21 April 2012
At Alzheimer Disease International (ADI) in London (March 2012), I was fortunate enough to meet Dr Roy, who is not only Chairman of ARDSI (Alzheimer’s and Related Disorders Society of India), but also the newly elected Chairman of Alzheimer International.
Dr Roy graciously invited me to visit him in Kunnumkulam and when he returned home he ‘introduced’ me to Babu Varghese, who is not only a fellow MSc student at Stirling University, but also the Project Officer for ARDSI in Kerala.
Babu has arranged a week of visits in Kerala so that I can immerse myself in the work being done there … I fly to Cochin City from Goa on 27th May and will be there to learn about:
- Dementia families
- Day Care Centres
- Full time Dementia Care Centres
- Public Awareness programmes
- Training programmes
Finally – Kerala!
June 3 2012
Flying from Goa to Cochin City via Bangalore was quite an eye-opener. They call Kerala ‘God’s own country’ and I can certainly see why! Very beautiful. Besides the number of people increasing ten fold … if that’s possible says Andrew … he really is bothered by the vast crowds everywhere, except thankfully on our street in Colva which is nicely tucked away … almost home from home … the people and the crowds and the noise levels are what actually add to the colour and the ambience and the sheer exuberance and joy of being in this place.
The airport was slick and modern … something I really didn’t expect … and Cochin itself a huge sophisticated city with people and bill boards and cars and scooters and more people and shops and high rise buildings and more people on every inch of land and on the roads, but there are also the outlying villages.
And that’s where Babu Varghese (Project Officer at Cochin ARDSI) and his family live and where I stayed the first night. Again the heat with the humidity … so high that during the night I woke up barely able to breath, but then this morning the rains came … and everyone was singing ‘inky pinky spider’ … in fact I’d lain in bed thinking ‘goodness someone is taking a long shower’ and then realised it was the heavy rains! Sounded so good, I recorded it!!!!
But afterwards we walked in the gardens with groves of guava trees and mango trees and bananas and papaya (all picked from the trees for breakfast) with pepper vines growing up and through everything … and nutmeg trees and tumeric plants and a huge rubber tree plantation at the back of the house. And aubergine bushes and a huge, really huge coriander tree … I can never get my coriander to grow more than a scraggly bush as home! Just amazing walking through these tropical gardens.
The next day I visited ARDSI in Cochin and joined a training workshop for managers of Care Homes and Senior Citizens Associations (Age Concern) and was fascinated how it was formally opened with prayer and a candle lighting ceremony.
The speakers included a psychiatrist, a homeopathic doctor, nurses and people from ARDSI (equivalent to our Alzheimer Scotland) all giving practical information regarding dementia iself, but what also intrigued me was how the emphasis of the training also always included the caregiver … in fact the paper I gave was a version of the ‘Learning from Caregiver Mistakes’ from Warsaw last year.
Over the week I worked with many students, both Home Care lay workers and MSc nursing students … and was amazed at the depth of questions they asked and their understanding of caregiver stress: their levels of compassion – and common sense – were obvious and it was a joy working with them.
The workshop was held at the ARDSI Centre which also hosts a day centre for people with dementia: four workers to 10 people with dementia. This is the first Dementia organisation started in Kerala by Dr Roy who is now the Alzheimer International Chairman.
And then we had lunch! No cutlery, so I took a deep breath and ate with my fingers like everyone else. Off a banana plate. I kept thinking if my kids could see me now … Mummy, what are you doing??? I must admit have always enjoyed eating chicken bones with my fingers, but scraping up rice with curry gravy and bits of chicken with my fingers was something else … We had chicken Biriyani and I got the recipe - the secret ingredients - from Latha Joseph, the Administrator of the Centre … it is divine and was worth working the fingers …
♦ ♦ ♦ ♦
I visited the famous ARDSI Cochin Harmony Home and again was struck by the feeling of home from home … so different to our more institutionalised homes. This is a bedroom looking out on to the groves of trees. Such emphasis on gardens here …
Staff and people with dementia interact all the time, with a wonderfully touchy huggy style, much laughter and even a freedom … because of the hot weather, the gates of the property – rather than the doors of the house – are locked for safety and everyone, including the people with dementia, are free to wander around the huge gardens and all over the house: exactly as they’d do in their own family home.
