On a positive note
Hi my friends
A bit of news that you might be interested in is that a few weeks ago when I was on Facebook I was looking at a section I like called (Cake Masters) who had put an article on their Facebook page asking (Does Baking motivate you and is it therapeutic for you) so I wrote to them with a short article about myself and sent a few photos telling them about my past profession and then me having been diagnosed with Alzheimer’s and Parkinson’s and how continuing my baking is helping to keep me motivated and therapeutic to my condition, anyway I had an E-mail from them a few days ago and they want to publish my story and feature me in the March issue, they also asked for more photos of my products.
Must admit I feel quite pleased with myself and YES very motivated, in-fact I might bake a cake, but it’s a shame I can’t eat it!
But joking aside I also look upon this as being yet another step forward in raising the awareness of Dementia and letting people know that even with our illness we can still achieve and do things that give us motivation and have a therapeutic consequence on our condition which in turn can help to boost our moral and in turn help us to fight even harder, so my advice to anyone who has dementia is to say “IF POSSIBLE” don’t give up, keep on fighting, and keep as active as you possible can with maybe a past hobby or even a new hobby, try to be the master over your own destiny for as long as you can…
Apparently the article is due in the “March magazine Issue” and can be ordered direct from there website as from 26 February, it’s also available in the UK shops and supermarkets.
So as they say: There’s still life in the old dog yet! LOL
Here is the link: and note that the magazine is delivered worldwide
1st January 2015
1st January 2015
You might recall that a few days ago I posted an article called “Harsh Words” wherein I wrote about hoe aggravated I got with the family trying to push me against my will to go out for the day on New Year’s Day as I kept saying that I would prefer to stay a home even if it meant me being alone. I should point out that at the specific moment in time Mr Dementia was in control of my thoughts!
“But” have you ever regretted the words that passed from your lips!
“Day out 1st January 2015”
It was just 4-30 am as I got out of bed still somewhat dazed after a late New Year’s Eve when I had followed my normal UK tradition of first opening the back door to bid good-bye to the old year, then went to the front door and opened it wide and welcomed in the New Year with a prayer that it will be a good year for all the family and my friends. Anyway I had my coffee and took my tablets and also took a calming pill so that I didn’t get over anxious.
We set off on our journey at 5am to the Indonesian Disney type amusement park in a place called (Lamongan) and arrived there at 7-30am and even by that time in the morning the car park was jam-packed but after a few moment of hunting we finally found a parking space, we sat in the car and had out rice breakfast that Sumi had prepared ready and Hendra went to buy the entry tickets which really aren’t expensive by UK standards, for one person to go into the amusement area and then the Zoo is only Rupiah 100, 000 which is equal to about £5. ‘or’ US$ 8. And once your inside then 95% of the amusement rides are free you only have to pay a small fee for one or two of the amusements like with putting the Ping-Pong ball into the clowns mouth and trying to get enough points to get a prize. The moment I saw this amusement I went into raptures of memories as suddenly I could remember my childhood seaside holidays with my parents, grandparents and all the family and recalled that my cousin Tina and I would spend ages and a lot of Pennies playing this amusement just to win a cuddly toy, well something’s haven’t changed as I did the same thing with my granddaughter Fira until we won what she wanted being a Big-Bird cuddly toy, but I’m not sure who enjoyed playing with amusement the most me or Fira!
We walked and walked and walked for over 7 hours and went on as many amusements as my mind and body would allow me to but I refused to go on the amusements that twisted, turned upside down or dropped like a bomb from the sky, I said to Sumi my mind and body dose that every day without doing it any more ‘LOL’ I really felt like a big child going from amusement to amusement and all my fears of not wanting to go out for the day had magically disappeared as I ate my French fries and then went mad and had an Ice cream cone ‘OK’ I have diabetes but this was such a special day that if I am honest was arranged with me in mind!
I could go on and on writing about it but suffice it to say we all had the most excellent day out and I enjoyed every moment of it and started to wondered just why had I been so annoyed, negative and scared when it was first suggested to me, so yes I was deeply regretting my past words so once we got home I remembered to apologize to Sumi, my stepdaughter and son-in-law and thanked them for a wonderful day out.
