What were the signs?

[trakand01]

Hi,

I'm incredibly interested (for the strangest reasons) in the 'early signs' of dementia, and how to spot them / what they might be. Not because I think perhaps we could have stopped my nannan's dementia, but just because I'm trying to work out how long she might have had it.

See the issue with my Nannan is that, although it sounds callous and harsh, being completely truthful, she's never been what you would call a particularly 'intelligent' or 'independant' woman. She's never had / wanted / needed any sort of understanding of current affairs, news, politics, foreign affairs, or even very much general knowledge other than what she has gathered during her daily life. She was out of education at 14, and married at 21. Since that time, my Grandpa has sheltered her from everyone and everything. She never had to learn how to do anything that wasnt included in the remit of 'housewife' because Grandpa did it. She has always refused to even pay by cheque because she doesnt know how to fill one out, despite being shown several times.

As a result of this, it's difficult to say exactly when she started exhibiting symptoms of AD/VaD because well... she's always been 'a bit dizzy' as it were.

What eventually tipped us off was things like her completely forgetting what time you'd told her to meet up, or sending birthday cards in the wrong month, putting the wrong flour in yorkshire puddings (her speciality). Things that she never used to do.

So... I guess i'm asking what it was that 'tipped you off' that something was amiss with your relative?

Also, I wonder how you judge how 'severe' or far along the sufferer is, and what the different symptoms are between AD and VaD? Nannan is incapable of living alone, or even being left alone for more than say 20 minutes, because she ends up just sat, staring at the wall because she can't remember what to do / seems to just switch off. Mum found her sat in the dark in the bathroom the other day and she couldnt explain what she was doing in there. However, confusion and 'risk' aside, because of the way Grandpa has done everything for 60 years, I dont think she'd ever be able to live alone anyway, even without the dementia because she simply doesnt have those 'skills'.

We know she will have had a score at the memory clinic, for the test, but either Grandpa hasnt told us, she didnt tell him about it or something else has happened because Mum and I have no idea what it was...

 

[AlsoConfused]

Like you Trak, I always seek to understand situations, illnesses, the likely range of outcomes and so on. It's a coping mechanism for me - if I understand it, I'm confident in my ability to deal with it (however unpleasant or taxing it may be).

I don't think you're going to find any better answers to your questions about your grandmother than you already have. She was in a very sheltered environment so she was very rarely tested by new challenges.

You know when you first picked up on the changes in her behaviour so you've a rough "starting date". The progression of dementia in any one individual seems so variable that the length of time between onset and the "starting date" just can't be fixed.

 

[Pollyanna]

Hello

Like your Grandma, my Grandma left school, married, worked hard on a farm all her working life and when my Grandparents retired, it was my Granddad who made all the decisions and she continued to run their home. Her world was her home, her family and her dogs. She never wanted anything or expected anything for herself.

She was officially diagnosed two years before she died, with severe Alzheimer’s. Now, I can't believe that we didn't see the diagnosis coming. We thought she was just a bit daft, getting on a bit. But, she didn't live in the modern world so there was no social pressure on her and there were no obvious signs and. We knew very little of what Alzheimer’s or dementia actually was. Like your Grandma she's always been a bit 'mythered' (her word not mine)! I now find it astonishing, but we were shocked by the diagnosis and also scared of what would happen, we had no idea!

My Mom and I have discussed how long she must have had dementia for and I would guess at 10 years. She'd been so strong caring for my Grandpa when he became ill, but I suspect that this and his death was the beginning of her dementia years. I remember very clearly a moment at my Grandpa's funeral which was eight years ago. We were sat in the Church Hall and she was sat surrounded my family and friends who were offering support.

I caught her eye and she smiled at me, but at that moment she looked so lost and alone, yet surrounded by people. It was a look that I saw more and more of.

Then came the more obvious signs, the endless repetition of stories, the same photos, trying to give me money again and again, not being able to make a cup of tea anymore, only eating what was visible, not going to bed, not washing, then the falls.

Every case must be so different, I wonder if we'd have had a better understanding we could have helped her better.

Polly x

 

[sistermillicent]

It does seem to matter enough to need to know what and when the first signs were, my dad and i have sat up several nights and tried to work it out.

I first noticed something strange a good fifteen years ago with my mum when she started telling stories supposedly about her childhood that were actually about mine, and attributing things she had said to me having said them. I thought maybe I was the one having memory problems at the time and because the culture in my family is never to argue with parents I did not even attempt to disagree with her.

That was well before the time seven years ago when I arrived for a visit and she didn't know where the coffee was kept, I knew then that there was something wrong more than a little forgetfulness.

 

[willow4Sam]

Hi

I absolutely understand your desire to know more about when the disease started and what the signs were. Both of my parents now have dementia - my father has diagnosed Alzheimer's and my mother has undiagnosed "something". Because both of my parents are affected, my uncle also has Alzheimer's and my mother's mother was also considered to be "senile", so I have a Damocles sword hanging over my head and I really do want to know what the early symptoms are. When is having "a senior moment" actually a sign of something more sinister?!

