The very very Early Signs which are very hard to detect

Ladywriter1968

Registered User
Oct 2, 2009
438
0
London UK
I know I put up a post similar before but I wanted to mention the very early signs of this illness which others around simply dont see or suspect anything being wrong, especially if you have never been around anyone with the illness.

Firstly, my Dad is in the later stages of it now, he cant walk anymore, has trouble seeing properly now, very weak, always getting UTI infections and generally unwell. He has to be encouraged now to eat and drink to, just forgets as quick as told. Has a catheter in and has had tummy infections a lot to. Although its hard I just have to block out my emotional side when I visit him. He does not say much now either and its very hard to get many words from him. Even when asking him a question the answer will not relate to the question.

But here are a few very early signs going on my Dad when he first started with it.
My Dad previous was very house proud and clean, he even used to iron his socks and pants, he was very fussy with everything. I think it may come from him being in the army years before. He was always vacuuming as well. Do his own cooking and everything really. Shoppping etc. He was an independent man really.

But then, these things he used to do started gradually stopping.

You see them wearing same jumper or trousers every day, then it may appear to have a hole in the jumper but they don't care or not aware its there, the shirt could be stained but they sit there with it on. When previous they would have not done this. The house becomes a mess. They may sweep stuff across the floor and leave it there, instead of picking it up and putting in the bin. The bin could be over crowded with stuff. You could find bits of food down the sofa. Washing left out dirty.

Then maybe they are buying the same food x 10. Instead of a variety of food, like buying 10 packs of ham and wasting money. Then you notice in the fridge that the ham has not been eaten and gone off. Drinks may have gone off. They lose weight and seem to not be eating properly. The fridge may look empty as well. The cupboards which old food in, like cornflakes out of date and been in there a while but no new stuff to replace it.

Washing powders may not be bought or old ones, then you ask, so what are they using to wash their in then? Or they may look like they have not washed or you can see they have not used the bath for some time.

They start to become slower in movements, like I noticed once it took Dad over 15mins to take a cup of tea. As he was moving very slow, maybe had to concentrate on what he was doing. So making tea or dinner or putting strange things with it, like with Dad he cooked a roast and by time he did the gravy the dinner was cold, he brought the dinner in half hour before making the gravy. Leaving the gas on more then once as well. Once I saw fat floating on the tea as well. Maybe he didn't wash the cup properly or something. Sense of smell starts to go. He was once cooking and it smelt bad and had gone off, but he could not smell it at all, but everyone else could, It stank the house out.

The conversation becomes less, if they was chatty before now they go very quiet, especially in groups of people. And if people all talk at once they put their hands over their ears and say, its all to loud or much or something like that, so cant handle all the information or noise.

They keep forgetting stuff all the time, or may have seen a programme lots of times and then suddenly say, I have not seen that before. or the neighbours cat may keep coming in and she ask him not to feed etc, but he keep forgetting and still feeds it.

Paying bills, arranging things, or booking things, cabs etc, this starts to become limited to and find when they go out, they rely more and more on their mates to do all this, ring up for cab etc. Or the address book is next to the phone yet they ask someone else to find it or phone for them. Or where is the address book when its next to the phone.

They may tell the same story over and over again and forgot they told you already. Their movements become slower and everything they do takes twice as long as before. They may start to lose their money or make new found friends that just take their money. But these type of friends always come with baggage and problems and these types of friends generally look scruffy, untrustworthy and half are probably criminals. They will say they lost their money in the street or down the sofa. Which could true. The first time, but when it keeps happening all the time then you know they are giving it away. They either have forgotten or they know and dont want to say.

You find them sitting for long periods starring at the TV but not really watching it. Or falling a sleep a lot in front of TV. Asking you to change the channels for them as they cant be bothered or cant work out the remote control any more.

Forget they saw you a few hours ago, once when I stayed over at Dads he forgotten I was there. Also they may go in the garden and just stand there starring into space. or trying to chat to passers by even. Become withdrawn.

Its a horrible illness and very slow process with some and fast with others. But if you never been around anyone with it, then its very hard to detect at first.

I hope this helps anyone who is having problems with a relative etc.

