Hi Claire and CallyDG many thanks for you’re replies
Hope you don’t mind CallyDG but I’ve replied to Claire first in this thread as your reply as you will see is much longer.
I take your point Claire and I will discuss the problem further with my doctor and see if she can increase the dosage of my antidepressant but I done want to become reliant on them so I might also try taking one of my stress pills as that might also help me!
Now to your question CallyDG, but first to say that I’m sorry about your father and that his relationship ended because of his dementia this is something I’ve heard of happening to many others who have dementia and obviously doesn’t help the person who has dementia it’s just like adding fuel to an already smoldering fire!
Unfortunately many sufferers of the illness do go through denial of the illness and personally I think that’s one of the first major hurdles to be overcome after the initial diagnoses as its more like a fear factor and not down to old age.
I also have terrible mood swings and can become very irritable also it’s now affecting my appetite and the type of foods I once loved to eat now I can’t even stand the smell of them…
Anyway below I have added three of the articles I wrote some time ago to help other people get a better understanding of the illness, if you go into my profile then you can see all the other articles and poems I’ve written about dementia over the past 7 and a half years.
I do hope this helps!
“What does it feel like to have dementia?”
Recently I was asked “What does it feel like to have dementia?” Well let’s put it like this! Delve down deep into the very depths of you soul and imagine your worst nightmare and you wont even come close to what any type of Dementia can do to a person or the person you new!
‘No’ there aren’t any what you might call symptoms as with a cold or the flu as dementia is furtive and just seem to creep up on you from behind without you realizing it, for some people it seems to hit them very hard right from the start and whether that has anything to do with a persons age is debatable, I know in my own case I started to realize I had a problem when I was 58 years old having seen the same thing with my late grandfather and then my late father-in-law, it was just like my mind was lost in swirling clouds and I noticed that I could not remember my recipes anymore and also kept forgetting that I’d put products in my oven for baking!
Yes I do still realize that I have dementia and can still tell what its doing to me as a person ‘as in sometimes’ turning me into a person with a Jackal and Hyde personality, yet before the illness I was the most placid of people with a good sound logical mind!
There is a list of what they call the 7 stages of Alzheimer’s and Dementia but it doesn’t necessarily mean that every sufferer will follow the stages as listed since any type of dementia seems to affect each individual in different ways and at different stages of the illness progression, so yes tiredness, depression, and definitely irritability are all part and parcel of the illness so its not (as some people still seem to think) just a case of being forgetful.
At the moment with my own condition I’d say that my physical condition has deteriorated much faster than my mental condition, sometimes when we go for our morning and afternoon walk I fell as though I’m wearing lead boots and it becomes an immense effort to put one foot in front of the other, this becomes worse at the end of the day when I start to (what’s called) “Sundowning” and the mind starts to follow the setting of the sun and drains every once of energy out of my body then added confusion sets in thick and fast!
Yes I also battle with frustration everyday at not being able to practice my once loved profession that needed a lot of eye to hand coordination but know my coordination has got lost within a labyrinth of other dementia problems… imagine this! You studied and now fully understand your own profession, well try to imagine how you would feel if all of a sudden all those years of studying and the knowledge you gained are slowly being eroded away out of your memory bank and that your mind is turning into an empty shell!
Many of us with dementia have speech problems that can manifest itself at any time during the illnesses progression although having said that (it doesn’t mean that every sufferer will have speech problems) I now have speech problems that Sumi said started about a year ago and has become progressively worse, ‘what happens’ maybe Sumi or someone will ask me a question ‘But’ when I go to reply the mind and voice becomes frozen and all that comes out is a slurred stammering, yes the words of a reply are within me but they wont come out which then makes me even more frustrated and bewildered and I often end up in tears, yes a grown man in tears… but that’s what dementia does to a person… and sometimes when I sit at the computer with all good intentions of typing I end up just staring at the monitor screen as any form of communication has got lost in the minds maze of bewilderment.
Sudden noises of any type cause me a lot of anxiety and I end up like a trembling frightened jelly, it can be from the daily noise from people talking, children crying, or even the passing traffic, I’ve also now become extremely insecure when left alone, you could say scared of my own shadow and I seem to see plenty of shadows and images that really aren’t there, and night times can be horrific from the terrible nightmares that have me screaming and lashing out my arms and legs in my sleep…
Well that gives you just a very, very brief look into my daily dementia mind, first thing this morning I was having a bad cloudy day full of doom and gloom but we have to try and keep fighting this illness no matter how hard and stressful it becomes since if we give in then the dementia sneaks in further through the back door of the mind.