But it’s strange as I had not realized just how hot it had been yesterday, nor had I taken into account the fresh sea breeze blowing into my face as the amusement area is right on the beach or rocky coast and it wasn’t until this morning when I was brushing my hair and thought why is it burning, and Sumi and the family have since told me that my face and head now resembles the colour of a ‘Radish’ and my hair has gone sun bleached white!
I had an extremely emotional and verbally vocal moment last night and got very irritable with the family and even at one point got so annoyed that I refused to eat any dinner, so Sumi had to give me a calming pill which quickly calmed me down and I ate my meal and then almost immediate went to sleep.
But now this morning I can’t recall what all the problem was about or why I got so stressed out! Sumi has since told me that it was something to do with us all going out on New Year’s Day and with me refusing to go! I know that sounds stupid as in most cases other people can have problems with trying to stop their loved one or Spouse from getting out of the house and going wandering alone but this was defiantly a case of the shoe being on the other foot with me adamantly refusing in wanting to go with the family and willing to be alone in the house for the day!
But know that I think about it this morning I realize that Sumi and the family are only thinking of making my life more fulfilled and adding some quality to my life by taking ‘ME’ out to some new surroundings rather than being stuck in the house (day in-day out) but my early evening dementia brain misunderstood what was being said which in turn made my emotions erupt like a volcano!
I have again this morning told Sumi and the rest of the family don’t try telling me anything new in the way of planning things in the late afternoon or evening. But on a brighter note I have now said yes that I will be going with them on New Year’s Day.
The problem is that at times such as this and when dementia takes control of our thoughts and speech we can lose all our rationality in thinking and of understanding people’s good intentions clearly…
It’s only the beginning of November yet a yearning and Christmas nostalgia has already got a grip on me and I know this sounds stupid but it makes me feel so very isolated.
I love Christmas and miss all the excitement and hype that comes with this time of year, but most of all I miss my family in the UK, and as Christmas draws ever closer I seem to withdraw into a shell searching for nostalgic memories of when my children were young and trying to recall my own childhood Christmas memories of when all of our family would be gathered at my grandparents’ house for Christmas day and with what had become a family tradition then of having a huge Christmas cracker that was as long as the top of the piano that it lay on which was filled with all the special treats for the grandchildren.
But now as I sit and watch some of my Christmas DVDs a great sadness and longing for home overwhelms me and even Sumi has said that I seem to withdraw into my own little world of what Christmas memories I still have. Yet again I know that maybe it sounds stupid but I can still recall the smell of the Christmas pine, hear the crackling of logs on the hearth fire, and smell the Christmas lunch cooking and the richness of the Christmas pudding steaming and then all the after lunch excitement of watching the children opening their gifts. Although Sumi always makes Christmas day as special as she can for me that yearning still remains…
Yesterday I seemed to have been almost obsessed and spent most of the day with doing internet searches to buy chesses online that could be sent to me via express post but nothing could I find as I could really go for some lovely real English cheeses rather that the processed chesses we get. I long for some Extra strong Cheddar that tingles at the tongue, and some rich blue vain Stilton so I think we will have to try and do a trip to Surabaya to the bigger and better supermarkets and see what we can buy! But I know that we won’t be able to find Christmas cakes or Christmas puddings which I guess I could make myself but I seem to lack the motivation this year.
“Where has the time gone to so fast?”
At the beginning of January 2014 it marked the “Ninth Anniversary” with my capricious bedfellow… and I find myself pondering as just where those past now almost Nine and a half years have gone to since I heard those fateful words from my doctor (Sorry Mr. Barry, ‘But’ you have mixed dementia with Alzheimer’s) and the sound of those words still echo out in my thoughts each day and I start to wonder just how many other people have heard those exact words in these past Nine years… which I’m sure by now must run into the tens of thousands, and then with the sudden realization that you have to try and adapt to the whole new way of daily life that any type of Dementia brings with it that can cause us all (meaning both sufferer and spouse alike) to have more high’s and low’s than the Pyrenees mountains…
But now when I try to recollect over my past Nine years I have little recollection of what’s been happening, the only way I can tell is to read the notes in my daily diary and when doing just that it horrifies me as to the many changes that have taken place within my being and my personality.