If you suspect your relative, friend of having this, go with them to the doctors and tell doctor you want an assessment on them for memory. It may not even be dementia but another illness. But at least after the tests the answers would be there, and to know what the next step of care if.

Hope you all have a happy christmas.
 

beech mount

Registered User
Sep 1, 2008
1,524
0
Manchester
Also to add, in my wifes case before there was any other signs of this illness,we were on holiday in Italy and in the evening decided to have a walk on the beach (Moolight etc) as soon as she stepted on the sand she started screaming,could not stand the movement under her feet also later on she became terified of Escalators,hope this helps others.
John.
 

CraigC

Registered User
Mar 21, 2003
6,633
0
London
Interesting.
I did not see a lot of these traits in dad in the early stages. He didn't repeat himself he wasn't obviously confused or muddled. Didn't do things more slowly in fact if anything he kept speeding up. However I agree on hindsight that there were early signs, we just weren't looking for them.

There is one thing that I will always remember about the early stages. Dad would stare at an object momentarily and look confused. It was as if for a few seconds he did not know what it was for. A good example is car keys, we all lose our car keys or forget to pick them up when we leave the house. Dad would pick them up and just look confused, either unsure what they were for or why he'd picked them up.

It is one of the things that makes early diagnosis so difficult there seems to be no classic behaviour changes or even a classic progression.

At the moment there is a TV campaign to raise awareness and to encourage people to get early diagnosis. I'm sceptical about this message to be honest. On the one hand I agree, getting earlier diagnosis may help you access drugs that help delay the progression or get access to support. However, in dads case it wouldn't have improved his quality of life - he had at least a year of two of not knowing he had Alzheimer's and he enjoyed those years. Early diagnosis would have robbed him of another 2 years in my opinion.

Just my thoughts
Craig
 
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fiitay

Registered User
Oct 25, 2011
111
0
57
Staffordshire
I agree the earlier the diagnosis the better. Mum was worried about her memory as my Nan had dementia.
I went with her to the GP and they did the standard memory test which she passed with flying colours. The bit where you have to take 7 away from 100 and keep going she was at 50 something while I was still on 93 lol.
We went again 6 months later to a different GP in the practice and she passed again even though her memory was terrible.
6 months on another GP and he just asked what was the problem and when Mum said we'd been to a party and she couldn't remember her nephews names and was worried, he just said you've remembered you went to a party what's your problem!!
6 months on we took Dad too this GP was fantastic, just asked for a couple of instances and referred her straight away to the Memory Clinic where she was diagnosed and started on Aricept. She still passed that stupid test though. I just wish we'd seen the last GP first so she wouldn't have deteriorated for 2 years.

I think if you or someone you care about is worried about their memory keep trying until you have an answer one way or the other.

Fi xx
 

Bobbi77

Registered User
Dec 7, 2011
2
0
Hi this is my first post. My mother is 84 and although has not yet had a formal diagnosis of dementia, has displayed several of these symptoms/signs. I admit that I possibly buried my head in the sand and put a lot of these issues down to her declining physical health and mobility. I assumed that the repeating of stories etc was just typical of "old age" and until very recently dementia was not something that I associated with my mum.

However, since I have accepted that this is possiblythe case and have alerted the GP to the memory and other issues they seem to have increased significantly.

One (of many) examples is her obsession with having enough food to feed her cat and dog. My husband I always ensure there is pet food in the house but were alarmed when she used 14 days worth in a week recently when she assured me she feeds them only once a day. I have had to resort to "hiding" the pet food and telling her that I am now in charge of feeding them when I am there in the evening as I worry that she will fall whilst bending to put the bowls down (which is not technically a fib). Despite this I receive a call from her daily telling me she has no food for them. I literally wait for the call. She has a carer twice a day at the moment and I go in the evening to make sure she has an evening meal which she very rarely eats (she is under the GP for her weight loss as they are very concerned about this plus her lack of appetite and we are awaiting test/x-rays etc)

She always had a neat and tidy house and she was very particlular but now when I think about it this has declined greatly over the last 12 months. I know she isnt as mobile and I do as much as I can while I am there, but the most significant thing about this is the fact that it did bother her that she couldnt do it but now she doesnt seem bothered about it. I could go on but I'm sure everybody reading this will know what I'm saying.

