dearly but watching her disappear is part of our lives now-heartbreakingly so of course-but how long does she have to live like this? I am sure I am not alone in thinking this-what are people's experiences of living with the unknown, the 'could be months, years' ? Thank you.


My husband has lived in a care home for five years and his condition, mixed dementia, has deteriorated recently to the point where he is almost unable to swallow and has many other complications after a serious stroke 15 years ago. His care is second to none and the compassion shown by his carers has to be seen to be believed, I cannot praise the staff and the medical team enough.
I believe that I, being the person that I am, have deluded myself for years into thinking that my husband's health will improve. With help he is eating very little, spits out his medication and has lost all interest in everything. To prevent aspiration pneumonia it has been suggested to me that alternative methods of feeding be administered; a Peg, a tube through the nostrils the medical term I don`t know, or basically to let him eat what he can and presumably fade away with some dignity. A carer at the home has made me aware that a district nurse gives IV treatment at night, this is not a nursing home, but I was unaware of this. This carer who had nursed her own husband at home , told me she had resisted all of the options I mention for the sake of dignity, and she said that I could too. Instinctively I don`t want my husband to suffer any more indignities in order to prolong a life with no quality.
I would like my husband to be comfortable, no more injections or drips, no more dressing to sleep all day slumped in a chair or to be force fed.

Writing this has certainly helped me and I hope this has been of some help to you too.
Talk to the professionals and follow your heart, you are not alone.
 

frmarcus

Registered User
Sep 4, 2016
7
0
Hello Buddha and all: I share your bewilderment and wish you and your loved ones as well as possible in the circumstances.

My dad - 80 - has Alzheimer's and has been in a nursing home for just under two years, having had the diagnosis about five years. He was admitted to hospital yesterday with a chest infection - which we all probably know is the single biggest cause of death for Alzheimer's sufferers 'cos of aspiration. He's on antibiotics and has no compromising weakness other than Alz (he's always been physically healthy). He's lost much weight in the last few months and his swallowing is slowly fading. I know what the end will look like but am conflicted: I don't want to lose him yet as I think he still recognises close family and I have no reason to think he's suffering and in pain - at least physically.

The hospital dr's advised that the visits should happen now, I think out of caution that he will die, but I'm hopeful that he'll pull through - though I know there's never a good or better time to lose one's parent than now... I live 150m from my mum (he's in a hospital near her) and am travelling tomorrow, having got the news to visit soon today. It's the suddenness: I saw him last week and he was OK, if in gentle decline, then he gets this infection...

I share the sense that one just doesn't know if the end's arrived or whether a setback's a blip - and with drs it's a guessing game too.

But I do know that, as with thebaglady, nutrition is soon going to become an issue, which is so miserable. He can still manage pureed food, can keep his head just about up, and isn't bedbound, though lost any mobility several months ago. But the prospect of him being artificially fed fills me with concern and a sense that that is the end... There is a DNAR in place, and IF the kinder thing for him is that he goes before needing it, I hope he does, as much as it pains me to say it.

God bless you all,

Marcus
 

malengwa

Registered User
Jan 26, 2017
258
0
Mum went from mud stage to late to end of life to death in about 4 months. She had cancer and repeated UTIs. I was relieved in the end as many of us are.
The waiting game is awful, the should I shouldn't I is awful, the do I risk a holiday is awful, the what will iisee today is awful, so for mums sake I was glad her journey was very short.
I wish everyone still there, strength to take each day as it comes but also be kind to yourself too.
 

karenbow

New member
May 24, 2021
6
0
Hello all. Feeling totally overwhelmed and lost. Mum was diagnosed 7 years ago with Alzheimer's. She's 81, in hospital at the moment and no-one can tell us anything about her prognosis. We're currently appealing a CHC decision (She was refused), looking at long term care, and are feeling utterly lost in the process. When people describe Mum's condition, health professionals say 'Could be months, could be years'. Does anyone have any thoughts about this? We love our Mum dearly but watching her disappear is part of our lives now-heartbreakingly so of course-but how long does she have to live like this? I am sure I am not alone in thinking this-what are people's experiences of living with the unknown, the 'could be months, years' ? Thank you.
dear buddha , i am in exactly the same situation, it is difficult to get any information on my mums condition or advice for the future and like yourself my mum is precious to me- i lost my dad 5 weeks ago and mum is in a hub awaiting a chc assessment following pneumonia, mum can t walk , feed herself , double incontinance etc but she still saves a lovely smile for me and trusts me to look after her - the decision to look for residential care has been mine alone i am an only child and its heartbreaking that i cannot give my mum the end of life she deserves- i hope you get some clarity - i feel your situation and know it is so difficult - best wishes buddha
 
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