what was the first thing you noticed that could be dementia?

[Olliebeak]

Reading this really shows how this evil disease shows its face in so many ways. With my OH - he lost the ability to hold a conversation and, always being one to tell rambling stories, this got to the point where it was just boring monologues (still is), and embarrassing to go out socially. The next thing was not being able to find his way in the car - I had phone calls to say he had not appeared to watch a cricket match With friends or at his hearing clinic appointment.

 

[Fiona F]

Looking back, I'm sure mum had signs of dementia - I'd say about 7 years ago, maybe more. Of course I didn't realise it at the time, but now I can see it. She lived on her own for a few years after my dad & later my granny (her mum) died. They all lived together. Every day when I phoned her she would say she'd "spent all day searching & searching" for whatever it was. It was annoying - I knew what she'd say before she even say it, but I didn't think any more of it.

5 years ago a bungalow backing onto our house came up for sale & she bought it (well, we did it all for her actually). We encouraged her months before the move to start sorting stuff out, getting rid & doing some preliminary packing, but all she did was make a lot of mess moving stuff about & never achieved anything. When I tried to sort things out with her, all she could do was pick things up & look at them - it was slow going. Every room was very cluttered with stuff & as I sorted out piles of clothes etc, & all I can describe as general 'stuff' I found she had been covering things up for years with flattened out plastic carrier bags. Heaps & layers of 'stuff' covered over with flattened out bags on the bed in the spare room & on the floor & in the wardrobes.

Jumping to when she was installed in the bungalow - it soon became clear something was wrong. I can now see that the move, the big change, was a trigger for dementia going to the next level. She was totally incapable of understanding or learning how to use the new washing machine, new cooker, the heating thermostat, & other things. All logic & reasoning had gone. We had countless 'training' sessions over several weeks, I put colour coded stickers on things for on & off / stop & start, & wrote big instructions but it was hopeless. The first time she changed the bin bag on the bin under the kitchen sink, I found she'd put the bag on the outside of the bin! When I asked her why she'd done it she couldn't work out why it was wrong. One day I found her with blue lips! - she'd used a pen instead of lipstick! She did the same with red nail varnish another time! That started alarm bells ringing. She started saying there was always a lady in bed beside her at night - at first it was her Aunt but then it just became some random lady. These hallucinations have continued & number of people increased over time, plus seeing bugs on the carpet, walls & floors moving up & down! Of course she is adamant it's real. I wrote to her GP confidentially with my concerns prior to an appointment & he called me in during the appointment - we didn't mention my letter but he said he'd agreed with my mum to have me involved & that she was going to have an 'MOT'. She thought it was wonderful, all this attention & thoroughness. After a series of tests, assessments & a brain scan, she was diagnosed with AD. She still doesn't know there's anything wrong with her, the diagnosis didn't mean anything to her.

That was a few years ago, she's 90 now, & her AD has progressed. A bad fall one night 2 yrs ago ended up with her in hospital for 5 weeks - since then she's had carers twice a day & me popping round after work, & on & off all day at weekends. Thank goodness she moved close by when she did! She's now very wobbly & doddery, has frequent falls (wears a monitor), & still spends all day "searching & searching" for things, moving stuff around & putting them in 'safe places', or blames "the people" for moving things, has lots of hallucinations & thinks all sorts of ridiculous things.

It's all very difficult coming to terms with the role reversal - she's the child, I'm the parent. She's not like my mum any more. I feel angry because I don't want things to be like this for her, or selfishly for me. I get frustrated & upset & feel a whole shed load of guilt.
It's a horrible disease.

 

[Bunpoots]

The washing machine! My late mum would’ve asked my dad to sort out the washing machine if anything went wrong with it (like a blocked filter) but one night my dad rang me and asked me to come and look at the machine as it was flooding onto the kitchen floor. I didn’t think much of it at the time even though I knew when he insisted that “your mum always dealt with theses things” that really she would’ve asked him to sort it out...

There were other signs but I didn’t want to see them.

 

[MalcW]

H

I was pretty sure where we were headed five years before diagnosis - it took a very long time to persuade him to request a referral to the Memory Clinic. There had been lots of minor things - eg uncharacteristic impatience, suspecting people's motives, over-tipping, steadily detaching himself from friends and wider family - but the key thing was when I realised his sense of direction was shot. Looking back, I reckon the earliest signs were there possibly as much as fifteen years ago. Lockdown has done him no good at all (I can't say it's done much for me either) as we can't go out and do the things we would normally do. His walking pace had already declined significantly but now he is unbelievably slow and stiff - you'd think he was at least ten years older than he is. I hadn't thought of this as a sign of dementia but it was driving me fairly mad - thanks @Duggies-girl for the useful insight about perhaps needing to see me in front of him.

