Please remember those of us who can’t remember!
Because we have Alzheimer’s/Dementia
Welcome to my website
Faces of Dementia
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My website is designd to be
Dementia User Friendly
It’s now some ten years since I was first told that I have mixed dementia with Alzheimer’s at the then age of 58. To be told you have this devastating illness comes as a great shock to the person that has the condition and to their spouse and related family since it means a complete change of life style, its an illness that can affect us all in many different ways during its course and is still an illness that has no cure and without any surgery to stop it from becoming worse, yet it’s an illness that leaves an mighty scare within our loved ones during and after our demise that can make it a long lonely road for us all, yet still not a road without hope thanks to the love and support from our loved ones and the Alzheimer’s society.
Yet Alzheimer’s or any other type of dementia is an illness that any one of us could fall prey to, it’s an illness which robs people of their memories and takes away their past. For all of us it is the past which makes us who we are. By reading the poems and articles people with Alzheimer’s and their family, friends and anyone affected by this illness can begin to understand how the Alzheimer’s / Dementia mind works and the feelings of fear, anxiety and confusion that become part of the norm of everyday life.
What I am aiming to achieve with this website is to help people with Alzheimer’s disease or any other type of dementia awaken memories of their own past whilst helping others understand the inner feelings of the condition.
Some of the poems are written with a harsh reality about how I see myself and how others perceive me, but that’s the honesty in the face of my own diminishing abilities.
I hope that by reading my poems, articles and watching my videos that it will give you a wider insight as to how this illness can affect people and their family as I’ve tried to write the verses from both perspectives, so now take a poetic journey along my Alzheimer’s path and try to capture all the fears, confusions and apprehensions that people with this illness can experience everyday of our diminishing life.
A Short Autobiography
My name is Barry Pankhurst; I was born in May 1946 in the town of Enfield, Middlesex, England, but now reside in Indonesia with my Indonesian wife Sumi and stepdaughter Yuni.
By profession I had been a master baker and confectioner specializing in the decoration of celebration cakes, when I first started my career at the age of 15 in a small family run business called (Painters of Enfield). Little did I realize how my career and life would evolve, as it gave me the tremendous honour of being able to make cakes for many members of royalty, stage/screen celebrities and to be used in television advertising? Then, when I was working as a regional bakery adviser for one of the UK's leading supermarket chains, I noticed a challenging job opportunity in a bakery trade magazine to work overseas in Doha, Qatar, as a bakery manager within a department store. I applied for the vacancy and out of 300 applicants was fortunate to get the position. It was to be a major stepping stone that would challenge my whole life in so many ways.
After having worked in Doha for 4 years, I was then asked to join one of the world's leading consumer companies as their regional bakery manager to the Middle and all Far Eastern countries, first being based in Thailand and then eventually in Indonesia, which is where I meet my dear wife Sumi. It was a career that bought me into contact with and gave me a far reaching understanding of many different cultures, customs, traditions, religions and changed my whole philosophy of existence.
Then in January 2005, fate took a devastating twist in my life when I was diagnosed as having mixed dementia with Alzheimer's and Parkinson's disease which turned my entire life upside down. Having this illness has been made worse since where we live in a small provincial village, there is no Alzheimer's society or day centre support groups for either myself or my wife so we are in a very much go it alone situation. I then reflected that whatever scenes of desolation lay ahead of us I've never feared one more brutal than this, yet I would go on with my life… but I could bring to it nothing more than the importunate acquiescence of determination as I walk a new pathway with my dear wife which has since made me portray the effects of my Alzheimer's journey in poetry with the ultimate aim of broadening the awareness of this debilitating illness.
Barry living with mixed dementia in Bojonegoro Indonesia and without any local Alzheimer’s Society support
(Alzheimer’s, Lewy Body dementia, and Parkinson’s disease)
My journey begins
My story begins back in January 2003 when I could tell something was wrong with my mind and body having seen the same tell tail signs in my late grandfather and father-in-law, then came pains in the chest, the numbness and sweating down the right side of my body, that was it, and I knew it was time to go and see my family doctor.
He sent me for blood tests and an ECG which confirmed that I’d had a mild stroke and that I also had sugar Diabetes, high Cholesterol and hypertension and put me on a diet and medication. I thought that’s it I will soon feel better, but still there was the problem with my head and I was starting to feel worse and doing strange things like wandering round the house not knowing what I was doing or why I was there, forgetting what I was doing, loss of short term memory, forgetting people I had known for a long time, no interest in working at a job I had loved all my life, the list of things was endless… so on my next visit to the doctor I told him about all the problems I had noticed. At first he thought it was just a problem from the diabetes but gave me a full check up again and said you seem OK and told me to come back in a two weeks’ time, but still the problem was there, so yet again I was sent for blood test and x-rays and from the results he concluded that I could ‘possibly’ have some type of dementia and put me on a very mild cognitive medication and energy tablets. This went on until January 2004 by which time I was not feeling good in mind or body and was not getting any better, at this point he told me there was no more he could do for me and was referring me to a local neurologist as he now thought I had, Early Stage Alzheimer’s.
