How long ago can symptoms have appeared?

[Lengthenby]

I live abroad and access to dementia support is difficult. I have no doubt at all that my partner now has dementia-like symptoms. No medical diagnosis yet. Looking back I wonder if symptoms and character change can really have been going on for about 8 years? For reasons of simplicity - eg language and local knowledge - my partner dealt with all legal, tax, and banking matters. Over the past two years I have had to take over book keeping, dealing with tax and accountancy. But now I see that some very strange decisions were made starting six or seven years ago.
Has anyone experience of this gradual, undiagnosed change over such a long period. Or am I likely to be imagining things that had nothing to do with dementia at all? Legal matters may become an extreme worry but uk laws do not apply.

 

[Woo2]

My mum was showing signs at the very least 10 years ago , she was a very good cook and baker , she put the chicken it to cook at the same time as putting veg on , I gently explained chicken wasn’t cooked but she didn’t accept it , cakes that she could cook with her eyes shut were going wrong as she was missing out key ingredients, and also dealt with all finances , we didn’t join up the dots and thought she was depressed, she was taking anti depressants on and off ,then when realised it was more serious she refused to see gp so she wasn’t diagnosed until 2 years ago with moderate Alzheimer’s .

 

[Grannie G]

I`m sure my husband showed signs of dementia at least ten years before diagnosis but I didn`t recognise it. I thought his personality was changing because of early retirement or because we were going through a sticky phase in our marriage or simply because of ageing.

It surprised me I didn`t recognise it because my mother had dementia during this period but the signs and symptoms were completely different.

 

[LizzieM]

I live abroad and access to dementia support is difficult. I have no doubt at all that my partner now has dementia-like symptoms. No medical diagnosis yet. Looking back I wonder if symptoms and character change can really have been going on for about 8 years? For reasons of simplicity - eg language and local knowledge - my partner dealt with all legal, tax, and banking matters. Over the past two years I have had to take over book keeping, dealing with tax and accountancy. But now I see that some very strange decisions were made starting six or seven years ago.
Has anyone experience of this gradual, undiagnosed change over such a long period. Or am I likely to be imagining things that had nothing to do with dementia at all? Legal matters may become an extreme worry but uk laws do not apply.

Yes, it is only in retrospect that I realise my OH had been displaying signs - unfortunately I can now put a present financial situation right back to some odd unilateral decisions that he took years ago; when it first started to come to light he was unable to explain what he’d done or why.
Same on a couple of dangerous navigational situations - luckily I was able to retrieve us from those but not the finance. Sending you strength xx

 

[Lawson58]

My husband was diagnosed almost six years ago following three very troubled years. However, I can look back 13-14 years and pinpoint little things that happened that were clearly indicative of what lay ahead.

I realise that I put it down to his quirky personality and thought nothing more of it. I have always liked people who have little eccentricities so was never originally concerned about it. It gradually got worse as the paranoia became fully evident but of course with that came the denial and the battle to get an assessment.

I think many people will tell you similar stories, especially if the person with dementia is older.

 

[Lengthenby]

My mum was showing signs at the very least 10 years ago , she was a very good cook and baker , she put the chicken it to cook at the same time as putting veg on , I gently explained chicken wasn’t cooked but she didn’t accept it , cakes that she could cook with her eyes shut were going wrong as she was missing out key ingredients, and also dealt with all finances , we didn’t join up the dots and thought she was depressed, she was taking anti depressants on and off ,then when realised it was more serious she refused to see gp so she wasn’t diagnosed until 2 years ago with moderate Alzheimer’s .

So sorry not to have replied earlier.....I thought I had set things up so that I would get an alert if I had a reply. Evidently I had not!
Thank you so much, that's almost exactly what is going on here. Yesterday for example a lovely wool jumper came out of the washing machine about 20 sizes too small." Not my fault I've been using this machine for 20 years........." And no way we can go to the GP, same as you. Very comforting but so sad to know you have been down a similar road. Thanks

 

[Lengthenby]

I`m sure my husband showed signs of dementia at least ten years before diagnosis but I didn`t recognise it. I thought his personality was changing because of early retirement or because we were going through a sticky phase in our marriage or simply because of ageing.