I'm pretty sure that needing to be lead is a major symptom of dementia. I do a lot of work training bus drivers in disability awareness and all of the videos I use show the sufferer following the carer and getting lost when the carer got out of site. My wife is exactly the same. Also, when I get up to make a drink or to go to the toilet, she will be there behind me. Hasn't lock down been a bitch!! In addition we are trying to move house and have been messed about by our buyers for about 10 months. I reckon that has put her at least 2 years closer to the nursing home. My LPA has finally been certified, so this means I can now remove her from the problems of this situation. Not something I ever wanted to do as we've always taken all those sorts of decisions together, but "needs must"

 

[MartinWL]

I began to notice forgetfulness, mild at first, and getting stories and facts muddled. It has been very gradual but after an operation for an unrelated physical health issue things accelerated. Getting in a state about minor things going wrong, having trouble doing some routine tasks etc. If I stay the night he always gets a cup out for my breakfast tea but I always have coffee in a mug at breakfast!! Other minor things too, unable to get used to changes in where things are kept, for example. Lots of completely unrealistic talk about things he needed to do and planned to do.

 

[Veritas]

H


I'm pretty sure that needing to be lead is a major symptom of dementia. I do a lot of work training bus drivers in disability awareness and all of the videos I use show the sufferer following the carer and getting lost when the carer got out of site. My wife is exactly the same. Also, when I get up to make a drink or to go to the toilet, she will be there behind me. Hasn't lock down been a bitch!! In addition we are trying to move house and have been messed about by our buyers for about 10 months. I reckon that has put her at least 2 years closer to the nursing home. My LPA has finally been certified, so this means I can now remove her from the problems of this situation. Not something I ever wanted to do as we've always taken all those sorts of decisions together, but "needs must"

'Needs must' indeed. We are at an earlier stage in the process so we haven't got to the stage where he follows me around the house, but I reckon that will come. I feel for you on the moving house bit - I managed to move us before he was diagnosed but I had to do absolutely everything myself because he simply couldn't get his head round it. At one point he insisted that he hadn't seen the house we were moving to, when of course he had. Another pre-diagnosis symptom in his case was forgetting really significant conversations, eg that a family member had died by suicide.

Interesting about the training videos - you could well be right. I'm beginning to realise that anxiety is a major feature of this disease.

 

[White Rose]

I remember the slow walk with dad always behind me and no matter how much I slowed down for him to catch me up, he would slip behind me again straight away. I think he was trying to keep me in his sight.

I recognise that well! My partner was always walking behind me, it used to drive me mad. Strangely he doesn't do that so much now and I tend to take his arm so he has to walk with me - it's such a slow walk though.

 

[UncleZen]

The first thing I noticed was when my wife repeats an anecdote in a conversation, then repeated it again a few mins later, then again...even after I mention that shes said that, it still comes out again a few mins later.

Only today we went to B&Q, half way there she says "where are we going?" And "Why?"

 

[MartinWL]

'Needs must' indeed. We are at an earlier stage in the process so we haven't got to the stage where he follows me around the house, but I reckon that will come. I feel for you on the moving house bit - I managed to move us before he was diagnosed but I had to do absolutely everything myself because he simply couldn't get his head round it. At one point he insisted that he hadn't seen the house we were moving to, when of course he had. Another pre-diagnosis symptom in his case was forgetting really significant conversations, eg that a family member had died by suicide.

Interesting about the training videos - you could well be right. I'm beginning to realise that anxiety is a major feature of this disease.

I'm noticing high levels of anxiety as well, this does seem to be a feature. Maybe others have had this experience?

 

[canary]

Anxiety is definitely a feature of dementia. They reach a stage (usually about mid-stage) when they cant remember what has happened properly, so they are unsure what to do and/or how to do it and consequently, they become anxious. Another reason may be due to them not being able to understand that they have something wrong with them. They are aware that Something Is Not Right, but are unable to understand that this Something is actually them, so this unresolved awareness causes anxiety.

Often, simple reassurance will be sufficient, but if there is real distress, medication is the answer - often an anti-depressant will help.

 

[DaveCr1968]

Hi there

With my dad, it went like this. We had suspicions his memory was getting bad but he never had a great memory anyway. It came to a head playing golf in 2012 when he was forgetting shots and was just making up the number. I don't mean taking shots off; he was adding more on (very rare for golfers!!!) to compensate.

