Stories from people who’ve lived past 11 years with Alzheilmers

[AintNoFlorenceNightingale]

My mum has just been diagnosed with Alzheimer’s and I’ve read online that the life expectancy is usually between 3-11 years. I’ve read that people can live longer but I’m failing to find any examples of this.

I’d really like to be able to point her to people on the internet who have lived longer if anyone knows any examples
Thanks!

 

[Izzy]

My husband lived 15 years after diagnosis
@AintNoFlorenceNightingale.

 

[Kevinl]

Don't know I joined this site in 2013 as a carer, wife them mum too, still here hoping to help.
That's the date I joined not when I just read posts on here, my wife was already diagnosed as early onset by then, probably been 15 years all in, mum's MCI was a walk in the park compared to my wife.
Life is a terminal condition, none of live forever. K

 

[2ndAlto]

My OH was diagnosed in 2012 and is still repeating questions! He must have a very slow progressing form of the disease as he really is OK health wise, I can see him going on for another ten years. *sigh*

The more I read on the forum the more I realise how different each PWD is - I guess there are no answers.

 

[Chizz]

My mum has just been diagnosed with Alzheimer’s and I’ve read online that the life expectancy is usually between 3-11 years. I’ve read that people can live longer but I’m failing to find any examples of this.

I’d really like to be able to point her to people on the internet who have lived longer if anyone knows any examples
Thanks!

Hi @AintNoFlorenceNightingale
It not the years in life that matter, its the life in the years that make the difference.
Having been full time caring for my OH for over 7 years now, I try not think it might go for another 7 years or so as that is just too negative. I feel sadness for her, but also for me, as my life has become her life.

 

[canary]

There was a member on here called countryboy (he no longer posts now) who used to be a regular poster and had lived with dementia for about 20 years.
Some types are very slow progressing.
When my mum was diagnosed with dementia I asked the doctor how long she had got and although he was very nice about it, he basically shrugged and said "how long is a piece of string?". There is simply no knowing how quickly people will progress and how long they will live.

Why do you want to point your mum to examples of people who have lived a long time with dementia? Is she scared of dying? My mum went through a phase of saying she was dying and I just to to say - yes mum, we are all dying. Any of us could end up under a bus, but I dont think it will be today

 

[AintNoFlorenceNightingale]

There was a member on here called countryboy (he no longer posts now) who used to be a regular poster and had lived with dementia for about 20 years.
Some types are very slow progressing.
When my mum was diagnosed with dementia I asked the doctor how long she had got and although he was very nice about it, he basically shrugged and said "how long is a piece of string?". There is simply no knowing how quickly people will progress and how long they will live.

Why do you want to point your mum to examples of people who have lived a long time with dementia? Is she scared of dying? My mum went through a phase of saying she was dying and I just to to say - yes mum, we are all dying. Any of us could end up under a bus, but I dont think it will be today

it’s a case of her not being able to find anyone who has lived that long with it, she thinks going downhill is imminent. I thought if I could give examples of someone who managed it successfully for a while it might lift her spirits. Our neighbour came over the other night, lovely person but inadvertently made things worse. She mentioned Terry Prachett had Alzheimer’s and all the amazing things he did. You and I would probably put quality of life over quantity but mum is really scared (also it’s really easy for us to say that when it’s not happening directly to us). When she found out Terry Pratchett only lived for 8 years after diagnosis and died with complications linked to Alzheimer’s it just made things worse.

 

[Jaded'n'faded]

I completely understand the need to give reassurance to your mum - we'd all do anything to lessen a loved one's distress.

The brutal truth though is that dementia is just awful and goes in only one direction. It really is a life sentence and to be perfectly honest with you, many of us wish the end had come sooner than it did because the later stages are traumatic for both the sufferer and their carers. Your mum is the best today that she will ever be...

As you have heard, everyone's 'journey' is different but would you - or your mum - want to live longer if bedbound, incontinent, unable to speak or recognise their family? That's no life for anyone.

I suppose I was 'lucky' with my mum. Her last 3 years were spent in a care home though she was physically quite well. Even towards the end she showed some recognition when I visited - a familiar face though she'd long forgotten who I was. And she could also speak and get around pretty well till a week before she died, when she went very quiet and took to her bed.

TBH, I think that's about as good as it gets with dementia and we were spared the final tragic stages. She was 'a bit unwell' then just died one morning. It was then about 4 years since her dementia became obvious, plus a few years of moderate decline before that.

