My Pathway 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 know 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 felling 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 to 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.
BUT a few years later the MID was amended to LBD (Lewy Body Dementia)
Accepting my illness
Accepting that you have this terrible illness can be one of the first major stepping-stones for many people who are diagnosed with ‘Early onset dementia’ but for some they can understandably go into complete denial rather than confront the condition face to face… but from the moment of my own diagnosis I resolved to approach it head on with as positive mind and attitude that I could summon up, and even drew up a plan of action for what was going to be, and still is, a long lonely labyrinth pathway ahead of us.
Right from the beginning I told my dear wife that we do not keep this a secret from anyone, be ‘Open and Honest’ tell the facts the way they are, otherwise people out here will just think I’m going crazy… yet by doing this I had already realized that I could expect to lose a lot of once good friends, which did in-fact quickly happen due to their lack of understanding of the illness, but I was not about to let that deter my inner fight or spirit…
Personally I think that’s the only way we should be with any of the many problems related to our illness when talking about it, although I can understand that some people are more reluctant, maybe from the embarrassment point of view to shroud certain issues, but to my ‘Confused mind’ being (Open and Honest) about my Alzheimer’s is also just my way of trying to further broaden the awareness and understanding of our condition by not keeping such problems locked in the closet so to speak… otherwise that could just add to the existing misunderstandings and the stigma that’s associated with the illness…
Course of action
My first course of action was to tell my children and my brother at home in England as it will have a big impact on them even though there is nothing they can directly do.
But my very big problem is Sumi… although the doctor had explained my condition to her I know she still could not understand it or what the outcome will be and just how demanding my condition will become over time, I know she thinks the problem will go away… and that just makes it harder for me and its going to be very difficult for her. The same thing applied to her family as they knew nothing about Alzheimer’s or dementia in-fact they have never heard of it and can’t understand what my problem is and in truth I find that apart from the doctors Indonesians especially in the villages have no knowledge of any medical matters which is not like at home in the UK, when you mention an illness or disease they know what it is and what the possible outcome will be. But out here in Indonesia everyone has a miracle cure for anything medically wrong, it’s always do this or drink this and go to the magic man!
My wife and her family are just the same but I try to keep them happy and drink the traditional medicines and let Sumi go to the magic man to get his magical cure who knows maybe one of them will work and my illness will just go away! I guess it’s the same at home with the alternative medications that you can now buy and as yet doctors don’t fully understand the healing properties that come from many roots and leaves that could be the cures for many illnesses. But a word to the wise, (many of the traditional medications taste revolting)
Then I have the problem of culture and the way they view death as they think it’s the just will of God, but I can’t believe that, as I am sure God would not inflict this disease on any human being, so it seems I will have to carry my burden alone for as long as I can and now I must think of so many things, things I would not have to think about if I were at home in the UK as it would all be taken care of by the family but Sumi wont know what to do, or how to tell my family (As and When), how to get a death certificate, or how to deal with my death insurance that I have at home, so I must put the wheels in motion as hard as it is for me to do, I must think of Sumi, and my family at home… otherwise financial matters could take a year or more to be sorted out.