My father was diagnosed 8 years ago and we think it was probably brought about or exacerbated by a head trauma that he had a couple of years before. One of the signs that with hindsight may have been an indicator is not realising that dishes were not clean and putting them back in the cupboard unwashed. He also refused to use washing up liquid, which as he is an educated and scientific man always struck me as being very strange. He has now got severe memory loss and is sometimes aggressive and hostile, but is still able to eat and drink and to hold a conversation of sorts.

My mother I think started showing actual symptoms when she had a knee replacement operation at the start of 2009. After the op she was confused and couldn't remember things and it has become progressively worse since then. She now constantly repeats things, forgets things instantly, can't cook or cope with every day problems. She has just informed me on the phone that she has a plumber round looking for her watches both of which have gone down the loo, even though I am fairly certain that is one of her "fantasies"! On Tuesday she was insisting to me they had gone down the plughole in the sink, even though I showed her that they couldn't possibly have gone down there. However, on memory tests at the clinic she repeatedly scores over 25 out of 30 and the Psychiatrist keeps telling me she doesn't have dementia (just cognitive impairment). I am sure though she does.

Sorry for the long ramble. I wanted to illustrate how difficult it is to pinpoint these things, but I agree with AlsoConfused that the point at which you noticed the changes are as good an indicator as any, although I am fairly sure that being able to hide the symptoms is one of the aspects of this horrible disease.

Good luck with the memory tests and keep us up to date with how things are going.

Thinking of you, love R

 

[trakand01]

Hi
I agree with AlsoConfused that the point at which you noticed the changes are as good an indicator as any, although I am fairly sure that being able to hide the symptoms is one of the aspects of this horrible disease.

I have to agree with this, I think my Nannan hides things quite well, and perhaps has been doing for quite some while. She also has started saying that she feels 'too poorly' to do something she doesnt want to do, although I think some of this is made up - I dont think she understands what is wrong with her (she will scream and shout and fling her fists about if you mention dementia) but she obviously knows there is something. In her rather naive mind though, I think that means that she simply thinks she is 'poorly' and so saying she feels 'too poorly' will win us over. However she can never identify what sort of 'poorly' she feels - headache? tummy ache etc?

Sadly, we know nothing about her family history. Her mother died quite young when she herself was only around 10 I believe, and her father died of Cancer, as did the only Sister we ever knew. In her childhood she and her siblings were split up and shipped out to other relatives and so she only kept in touch with the one sister which she was 'bundled up' with.

The replies are interesting. It seems that perhaps it is a disease which is easily 'hidden' either intentionally or otherwise in people who have little or no requirement to involve themselves in the outside world on a regular basis. Nannan was a housewife, and occasionally did a bit of cleaning at the place where grandpa worked, so either she was in the confines of her own house, or she was in a building with my grandpa. Anything anyone asked her which she didnt understand she'd just say 'I'll ask Jack'. Things from many more years back like picking up the telephone (before wireless handsets, one with a cord) and holding it with the cord sticking out the top of her head, completely baffled as to why she couldnt hear anyone and things like that I guess could really be attributed to her 'dizzyness' or lack of technological awareness more than anything else!

 

[leslin48]

I can only go on my own experience, like your mum, my dad always sorted out the finaces so when he died i had POA and dealt with it all, that was 4 year ago, but 2 years ago she wouldnt cook or bake wouldnt do anything, we were forever telling her off for doing nothing, wouldnt have the telly or radio on just sat all day in her chair, we eventually found out she wouldnt go to bed was sleeping on the settee with a blanket.she then had a few obessions like wanting her handbag with her at all times, messing on with tissues and door locks,in the last year we used to bring to our house at teatime then take her home the following morning this was working ok at first, but after a year she got worse didnt know what realation i was to her but at the same time wouldnt leave my side, she has now gone into a care home,and still has her obsessins and of course repeating herself every five minutes, i know she is getting the care she needs but the guilt is still very strong, remembering the ticking off i used to give her for not doing things when really she wasnt doing them beacause she didnt know how to. thinking off you.

 

[Feezee]

What were the signs...

Interesting - do you think that a certain mindset/character pre-disposes someone to dementia, or that there are certain traits that are common?

My father in his youth was able to learn new things, studied to become an electrician and had a keen interest in social affairs and politics, but there was always a streak of "something" which meant we as kids felt like he was never really quite in the present. We used to say he was trapped in Ireland of the 1950s (he came to England late 40s).

He didn't seem to be able to "learn" anything from about 50 years old onwards - certainly couldn't evolve in his understanding of how quickly life was changing around him and what type of world his children were growing up in, and couldn't seem to take on any emotional lessons. He always had lots of big ideas for making money (that actually were so impractical they would never make more than pennies) and it often felt like there was a disconnect somewhere. You had to break things down into "small scale" for him to understand.