Sadly there just isn't any encouraging news to tell your mum - she probably wants to hear that some people get dementia but are still living a fairly normal life 20 years later. Not possible. Have you thought about lying through your teeth and making stuff up to reassure her? I know that sounds horrendous but if it reduces her anxiety/stress, so be it. Does she need to know the horrible truth?

 

[sdmhred]

How about Prunella Scales? She is 11 years post diagnosis and from the book Timothy West wrote last year is functioning well.

The media says she has vascular dementia but I am pretty sure I read she has some Alzheimer’s too???

I guess nothing may take away your mum’s fear logic wise but perhaps watch and see what she responds to. And the vast majority will die from something related to their dementia as did Terry Pratchett

I found with my mum what worked was to say, ‘but your illness is quite mild you can still do this, that and the other….’. It worked right until the end when I was comparing her to others worse off and she was left happier.

If she is depressed and anxious post diagnosis i would also speak to GP. These are understandable with such a diagnosis and some medication may be indicated

 

[Sirena]

I know some people do live with mild disease for quite a long while, so it is a possibility but I think it's relatively unusual. I'd encourage your mum to focus on today and try not to worry about tomorrow.

My mother was diagnosed 10 years ago and she is still alive. But she is not living in a way anyone would want to. She has been in a care home for several years and is now incontinent, immobile, and can do nothing at all for herself, not even drink a cup of tea, she has to be fed puree'd food. She sleeps 90% of the time. She's been like this for over a year.

Sorry to be blunt and negative about it, but as @Jaded'n'faded said it's a journey that only goes one way. I would far rather my mother had died 3 years ago when she had some quality of life left, and I would be very surprised if she didn't feel the same (if she was capable of expressing it).

 

[Toopie28]

Yeh, as @Jaded'n'faded and @Sirena said, I'm afraid.

When I found out about Ma, I prayed she would go before it got too bad . She was 88 and is nearly 93 now and healthy as an horse physically, but not her wee head. She's in a home now.

But just tell your Mum that everyone is different. That she'll be okay and life a long life and always be safe as you (or whomever) will be there and make sure she keeps kicking! The reality is, no one knows what's going to happen tomorrow. I nearly died 9 months ago. I'm young but, who knows. 🤷‍♀️

Tell her you found this forum or other places and a whole bunch of people have lived long lives and been fine. So yeh, lie or it may be the truth. You just don't know. Best of luck to you throughout this journey

 

[AintNoFlorenceNightingale]

I completely understand the need to give reassurance to your mum - we'd all do anything to lessen a loved one's distress.

The brutal truth though is that dementia is just awful and goes in only one direction. It really is a life sentence and to be perfectly honest with you, many of us wish the end had come sooner than it did because the later stages are traumatic for both the sufferer and their carers. Your mum is the best today that she will ever be...

As you have heard, everyone's 'journey' is different but would you - or your mum - want to live longer if bedbound, incontinent, unable to speak or recognise their family? That's no life for anyone.

I suppose I was 'lucky' with my mum. Her last 3 years were spent in a care home though she was physically quite well. Even towards the end she showed some recognition when I visited - a familiar face though she'd long forgotten who I was. And she could also speak and get around pretty well till a week before she died, when she went very quiet and took to her bed.

TBH, I think that's about as good as it gets with dementia and we were spared the final tragic stages. She was 'a bit unwell' then just died one morning. It was then about 4 years since her dementia became obvious, plus a few years of moderate decline before that.

Sadly there just isn't any encouraging news to tell your mum - she probably wants to hear that some people get dementia but are still living a fairly normal life 20 years later. Not possible. Have you thought about lying through your teeth and making stuff up to reassure her? I know that sounds horrendous but if it reduces her anxiety/stress, so be it. Does she need to know the horrible truth?

Thanks so much for this post, I really feel like you understand and you’re right, I know I need to try to stop explaining things to her and just lie sometimes and give some general replies etc. It’s just not in my nature to lie, I’m very rational and honest and this is the first time in my life I’m realising it’s not going to work and I need to respond differently to keep her out of distress.

 

[maggie6445]

@AintNoFlorenceNightingale , I'm sorry to hear about your mum. Telling lies doesn't come easy to a lot of us but we learn to do it to stop distress in our loved ones. I found it particularly hard as my OH used to say one of the things he loved most about me was my honesty!

Even now ,three years from diagnosis ,I find myself being a bit evasive rather than telling an outright lie.

