#WorldRockAgainstDementia Event 2018#

#WorldRockAgainstDementia Event 2018#

It just takes one call from my friend, Sailesh Mishra to get me there.  When someone like him tells you to be there, you are there…. and not because you have been told to,  but because you just know in your heart that you have to.  This is exactly what happened for me and not surprised at all that when I landed there, I was handed a event flow and told to get up on stage and host it too.

In 2017, Sailesh Mishra of Silver Innings was appointed Brand Ambassador of India for Purple Angles a global platform for Dementia founded by Norman Mc Namara.  *World Rock Against Dementia* 2018, was organised by Sailesh Mishra and his Silver Innings on March 24, 2018 to create awareness about Dementia - a global program - 85 events simultaneously in 20 countries and in 5 continents. A collaborative event of global organizations started by Purple Angel Ambassador.

Dance and song by Seniors and the band Nuts & Frets rocked the show that evening. What was more heartening for me while hosting the show was that each and every Senior wanted the world to know their AGE.  Not one every wants to tell the world how old one is and here were my peers all wanting me to share their ages on the mike with everyone in the audience each time they performed.…. and why not?  after all they were proving  that AGE IS JUST A NUMBER and that the HEART IS YOUNG FOREVER.

It was indeed a matter of pride to know that Sailesh has been invited by Commonwealth International Forum Conference in UK, to represent India and speak about his cause in April  2018.  He will also talk about India, about family culture in our country because the Western culture is keen to know how we care about our family. He adds , "Let me tell you we are not so bad. We need to protect our family institution and I will be talking about it."

I decided that I had to get him to do a small interview so I pinned him down to do a FB live with me on that event day.  Here is the conversation we had.

Ø  Hira : Sailesh tell us what this event is all about?

Sailesh:  This event is hosted all over the world in 20 countries & 5 continents to create awareness about Dementia through music and dance.  Music and dance helps brain stimulate  and help in Dementia.

Ø  Hira: Sailesh, you are like an angel, I always say that and it is a fact. Tell me something about the causes that you are supporting

Sailesh:   We support the cause of Senior Citizens.. By Senior Citizens I mean those about 60+. Also we work with young people, old people and people with Dementia which a non-curable disease.  What has happened to your family member you can't do anything about it but we can try to prevent it, we can try to stabilize it, we can help the family members and the best thing is let people in the Government know what Dementia and Alziehermers is all about so we can act on it now.

Ø  Hira: I have realised that Sailesh, that you do a lot. You have Silver Innings, A1 Snehanjali that supports the senior citizens  and you have a home in Nalasopara and Rajodi.  Can you please tell me something more about it.

Sailesh : We have one of India's first social enterprise assisted living care home A1 Snehanjali at Nalasopara and Virar where we have a 24x7 dedicated home for Dementia and Alziehmer.  It is a big support and relief for the families of those suffering from Dementia and it is a holistic home. It is not a nursing home, it is not an old age home, it is not an orphanage. It is a home like yours and mine. We only give love and care. That is all they need people.  I think this is what India needs and I don't also think we need to also make our own homes Dementia friendly.

Ø  Hira : Dementia for me was a very scary subject and then I met you, Sailesh.  I also decided to make a film called SELFLESS SOLDIER - https://www.youtube.com/watch?v=aETnPu2FFXk.   What else do you wish to share.

Sailesh : One more thing. We have a Silver Inning Football Club playing for a cause also for Dementia. Our team is a group topper in Mumbai District Football Association.  This is something I am proud of.  As  for everyone of us out there, I can only say that  love and support your parents because one day you will also grow old.

Ø  Silver Innings FC #SIFC Team qualifies for #MDFA Mumbai District Football Association - MDFA of 2nd Division this year 2017 -2018 and to 1st Division for next year 2018 -2019 in prestigious #MDFA #Football tournament. They are through quarter finals.

Before allowing him to leave, I had to ask him that pertinent question that had me confused for a long time before it  made me come closer to understanding this cause which was:

Ø  Hira :  There is the word Dementia and then there is another word "Alzheimer's". What is the difference between the two and when we talk to our family members or anyone,  they think Dementia and Alzheimer's is the same thing. I also used to think the same until I connected with you, read about it on the internet and started to come to events like these.  Please will you tell us what exactly it is.