We had him assessed and he had mild cognitive impairment but he was still active and doing his main hobbies (wrought ironwork, bell ringing, bowls and golf). He started lagging behind when walking a couple of years later (got worse after a TIA) and then started to drag one foot and shuffle a lot. I would guess he had his first fall in about 2015 and started to lose interest in his hobbies. It has progressed steadily to him doing nothing but there has been an acceleration of the decline over the last 6 months or so. He now has severe dementia and lives decades ago about 90% if the time. I'm convinced he is seeing things, particularly when watching the TV.

Regards

Dave

 

[Hazara8]

The whole narrative in respect of an awareness of changing behaviour in the one living with a progressive dementia, evolves from a logical perspective, a comparison of " what was" with "what is". The latter is the 'reality' however strange, unpredictable, frustrating, exasperating, simply exhausting. All of these relate to YOU the carer. The loved one living with dementia, when the disease has entered the stage when such behaviour becomes like a broken record, has no association with any of the factors which challenge the Carer. Very very difficult to put into practice, but a complete change of mind and attitude becomes essential if 'management' is to be achieved.

This is precisely why dementia remains misunderstood outside the domain of direct care or relationship. This is why the inevitable entry into Care by way of the Home takes place. Not, as can be so easily suggested, that it is the easy option when things develop. No, all the deeply felt love and affection for a person translates into " best interests" once personal care becomes impossible. If funds permit that might allow Care and Nursing at home. But the facts remain solid and intact. Dementia has no cure as yet and medication is part of the management when required, but not the ideal when " comfort" stemming from the heart and not simply a practicable approach, can work miracles.

In normal day to day living, we range emotionally across a broad spectrum of thoughts, desires, expectations and anxieties, mixed with routine and the accepted mundane tasks and so on. Then leisure finds its place and life goes on etc etc.

The " dementia life" is removed from all that normality and inhabits an unseen world which ranges across the ever changing spectrum of anxiety, depression, blissful " in the moment" periods, a reliving of a past in the present which is " real ", pain which cannot be expressed, fear, confusions, a profound need for feeling safe, a heightened sensitivity to sounds, colours, water, light, the list goes on and on. Yet, within all of this resides a human being. A spirit, able to express through a single tear, or a gentle smile, the person inside. That is where one focuses every vestige of one's attention and one's care. The actual person and the person you know to be there, despite everything which denies so, is the fundamental in all of this. And if that is expressed in the duration of a whole demanding week of exhausting Care, by the holding of a hand and the whispered endorsement of an indestructible love, then your humanity overrides the dementia and in that moment, nothing else matters whatsoever.

 

[Grable]

After having children, Mum had always struggled with her weight. I first noticed something was wrong when she started telling me about meals she'd been out for and how much she hadn't eaten. ("I had fish and chips, but I had to leave half of it," "We had a cream tea, but I only ate half of one scone.")

Then there was the game Upwords. It was a favourite game of ours when I was visiting. The first problem was her putting the tiles on the board upside down, and soon after she had no words to put on at all. We were doing Christmas cards and she couldn't remember where to write her name (not long after that, she couldn't remember how to write her name). And, as Duggie's Girl mentioned, always walking a few yards behind me, no matter how slowly I was walking. Oh, and she defrosted the turkey two weeks before Christmas...that was an indication, too!

 

[Ding Dong]

My Dad was older & had deteriorating physical health, including diabetes , sciatica, macular degeneration & eventually becoming blind. He could be very irritable. So when my mum, aged 73 , was anxious & tearful we thought it was due to that.
Then we started to notice other things that made us feel it was more than depression over my Dad’s health.
She couldn’t make simple decisions e.g. Would you like a drink Mum?
Are YOU having one
Do you want tea or coffee?
What are YOU having?
The worst example of this was when she was asking complete strangers in a buffet queue what she should eat.
Mum couldn’t remember the way to the dining room on holiday, even after whole week.
She kept fidgeting. Constantly checking her pockets & handbag.
What are you looking for Mum?
Nothing.
She kept thinking she had lost things. We turned the car round & went back to look for a cardigan she was sure she had left in a cafe, only to find it had been at home all the time. Also she regularly said she had lost her shopping bag / hand bag when out & I had to assure her we had not taken it with us.
Mum lost ability to work household appliances. Toaster, TV remote, Video. Washing machine. And my Dad couldn’t do them because he was blind. More tears.
We discovered she was hiding mail. All letters were hidden under the cushion of the seat of her arm chair and she was sat on it, presumably because she couldn’t cope with them.
Then she started seeing marks on walls & on clothing which were not there. She sometimes thought they were dirt & tried to rub them off, other times she thought they were a pattern on the wall or fabric.
When Dad went into hospital she clearly was much worse than we had thought. Without him to steer her, she didn’t wash, dress or eat. Every day when I went to pick her up to go to visit him, she would still be in her nightie. Phoning her to remind her didn’t work
No one in their retirement flats would believe anything was wrong as she could make an effort to be normal for 15-20 minute, then would say she was tired & retire.
She kept insisting she was fine to the doctor & did well on memory tests so the doctor only treated her for depression for over 3 years. I kept a diary of her odd behaviour & the doctor eventually referred her to the memory clinic & for a brain scan which confirmed vascular dementia. By then she struggled with memory tests & would look pleadingly at me to help her with the answers.
Mum became much more unpredictable, reminder notes didn’t work & I had to give up work to look after them both. Eventually her anxiety & frustration ended in her becoming very aggressive, no doubt aggravated by my Dad’s frustration with his pains & blindness. After several incidents storming off out of the flat at night & attacking both Dad & myself, there was a more serious attack & mum had to go into a care home against her will & Dad died a few months later.
Mum took 3 or 4 months to settle, but gradually, without all the stresses at home & aggravation of trying to cope with Dad & his illnesses, she became my sweet tempered mum again. She lived in care for 8 years, so we believe had dementia for 11 years. She deteriorated slowly & definitely, but could sing, had a sense of humour & read headlines in the newspaper right to the end.

