I’d had a long gruelling few days leading up to Sunday making all the bakery snacks for the 100 guests that would be attending my stepdaughter’s traditional Indonesian prayer ceremony to mark her ‘Seventh month of pregnancy’ but I was feeling in high spirits as all the products had turned out OK ‘and’ without any mishaps or to much confusion in my mind, whilst I had been doing this my dear wife Sumi along with eight other friends and family were busy preparing all the meals to feed the guests.
Then from the early hours of Sunday morning the house was a hive of activity getting everything ready for the ceremony that would take place at 6-30pm… all the family were excitedly talking at the same time with lots of deafening laughter and the children getting extremely exuberant in their own way, but I was managing to cope with all the upheaval and excessive noise rattling through my brain, (well that is up until three o’clock in the afternoon)
I had just gone into the bedroom to take a short rest as ‘Sundowning’ was starting to get the better of me and I wanted to be ready for the evening activities… when an Indonesian friend of mine arrived with two other people, (I should point out that this is the only Indonesian friend I have left as all the other so called friends who are educated people had quickly departed once I’d told and explained to them about my Alzheimer’s and dementia, to their minds I have a contagious illness) anyway not wanting to appear impolite to my friend and visitors (a lady and gentleman) I went and invited them into the house, then after a few minutes of congenial conversation the lady turned to me and said “You Not Remember Me” I apologetically said ‘Sorry NO’ and explained about my Alzheimer’s… she said “that’s why we come see you” I have traditional medication can cure you!! I must admit that the first thought that popped into my head was (Oh no, not another magical Indonesian cure for illnesses) don’t get me wrong as I’m open minded about traditional or herbal medications ‘but’ as a supplement to my prescribed medications and I must confess that I do drink such a medication as it helps in controlling my ‘Diabetes and Cholesterol’
She then produced a packet that contained, dried leafs, roots, wood bark, and herbs, that you boil into an elixir to drink everyday and again said this ‘Cure’ your problem!
I took the packet from her and scrutinized the wording on the label and quickly realized from the list that this product truly was supposed to be a ‘Magical Cure’ for every ailment under the sun! I said to her ‘Oh I see from the list that this is also good for Parkinson’s disease’ she replied “YES, YES” my friend ‘Cured shaking’ by drinking this “and again said “This cure you problem” I asked her (Do you understand about Alzheimer’s and Dementia) again a reply of “YES, YES” so I asked her to explain the effects of Alzheimer’s and Dementia to me… she said “You just forget things!!” I said OK and what else??? But she had know idea of what to reply… and yet again said “This cure you” by this time my hackles were starting to rise, so I explained to her as calmly as I could and even showed her an Indonesian medical journal stating quiet clearly that as yet Alzheimer’s, Parkinson’s or any other type of Dementia is still incurable… but she still insisted that her traditional medication could cure me!! I could feel myself becoming more and more agitated and apparently the tone of my voice started increasing like a crescendo, so I asked her if the product had been registered and thus approved by the Indonesian government health department, she replied “NO’ so I asked if it had been approved by the ‘FDA’ she said “What is FDA” and it’s at this point in our conversation that without warning my Alzheimer’s suddenly took control of my being and words, as from what my dear wife Sumi has since told me I became extremely, extremely verbal, shouting “There is no cure” “YET” how can you try to sell me a product when you don’t understand anything about the illness… I was in such an emotional state of mind that Sumi came rushing into the sitting room and had to grab hold of me asking (What’s wrong, What’s wrong…) as I was losing my sense of balance, I was waving my arms in the air, twisting in circles holding my head in my hands shouting out in a slurred stuttering voice “Look what you have done to me, Look what you have done to me…” this is another effect of Alzheimer’s, that you do not understand… the room feel into an utter silence as they sat with their mouths aghast not knowing what to say as Sumi took me back to the bedroom and gave me a calming tablet to calm down and then went back to the two visitors saying “I think it’s better you go” as you’ve made my husband incredibly distressed by your none awareness…
After about ten minutes I become more relaxed and went back to sit with my Indonesian friend… who frantically apologized for bringing visitors to our house unannounced, and he even admitted that he’d never realized just how devastating this illness can be as in all the years we have known each other never once has he seen me in this way…
As for a ‘Cure’ for our illness… well I’m sure that before long ‘A Cure’ will be found and maybe that cure is somewhere within the deepest jungles or the oceans deep… whether that’s to be within my lifetime is in the hands of God, but a ‘Cure’ must be found to prevent millions of other people and their families around the world having to unwillingly take this terrible fraught pathway…
Fortunately by 6-30pm I was far more relaxed and able to join in with the religious ceremony…