I will say that once your mum really declines her awareness of her illness declines too. Pre dementia my OH would say he'd stop his heart meds if he ever had dementia. Now he takes the meds because he's prescribed them and I administer them I do feel some kind of moral dilemma every time he asks what they are for but I do what I need to do🙂

 

[2ndAlto]

Tell your Mum about my husband who is 12 years post diagnosis and is still going strong. His memory has more holes than swiss cheese but health wise he is fine and I think he'll go on for many years yet. He is 77 now

 

[AintNoFlorenceNightingale]

Tell your Mum about my husband who is 12 years post diagnosis and is still going strong. His memory has more holes than swiss cheese but health wise he is fine and I think he'll go on for many years yet. He is 77 now

I will thanks 😄

 

[AintNoFlorenceNightingale]

@AintNoFlorenceNightingale , I'm sorry to hear about your mum. Telling lies doesn't come easy to a lot of us but we learn to do it to stop distress in our loved ones. I found it particularly hard as my OH used to say one of the things he loved most about me was my honesty!

Even now ,three years from diagnosis ,I find myself being a bit evasive rather than telling an outright lie.

I will say that once your mum really declines her awareness of her illness declines too. Pre dementia my OH would say he'd stop his heart meds if he ever had dementia. Now he takes the meds because he's prescribed them and I administer them I do feel some kind of moral dilemma every time he asks what they are for but I do what I need to do🙂

It’s just really hard isn’t it? I just took a load of her stuff to charity shop and of course she doesn’t even know, otherwise we’d be living in a mess. Yeah at the moment she is well aware she has Alzheimer’s, she wanted a book about it as well even though she is already barely reading anymore. Anyway, I printed off the Alzheimer’s booklet, put it in a folder and it is there for reference - put she hasn’t even looked at it 🤣 oh dear, and it will get far worse too

 

[AintNoFlorenceNightingale]

Yeh, as @Jaded'n'faded and @Sirena said, I'm afraid.

When I found out about Ma, I prayed she would go before it got too bad . She was 88 and is nearly 93 now and healthy as an horse physically, but not her wee head. She's in a home now.

But just tell your Mum that everyone is different. That she'll be okay and life a long life and always be safe as you (or whomever) will be there and make sure she keeps kicking! The reality is, no one knows what's going to happen tomorrow. I nearly died 9 months ago. I'm young but, who knows. 🤷‍♀️

Tell her you found this forum or other places and a whole bunch of people have lived long lives and been fine. So yeh, lie or it may be the truth. You just don't know. Best of luck to you throughout this journey

Thanks 👍😄

 

[dbrilyant]

I am 10 years from diagnosis while my brothers have it too and they are ten years older than me. The doctor mentioned 7 good years followed by 7 less good on diagnosis but I am still managing the household, preaching at church and leading health walks (with help). Dr Jennifer Bute, who has dementia herself but lives a worthwhile life, presented a graph showing alternative routes to the end. Either a very gradual decline followed by quickish death or giving up and living long as a vegetable. I am aiming for the former and two of my brothers, nine and eleven years older, seem to be achieving it. The third had a dreadful accident.
Re-assure your Mum there is plenty of good times ahead with fewer responsibilities. Eat well, go out, socialise, exercise, pray, take the tablets and laugh a lot.

 

[maggie6445]

Re-assure your Mum there is plenty of good times ahead with fewer responsibilities. Eat well, go out, socialise, exercise, pray, take the tablets and laugh a lot.

@AintNoFlorenceNightingale Good advice above. Get your mum to go to dementia groups, cafes and craft sessions. It may not have been her thing prior to dementia but these groups give support, understanding, and the opportunity to make friends with people in the same situation. Her new friends will understand her fears and will show her there is life after a dementia diagnosis.

I have made friends with two couples whose husband's have dementia. we go to the cinema , musicals and concerts and the other couple is off on a coach holiday together. My OH not up to the journey or we would be going too. X

 

[AintNoFlorenceNightingale]

I am 10 years from diagnosis while my brothers have it too and they are ten years older than me. The doctor mentioned 7 good years followed by 7 less good on diagnosis but I am still managing the household, preaching at church and leading health walks (with help). Dr Jennifer Bute, who has dementia herself but lives a worthwhile life, presented a graph showing alternative routes to the end. Either a very gradual decline followed by quickish death or giving up and living long as a vegetable. I am aiming for the former and two of my brothers, nine and eleven years older, seem to be achieving it. The third had a dreadful accident.
Re-assure your Mum there is plenty of good times ahead with fewer responsibilities. Eat well, go out, socialise, exercise, pray, take the tablets and laugh a lot.

This is brilliant to hear, thank you so much and long may it continue