Without a doubt dementia is one of the curliest illnesses, yet I still say I’m far better of health wise than many other people in this world.
But as I said please remember that no two people suffer from dementia in exactly the same way…
Barry
Awareness of our illness
Is it a Fear Factor with denial?
I feel a bit like a leopard about to change its spots! But are we unjustly underestimating people’s awareness of our condition, maybe they do realize just how devastating the illness is but they just close their eyes to the reality as not affecting them at that moment in time and only start to find out more about the illness on a need to know bases which can be the same case with many illnesses, but let’s just reflect on Alzheimer’s and Dementia and some of the reasons why none sufferers might be so reluctant to talk about it and openly acknowledge that the problem exists.
Is it a ‘Fear Factor’ of the illness… which as many sufferers know is furtive… since it creeps up on you from behind and overtakes your mind without any warning, one moment your feeling at one with the world and life in general only to find that over a period of time you start questioning your own abilities and asking yourself what the hell am I doing and what’s happening to my sense of rationality.
In past years the illness was always associated with old age and maybe as part and parcel of the natural aging process but this is not the case now as even people in their midd 40s can fall foul of the illness which must cause a ‘Fear Factor’ within them.
Unfortunately to many people still think of Alzheimer’s and Dementia as being just a condition of forgetfulness, like: Where did I put my car keys, I cant remember that persons name, what’s the news paper doing in the fridge, and forgetting the normal day to day things that once we would have done automatically without thinking, but now a ‘Fear Factor’ and panic set in.
Although “there is a lot of media information” about Alzheimer’s and Dementia it always seems to cover the latter stages of the illness which causes people a lot of anxiety even though it is the reality of the condition, again it’s a ‘Fear Factor’ whereby people decide its best to steer clear of us, there needs to be far more media coverage of the illness from its “Early Onset” and then progressively through the illness, otherwise its like only reading the end of a book without understanding the opening chapters thus the story becomes confusing and distorted.
Are people just scared of acknowledging all the problems associated with the illness again causing them a ‘Fear Factor’ so they don’t want to talk or listen about our problems such as: The terrible Nightmares, denial of the illness, hallucinations, incontinence, depression, fears, loneliness, psychosis, disorientations, wandering, agitation, temperament tantrums, aggression, apathy, crude innuendos and verbal aggression, obsessions, delusions, egoism, insomnia, eating and swallowing problems, the slow lose of ability to do anything for ourselves, as in; Cleaning our teeth, washing, shaving, washing and brushing the hair, bathing, changing clothes in fact even knowing what clothes to wear with the right session, and for some there’s the ‘Fear Factor’ of unacceptable social behaviour… this is just some of the many problems that a sufferer and family might have to contend with each day and that can become progressively worse from early onset to the latter stages.
Maybe its also due to the way society values youthfulness and the abilities of the younger generation, whereas with Alzheimer’s and Dementia we can be deemed to be useless to society… again a ‘Fear Factor’
There is also the ‘Fear Factor’ that since the illness manifests itself so slowly that by the time a person has been given a confirmed diagnoses many of their once abilities have already started to deteriorate so drastically that any fight is driven out of them.
Even if you are fortunate enough to get an early diagnoses… which most people aren’t… it doesn’t necessarily mean you will get the best medication immediately without having to pay a high cost for it so yet again a ‘Fear Factor’ sets in as to ‘Can I afford the medication costs’ to maintain a longer quality in life…
Such can be the scenario for sufferers of Alzheimer’s and any other type of Dementia and I’m sure that their must be many none sufferers who’s daily life have in some way been touched by this illness, but isn’t it just human nature to close our eyes to what we don’t want to see or acknowledge… maybe that ‘Fear Factor’ is within us all casting a shadow from behind us… until such time that it becomes the reality of dementia…
Barry
The reality when I’m Sundowning
It was just 4-30pm as the sun started descending over the horizon when lethargy takes a grasp of me and the Sundowning affect tolls the knell of my end of day… so I was writing this down trying to express the depths of my ‘true inner feelings and anxiety’ at that exact moment in time which also resulted in a Youtube recording that I hope will give people a better understanding of the Sundowning effect… that can also be found on my own website.