Sailesh : Dementia is like an umbrella,  in simple terms if I have to explain, it is like a company that makes different products. Dementia is like that and has many different facets to it like Alzheimer's and other kinds of focused Dementia problems which I don't think one needs to know about except Dementia and Alzheimer's prevail because in our country we have diabetes and heart problems. Dementia is a chronic disorder which affects the brain leading to memory loss, understanding problems, poor cognitive functions and behavioural changes The main problem is forgetting but forgetting is not wrong.

Ø  Hira :  So then please, explain the confusion between old age and Dementia, please.

Sailesh : See, forgetting small things such forgetting to pay a friend, not recognising or remembering people names which sometimes we do intentionally to avoid things. That is normal. Then what is this illness.  It is when you forget everyday routine, such as putting toothpaste on the brush, brushing or gargling, where and when to go to the toilet.  Meal times are forgotten, whether it is morning or afternoon and sometimes if clouds cover the sky a Dementia patient will think it already night or its morning. They will not understand what time of the day it is. With these kind of problems the persons personality changes. Forgetting  little things is okay, but problem comes when you forget people completely, forget to eat, forget name of wife, son, family members-  then it is a problem.  It is then that it never gets cured.

Ø  Hira : How important is a caregiver?

Sailesh : In Dementia and Alzheimer's the caregiver is the most important person. The caregiver is the doctor and the medicine as no other medicine works. Caregiver has the most important role and so who is a caregiver. It is a family member or someone you hire to look after your family member suffering from Dementia who stays 24x7 with them.  Most importantly a caretaker must to take good care of his mental health too.

The evening of dance and music came to an end and I know why Sailesh always advocates and encourages us seniors to continue to dance and sing. Simply  because it stimulates the brain,  relaxes, connects the mind and soul leading to agility, flexibility, balance coordination and as he always says "It is a way to keep your brain and body active and connected. So continue to sing, dance and stay active, then Dementia will never come close to you."

A must read  - “Remember me - You Me and Dementia ”, Book by Sailesh Mishra https://www.amazon.in/dp/9385221051 is a valuable guide in preparing care givers to foresee a new aspect of their life. The people diagnosed with the disease in the early stages will help them understand themselves and plan ones remaining journey of life.  The book is interspersed with real life stories and poems of perseverance and enduring without which, partaking in this journey is not possible.

Connect: silverinnings@gmail.com.  sailesh2000_2000@yahoo.co.uk or Mob:09819819145.

Dementia, Alzheimer's and my tryst at film making!!!

"Dementia, a condition that frightens many enough to shove it under the carpet and when it affects a loved one...even more...." are the opening lines that I wrote for my film titled "Selfless Soldier - Sailesh Mishra" (https://www.youtube.com/watch?v=aETnPu2FFXk). For a long time, I had been enamoured with the thought of making a film on Sailesh Mishra's  passion but it just did not seem to materialise.

Then one fine day, YESiAmTheChange happened. I decided that this year, come what may, I was going to participate in the Yes Foundation's YIAC 101-Hour Social Filmmaking Challenge, 3-minute short films on social causes. I entered myself for the NGO category and hoped that the topic would be just what I wanted it to be. I had the thoughts, the director's vision (ahem!) and the storyboard ideas ready in my mind to tweak based on the topic, but I knew I would need someone to capture my vision and put it on screen. I decide to take the plunge by writing a small note on all my whatsapp groups asking for production assistance at minimal cost. I get a call from Drishti, who listens patiently to me saying, "I have this awesome friend Sailesh and I want to make a film on the work he does as part of a contest. I want to showcase his dedication for Dementia and Alzheimer's", to a response, "Hiraji, I think you did not recognise me. I am Drishti, Sailesh's daughter"... and I wished the earth had opened up and swallow me.  That indeed was an unbelievable intervention by God himself for me and the beginning of a wonderful relationship with Drishti, her friend Amritraj Esakkiappan and their newly founded company called "The Photomist" (https://www.facebook.com/photomist/) that started the morning, the topic dropped into my mail box wee hours on 9th September. The topics were "Responsible Citizenship" or "Specially Abled"... and I chose "Responsible Citizenship" and we were ready to get going.