I just wanted to say thank you for this post and I will be bookmarking this site as from the threads I have read so far I am almost certain it is dementia my mum is suffering with.

take care all

Bobbi x
 
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Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
Bobbi, we have all been through this, it rings so many bells, you are in good company. Stick with us, we will do our best to help you out.

Love

Margaret
 

Ladywriter1968

Registered User
Oct 2, 2009
438
0
London UK
List Is endless but to name a few

Dads Case: Early stages
When I stayed over I said to him I am going to bed and he said, why was I going upstairs to bed in the cupboard.
Started with Forgetting general stuff, day to day
He started having same clothes on every day and shirt had holes in it
Didn't eat much and started leaving gas on a lot
Before he was very chatty and started to become quiet
If people all talked he could not handle it or would sit quiet in another world
Once when was in hospital rang me and said he was in a cell in a basement and to add he had no memory of this afterwards.
Became slow in movements, 15mins to make a cup of tea etc
Shopping he bought 10 packets of ham and nothing more
Found mouldy food and drink in fridge
He also put Ice Cream in the Fridge and left it in the cupboard


Mid Stages:
He made these new bad friends that just went round there for money they borrowed
He started to sleep downstairs on sofa and said the stairs were miles long
These new friends were always there, every time went there another new face there
Started hallucinating and said there was people in tents living in the road
The TV came out at him and he could not see it properly
His walking became slower and he could not handle finances or shopping any more
I think he started to forget how to use the phone but not sure
Sat in chair for hours not moving at all or hardly eating
His mate told me he went to Dads one day very early and Dad was standing front garden staring into space
Saw his toe nails in hospital and they were very long and had not been cut in months
Yet he still shaved himself and cleaned own teeth etc

Late Stages:
He went from being able to walk, to using a walking stick, then had broken hip and had hip operation, after that using a zimmer frame briefly, to now not being able to walk at all, they have to hoist him from one chair to another.

From independence to a catheter and then telling care staff when he needed the toilet for others, and now had a pad on and does not know when he has been now.

He went from being very chatty to silent. Even when I visited and a friend came a few months ago my Dad was chatting to her walking around etc. but since I been visiting weekly he now says nothing and when spoken to he finds it hard to understand what you are saying or mean.

I guess its like baby state in reverse.

They said he can also be violent when wanting to shave him and he gets frustrated at times and wants to be left alone. If he had his way he would stay in bed perm and not move.
 

Margaret W

Registered User
Apr 28, 2007
3,720
0
North Derbyshire
First sign with my mum was she couldn't count out £25.60 in the supermarket. She had a £20 note, £5 note and 60p in her purse, but had to offer two £20s. So her purse was overloaded with change. She then got obsessed with counting the change, down to the pennies. With the question, Why have I got so much change in my purse? I used to swap it back to notes for her.

Also the actual shopping in the supermarket. She had bought the same brands for years (like Kelloggs Cornflakes) but suddenly bought supermarket own brand. Not saying that was bad, but just a sign of change.

Third warning sign was writing a cheque. She had booked a holiday with a friend and had to pay the deposit. The first cheque had no payee, the second had the amount in words written in figures, and the third had her own name as the payee. Only found this months after her death, 3 years later.

Margaret
 

Ladywriter1968

Registered User
Oct 2, 2009
438
0
London UK
Happy christmas and new year

I hope that everyone has a nice christmas day and new year and that maybe next year things will be brighter for us all.
 