Barry
Then from the early hours of Sunday morning the house was a hive of activity getting everything ready for the ceremony that would take place at 6-30pm… all the family were excitedly talking at the same time with lots of deafening laughter and the children getting extremely exuberant in their own way, but I was managing to cope with all the upheaval and excessive noise rattling through my brain, (well that is up until three o’clock in the afternoon)
I had just gone into the bedroom to take a short rest as ‘Sundowning’ was starting to get the better of me and I wanted to be ready for the evening activities… when an Indonesian friend of mine arrived with two other people, (I should point out that this is the only Indonesian friend I have left as all the other so called friends who are educated people had quickly departed once I’d told and explained to them about my Alzheimer’s and dementia, to their minds I have a contagious illness) anyway not wanting to appear impolite to my friend and visitors (a lady and gentleman) I went and invited them into the house, then after a few minutes of congenial conversation the lady turned to me and said “You Not Remember Me” I apologetically said ‘Sorry NO’ and explained about my Alzheimer’s… she said “that’s why we come see you” I have traditional medication can cure you!! I must admit that the first thought that popped into my head was (Oh no, not another magical Indonesian cure for illnesses) don’t get me wrong as I’m open minded about traditional or herbal medications ‘but’ as a supplement to my prescribed medications and I must confess that I do drink such a medication as it helps in controlling my ‘Diabetes and Cholesterol’
She then produced a packet that contained, dried leafs, roots, wood bark, and herbs, that you boil into an elixir to drink everyday and again said this ‘Cure’ your problem!
I took the packet from her and scrutinized the wording on the label and quickly realized from the list that this product truly was supposed to be a ‘Magical Cure’ for every ailment under the sun! I said to her ‘Oh I see from the list that this is also good for Parkinson’s disease’ she replied “YES, YES” my friend ‘Cured shaking’ by drinking this “and again said “This cure you problem” I asked her (Do you understand about Alzheimer’s and Dementia) again a reply of “YES, YES” so I asked her to explain the effects of Alzheimer’s and Dementia to me… she said “You just forget things!!” I said OK and what else??? But she had know idea of what to reply… and yet again said “This cure you” by this time my hackles were starting to rise, so I explained to her as calmly as I could and even showed her an Indonesian medical journal stating quiet clearly that as yet Alzheimer’s, Parkinson’s or any other type of Dementia is still incurable… but she still insisted that her traditional medication could cure me!! I could feel myself becoming more and more agitated and apparently the tone of my voice started increasing like a crescendo, so I asked her if the product had been registered and thus approved by the Indonesian government health department, she replied “NO’ so I asked if it had been approved by the ‘FDA’ she said “What is FDA” and it’s at this point in our conversation that without warning my Alzheimer’s suddenly took control of my being and words, as from what my dear wife Sumi has since told me I became extremely, extremely verbal, shouting “There is no cure” “YET” how can you try to sell me a product when you don’t understand anything about the illness… I was in such an emotional state of mind that Sumi came rushing into the sitting room and had to grab hold of me asking (What’s wrong, What’s wrong…) as I was losing my sense of balance, I was waving my arms in the air, twisting in circles holding my head in my hands shouting out in a slurred stuttering voice “Look what you have done to me, Look what you have done to me…” this is another effect of Alzheimer’s, that you do not understand… the room feel into an utter silence as they sat with their mouths aghast not knowing what to say as Sumi took me back to the bedroom and gave me a calming tablet to calm down and then went back to the two visitors saying “I think it’s better you go” as you’ve made my husband incredibly distressed by your none awareness…
After about ten minutes I become more relaxed and went back to sit with my Indonesian friend… who frantically apologized for bringing visitors to our house unannounced, and he even admitted that he’d never realized just how devastating this illness can be as in all the years we have known each other never once has he seen me in this way…
As for a ‘Cure’ for our illness… well I’m sure that before long ‘A Cure’ will be found and maybe that cure is somewhere within the deepest jungles or the oceans deep… whether that’s to be within my lifetime is in the hands of God, but a ‘Cure’ must be found to prevent millions of other people and their families around the world having to unwillingly take this terrible fraught pathway…
Fortunately by 6-30pm I was far more relaxed and able to join in with the religious ceremony…
Barry
Thank goodness this person was evicted and that calm was soon restored. I was so pleased to hear that you were able to enjoy the prayer ceremony after a rest and recovery period. I was particularly pleased that the friend that brought these people into your home remained. That took some strength of character I felt as he could have felt responsible for the disorder. He sounds like a true friend Barry.