 

[Duggies-girl]

@Ding Dong That is a really good description and so like my dad. The inability to choose between tea or coffee and checking things like his wallet and counting his money.

Dad didn't hide letters, he would keep them for a day then destroy them into a hundred little pieces which was problematic if I didn't get there in time.

 

[Bythspirit]

First noticed? I can honestly say that it dawned on me that my hubby did not know which Bus Stance to go to get home! It was like a light bulb went on in MY head and suddenly many things fell into place. (We had moved to smaller town in 2011, I had always dealt with our House Sales and Moves, but hubby had probs keeping up this time,, however I had thought it would settle down after a few months) Result: Trip to Doctor, a visit to Consultant and a brain scan confirmed that hubby has Peripheral Vascular Disease which is causing Vascular Dementia, this was at end of 2012, he was 68.

So many things in this thread remind me of how things are and have been for us and although I've heard said that everyone with Alziehmers/Vas Dem are different, but I've always found the commonalities in symptoms very very similar. Finally can I just say that at the beginning of the Lockdown, I finally felt part of the world because everyone else was feeling isolated, lonely and frustrated at not having the freedom to do what they'd like to!! This is the usual world of myself and all other Carers, sadly.

 

[Agzy]

Serious mood swings and dietary changes

 

[millalm]

While making a family festive dinner in my Mum's kitchen I asked her to get me the 'peeler' out of the drawer. As I watched she moved utensils around, and then asked me 'what did you want?' I said 'the potato peeler Mum' She continued to rummage in the drawer then eventually looked at me like she was a small, lost child and said ' I don't know what that is'. Being from an Irish family she had used a peeler a million times I'm sure but she was unable to process what it was, and what it looked like It was like a bell went off in my head and I realized there had been many minor signs that I had missed,her inability to organize festive meals, trouble doing more than 1 task at a time, and making multiple lists on scraps of paper as 'reminders' which would turn up in strange places, characterized by letters that were a cross between cursive and block, none in a straight line. The constant rummaging, looking for things, moving things around without reason happened very soon after that. It was 8 years ago , around the time my Dad died.

 

[malomm]

My wife has always been very very careful with money. Late in 2008 I lost her in St. Paul de Vance, and she turned up later at the car park with 2 very expensive paintings, both the same. Early in 2009, supermarket shopping,she couldn't remember which banknotes were which. She asked me to take care of all our money from then on, and I knew something was very wrong. At that stage I'd never even heard the word alzheimer. Finally diagnosed in 2011.
Now in the later declining stages, but still collects coins if she can find them.
Keep smiling, have a laugh, take care.
malomm.

 

[DaveCr1968]

I'm not in a hurry for a diagnosis - unless his driving deteriorates. I just get frustrated because I'd like the house sorted so that when I retire in December we can enjoy our time together

A few years ago, my mum noticed that my dad was driving less and less. They would normally share the driving (he would drive there, she would drive back) and it just got less and less. Whilst the actual driving (going, stopping, quick reactions, etc) was still good, there were a couple of occasions where he got disorientated in relation to where he was. Several months after that, he just stopped driving completely (of his own accord) and at his next licence review, we did not renew because at that point, it was not safe him being on the road. That was about 3 years ago but his dementia has got significantly worse over the last 12 months or so.