My whole body aches as the muscles try to maintain some equilibrium… and as we go for our walk every faltering step I take being like that of wearing shoes made from concrete that’s slowly setting and intensifying in weight, so I weigh heavily on my walking stick and Sumi’s arm otherwise I feel I could just pass out from utter exhaustion as my mind is consumed in a dense cloud of disorientation and confusion, my limbs are trembling so much I don’t know what to do with them to ease the tremor… my vision has become blurred as my eyes feel heavy wanting to sleep and escape from the sun’s draining sensation, so Sumi tries talking to me to take my mind of the horizon as my eyes have become mesmerized following the sun’s descent and harsh rays… but I cant comprehend what she’s saying, I try to reply but any form of words and speech are held tight within me so all I do is mumble something incoherent which then makes me frustrated and I become really irritated and tetchy with her, the slightest little noise is more like thunderbolts slamming into my ears and mind making me very anxious and extremely jumpy.
The further the sun sinks away… the further I go into despair of doom and gloom… and sometimes it gets me to the point of saying to Sumi (I’ve had enough of this… maybe it would be better if it all ended now… and I did not wake up again) as I can almost sense death waiting round the corner taunting me when in this daily living hell of Sundowning, I can see the tears glistening and running down her cheeks as she holds on more tightly to me saying ‘please don’t speak like that’ but I seem to be oblivious to her own anguish as my whole being is so distraught by the ‘time of day’ that I just want to come to an end.
As I said those where my exact feelings made from notes last evening, but as I typed them out this morning I have little recollection of that moment in time… it’s as if it never existed… as this morning I feel a completely different person still full of determination and the spirit of fighting this terrible illness, but when Sundowning strikes it takes us into a completely different world of anxiety within dementia…
I’m sure that all of us that have this terrible illness do our best to put a brave face on it and be as positive with determination as we can towards our future ‘such as it is’ but sometimes we need to be openly honest ‘not just with ourselves’ but with other people that have been in some way touched by the illness and for those people that do not have the illness in the hope that it will give a better understanding and insight into the depths of our illness.
God bless you all
Barry…
How Sundowning affects me
Some time ago I was asked this question on about ‘Sundowning’… this was my reply.
(Barry could you explain how you feel whilst Sundowning, does anything trigger it or does it happen just like clock work, hope you do not mind me asking)
The easy answer would be just to say yes (It happens like clockwork) but I think the subject is far more complex than that as it seems that Sundowning as it’s called can affect people with our illness at different times of the day although the latter part of the day when the sun is setting seems to be the most significant time.
One thing I should explain is that here in Indonesia and some other parts of Asia Sun rise and Sunset occurs at about the same time everyday of the year, by 6am its broad daylight and by 6pm it’s getting dark unlike European countries when during the summer you have extended hours of sunlight from 4am-9pm which in itself could have some significance as to when a person starts to feel the affects of Sundowning?
But how does it make me feel:
I think the best way I could describe it is to say that it causes a similar feeling that I can still remember after having had a nervous break down some years ago that at the time resulted in deep depression.
Normally at around 4 - 4-30pm I start to fell very lethargic and just seem to be wandering around the house totally lost in my own world mumbling to myself or sitting in a chair drifting into daydreams (in fact my wife says she can now tell what time of day it is without looking at the clock) I fell as though the day is trying to drain every last bit of energy out of my body, all my limbs become extremely weak and I find it very difficult even to go for our walk but still go in a effort to ward off the Sundowning effect, I can become very short tempered and loose all sense of rationality and sometimes become verbally aggressive and argumentative you feel as though the whole world is against you and that whatever you say or do is wrong so I don’t like to be posed any questions at this time of day not even (what do you want for dinner) and I certainly don’t like to have any visitors at this time not unless they want there heads bitten off as my mind is at a total lose of comprehension, all I want is to have my dear wife by my side but she now realizes its best to talk to me very gently and I’m sure that she now just agrees to everything I say in an effort to keep me calm and makes sure the house is kept peaceful without any excessive noise to further confuse my mind (Bless her as she has so much patients) as I start to feel as though I have the whole weight of the worlds problems upon my shoulders and everything becomes a effort so much so that my wife now has to help me bathe and get dressed as I’m so agitated and shaky.
So there is nothing that actually triggers the Sundowning as it just seems to automatically start by itself but if it’s not handled with sensitivity then there could be untoward repercussions, also I should add that not everyday is the same as some can be worse than others and sometimes I can go for a few days without feeling any effects of Sundowning and the other strange thing is that even the weather conditions at the end of day can have some influence if its overcast I feel much better and responsive but if it’s a strong bright sunset then the draining affect starts much quicker in fact I get much the same affect when I go into a shop that has extreme brighter lighting.
Barry…
