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In about two decades, India will have the largest number of elderly in the world. This will significantly push up incidence of Alzheimer's disease. Lensman Shashwat Malik spent more than two months with four patients in Gurgaon, capturing their pain and confusion. But even amid the slipping memories, there were childlike moments of joy, and inspiring stories of children nursing their parents.
KAMLA MANCHANDA | 90
Kamla fractured her hip after a fall in August 2011. During her 10-day long hospitalisation post-surgery, what had over the last few months been her gradually progressing forgetfulness turned into behaviour that could no longer be seen by her family as a natural consequence of age. Tanvi, her 26-year-old granddaughter, recalls entering her room to find a "glazed look on her face". "She wasn't all there. We thought it would go away, that it was just trauma. But it didn't. She was incoherent. She couldn't understand simple instructions - she kept pulling the cannula and seemed to be fighting with the sheets. " Kamla was diagnosed with Alzheimer's soon after.
In a wheelchair since the surgery and in an advanced stage of the disease, the once-gentle Kamla sometimes screams through the night. Sundowning - or increased confusion and agitation as daylight fades - is seen in many Alzheimer's patients.
Since she needs 24-hour care, Kavita, her daughter, has given up her job as an interior designer. She feeds her, calms her down when she is agitated by holding her hand, ensures the catheter is not blocked, reminds the untrained caregiver to be polite, and then collapses for a small rest, often interrupted by her mother's screams.
This round-the-clock care - she even holds her mother's hand while sleeping - has taken over every aspect of her life. Alin, her husband, says, "We were very social people but now this situation requires all our attention. Any lapse on our part can lead to a crisis. "
S K BHATIA | 82
Most of Satish Bhatia's life (1948-1984 ) was spent in an illustrious Air Force career. But today, he gets some dates wrong when he talks about his early days in the Force. When corrected, he smiles and says, "Sorry, thodi gadbad ho jaati hai. " With some prompting, he starts again, "Now I'll tell you, now the link is drawn. " There are huge gaps in his memory and prompts don't always help. The last 12 years are particularly sketchy.
In 2006, his wife began noticing his tendency to forget things. She would give him a shopping list and he would return with only half the items. He would leave in his car but come home walking. He would ask for tea soon after he finished a cup. She told him to retire before he made a foolish mistake. Satish retired in 2008 at the age of 75 and his wife died soon after.
He decided to stay alone because he prized his independence. He would make his own breakfast but his son Sunil would bring him lunch and dinner. Over the next three years, Satish began to get increasingly forgetful. He forgot where he left his car after parking it in a mall. He lost his cheque books and was lured into buying multiple insurance policies with unaffordable premiums. He would forget to eat the meals left behind by Sunil. Early 2012, his MRI confirmed the disease. Sunil moved his father into his own house, now disregarding his wish to be independent. Slowly, the symptoms became difficult to manage. Satish's short-term memory worsened - he would ask Sunil's family: "Where am I?", "Why am I here?" To ensure that he didn't wander out, the gates of the house would be locked. He would bang on them, demanding to be let out. He became so aggressive with his caregivers that they had to be frequently changed.
Hoping that the move would soothe him somewhat, Sunil moved with his father to his old home. This to-and-fro happened a few times but his father's aggression could not be contained. In July, Satish took out the car and in a moment of confusion, rammed it into a wall. He was fortunate he wasn't injured but after this accident, Sunil decided that his father's disease would be best managed in an old age home. For the last six months, Satish has been staying in a room in John's Home in Ayanagar, Delhi. He thinks that this has been his home for the last 15 years.
He is no longer aggressive but he gets angry sometimes when he is being given a bath. Incontinence is a problm too. "How you see me now isn't what I was earlier. I keep searching for something lost;I don't know what's lost. "
ARUN SHANKAR ROY | 76
Sharmishta recalls the first incident that set off alarm bells. "I was visiting my parents in Kolkata. We had gone to a market and my daughter started crying for an ice-cream. My father crossed the road and bought a cone. When he started walking back, he went right past us. I looked to Ma and she said it had been happening for a while now. She told me he often lost his way home. " An appointment was fixed with a neurologist. During the two days of memory tests, Sharmishta saw her father struggle with basic addition problems even though he was always very good with numbers. The doctor diagnosed Arun with dementia that might progress to Alzheimer's. He was 64.