Where, and what, has devoured at the once placid man that had immense confidence in-himself, who could stand unfalteringly for hours in front of a vast audience lecturing and demonstrating about his profession as a Master Baker and Confectioner, who could answer any technical questions on that given subject and demonstrate the skills within his hands… that once man has now become a quivering wreck that shies away from any direct human contact due to his inability to clearly communicate as a result of the Alzheimer’s/Dementia yet sits fighting with the computer each and every day trying to find the words now lost within his brain…
As we all know it’s an illness that destroys the heart, soul and spirit of a person… yet we must not acquiesce to its relentless bombardment of bewilderments at our being, we must stay as steadfast as is possible, and for as long as possible, everyday fighting our way through the density of clouds that form in the mind that can lead us astray and towards an abyss in life.
‘NO’ it’s not easy and there have been days over the past Nine and a half years when I’ve said “I’ve had enough of this life” not just with regards to my own anxiety… but because of all the anxiety it causes my dear wife Sumi who at the best of times feels helpless as to knowing just how to help me, I’ve said this before, but I will say it again, for those of us with this terrible illness our days will slowly diminish beyond comprehension, but for our spouse the torment goes on beyond our demise, and one thing I know for sure is that without my darling Sumi at my side to support me, then I don’t know what I would do, so for Sumi’s sake, and for the sake of my children, and my grandchildren I will keep on staunchly fighting until the heavenly clouds of God come to carry me away…
“BUT” having said that over that time I have managed to write and publish a books about how the illness affects me and my dear wife, a book of dementia related poetry, and have just completed writing and publishing two books of Bakery recipes which is the culmination of many months of exhausting work that’s had my brain going in overdrive trying to remember all the recipes and making me delve deep down into my faltering memory bank for the preparation methods, but I finally got it done, which has given me a great sense of satisfaction and achievement, as in truth this was something that I wanted to do an extremely long time ago just after my early retirement but kept putting it off and then when Sumi and I opened our own bakery and café out here in Dander Indonesia where we live there never seemed to be the time as the business was going so great right from the start that it kept me working from 4am until 8pm 7 days a week, but then Alzheimer’s and Dementia arrived on my scene which put pay to my active working days and to be very honest that last thing on my mind then had nothing to do with writing my recipe books as my mind and body were and still are being consumed by this devastating illness “Yet” here I am now over nine years into my illness and I’ve finally done it, which seems a bit strange!
In truth it would be all so easy to just sat back and let the Alzheimer’s and dementia take utter control of my mind and body but I was determined right from the moment that I was diagnosed in January 2005 that I wasn’t going to acquiesce to the illness and let it take control of my life (well not as yet!)
Thus I decided to set about my second recipe book not as my swansong but as my deepest inner personal quest to try and retrieve what the illness is slowly taking away from me and to prove to myself that I still have some motivation, determination and the spirit to fight back against overwhelming adversity.
It’s not been easy and I must be honest and say that I did make some silly mistakes when baking, and forgot various things, but to coin a phrase I always used in my past working life when decorating cakes (If you don’t get it right first time, then scrap it all off and start again) until you get it right, which is exactly what I did, hence my motto...
So as far as I’m concerned the more you fight against the illness the more it can help in delaying its progression and as they say (there is still life after diagnoses)
“Continuing my baking has become my mother of intent in fighting my Alzheimer’s”
“From a good day to a bad Night”
Why do things have to turn sour as yesterday I was giving a great day but then last night Sumi said that it was about 11-30pm and despite the violent rainstorm plus the thunder and lightning I was sound asleep but she knew what was going to happen, as apparently just before I have nightmares my legs start to violently twitch which was what was happening and Sumi thought any moment now Barry will start screaming out but that was cut short by one almighty clap of thunder that Sumi said was directly above our house which had me springing out of bed in fear and also affected the electricity complex in town which in turn caused all the power to go off in our village and surrounding area sending us all into utter darkness, Sumi said I was just standing shaking as she light the candles. But thank goodness the power came back on about 15 minutes later although by that time I felt utterly disorientated, but Sumi got me back to bed and I drifted back to sleep with her soothing my brow, but Sumi said I was no sooner asleep and my legs started twitching again and I was shouting and groaning in my sleep again, she woke me up but I went back to sleep again and then apparently the same thing happened again and that’s how it went on for most of the night yet I have no recollection of what the nightmares were about, Sumi aid t must have been about 3am before I actually went into a peaceful sleep. Oh well C’est la vie as that’s what Alzheimer’s and Dementia can do to a person, Yet life goes on and today is a brighter new day …
Just lately I feel as though I’ve been drifting even further away from the reality of life, it’s as though I’m falling deeper and for longer into the dementia abyss each day. Now when I wake up at 4m every morning I instantly feel lost and extremely bewildered and thoughts start to bombard my brain such as, where am I, why am I here in Indonesia, what are we doing today, who are all these people around me... and then the normal daily dementia questions to my dear wife Sumi of, what day is it, what’s the time, have I had breakfast yet, did you give me my tablets, did I have nightmares again last night as I have no idea?