Purplegranny

Registered User
Dec 28, 2011
3
0
Early signs with hindsight

Reading all the posts has left me feeling so sad. My mother in law had so many of the early signs, but sadly dad in law insisted she was just being difficult (she was never an easy person to get on with). They lived in shelterd housing and were quite protected from the outside world luckily. Mum(in law ) was assessed several times, and was offered a place in a day centre to give dad a break, she always refused to go when they came to collect her. Then dad had a heart attack, and because mum couldn't remember how to use the alarm system or the phone,it was a long time before help arrived. While dad was in hospital it became very clear that he had been caring for mum and her illness for a long time, and because she was always asleep in bed whenever we were there, and he would tell us not to wake her, we never understood or knew the extent of her dementia. As I say hindsight is great. My own mum started to suffer, but this time I recognised the signs and tried to get help without success. She died from bronchitis and heart failure, mainly to being so weak as she would not eat or drink. My mother in law is in a care centre, but over the last couple of weeks has deteriorated she no longer talks to me when I visit, becomes very angry when her mum hasn't visited or is not with me, she doesn't recognise her son(my over half) he finds this so hard to take,he also blames his mum for "killing" his dad. Whew sorry this is a bit of a rant. It's just such a horrible thing to have to happen to people, it destroys the ones you love, and leaves a different person behind.
 

smashie

Registered User
Dec 13, 2011
51
0
south yorkshire
Reading all the replies to this thread, I would like to, if I may,. share our families experience so far., and ask for anyone to please give me their honest point of view. I see many familiar things written here.

Despite having regular visits from a mental health nurse and on occasions a psychiatrist, Dad's depression and anxiety seemed to get worse. Over a period of 18months, medications were prescribed, then increased, then changed, finally he was given lithium. Still with no improvements.

Everyone was baffled.

He'd months previously taken to his bed, saying he was tired, but on checking him frequently, he would be laid staring at the ceiling ~ thinking ~ he would rarely get up, but when he did he'd just lay on the sofa staring at the tv.

Conversation was almost impossible as he'd become vacant looking, disinterested, and often just get up and walk off leaving whoever, talking to themselves.:eek:

He gave up driving saying he couldn't concentrate (mum reckoned he was just saying that as he couldn't be bothered to go to the supermarket. She doesn't drive.)

I noticed he wasn't bathing on a regular basis, or changing his clothing, underwear etc his nails were dirty, his clothes bobbled and creased. Dad had been the kind of man to be up early wash, shave and dress, always a shirt, tie and jumper, (quite vain if I'm to be honest) ~ he now looked bedraggled. Mum was so upset, for any suggestions she would make regarding his appearance would be met with an angry reply.

The love of his life has always been his garden. Owning the bungalow from new it had taken a lifetime of hardwork to get it looking as he wanted it. It's a very large area and needed attention in small doses, daily. He refused to go into his garden ~ shrubs grew, roses died, grass (usually mowed with stripes :rolleyes:) became overgrown and yellow, he had no interest at all in it.
It has taken me 2 years of back breaking work to get it back to how it was, thinking this would ease the worry over maintaining it himself...has it? errr noooo:(

He began obsessing over things, eg; the new central heating boiler, convinced it wasn't worth the money he'd paid, that the engineer was a 'cowboy' (so hurtful to the young man as he returned 3 or more times to explain the workings to dad who literally couldn't comprehend any of what was being said, but argued the toss anyway!!) and strangely enough it was the engineer's reaction to Dad that brought it home to me that there was something very 'wrong'....he spoke 'over' dad, to me, as if he was aware that dad had a problem understanding. That sounds a stupid way of putting it, but I hope you know what I'm trying to say. ..the way he looked at dad, the way he spoke to him, slowly,carefully, as if dad's illness was so obvious, it shocked me if I'm honest.

He constantly faffed about with the thermostat and drove everyone to distraction with his never ending obsession.

He became confused with the tv remote, no longer being able to 'work it out'.

He moved on from the central heating to his financial affairs, and to this day is obsessed with the subject. 100% convinced we are all in dire straits and we'll lose the house and end up on the street. There is no reasoning with him.

He has always had an unhealthy interest/obsession with death for as long as I can recall (I'm 51) but he began to lay down with his arms crossed over his chest,stating he was dying, would say goodbye in a tone that would suggest a sincere 'goodbye', then ignore us totally for hours on end...it was at this stage I called in an ambulance, dad was admitted to a mental health hospital~that was 4 weeks ago~ he has refused certain meds, his appetite is virtually non existant, he's lost a further 10lbs since being admitted, the staff have a battle with him daily to get him out of bed,washed,and dressed.
He became paranoid~ he said staff members were going to kill him,his room was bugged,his food was poisened, they were medicating him behind his back to sedate him,everyone there was 'in' on the 'plot', He fought sleep at night so he could keep a vigil on the 'goings on' in the hospital......

