Dementia begins with loss of memory. You get confused in a new place, then slowly, you can't find the toilet or the bedroom in your own four-roomed apartment.”
Poonam Natarajan, who set up a home for spastic children in Chennai and is today the chairperson of the National Trust set up by the Government under the Ministry for Social Justice and Empowerment for the differently abled, narrates the slow onslaught of Alzheimer's in her mother, Nirmal, a vibrant, active woman who ran her own school in Delhi for many years.
As the population of 80-plus increases you hear more about Alzheimer's, dementia and other related disorders but it is not till you have experienced it in someone close that you realise the enormous patience, courage and perseverance required to care for such people. An estimated 3.7 million in India have Alzheimer's and related disorders. Unlike in the West they have to be cared for and supported by the family at home because there are no special facilities that do so.
As Poonam placed on the desk three photographs of her mother and started telling the story of her descent into dementia, there was many a wet eye in the room full of tough journalists, HelpAge professionals and doctors specialising in geriatric care. HelpAge had organised a media consultation at the start of its year-long campaign on Ageing and Health and Poonam's presentation brought home the tremendous challenges in caring for those with Alzheimer's.
A wonderful cook who had turned out fabulous meals as an army officer's wife, Nirmal suddenly lost her ability to make tea. The family worried she may forget to switch off the gas or burn herself while in the kitchen. So her husband took on the responsibility of making the first cup of tea in the bedroom.
The first signs of dementia were noticed when Nirmal was about 71 years. She wanted to go to the school she had set up because the children and teachers would be waiting for her. It was difficult to tell her she was no longer in a state to run the school. Though she still remembered she was a teacher, in her fragmented mind she was back in her childhood and kept recollecting her family home in Amritsar, her brothers and parents. She wanted to go and meet them. She had no recollection of her 50 years of married life or of the family she had raised. Thinking she was still young, she wanted to pull out the grey hairs on her head and when Poonam introduced herself to morning walkers as her daughter, she turned around and told Poonam, “You can't be my daughter!”
She kept walking out of her house, probably in the hope of finding her old home in Amritsar. Fortunately, Poonam and her parents lived in an Army housing society and everyone knew Nirmal Mehra and her problems. They kept a watch on her and ensured she never strayed out of the colony or injured herself. Over the next 12 years, Nirmal's condition deteriorated. It was difficult finding care-givers because it's an extremely stressful job, and Poonam, her sister Preeti, their father and two other helpers shared the responsibility of watching over her and trying to make her laugh so that they too could laugh and relieve their own stress. There was a constant effort to jog her memory, to make her recall the happy moments of her life. Tara, says Poonam, a young girl who had been with the family for a few years, was one of the finest care-givers. She was neither trained nor educated but was a loving, caring and extremely patient person.
The Caregiver's Handbook, prepared by the Alzheimer's and Related Disorders Society of India, says “perform enjoyable activities. Create the opportunity to reflect on life. Many patients enjoy going through old photo albums and talking about happy and enjoyable events. You may also want to sing familiar songs that evoke old memories and feelings. Allow the person with Alzheimer's to tell stories even if he repeats the same story over and over again. Help the patient explore his feelings with comments like “you really liked visiting your uncle, didn't you? That was a really happy time for you.”
Even taking Nirmal to the specialist was difficult. She refused the IQ test and either could not or would not write. At home she could not find the toilet and incontinence set in, so diapers had to be used. Slowly she lost all her abilities. She began losing her fine and gross motor movements, and with them her social circle. She had to be taken around on a wheelchair. “When the social circle recedes, it is sad,” says Poonam. Even in the residential complex, people who wanted to talk to her did not know how to engage her. Friends and family stopped coming to see her. Poonam's father, who died 20 months before Nirmal, was shattered to see his lively, dynamic companion of over 55 years reduced to this state.
Poonam and her sister, however, kept “ringing the bell and trying to keep Nirmal's mind ticking till the very end”. Quoting Leonard Cohen's Anthem , Poonam recited:
The birds they sang at the break of dawn
Start again, I heard them say
Don't dwell on what has passed away
Or what is yet to be
Ring the bell that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in
Responding to the enormous need for care-givers, the National Trust has been training young people as Sahyoginis.
“We need to think of a support system for the mounting number of cases of Alzheimer's,” says Poonam. “They could be very young girls and boys who have a caring streak.”
How to tell
Normal
Temporarily forgetting a colleague's name
Forgetting where keys were placed
Unable to find the right word but using a fitting substitute
Forgetting for a moment where you are
Talking on the phone and temporarily forgetting the topic
Having trouble balancing a cheque book
Misplacing wristwatch, but retracing the steps
Having a bad day
Gradual change in personality
Tiring of housework but getting back to it
Warning signs
Not being able to remember the name later
Forgetting that the meal was ever prepared/burning of food on stove
Uttering incomprehensible sentences
Getting lost on a familiar street
Forgetting topic with no recall at all
Not knowing what the numbers mean
Putting the wristwatch in a sugar bowl/ spectacles in a water glass
Having rapid mood swings
Drastic personality change
Not knowing or caring about housework that needs to be done