Sharmishta, his only child, shifted to Kolkata with her husband to be closer to her father. A few months later, Arun lost his way home. Neighbours found him after hours. His family asked him to wear a laminated tag that had his name, address, wife's phone number. Fiercely independent, he felt that this was beneath his dignity and hid the tag under his shirt. Arun's family became worried about his visits outdoors and started sending the domestic help to accompany him. With his condition declining, he thought he was being followed. He would sometimes withdraw money and hide it in the toilet cabinet. Says Sharmishta: "Social interactions became very uncomfortable for my mother. Father would accuse her of all sorts of things, in front of everyone. " Aggression grew and hallucinations started. Early in 2008, he was diagnosed with Alzheimer's. In his test, he failed to read a clock.
Sharmishta's husband was transferred to another city and Arun's caregiving had to be borne entirely by Arati, his wife. The fatigue led to a breakdown and Arati had to undergo psychiatric counseling. Sharmishta decided that her parents would move in with her. Over the next few months, Arun's physical condition declined - his speech became incomprehensible, his movements became uncoordinated and his legs started buckling. He needed a wheelchair.
On most days, he was a picture of serenity but any departure from the routine made him aggressive. His care-givers often got shouted at while trying to change his diapers and he suffered from occasional seizures. Sharmishta says, "My dad has lost his dignity and I do as much as I can to make him feel comfortable. He doesn't like being left out of conversations. I always keep talking to him. I don't know if he understands it all;I like to think he does. But I'm not sure he knows I'm his daughter. His world used to revolve around me but now, I don't know if he even recognises me. "
PARAMESWARAN | 85
Sitting in his room in an old age home, Parameswaran answers questions about his family - "I don't have any children. I have a brother;he has a wife. I have a wife who stays in Saket. In fact, she was here to see me. "
His wife died in 2009. When he is asked her name, he struggles for a few seconds and evades the question by saying, "As such, she is known as Mrs Parameswaran. "
Her cancer diagnosis in 2006 was followed a year later by his diagnosis of Alzheimer's. By then his own condition left him unable to take care of his wife. Memory decline had begun. He would go to the market and lose his way back home. He would forget where he parked his car. He became suspicious about his finances and started suffering from hallucinations. In 2009, after his wife's death, he moved in with his brother Ganapathy.
A week later, he couldn't recall when she died. He began to feel disoriented in the new house. Ganapathy and his wife Hema tried to make Parameswaran more comfortable. Hema says, "We tried to make a routine for him. He would go to buy milk but we would keep an eye on him. He would walk the dog. He would become fixated on something or the other - he would ask to be taken to his house in Saket to meet his wife;he would fuss over the dog, feeding her all the time. There came a point when his short-term memory wouldn't serve him for more than a minute. " He began to ask for meals right after he finished them. He wouldn't know if it's morning or evening. Hema says, "We would put him to bed at night and he would ask, 'Do I have to sleep now?'" In 2011, he slipped while walking the dog and had to undergo hip surgery. Long hospitalisation left him with bedsores. Incontinence set in. Hema says his speech became very limited after his surgery.
Caring for him became extremely difficult. Meanwhile, Ganapathy too began suffering from ill health. Two months after Parameswaran's surgery, they made the difficult decision to move him to John's Home, an old-age facility, where he is one of seven people with dementia. He recognises nobody - not even the man who stays in the room across his and comes to sit with him everyday.
"Memory, " he says, "is to keep things in mind forever. I remember the memorable. " All he can talk about is his love for swimming and yoga. He fondly remembers his dogs too. It is difficult to get him to talk about anything else. About his condition, he says, "I forget. I'm so old, 80 plus. I was healthy. That time is gone. "
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