A Look into Life of a Dementia Caregiver

City Express profiles people whose lives change when they become caregivers to their loved ones suffering from Alzheimer’s or Dementia. Here’s one such family in a series

Published: 15th September 2015 04:05 AM  |   Last Updated: 15th September 2015 04:05 AM   |  A+A-

CHENNAI: When Vijaya saw her 93-year-old father Sundaram entering their neighbour’s house in the ground floor of the apartment where her family lived, she initially thought he was going there to meet his friend. However, a few minutes later, she spotted him standing outside again with a blank look on his face.

“When I approached him, he said he didn’t know why his friends’ family had assembled in his house,” recalls Vijaya. “My brothers and our families have been living in a rented house on the second floor for eight years. My father thought he was at his own house, which is on the ground floor but a few blocks away. When I reminded him that we were staying in the rented place, he was quite embarrassed, but we convinced him it was okay.”

That incident of memory loss was probably one of the first earlier symptoms of Dementia, which, like most people, Vijaya and her brothers attributed it to old age. “He was 93 and we thought it was normal for him to forget such things,” she says.

Dementia.jpgSoon after the incident, her mother passed away and Sundaram, who seemed to have coped with the loss well, began to forget things very often. “He began imagining a lot and couldn’t differentiate between real life and what was shown on TV. Once he saw some action scene on TV and told us to shut all doors as someone was pelting stones at our house,” she explains.

That’s when the family realised something was seriously wrong, and took him to a neurologist, who diagnosed him with Dementia, a disorder marked by memory loss, personality changes and impaired reasoning.

“Our general physician explained to us about the condition. He told us it was about ‘care more than cure’ and that it required a lot of patience. All of us thought we were prepared for it but it was a nightmare,” she explains.

For instance, Sundaram could never understand why his children – Velu, Govindan and Raghu – always fussed about a routine that was new to him. Being a man of few words, he found it odd to see his grandchildren trying to strike a conversation with him, or sit in the bed next to his while he slept. Vijaya recollects, “He never over-indulged with food, but over the years, his appetite had reduced to a few morsels of food. At times, he barely ate. Sometimes, he behaved like a kid and would refuse to open his mouth. And it would take an hour to get him to eat a little.”

Every morning, when Sundaram woke up, he would Govindan, if they had arrived at their destination. Says Govindan, “When he was working in Andhra Pradesh, my father used to travel a lot on work. I suppose he felt like he was on a train and in the morning, when he woke-up, he was awaiting his destination.”

Another challenge the family faced was to make Sundaram wear diapers. “He used to rip it apart every time. He hated it and insisted on going to the bathroom. And he’d get very upset and angry if we accompanied him to the bathroom. He also fell quite often. So we installed railings in the bathroom,” adds Govindan. “He often slipped into bouts of depression and cried over things he couldn’t explain. And during those times, he wouldn’t speak to anyone.”

Amid all changes the family, there was something that Sundaram’s elder son was unprepared for. “My father didn’t know who I was, though he had lived with me all his life,” says Velu tearfully. “He called me ‘appa’…he thought I was his father.”

Lata, Velu’s wife, was his primary caregiver, but Sundaram didn’t recognise her too. He often mistook her for a guest and would enquire about her husband. Says Lata “I would tell him I was his elder daughter-in-law and he would feel very sad for forgetting me. A few days later, he would repeat the same question.”

The family was fortunate they lived next to each other, because if one had to go on errands, the others would take turns to take care of Sundaram in the morning. It was a timetable strictly followed by everyone in the family.

Nights weren’t easy either. “Most nights, I’d find him sleeping on the floor and he’d refuse to sleep in his bed. I used to feel helpless and lose my temper with him. Later, I realised that wasn’t the solution,” says Raghu. “There were many mornings, when one of us would find him cowering in the corner of the bathroom. I’d barely sleep some nights, only to ensure that he wouldn’t wander away!”

Adds his wife, Usha, “I hated being a working woman. I’d be five minutes late from work and I’d find him crying. He’d tell me he was very hungry and couldn’t bear it anymore. It was frustrating and difficult but I ensured there was food whenever he needed.”

Being caregivers of patients with Dementia is never easy and often, the caregivers are senior citizens too, with their share of health issues. Says Velu, a heart patient, “Some nights, I’d wake up fearing that he might not be in his bed. Such thoughts made me sleep very less. To make up for it, I slept well in the afternoons just to stay up in the night.” Sundaram passed away at the age of 95, more than two years after his wife’s demise. But Govind says the last two years he spent with his father “was a god send opportunity for me to serve my father. I’d do it for longer without a second thought.”

(All names changed to protect privacy )

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