He has become 'impatient', frustrated, withdrawn~choosing not to socialize with the other patients as he feels he 'frightens' them by his appearance. He's lost quite a lot of weight and is convinced he has also lost height and is shrinking nightly due to his 'nerves'~ he's been on risperidone~ is now on Olanzapine.

we were advised to stop reassuring him that all was ok because all that did was infuriate him, set him off in an agitated state (he's even raised his hand to both mum and I) and he wouldn't believe anything we said anyway...so that's what we've done, stopped the reassurance...so now he won't talk to us :confused:

I could go on and on and on with examples of changes in his behaviour......we haven't been given a diagnosis proper. severe depression with paranoia AND early stage dementia have been mentioned. Ct head scan showed 'minimal' changes in the size of the brain.......

The medical staff are fabulous. The hospital is small, cosy and very friendly. It's spotlessly clean and we couldn't wish for dad to be in better hands~but crikey it is such a massive learning curve for mum and I, especially as we haven't been actually 'told' he has dementia, we do what we can (which often turns out to be the exact opposite of what we should be doing and saying lol), I read many of the threads on this wonderful site and I'm sure you'll agree that dad does display signs of dementia, it is so difficult to know what step to take next. I've read on here that a diagnosis can often be a long time in coming, how on earth does anyone 'manage' in the meantime,ie; do you think I'm wrong in 'presuming' dad has dementia? am I barking up the wrong tree? I feel like I'm going round in circles and repeating myself in every thread I write or reply too, I am so sorry if I'm out of order in this way, but I guess in looking for help,I'm actually looking for answers and I'm aware these can only really come from the hospital, but I so appreciate any kind of advice you give.
Heartfelt thanks in advance xxxxxx
 

smashie

Registered User
Dec 13, 2011
51
0
south yorkshire
SINCERE APOLOGIES oh my word....having just posted the above reply, I've seen the flipping length of it...I am SO sorry....I did not realise I had gone on and on and on....I am so embarrassed.........
 

Dill

Registered User
Feb 26, 2011
355
0
England
Hi Smashie
Please don't apologise for the length of your post, you explained your situation clearly and that can take time.
It sounds like you have been given a diagnosis of sorts, but one that could change at a later date when more information has been gathered.
My father was diagnosed with Alzheimers within 9 months of showing symptoms,after a brain scan, but as Az is more common than some of the other dementias that may have made things easier. His symptoms at first were similar to depression, it was only when that did not improve that we became concerned.
I do not think you are wrong in 'presuming' your dad has dementia, thats what I thought early on with my dad and I think it is a case of self preservation - trying to prepare yourself for the worst.
I hope things improve for your dad and that you and your mum can find some comfort and support somehow.
 

smashie

Registered User
Dec 13, 2011
51
0
south yorkshire
Do you know what? I am genuinely deeply touched by your replies, you are so kind. Thank you for letting me ramble on, I think that probably most people on here have felt the way I'm feeling at the moment, lost and looking for answers,moral support and acceptance.
I've read lots of threads and am aware of some of the things to come, but right now, I honestly am in awe of many of you, how you cope and the lengths gone too for loved ones. What comes across the most, is just how much the human soul can actually take when supported by like minded,honest caring folk.
This thread sounds mamby pamby, I don't mean it to, I really just don't know how else to say what I've just said. You are all fabulous. Thank you xxx
 

HayleyMH

Registered User
Dec 29, 2011
5
0
All of the above "signs" sadly seem to be exactly what my Dad of 62 is showing. He no longer can use his phone, remote, electric meter, shower but of course they have a fault or don't work it is never him. He remains on the sofa all day/night is withdrawn, repetitive of certain phrases and stories and he neglects all areas of his personal care. On top of this he is an alcoholic and all services including mental health services GP etc refuse to engage due to this. He has a number of so called friends who " manage" his money and basically feed his habit. After numerous falls, wandering at early hours and blackouts he has had over 5 admissions 2 hospital.

