• Expert Q&A: Rare dementias - Tues 3 March, 3-4pm

    Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.

    You can either post your question >here< or email them to us at talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

length of disease

Lulu

Registered User
Nov 28, 2004
391
I would be interested to know if anyone on this forum has been watching this disease unfold for 14 years or more - probably in addition to another 4-5 years on top if we count in the earliest problems? It feels like a very long road at times.
 

Izzy

Volunteer Moderator
Aug 31, 2003
60,525
Dundee
My husband was diagnosed with Alzheimer's in October 2001 and died in July 2016. There were signs of something being amiss for at least couple of years before diagnosis. He died following a choking incident which led to aspiration pneumonia. Had he not had this traumatic incident I believe he would have survived for a while longer. He was still at home with me even though his dementia was at quite an advanced stage. With the help of a care package I was able to keep him involved in things like the Memory Choir until the week before he died.
 
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lemonjuice

Registered User
Jun 15, 2016
1,535
England
I would be interested to know if anyone on this forum has been watching this disease unfold for 14 years or more - probably in addition to another 4-5 years on top if we count in the earliest problems? It feels like a very long road at times.
Certainly I reckon I've been dealing with it in my mother since around 2004. So about 13 years and looking back possibly some indications prior to that. My aunt was more than 6 years in the most severe stage, bed-bound, unable to communicate, swallow etc.
My mother has been like that for over 3 years, having 'stabilised' for the past 2 + years when she doesn't appear to have deteriorated, though there's little left to 'fail' now other than an ability to breathe. Her dementia is vascular-related though, due to her heart disease and has always proceeded in steps with longer periods of 'no change' in between.

I actually laugh when I read how dementia is a 'life-limiting disease' shortening life expectancy by about half. My mother has already beaten all expectations and reached 89 and her sister lived till 91 though she developed it later than my mother- her sister. She has lived for 45 years now, post a heart attack in her mid 40s and if anything seems to have a bigger immunity to any infections, further heart disease etc.

Another non-biological aunt started with some symptoms in her mid 50s and lived till her late 80s, but even then, it wasn't the dementia which killed her, but bone cancer.

So yes it does seem a really long road. I often notice how women do seem to 'linger' longer than men though.
 

Lulu

Registered User
Nov 28, 2004
391
Thanks for your responses - nothing unusual in this, then, the length of time. Izzy I followed your posts for a long time and I felt at the time that our experiences were very similar. I knew your husband had died, but not as a consequence of a choking episode. It must have been an awful shock. For my Mum, living with us for over 10 years, I had wished to care for her to the end, but her behaviour became such that this was not going to be possible as her behavioural symptoms were (and are) extreme. Apart from her dementia she has no additional disease that we are aware of.
In asking how long is the disease process, it may seem that I am waiting for her to die, and though this would be the kindest for her, I don't want to be without her. I am beginning to wonder if, though, she will actually outlive me, and am thinking I should leave instructions for just that event. None of us know of course, but I have always tried to think ahead on most issues where possible and I hadn't accounted for that possibilty that I may go first.
Rather dark thoughts today, on such a beautiful day!
 

Canadian Joanne

Volunteer Moderator
Apr 8, 2005
16,245
65
Toronto, Canada
My mother was diagnosed January 3, 2001 but had been behaving oddly for several years before. She died in August 2016. She had her official diagnosis for 15 1/2 years, but I can recall odd behaviour at least 3 years prior to that.

I was told years ago that disease duration can be from 2 to 20 years. it's a very individual matter and as there is no normal disease progression, makes things very hard for everyone involved.
 

lemonjuice

Registered User
Jun 15, 2016
1,535
England
Thanks for your responses - nothing unusual in this, then, the length of time. Izzy I followed your posts for a long time and I felt at the time that our experiences were very similar. I knew your husband had died, but not as a consequence of a choking episode. It must have been an awful shock. For my Mum, living with us for over 10 years, I had wished to care for her to the end, but her behaviour became such that this was not going to be possible as her behavioural symptoms were (and are) extreme. Apart from her dementia she has no additional disease that we are aware of.
In asking how long is the disease process, it may seem that I am waiting for her to die, and though this would be the kindest for her, I don't want to be without her. I am beginning to wonder if, though, she will actually outlive me, and am thinking I should leave instructions for just that event. None of us know of course, but I have always tried to think ahead on most issues where possible and I hadn't accounted for that possibilty that I may go first.
Rather dark thoughts today, on such a beautiful day!
Actually you're not alone with those 'dark thoughts' Lulu. I often think my mother could easily outlive me and have funeral arrangements/ funeral flyer on computer for my husband/children to follow, both for myself and my mother.

I too always assumed I'd look after my mother 'until the end', but I certainly don't have the expertise to cope with her needs at this advanced stage, though behaviourally she is now completely 'passive' and would be easier than she used to be. But hoisting / turning, creaming skin, administering rectal medication etc is far beyond my skills.

Plus I know I would find it difficult to handfeed her until the plate was empty, as the staff do. I might stop earlier perhaps interpreting her 'wants' differently as having watched several family members at this stage she always said, "I'd rather be dead than live like that." So I'd be worried she was trying to tell me she'd 'had enough', when she won't open her mouth or pockets food and needs 'reminding' to swallow and probably stop sooner.

I certainly do often wish her suffering could be all over with and whenever I read of someone's relative passing on, do get upset that I must keep watching this woman who is still 'technically' my mother, but who I already have lost.
 
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Lulu

Registered User
Nov 28, 2004
391
I think I shall do that, Lemonjuice, write instructions out on my computer.
Joanne I think we corresponded years ago and I am sorry to learn your Mum has died. I haven't looked in that often over the years so didn't know. How do you feel?
Ever onwards then ..
 

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