It surprised me I didn`t recognise it because my mother had dementia during this period but the signs and symptoms were completely different.

So sorry not to have replied earlier.....I thought I had set things up so that I would get an alert if I had a reply. Evidently I had not!
Thank you so much....I also perhaps should have recognised it. My wife's mother had dementia but that also was only recognised when she started getting lost. But you are very right - it was the personality change which was perhaps an early sign. In a way it is perhaps a help to know that our partners were not well and it was their illness taking over from the person we use to know.

 

[Woo2]

So sorry not to have replied earlier.....I thought I had set things up so that I would get an alert if I had a reply. Evidently I had not!
Thank you so much, that's almost exactly what is going on here. Yesterday for example a lovely wool jumper came out of the washing machine about 20 sizes too small." Not my fault I've been using this machine for 20 years........." And no way we can go to the GP, same as you. Very comforting but so sad to know you have been down a similar road. Thanks

Yes it’s the same here, no washing powder put in machine , the list goes on, can you write to gp and when she does go in he is prepared ? Or you could say that she can go to prove people wrong that there is nothing wrong , whatever you think will work .

 

[Lengthenby]

My husband was diagnosed almost six years ago following three very troubled years. However, I can look back 13-14 years and pinpoint little things that happened that were clearly indicative of what lay ahead.

I realise that I put it down to his quirky personality and thought nothing more of it. I have always liked people who have little eccentricities so was never originally concerned about it. It gradually got worse as the paranoia became fully evident but of course with that came the denial and the battle to get an assessment.

I think many people will tell you similar stories, especially if the person with dementia is older.

So sorry not to have replied earlier.....I thought I had set things up so that I would get an alert if I had a reply. Evidently I had not!
Thank you so very much, what a really difficult time you have been having - I am not nearly so far down the road and find that if I can manage to accept the eccentricities and slowly take over all the things that my wife used to do for us, we manage quite well. However getting a diagnosis looks extremely difficult without blatant dishonesty on my part and I am not sure there is anything the medics can usefully do. And of course the overriding concern of the health workers at present is a much more serious one.

 

[Lengthenby]

Yes it’s the same here, no washing powder put in machine , the list goes on, can you write to gp and when she does go in he is prepared ? Or you could say that she can go to prove people wrong that there is nothing wrong , whatever you think will work .

I did get past the initial stage by talking to the diabetes nurse and she passed my worry on to the gp. But there it stuck because he did do a quick memory test (my wife did not ask why) but she is a well educated ex diplomat so the simple tests were ridiculously easy. Result, no problem found. However many of her friends have noticed a problem and it is not my imagination! When we get out of the lock-down I think I may have to try a private gp.

 

[Lengthenby]

Yes, it is only in retrospect that I realise my OH had been displaying signs - unfortunately I can now put a present financial situation right back to some odd unilateral decisions that he took years ago; when it first started to come to light he was unable to explain what he’d done or why.
Same on a couple of dangerous navigational situations - luckily I was able to retrieve us from those but not the finance. Sending you strength xx

So sorry not to have written earlier - I believed I had set things up to trigger a notification if I had a reply. Evidently I had not! I can see no way out of the finance chaos but I am into my 80s so it may be academic! But it is a comfort to know that the peculiarities may well be the fault of the disease.
Literally navigation problems? Single handing could have been safer?

 

[Lawson58]

I did get past the initial stage by talking to the diabetes nurse and she passed my worry on to the gp. But there it stuck because he did do a quick memory test (my wife did not ask why) but she is a well educated ex diplomat so the simple tests were ridiculously easy. Result, no problem found. However many of her friends have noticed a problem and it is not my imagination! When we get out of the lock-down I think I may have to try a private gp.