As the days and weeks progress I feel as though I’m become even more confused and by midday I seem to be in a world of my own without any knowledge of what’s going on around me and no recollection of what’s been said to me during the morning, and even if I do recall some conversations I then think that they were conversations of long ago, memories of my past keep pounding in my brain and all getting entwined with long-term and short-term memories but I can’t define which is which... and then as my day reaches early afternoon I start to feel the diminishing of the sun towards the horizon and the influence of Sundowning starts to take hold of my mind and body even more powerfully now making me sink even further into the dementia abyss and every sound around me becomes a warped anguishing noise and all I want to do is to hide away (out of sight and out of sounds)
To say that after over nine years that each day is now becoming an even mightier battle of wills between me and the illness would be a major understatement as my mind and body just wants to immediately give up and go to sleep so that I can get away from the bewilderment of the whole day “YET” from somewhere deep, deep down inside of me there’s a continua’s echoing voice saying (Don’t give up, Don’t give in... Keep fighting) which I’m doing my best to accomplish.
I’m disturbed by the constant horrific nightmares night after night,
I’m maddened at the constant unyielding bewilderments day after day,
I’m frustrated at the complete unawareness of my illness around me,
I’m annoyed at people staring at me when we go out shopping,
I’m infuriated at the difficulty I have walking that makes me drag my feet as though I were wearing concrete boots,
I’m frustrated at not having a scrap of ‘On the spot’ support for my dear wife and myself,
I’m exasperated at people not letting me finish a sentence when specking and then trying to finish it for me,
I’m aggravated at not always being able to comprehend what people say to me,
I’m irritated by other people that keep interrupting when I’m speaking or typing so that I forget what I was talking about or typing,
I’m wound up at my body constantly shaking like a leaf,
I’m frustrated at no sooner has my dear wife told me something than I’ve forgotten what she said,
I’m annoyed at other people saying to my dear wife (What’s wrong with Barry! He looks alright to me!) but they can’t see or feel the daily confusions in my brain,
I’m wound up at my dear wife having to constantly explain about my illness to our neighbours and other people,
I’m frustrated at not being able to eat my food properly with a knife and fork,
I’m infuriated at not being able to go out alone,
I’m aggravated at looking outside the house at our new car but now can’t drive it,
I’m exasperated at my lose of attentiveness and concentration when trying to type at the computer,
I’m depressed at my lost ability to communicate coherently without stammering,
I’m furious at my absent-mindedness of people I once knew,
I’m angry at my condition and my personality changing more than the weather,
I’m incensed at the illness constantly warmongering upon my daily intent,
I’m annoyed at the constant noise around me and then causing affray in my brain,
I’m feed-up at having to take medications 3 times a day and day after day,
I’m frustrated that the romance part of my manhood has disappeared and yet I can still feel the inner emotions and desires that no longer respond,
I’m up-set at looking at the deep anguish in my darling wife’s eyes all the time and seeing her cry as she knows not what our future together holds,
And I’m annoyed at this illness taking my once fruitful life away from me...
“BUT” as of yet, I’m not giving up on life...
This article that I wrote seems to have hit the spot with a lot of people and received a lot of positive replies on the (Alzheimer’s society Talking Point) as you can see form the link below...
