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Watch: ‘Astu – So Be It’

A Marathi film with English subtitles, it deals with the grim issues of Alzheimer’s, memory loss and lack of identity.
by The Editors | editor@themetrognome.in

As part of our ongoing campaign to observe all of September 2014 as the Alzheimer’s Awareness Month, we are glad to feature this film screening that will take place tonight at the NCPA.

Astu posterThe film, Astu, is a Marathi film with English subtitles. It tells the story of Mr Shastri, or Appa, a retired Sanskrit professor, who suffers from Alzheimer’s, and who goes missing while travelling with his daughter. His daughter, Ira, and her doctor husband Madhav, are trying to cope with Appa’s decaying memory. When he disappears, Ira is a in panic and trapped in the chain of Appa’s memory, while Appa is living his day moment-to-moment with a tramp couple Anta and Channama and their elephant Laxmi. How will the two parallel tracks meet?

Featuring a critically-acclaimed performance by Dr Mohan Agashe and supported by actors Iravati Harshe, Milind Soman and Amruta Subhash, the film is directed by the award-winning director duo Sumitra Bhave and Sunil Sukhtankar.

Head to the NCPA this evening at 6.30 pm. Admission is on a first-come-first-served basis. NCPA members will get preferential seating till 6.20 pm.

The Metrognome is observing an Alzheimer’s Awareness Month all through September 2014. World Alzheimer’s Day is on September 21 every year. If you have Alzheimer’s related anecdotes, tips, events or general observations to share, write to editor@themetrognome.in and we will publish your views in this space.

(Pictures courtesy www.iffk.in, entertainmentsandhira.wordpress.com)

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Losing a grandmother to ‘that’ disease

Rachel Tseng describes the agony and helplessness of watching a beloved relative succumb to the ravages of Alzheimer’s Disorder (AD).

For most people Kolkata is a place synonymous to rasagollas and puchkas but for me it is a place reminiscent of my childhood vacations spent with my grandparents, aunts, uncles, cousins, their grandparents and the whole jing-bang of distant relatives and family friends.

Once during a head count, I was included as a grandchild by my cousin brother’s paternal grandmother. Since I was staying over at my cousin’s home, his grandmother very generously christened me as one of her grandchildren. Predictable as it sounds, I grew very fond of her and was completely drawn to her very generous and loving personality.

alzheimer's careOver the years during every visit to Kolkata I would actually look forward to meeting her. But on one particular visit, she failed to recognise me and it was then that my cousins told me that she was suffering from Alzheimer’s. I knew about Alzheimer’s, the symptoms and what it does to you but it was the first time in my life that the Alzheimer disease struck someone I knew and admired. It was a heart wrenching experience watching her lose herself to the disease. There was nothing that we could do except be patient and be there for her.

The pain that she went through is something that nobody can comprehend. She rarely had memory of her present. Sometimes she had a perfect memory of her childhood and would wonder what she is doing amongst strangers who were actually her children and grandchildren. She would cry out like a child in distress and demand to be taken back to her childhood home, recounting her maiden address and the identity of her parents. In response, we pacified her like a child, promising to take her to her parents in the hope that she would snap out of it soon.

On another occasion, she refused to recognise her grandchildren and even called them untouchables and thieves. She would hide anything and everything, including food, in cupboards and draws in the fear that ‘the thieves’ who had invaded her home would steal her belongings.

Once she even ran away from home, hopped into a cycle-rickshaw and asked the driver to take her to her son’s home in America. The rickshaw driver was initially shocked and thought that he probably hadn’t understood the address and requested her to give directions. As soon as he started off, my uncle who was in his car spotted her sitting in the open cycle rickshaw like a queen on her throne. My uncle immediately intervened, explained about her condition to the rickshaw driver and drove her home, much to her annoyance.

During the last few days of my stay in Kolkata, one afternoon she came up to me, called me by my name and commented on how I had grown to be a replica of my mother. We spoke alzheimer's memory gapsabout my cousins and she even expressed her love for her daughter-in-law (who is my aunt) and appreciated everything that the family had done for her. She spoke in the most normal way, just like the way she spoke to me during my earlier visits and before Alzheimer’s.