My long standing friendship with Sailesh had already created an awareness and interest into doing my bit for the cause for long now, so when I went to A1 Snehanjali at Nalasopara and Rajodi to record scenes I had in mind for my film, I sort of knew what to look for and what to expect. I knew that Alzheimer's is the most common form of dementia and what are the problems that come with it, but then I met Mary Aunty who kept holding my hand to ask "what will they do to me" and my heart cried.  Everyone knows that the person affected by the disease retreats into a world of his own and the world she/he creates that has no place for reality or the present.  Most of the times, the memories that remain are those that are long past gone but seem like today. Mary Aunty obviously had been hurt enough sometime, somewhere in her life and that bit of memory has remained with her, which is never going away.  At first she refused to touch the casio, but then suddenly got up and played the 'happy birthday' song for us on the casio. Sadly, it caught us by surprise and we could not capture that moment on film. On the other hand, there was ever smiling Kusum Aaji (as she is fondly called) who remembered only the happy days at her home and kept inviting me home. My most favourite Hussaini Uncle, held on to a doll and kept telling me "he is a good boy most times" as I sat there talking to him.....and not to forget Bhaskar Uncle, Peter Uncle, Hariprasad Uncle, Meera Aunty and others there who stole my heart.

The environment there was calming, beautiful and green and the peace that came over me being there is unexplainable. It was no wonder therefore that the elders there are happy living in their own little world amongst nature in the loving care of the caregivers. As the day progressed and the more time I spent there, I realised that just reading up about the disease was so academic and clinical. Watching them trying to communicate with us made me realise human contact, a hug, holding the hand is so necessary that since that day at A1 Snehanjali, I have been hugging my daughter more each day. 

Not to forget first and foremost, the fear of Dementia which scares us and I admit that I am one of those who is frightened too. Everyone according to me should visit once and I promise that you will come home with a lot more patience and understanding for elders. I can't explain what went through my mind, as I watched the elders and the caregivers at the assisted living elder care home that day. There was not much that I could do but to hold their hands and talk to them hoping that they were understanding me. That being key, it made me wonder how a family remains sane dealing with this unfamiliar, dark and unknown world of their loved ones, especially the children in the family. When it is not easy for the adults, I cannot even imagine what the children must be going through. 

At the end of it all, when the film was edited (a big thanks to Drishti and Amritraj) and uploaded, I knew that I had fulfilled a promise made to myself long ago. Whether I win or lose the contest, it just does not matter anymore. I just revel in the thought that there will be a panel of eminent people on the jury and others at the YES Foundation, who will see my film. Maybe, just maybe the film will touch a heart and there will be someone out there who will reach out to Sailesh, as there is so much that needs to be done, so much more to be brought to the forefront and addressed. My friend and lone unsung soldier, Sailesh who is doing just that, on his own steam, needs to be recognised and supported. He truly understands the challenges and emotional needs of these elders and their families enough to continue to pursue his passion and dream of an elder friendly world. I, on my part, will continue to support him in my own little way and that goes without saying. His mantra "the silver-haired are not retired but rewired today and deserve to enjoy their second childhood”, is actually my mantra of life today. 

They call me an Alzheimer patient

Dedicated to all those suffering with Alzheimer....All we need is to understand and hold our hands out to them................Dedicated to Sailesh Mishra, Silver Innings for his fantastic work and dedication in this field....

Oh maan meri, where do you wander?

Kehne ko toh saath hai tu, aye maan, par saath nahin

Kuch dhundhali yaadon mein kho gaya hai tu kahin

Meri duniya mein, sirf main hun , sirf main

Anjaane se veerane,  koi awaaz nahin

Tum kaun ho joh aaye ho aaj paas

Mere dost ho, dushman, ya mere koi khaas

Din raat, raat din, aur nahin koi mere saath

Kaun bhool gaya mujhe,  kisne choda haath

Savera na hoga, Shaam na hogi is man mein

Kehne ko to saath hai tu, aye maan, par saath nahin

Mind oh mind, you are with me, but not with me anymore

You are fading memories that were my life for sure

It’s just me and only me that I recognise

Dark and forlorn, a heartbeat that’s no more mine

Memories that flash by, disturb and never last

Is it today I remember or is it the long gone past

Eating away at the person I must have been

The loved ones, hard work and life I must have seen

I recollect things I cannot change that aren’t real

Flashing thoughts, shadows and words that fizzle

Oh mind of mine, where do you wander?