“Friday 28 Feb 4pm”
Not had a very good day which started from the moment that I woke up at 3am and thinking that it was Saturday and Sumi said that despite the fact that she kept assuring me that it was Friday I was still not convinced and just become more and more agitated as the day went on.
I did try to sit and type out some new recipes but my brain, eyes and fingers would not coordinate with the correct keys and so I kept pressing the wrong keys, for some reason when typing a word my fingers kept going to either side of the actual letter of the alphabet that I wanted and not only that I also kept making stupid spelling mistakes so I was forever making corrections so in the end I turned off the computer absolutely exasperated.
In-fact my head has been in a bit of a muddle all day and now at 4pm the influence of Sundowning is really weighing heavy on my body and mind which isn’t being helped by the children who all seem to be irritable “Or” maybe it’s me that’s feeling irritable!
I just hope that tomorrow is a better day...
“Why can’t I?”
I’ve been getting very cross and frustrated with myself and the illness just lately as it seems that every time I try to do something that once would have been an easy thing to do I just can’t do it anymore.
I try to change a wall plug but my hands fumble with the screwdriver, I try to make a cup of coffee or tea and get told off for spilling drips all over the floor from my shaking hands, I can see jobs that need doing around the house but I know with my agitated hands and limbs they won’t let me do them.
Looking after our small garden and my Orchids or pruning our Mango tree and shrubs used to be so easy but now it’s a major task for me, not only that but now there’s no way Sumi would let me climb up a ladder.
I do still try to help Sumi with cleaning the house but more of tern than not she has to follow behind me as I don’t do it the way she likes, I try washing the dishes but again get told off (in a friendly loving way) for not cleaning of all the greasy marks.
Another example of my frustration is that this week Sumi’s daughter has been asked by her Boss to go into the office and work for the week so Sumi and I will be looking after our granddaughter and taking her to play school each day but easier if we could use our motorbike “BUT” I can’t drive anymore as I have lost all my equilibrium so we would most likely end up in the river outside our house! I said to Sumi it seems that the only thing that I can now do extremely well is to (Drive her up there wall) with me constantly saying (Why Can’t I, and, Why can’t I be the man I used to be)
Dungeons and Dragons
I don’t seem to be having a very good day today and everything seems to be getting far too much for me to handle, and it’s at times like this (as harsh as it might sound) I must say just how much I truly hate this illness “Why” because one moment my life great and steaming along life’s fervent pathway and then my Mixed Dementia and Alzheimer’s arrived on the scene and suddenly my Happy Families of life turned into a daily tussle of Dungeons and Dragons.
This Illness gives you no respite and unquestionably no reprieve, yet we have to try and continue our fight day in and day out without a Saint George to fend it off for us
“What’s a matter of time”
Is it just me! Or do other people with this terrible illness also keep persistently asking and checking what the time of day is?
This might sound amusing to some people but it’s an actual account described to me by my dear wife Sumi of what I was like when we were waiting at the doctor’s surgery for my check up a short time ago…
We arrived at the doctor’s surgery in good time, in fact a bit early… and then told by the receptionist that the doctor was running a bit late due to a meeting… so we settled down as best we could on the hard bench watching the TV…
Within five minutes or less I was starting to get rather fed up and extremely fidgety so checked the time on my watch…
A few moments later… I turned to my dear wife and asked ‘what’s the time as I looked at my own watch again’ has my watch stopped? So Sumi calmly tells me not to worry…
A few moments later… I’m fidgeting on the seat complaining it’s too hard, huffing, and puffing, and gazing at my watch again… where is the doctor… (Again I’m told not to worry don’t panic)
A few moments later… I stand up wringing my hands together, twisting, and turning my body in circles and scrutinizing my watch… why is she so late… (Told not to panic and to sit down)
A few moments later… I stand up again look at my watch, then sit down… then stand up again, look at my watch, then sit down again, stand up again and pace up and down, (My dear wife gazes at me saying, will you please relax and sit still)
A few moments later… I’m gazing at my watch again… where is the doctor, where is the doctor? I need the loo, have we got time as I can’t wait… look at my watch again… (Told its OK, there’s plenty of time for you to go to the loo)
A few moments later… once I return from the loo… has the doctor arrived yet, look at my watch again, sit down, start fidgeting constantly looking at watch again… scratching my head and gazing intensely at my watch…
Then at last my dear wife said ‘the doctor has arrived’ I check the time on my watch… (Oh, she’s only Ten minutes late!) But to my mind it had seemed like a whole day had passed by…
I’m not sure who was more relived… Me, or my dear wife Sumi… but such can be the affects of (Time) on the confused mind… as we lose all rationality of time…
“It’s the knowing and self-awareness”
It’s now 9 years since my diagnoses and each day, week, month, and year it becomes just that little bit more difficult to perform simple normal daily tasks in the same way that I used to, making a cup of coffee or a meal and going shopping, yet with perseverance and immense determination some of us can still manage to do this and to write about how this terrible illness affects us and our spouse, and to my mind that’s one of the mysteries of this illness, how is it that some people with dementia and after 9 years can still write, type and use the computer and still do many other complex tasks such as ‘Building Awareness’ that demands a lot of brain activity... I think that can only be put down to the ambiguity of this illness.