He always lived in complete chaos (like steptoe and son - no woman around) but looked after himself "enough" to get by. It was when I saw the chaos becoming dangerously chaotic, and he was losing the ability to understand what he could previously understand that alarm bells rang and I realised that all was not well (that and not knowing words to things I am sure he used to know). That was about 6 years ago, but I suspect that signs were there before this - maybe a couple of years before then.

So he was never conventional or ordinary. In fact I often used the word "Eccentric" to describe him to friends when I was growing up as I couldn't think of a more apt one that they would understand. I'll never really know but it has crossed my mind more and more recently.

Feezee

 

[Onlyme]

I first noticed it when Mum would insist she had never been told that information or be shown how to do things even though you had told her the week before. She did the classic dementia thing of mixing the phone and the TV remote up and not understanding the difference.

Mum still thinks she is just tired or that she is being made ill on purpose. She won't hear the D word near her and will never accept it if she is told.

 

[trakand01]

she wouldnt cook or bake wouldnt do anything, we were forever telling her off for doing nothing ... wanting her handbag with her at all times

Same here. Nannan used to be a wonderful cook but gradually stopped. She now claims she never liked cooking much, which simply isnt true. She's forgotten how to do it, and it's horrible to see. Grandpa is desperately trying to learn to cook, but he's 83 and it's difficult.

Also re' the handbag... Nannan stole another woman's handbag during a recent hospital stay...!

 

[Jancis]

I think you Nannan is very interesting the way you've described her. She reminds me of my great grandma's family, many of whom who lived very sheltered lives. Have you ever thought about researching your ancestry? I have a much deeper family connection since starting to delve into my family history about 2 years ago.

 

[alexp]

I can remember the exact moment I knew my aunt had a problem - we were chatting on one of my visits to her and I realised from what she was saying that she really thought the people on the television could see her and were speaking to her. This is a woman with a degree in chemistry!

It was a terrible moment because it was obvious something was wrong.

 

[trakand01]

Hi Jancis,

My dad has done a lot of research into our family tree, right up to around 1650... all except for my Nannan's family, that is, because it has been a complete taboo. She refuses to tell us anything or give consent for my Dad to research any further. My Mum has a memory of being a child, getting on a bus with her parents and a woman on the bus staring at them. Nannan wouldnt look at her, and Grandpa told Mum not to look either. Later, it transpired that the woman was one of Nannan's sisters.

What's frustrating is that I actually probably have a whole huge great family out there, yet there's just 7 of us dealing with the problems we've got now - me, Mum and Dad, Nannan and Grandpa, Mum's cousin and my partner.

Nannan is quite interesting... I think she's been in a bubble either self inflicted or enforced by Grandpa for decades. I do wonder whether perhaps her mental state would be improved now, had she ever had to 'work' her brain during her lifespan. I'm academic, and a great supporter of learning and furthering my career - the housewife's life is not for me although I appreciate we are all different for a good reason.

Some of the things she doesn't / won't do, I think are perhaps because she's been taught that they are 'men's things' - paying for things, being in control, looking after the garden etc... whereas 'womens things' are cleaning, cooking, homemaking and so on.

 

[cragmaid]

Hiya Trak...My mum ...well I know she was on the slippery slope for a good two years longer than her diagnosis. I first spoke to her GP about memory loss in April 2008, and if it was noticible then it must have been starting even before that. It wasn't helped by her having sight problems which have ended up with her being registered severly visually impaired(blind) because she blames her eyesight not being able to remember things. Me I blame her AZ Gremlins for stealing the information.

 

[Onlyme]

Some of the things she doesn't / won't do, I think are perhaps because she's been taught that they are 'men's things' - paying for things, being in control, looking after the garden etc... whereas 'womens things' are cleaning, cooking, homemaking and so on.

Mum still thinks like this when she can and as her dementia takes hold and she lives more in the past she thinks only men can help with money. Woman are there to bath her etc.

My FIL wouldn't let his grandson have a tea set and tea pot as an 18 month old as only women made tea and he didn't want him made gay.

 

[scarletpauline]

The first real clue was when my husband forgot to change his undies every morning, he would put yesterday's on. That was when I decided things weren't right. However now I know, things keep coming back to me which occurred before his diagnosis, I think dementia comes on slowly but surely, his dementia is Alzheimers. Love Pauline xx

 

[Norrms]

Hi

Hiya, i am sorry i am so late joining this discussion but as a person with early onset myself i thought i would have an imput.
The thing is, an early diagnosis is key to this, if things start to happen that are out of the ordinary for the person involved the Dr`s should not (But still do) just put it down to age!! I am lucky in respect of my wife was a care worker for thirty years so she saw the difference in me and took me straight to the Drs then the consultants.
If you are looking for similar things that happen to people or members of family it is important to remember that eveybopdy`s dementia is different.

I was diagnosed at 50 yrs old and i am still now only 53, hope this helps, Norrms and family xxxxxxxxxxx