At that moment, although she was in the present and everything she said made perfect sense, I could see it in her eyes that she had no idea of what she had been suffering from and how it had worn her out.

This went on for about 12 years before she faced her end.

The degree of pain and suffering an Alzheimer’s patient goes through is something I am unable to understand or express. But one thing for sure, the family of an Alzheimer’s patient suffers in silence with immense grief and anguish. It takes a lot of patience and endless love to live with and care for a family member with Alzheimer’s.

This is the last of the series of articles that we featured on Alzheimer’s awareness as part of our campaign to focus the spotlight on dementia and Alzheimer’s. However, we are committed to the cause and welcome news of new developments in the field of elder care and positive ageing. If you have something to share, do write to us at editor@themetrognome.in or tweet to us @MetrognomeIndia.

(Pictures courtesy trialx.com, io9.com, www.smallfootprintfamily.com. Images are used for representational purpose only)

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‘Political involvement translates to advocacy and awareness’

Our campaign partner, Silver Innings Foundation, was thrilled to host a local municipal councillor at their Alzheimer’s Day event yesterday.
by The Editors | editor@themetrognome.in
Yesterday, on the occasion of World Alzheimer’s Day (observed globally every year on September 29), the Silver Innings Foundation celebrated a few events at their newly-opened indept attentionassisted elder care facility at Nala Sopara. The facility, A1 Snehanjali, held an interactive talk and play, played an interactive PPT and showed an inspiring video.
“A total of 55 people participated from various churches, senior citizens associations, women’s NGO Sakhaya, students from Nirmala Niketan College of Social work and residents and staff of A1 Snehanjali. Interestingly, the programme was inaugurated by chief guest corporator Rajan Nayak of Vasai Virar Municipal Corporation,” said Sailesh Mishra, Founder, Silver Innings.
He added, “It is important for persons from the political sphere to associate with activities pertaining to elder care and disorders such as Alzheimer’s and dementia. Their participation becomes an important support for any advocacy and public awareness campaigns. If we can sensitise elected public representatives and politicians, the awareness movement can easily penetrate at the grass root level.”
Local churches in the Nala Sopara (west) area also participated by sending two representatives each.
(Pictures courtesy Silver Innings Foundation)
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When I lost my father to Alzheimer’s

The disorder can wreak havoc with a person’s life, and he or she can wither away before your eyes.

 

Humra Quraishiby Humra Quraishi

Those affected by the Alzheimer’s disorder change drastically, beyond recognition. Their memory becomes ‘polka dotted’, with only little islands of memory remaining. With pathological changes in the brain beginning to take place, the affected person’s lifestyle and personality, and everything else connected with them undergo a sharp transformation. The affected person may get into a shell or turn aggressive, or could sit looking lost and forlorn. And as the memory cells deteriorate and decline, the affected person finds it difficult to recognise his or her children.

My family didn’t have the slightest clue about the Alzheimer’s Disorder (AD) until it struck home. My father, Iqtidar Ali Khan, started displaying symptoms soon after his retirement. He began forgetting mundane things and started slipping into depression. At times, he would sit all by himself, looking lost and forlorn, or else sit sobbing. When we would sit beside him and hold his hand, or hug him, he would feel reassured. We didn’t realise that there was something more to the apparent bouts of depression and forgetfulness.

Then, one day, my father got lost in the park. More such incidents followed. Though he had been driving for decades, he suddenly couldn’t drive with the same confidence. Then he lost the sense of roads and familiar settings.

Within weeks, my handsome and well-dressed father had changed. Earlier, he had been very particular about going to the club alzheimersfor tennis or going on long drives, but within a short period of time, all that changed. He seemed lost, shutting himself into a shell…his memory shrank with each passing day. In effect, this is what Alzheimer’s roughly all about: shrinkage of the memory cells and the consequent degeneration.

My father passed away in 1996, but a couple of years before that, he couldn’t recognise us. He just stopped recognising us. His eyes conveyed restlessness, as though he wanted to say much or as if he was trying his utmost to connect with us and reach out. Sometimes he would murmur sentences and recall some incident, long gone by; something from his childhood or young life, maybe. Occasionally he would burst into tears, sob like a baby, and even go looking for his dead mother or his siblings.