I don’t recall this coming as any surprise to me after seeing two of my late family suffer from the same problem, but I did find it a bit disconcerting when he insisted on placing his hands on my shoulders to say a prayer over me, which had my dear wife weeping her heart out as she thought I was about to die at any moment.
The following day I went to the ‘Neurology Specialist’ clasping my referral letter in hand and my list of things that I had noticed change in my mind and body over the preceding years, I also wisely took a list of all the medical problems that where relevant to my late parents and family as I wasn’t too sure whether Alzheimer’s or any other type of dementia was hereditary.
My new doctor is a very charming caring lady of Chinese origin who fist gave me a full check up and said that she was not so sure it was Alzheimer’s! But that it could be MID (multi-infarct dementia ) and changed all my previous medication which had a immediate effect and over the course of the next few weeks I started to feel much better and could actually start working again… but this was short lived as my head was starting to get confused again although this time it was more slowly and the doctor kept saying I should go to the hospital ‘that’s in another province’ for a CT brain scan… but therein lay a predicament, (which is another story) so I kept putting it off… even though I knew I was getting worse… and that now my walking was also getting very bad, and I was starting to get the shakes in my body that I could not control, then I started to have a problem with my eye sight I could not see properly and my vision was becoming very blurred which I thought could be a problem from the diabetes which was the same opinion as my doctor, so she sent me to see the eye specialist who after testing my eyes very quickly personally took me back to my neurologist and told her he felt that I should have a brain scan immediately… finely I agreed and went for the CT scan being some two years since the problem started.
I went with little trepidation of the Scan apart from what if the police stop us… but thank God this did not happen… but nothing in this world could have prepared me for the results of the scan since I had kept telling myself again and again there was nothing wrong with me the doctors are wrong I don’t have any type of dementia, but on seeing the results of the scan and the subsequent report my doctor told me that the scans showed positive and that I in-fact had (Mixed Dementia) being (Alzheimer’s, Multi-infarct dementia, and Parkinson’s disease). At that point I’m not sure who was more stunned me or my doctor, or maybe it was my dear wife Sumi who had been sitting with me in the doctors surgery but not really understanding about the illness or what the doctor and I were talking about, but I could see from the anguish in her eyes that she had realized something was seriously wrong with my health so my doctor explained it in her own Indonesian language at which point she broke down weeping cling onto me, and I must admit I’ve never felt so useless or lost for words in my life, all I could do was to embrace her and keep saying everything will be alright… yet knowing within me the complete opposite and that it would be up to me to explain and educate her about an illness that she had never heard of before.
I realize and accept there is no cure… but it was still a shock to the system and my thoughts started thinking about what of my life now as I was then only 58 years of age and had thought I still have a lot of productive years ahead of me… ‘But this is not the case’ so now I must start to revaluate my life and try to live it to the full for as long as I can… hence I like to be philosophical and say that I am embarking on a very long journey… as I had done many times in my past working life, but this time there are no expensive luxurious 5 star hotels to stay in…
And defiantly NO RETURN TICKET….
On high insight the Alzheimer’s must have been there right from the beginning and as we all know is very difficult for doctors to diagnose in its very early stages, I can only think it must have been shrouded by the MID (multi-infarct dementia) which apparently can progresses much faster than Alzheimer’s, obviously the medication brought the MID slightly under control hence I had felt a bit better at first, but the CT scan showed the cruel reality of my destiny.
A word from Barry
At the time of writing this I have been living in Indonesia for 18 years and wish to write a simple account of how mixed dementia is taking over my mind and body whilst living in a foreign country within a totally different culture.
You might ask yourself how can I remember all the events I write about as one of the early problems with this illness is that you start to lose your ability to remember things as the brain almost turns into an empty void, but I have always “for as long as I can remember” kept a daily diary of events in my life some good, some bad, and still have the notes to this day. This is something my family never knew and whenever I think of something to write about or how my condition changes I jot it down in my diary no matter how silly it might seem at the time otherwise it’s gone from my brain within a matter of minutes.
I remember reading that a person who was drowning said that life flashes before your eyes, well that’s the feeling I have everyday and every night with Alzheimer’s. You continuously feel you are sinking into a quagmire that you can’t get out of no matter how hard you fight, and as hard as your family and friends try to pull you out… you only sink deeper in… you know you are going to die but something inside tells you to continuously keep fighting back and grasp every last breath of life you can…
To be told you have this devastating illness comes as a great shock to the person that has the condition and to their spouse and related family since it means a complete change of life style, it’s an illness that can affect us all in many different ways during its course and is still an illness that has no cure and without any surgery to stop it from becoming worse, yet it’s an illness that leaves a mighty scare within our loved ones during and after our demise that can make it a long lonely road for us all, yet still not a road without hope…
Maybe from what I write with my stories and poetry it will help other people to gain a better understanding of how Alzheimer’s or any other type of Dementia affects a person’s life and the ones we love so dear, as I truly believe it has a far greater lasting effect on those we love… than it does to the sufferer, since we eventually lose all awareness of our condition …
I’d even go as far as to say; that I would not wish this illness on my worst enemy… as in truth your brain becomes your own worst enemy… as you have to fight with it each day to retain some rationality of life... yet fight we do.