Again I think of that man in the BBC programme about Phoenix and remember how desperately he wanted to open the doors and just go outside for a walk and feel his toes in the grass …
Then we visited a palliative care Catholic hospice for cancer patients. In total 4 Sisters – together with 10 trained nurses – ran the wards and while many of the patients were bedridden, those who were not, mucked in and helped with the chores, making everyone feel useful. It was quite an eye-opener.
John Sarji and Sister Mary Valsa, the managers in these two places, were also so generous with their time and experience and answered my long list of questions. Will do detailed reports of both these visits …
Santhiniketan Old Age Home, Kalady
7 June 2012
In Kerala I also visited the Santhiniketan Old Age Home in Kalady outside of Cochin. This is the grand entrance. We arrived in the monsoon and were soaked just running from the car to the building. Looked like a drowned rat, but the sun came out a few minutes later and we dried up in no time! Thank goodness for the flipflops … which you leave at the door … you never wear shoes inside any building … and I keep wondering if they’ll still be there when we come back out again, but they always are!
I actually asked my Mr Laxman (Goa driver) how come cows and elephants and chickens wander so freely all over the place … with owners apparently oblivious to the obvious issues of pinching!! He looked at me in horror: no-one would pinch another man’s cow or chicken … or goat or elephant. I thought how nice that philosophy would be in our world???
There were about 50 residents of all ages waiting for us and what struck me so forcefully was again how cheerful and happy everyone seemed to be! Smiles from everyone … the residents and the staff alike. And again beautiful gardens, huge airy open rooms and freedom to roam and do just about what they like when they like with whomever they like. In one corner, school children were laughing with residents, in another staff were playing a board game with residents and in yet another a group of men were solving the world’s problems while alongside them a group of woman were chatting. No regimentation and no strict rules … home from home!
Babu Varghese (ARDSI – the equivalent of our Alzheimer Scotland) was there to tell them about dementia – part of ARDSI’s awareness programme. ARDSI has a mammoth task ahead of them: there are over 100 care homes in Cochin City alone with anything up to 100 residents in each and dementia is not anywhere on any radar. Most are privately run i.e. fees from the families (again most are away working or studying) and the residents have their own doctors. So to intrude and try and set up memory clinics or dementia programmes can be seen to be invasive. However, by talking to the residents reasonably regularly, the idea is to remove some of the stigma about dementia and encourage the residents themselves to ask for a memory test.
A team of a dozen Health Care Workers was also present and after the presentation I noticed that each one took time to talk to a resident and used the time to get to know the person, at the same time giving that person the confidence to open up and talk. And my goodness talk they did. Again dementia was not the only subject discussed and many other issues around ‘getting old’ were raised by the residents
One man delightfully piped up ‘ignorance is bliss’, everyone laughed and then settled down to listen. Of course no-one wants to hear about dementia, but when I piped back ‘two reasons for having an early diagnosis is that you can tell you loved ones what your wishes are e.g. that Andrew’s wish is that as his dementia progresses, he still wants to ‘do’ things like going places and his photography, not be sat in front of a television all day … and the second one is that you can get your financial affairs in order. Then they sat up and listened.
Interestingly it is the eldest male of the household who has total control of the family … his wife, his children … even his grown-up children, specially his daughters. Imagine the problems that arise if he develops dementia? And only if the father agrees to a love marriage instead of an arranged one can it happen. I asked my taxi driver (mine of information these men!) if most of his generation have arranged marriages, doesn’t anyone ever ‘fall in love’ in India? This he said is what is now causing major problems: when wives stayed at home in the old days, they never met outsiders to fall in love with … but now that family finances require the wife to work, she is meeting those outsiders and ‘falling in love’, resulting in families breaking up and society dramatically changing.
On a happier note, Cochin City is a wondrous mix of high rise buildings and palm tree groves between lots of water … the river and the sea. And here too modern high speed ferries cruise between small fishing boats and alongside fishing nets in the water … wooden contraptions that drop nets into the river and when raised produce hundreds of little fish … The fishermen swim around in the water dropping and raising the nets … apparently this is fishing from ancient times … and is called the ‘Chinese’ way of fishing.