To be very honest and I can only speak for myself, I know that for anyone having any type of dementia it is a very traumatic experience yet for some sufferers they seem to lose all awareness of their condition extremely quickly and in some cases immediately and without realizing that its happened “Yet” some sufferers like myself and a few other people that I know we still have this daily feeling of the ‘Knowing and self-awareness of having Dementia’ and I must confess whether it be right or wrong it’s the ‘Knowing’ of what’s happening within my mind and body day in and day out that really tears me apart and the ‘knowing’ that as yet there is still no cure all be it that there is some light at the end of the tunnel!
I’m also extremely aware of the impact my illness is having on my dear wife Sumi yet I seem helpless in averting her own distress which I’m sure must be the same for other sufferers who still have “The knowing”
Yet despite all this we have to keep on fighting the illness and keep on trying to build awareness and tell our stories and situation with Alzheimer’s and any other type of dementia until such a time and day when people will say (What was Dementia)
“I don’t like the ME anymore”
Is it just me, or do other people with this terrible illness experience the same thoughts as I do about themselves and any possible changes in their personality, as I for one do not like what I can perceive in me, and can adjudge in myself anymore.
Prior to falling victim to this illness people use to tell me that I must have the patience of a saint as I was previously always an extremely composed person with an immense amount of tolerance and understanding which was a prerequisite within my past profession, and to ruffle my feathers (so to speak) was virtually impossible… but slowly over the now ‘eight years’ of my illness all my previous tolerance has diminished turning me into what I can only call a ‘Jackal and Hyde’ personality. One moment I am as calm and patient as the day is long… but then if the slightest thing goes wrong or action or even a miss spoken word that upsets my equilibrium then I can explode into the foulest of verbal abuse conceivable which is completely out of my previous nature as I was never the type of person that used such foul language, I don’t get in any way physically violent it’s just the verbal abuse which then always seems to descend blunt end upon the shoulders of my dear wife and family… and at times I can see Sumi and my stepdaughter Yuni looking at me in utter astonishment maybe thinking ‘who is this foul shrouded creature’ as it’s not the ‘Barry’ we recognize… yet still love.
I realize that at times such as that I am momentarily under the total consequence influences of the Alzheimer’s / dementia, but what is it that actually triggers the sudden outbursts which cause me a great deal of anxiety and leave my darling Sumi weeping her heart out… maybe it’s because I’m becoming far more paranoid within my daily life and at times have the feeling that the whole world is against me and my every action of trying to maintain some quality of life, or that people are trying to hoax me in whatever way they can (which of course is entirely wrong) but when paranoia gets a grip on your day it can be unyielding sending me into bouts of deep depression and then if I’m perfectly honest, ‘and this is not easy to say’ that’s when I become resentful that we can’t just pick up the telephone to discuss such problems with an Alzheimer’s help line or that there is no Alzheimer’s Society within our area to give us any type of on the spot support… so YES at times I get extremely envious which then becomes prey to the paranoia...
I know we all say the same thing in that “We hate this illness” but what I hate the most is what it’s taking away from me (My dignity as a human being) but as yet thanks to God it’s not taken away the deepest love I have for my dear wife… who I might add still showers me with far more love and affection than I’m deserving… and that’s why I say,
I don’t like the “ME” anymore…