Don't let the good result on the memory test put you off trying to get an assessment. My husband still does very well on those tests but he cannot remember the first thirty years of his life. In depth neuropsychological testing revealed a lot of deficits that did not fit the usual picture of Alzheimer's and now he is on medication his paranoia has largely receded into the background.

My husband cannot use a mobile phone but still uses a computer and plays bridge regularly (when Covid-19 doesn't interfere). My husband's family were bookmakers and he has no problem with anything mathematical but he gets confused over the plots and storylines in films etc.

If you record everything of concern as they happen, you can build a picture of what your wife is doing and how she is behaving which may help you in getting an assessment.

It must be very difficult when you live in a different country.

 

[Lengthenby]

Don't let the good result on the memory test put you off trying to get an assessment. My husband still does very well on those tests but he cannot remember the first thirty years of his life. In depth neuropsychological testing revealed a lot of deficits that did not fit the usual picture of Alzheimer's and now he is on medication his paranoia has largely receded into the background.

My husband cannot use a mobile phone but still uses a computer and plays bridge regularly (when Covid-19 doesn't interfere). My husband's family were bookmakers and he has no problem with anything mathematical but he gets confused over the plots and storylines in films etc.

If you record everything of concern as they happen, you can build a picture of what your wife is doing and how she is behaving which may help you in getting an assessment.

It must be very difficult when you live in a different country.

Thanks - I'm sure you are right. It is so odd that these long term symptoms do not, in fact seem so unusual - and yet the gp is un-convinced. There must I suppose be the other side to the story and many worries like ours do turn out to be unfounded. Luckily for me, paranoia is not yet a major problem. I have started a record but it seems so petty and there is always the the feeling that old age does normally bring forgetfulness. I am 82 and my wife 73. But I look back at what I was doing ten years ago and am absolutely certain that my wife would have no hope in a similar situation now.
It is, thank you so much, a great comfort to know I am not on my own!

 

[AztecCamera87]

In retrospect there are so many missed signs with regards to my dad which now look obvious. He is 73 now, but 10-15 years ago he was starting to have problems with short term memory, but we just shrugged it off as dad being dad. He started having finanicial troubles and my mum took over payment of all bills, in his mid 60s he slowly stopped doing things he used to like doing and i recall him having this very out of charachter paranoid rant at his sister on the phone over an inheritence.

It was only when my mum died of cancer (he has no idea now) that it all just became so obvious he could do very little.... and went down hill even quicker. Took me a fight to get dad diagnosed.

 

[jugglingmum]

she is a well educated ex diplomat so the simple tests were ridiculously easy

My mum was a foreign exchange dealer for Lloyds bank in the 60s (not returning after my birth - things were different then) and scored very highly on the mini mental test the GP did and subsequently at the memory clinic, at this stage she wasn't safe to drive, having lost spatial awareness, could no longer manage her finances, had turned her electricity off and could no longer shop or cook. She could however count backwards taking 7 off each time better than me (I'm an accountant)

As others have said keep a diary and keep pushing for this.

Whilst the progression of the illness is inevitable if it is Alzheimers then donepezil can help and it means you can get support should other issues arise.

My mum was diagnosed in 2014 but there were clear personality changes in 2010 and in hindsight I can see issues a few years before that.

 

[Sirena]

The first noticeable sign that my mother had dementia was loss of ability to organise her finances - she could not even do basic tasks. She failed to transfer money from a deposit account to her current account, so bills went unpaid and she only realised when she got demands for money. She could not remember the process or password to make the transfer or even that she needed to do it. That was the point where I had to start using the financial Lasting Power of Attorney.

Six months before that, she had been seen at the memory clinic by a psychiatric nurse who believed she did have dementia and referred to the consultant. However the consultant said he didn't know why she was there as she just had 'normal age related memory loss' (I've seen the paperwork). Nine months later I got her re-referred and she was diagnosed with dementia. So you may find that you have to persist.