1 nurse asked to have a quiet word, she told me they feel he has memory problems/korsakoff dementia. I fought for help from care managers, alcohol liaison nurses and mental health services but Dad each time was discharged and I was told until he stops drinking they cannot help. Sadly Dad no longer seems to really be aware of anything really. He just about manages to get his money from the bank as it's a paying in/out book but bills etc never get paid properly until I sort them out again!

So we continue the groundhog day of drink, same moans and groans, repetition, denial, confabulation, confusion until he ends up in hospital again.This was a gent who loved life,people and was always on a mission up o some kind of mischief. No more as the sofa awaits and endless faffing with the cd player and remote saying they don't work.

Ps I'm a mental health nurse who works in dementia field yet am not helped or listened too. This real life story will continue as you all know until something happens and people will have to listen, I hope! X
 

smashie

Registered User
Dec 13, 2011
51
0
south yorkshire
Oh Hayley,I'm sorry for your situation. I don't know what I can say to you, I'd like to think of something deep and meaningful, but anything I've so far thought of, sounds trite or demeaning.
Please know you will be in my thoughts, your situation must be so stressful.I hope someone, somewhere can offer you the help you need.
Look after yourself.xx
 

HayleyMH

Registered User
Dec 29, 2011
5
0
Thank you for yr kindness, I think I just need somewhere to vent at times as I think my partner and friends are probably sick of hearing it. Sometimes people ask how is Dad and hope there will be an improvement or good news but sadly I know as many of you do it's a long road with not many positives.

I continue to do as I do but I also ensure I keep well as I say to all carers it's vital to look after yourself 2 x
 

Jancis

Registered User
Jun 30, 2010
2,567
0
70
Hampshire
Only just caught up with this thread and just had to add some thoughts rather belatedly.

My uncle lives far away from me and my mum and our family so we didn't notice many of the early signs of his illness but looking back with hindsight many things that have been discussed here apply to my relative's decline. Does anyone think as I do that things go wrong because of emotional and environmental reasons and that this then impacts on physical and mental health? Well yes, of course it can and does - but what I wonder is, would the disease have taken hold so quickly had circumstances been different?

My uncle's ill health seemed to have deteriorated rapidly but in fact it was probably a very slowly progression. He attended my dad's funeral in Oct 2008 and appeared to be very fit and well but only 3 months later he was sectioned. We think his ill health was brought on by years of sleep deprivation due to his wife being ill with cancer. After her death, my uncle coped but needed company and made some very bad friendships with people who were patently only interested in his generous nature. They were much younger and they liked the 'good life' he indulged them in - wine, whisky, cigarettes and goodness knows what else. He was diagnosed with diabetes type 2 but refused to get treatment. He shunned medication in favour of natural remedies. He thought he was 20 yrs younger than he was, he was convinced he was strong and invincible. He sold two beautiful cottages in succession and ended up in a hovel that he believed was perfect for him - remote, cold and damp, without downstairs toilet, miles from a supermarket and community infrastructure, depressing beyond belief.

He lived mostly on his own except when his "friends" deigned to party at his expense - usually when there was a full moon!

My personal experience is probably not that common and I apologise if posting this is inappropriate but I was prompted by Hayley, who's dad has a drink problem which is definitely something my uncle shared as he told us he would drink a bottle of whisky on his own after his wife died.

Ladywriter says "They may start to lose their money or make new found friends that just take their money. But these type of friends always come with baggage and problems and these types of friends generally look scruffy, untrustworthy and half are probably criminals. They will say they lost their money in the street or down the sofa. Which could true. The first time, but when it keeps happening all the time then you know they are giving it away. They either have forgotten or they know and don't want to say."

Hayley says her dad "has a number of so called friends who " manage" his money and basically feed his habit".

I find these experiences so terribly appalling and I just wanted to highlight how I feel regarding potential psychological and financial abuse of vulnerable people which could be a big contributer to their serious ill health in later life.

Thanks to all who have contributed to this thread.

Jancis x