One incident, in particular, shattered us. We saw him looking for something he seemed to have lost. He moved about restlessly, peering under beds, behind sofas and doors. When we asked him what the matter was, he spoke with restless impatience, “Where are my children? I’m looking for them. They’re lost! Find my children…are they lost or what!”

We were standing right there, staring at him in utter disbelief, but he couldn’t recognise us.  He had been a doting father, helping us not just with our homework but even during the emotional turmoils of our lives. Always a family man, he would wait at the dining table and not eat before all of us had assembled for dinner or any meal. An engineer by profession, he would take us on his tours when he would supervise the construction of the various dams around Jhansi town.

I cannot describe how difficult and traumatic it is to see these painful changes. It is important to mention here that the role of the immediate family is crucial. The only time my father would look a bit peaceful was when we sat close by, holding his hand, clasping him as if to reassure him. Human bonding takes care of much of the pain that an AD-affected goes through.

(Pictures courtesy thinkprogress.org, www.cnn.com. Images are used for representational purpose only) 

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City hosts three dementia seminars

Dementia and Alzheimer’s awareness seminars at three places in the city reached out to several relevant stakeholders. A pitch report.
by The Editors | editor@themetrognome.in

The Mumbai-based social enterprise, Echoing Healthy Aging (EHA) organised seminars on dementia and Alzheimer’s at venues in South Mumbai, Mulund and Bandra last week. The seminars, titled ‘Dementia Sense’ were held to coincide with September 21, World Alzheimer’s Day.

The seminars got a very good response from participants and especially from stakeholders such as nursing schools, caregivers, family members of dementia sufferers, occupation therapists, matrons and nursing tutors, among others.

A senior nurse from Bhakti Vedant Hospital said, “As a nurse, very often I come across old patient [suffering] with Alzheimer’s. I always found it difficult to understand their behaviour. This seminar helped me understand the point of view of the person with dementia and the five golden rules given in the seminar will definitely help me to work more efficiently in caring for patients with dementia.”

Added a senior lecturer from Sion Hospital’s nursing school, “It is time for us to change our attitudes towards this chronic disease ‘dementia’, and support families of people living with dementia. I hope more such seminars are conducted more often, and they will make people realise that people living with dementia too can have a good quality of life.”

‘I had to put variety of locks on my front door,so that my husband diagnosed with severe dementia, doesn’t go out of house and forget his way back home. But this caused more agitation and aggression in him. This seminar gave me tips to solve this problem and they are simple and easy to implement. It will also give my husband a sense of independence and at the same time, I can keep him safe,” explained a family caregiver of a person suffering from dementia.

See a few pictures from the event:

 

(Pictures courtesy EHA)
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Observing World Alzheimer’s Day in Mumbai

Two Mumbai-based NGOs and a college held events for senior citizens at Borivli and Malad on Saturday. Here’s a roundup.
by The Editors | editor@themetrognome.in

If more opportunities are provided for senior citizens to not just meet others of their age group, but also those much younger than them, the results can be electric.

This was amply demonstrated in Borivli and Malad on Saturday, September 21, as the Silver Innings Foundation and the Mumbai Chapter of the ARDSI held interactive events and talks for senior citizens at Nani Nani Park, Borivli, and St Thomas Orthodox Church, Malad. Over 450 elders participated in both events, and responded warmly and positively to the informative talks, street plays by Tata Institute of Social Sciences (TISS) students, memory checkup sessions and the final laughter therapy session. “More than 50 per cent of the attendees were women,” said Sailesh Mishra of Silver Innings. “We even had brain games for them. Overall, both sessions were about 1.5 hours long.”

He added that the key collaborators on the events – Pushpa Ma Foundation and the Church – were excellent partners to have for the project. “The community, especially the church support for such awareness [of Alzheimer’s and dementia] will make a huge impact,” Sailesh explained. “More such spiritual organisations should be involved in India for creating awareness of social issues. It becomes easier for outreach.”

See pics of the events below:

The Metrognome has partnered with Silver Innings and ARDSI for Alzheimer’s Awareness month for all of September 2013. If you want to share information, event details or a personal anecdote related to dementia and Alzheimer’s, please send it to us at editor@themetrognome.in and we will feature it.

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