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Who cares for caregivers?

with anxiety, helplessness and lack of sleep adding  to their existing worries, caregivers of patients with alzheimer's are often the invisible sufferers

Published: 23rd September 2020 06:00 AM  |   Last Updated: 23rd September 2020 06:00 AM   |  A+A-

ILLUSTRATION: TAPAS RANJAN

Express News Service

CHENNAI: It’s been over a year since amma went missing,” says a teary-eyed Sharadha Ravikumar, as she shows us around what was formerly her mother, Lalitha Raman’s, room over a video call. She opens a powder-pink cupboard, takes a set of cards and says, “These were sign cards that we stuck in various rooms, the staircase and the hallway to avoid any confusion.

Amma was very forgetful. She wouldn’t remember the way to her room, our names; she would even have to be reminded to use the washroom, or how to eat. After a year of being diagnosed with Alzheimer’s disease, it only became worse,” shares the business analyst, who turned caregiver for her mother, along with her husband and children, after the diagnosis in 2018.

“We used to share a close bond and the diagnosis was nothing but unfortunate. A retired teacher, she was the smartest person I knew…to see her forget who I was, hit me hard. Now, I live with the guilt of having lost her forever,” she says, showing us an image of a bespectacled Lalitha. After a year of caring for her septuagenarian mother, Sharadha noticed herself burning out and often feeling anxious. Noticing how caregiving was being detrimental to her health, her younger brother, Srikanth, stepped in.

When the Bengaluru resident offered to take care of his mother for a few months, giving 42-year-old Sharadha the time to recuperate, she readily agreed. “The family felt I needed some time off and that she too would, perhaps, feel better in a different setting. All was well until one night when I got a call from my brother. He was wailing and I could hear my sister-in-law frantically instructing her son to get the keys. After dinner, when everyone was wrapping uptheir day’s chores, amma had walked out of the house. They noticed she was missing only after an hour. Despite filing a police complaint and looking for her in the neighbourhood, she was nowhere to be found,” she narrates, breaking down.

“We were filled with guilt. But, we also know that it wasn’t anyone’s fault. To be vigilant and around someone 24X7 is a mammoth task. There is not much awareness about the struggles and needs of caregivers of those with Alzheimer’s disease. Every year, several cases of missing seniors are filed and a majority of cases are those with Alzheimer’s. Even today, our relatives accuse us of having been ‘careless’. But we did all we could. We miss her,” she says, her voice quivering.

An uncertain life
According to a World Alzheimer’s Report, there are over 4 million dementia patients in India, making it the third-largest population of dementia patients in the world. Estimates also project that 47 million-odd people in the world currently live with the disease, a number that is expected to double every 20 years. This not only means an increase in the number of people with symptoms related to declining functions of the brain (with Alzheimer’s disease being one of the most common manifestations) but also a spike in caregivers — the ‘invisible victims’ of Alzheimer’s.

But with a dearth of support groups and a lack of awareness about the condition, the future, is filled with uncertainties, say loved ones caring for their friends and family. For 24-year-old Aslam Mahmood, the past three years have been nothing short of a nightmare. When his father was diagnosed with the degenerative disease in 2017, the architecture graduate was in disbelief. “He had a very active lifestyle, used to ooze positivity and was sharp.

So, one day, when I noticed his struggle to tie his shoelace, I thought he was pulling a prank. ‘How can he forget something as simple as that?’ I thought to myself. But within a week, he forgot his way back home from work. It was scary to know that he was losing his memory. What if he had forgotten how to drive a car while in the vehicle? We immediately took him to the doctor and after several visits, he was diagnosed with Alzheimer’s,” he says, sounding bleak. Aslam’s father was merely 55 years old when he was diagnosed with the condition, falling under the canopy of earlyonset Alzheimer’s disease, which happens only to a few.

“Since the disease took hold of him, I have been at home, taking remote design projects that don’t require me to travel. My mother has been taking care of business to fend for the family and his treatment. Abbu has almost forgotten us…once, he thought I was an intruder and yelled at me, asking me to get out. There was another incident when he misplaced his glasses and blamed me for stealing it. When we sat him down and reminded him about who I was and where he had placed his glasses, he was puzzled, guilt-ridden and frustrated.

He felt helpless, so did we,” narrates Aslam, who monitors his father 24X7 and helps him in performing his everyday activities — from bathing, eating to grooming. “While I have no qualms about caring for my father, what is worrisome is the apathy and lack of awareness about the condition even among those in our immediate circle. Sometimes, when relatives come home and see my father struggling to remember where he is, instead of being understanding, they indulge in mockery,” rues Aslam, who recently started attending private therapy sessions.

“To take care of my father, I need to keep a check on my mental and physical health. On average, I sleep only for four hours a day. People often say that Alzheimer’s disease is the ‘social death’ of a person but it not only affects the one with the diagnosis…it affects those around them too. I wish people were more aware and supportive to ensure there is no caregiver burnout,” he says, sharing his experience of parenting a parent.

New-normal routine
With the pandemic scare and the lockdown that followed, several caregivers of Alzheimer’s patients have had to establish a new routine to help their family member adjust to the new normal. “My wife doesn’t understand why we can’t go out. She forgets when I instruct her to not touch surfaces. While going for a walk around the apartment block, she sometimes stops, stares at all people and asks why they are wearing masks…everything, in a matter of seconds, feels alien to her. But all I do is to reassure her that she is safe.

When someone forgets where they are, it snowballs into anxiety. So, the first step is to tell them they are safe,” shares Annamalai Parthiban, who has been a caregiver for his wife for the past four years. “Our children are in the US and I didn’t want to burden them with this responsibility. I was confident that I could take care of her. Some days are hard, especially since she has started having bowel incontinence,” says the 64-year-old.

Tending to his wife has become an all-consuming job, but Annamalai’s not ready to take any help yet. “She sometimes layers herself with multiple kurtis because she forgets that she already wore one. She would wake up at night, yell at me to get off her bed. But I love her; I am willing to do anything. However, I don’t have the burden of taking care of the finances as our children send money every month. It is harder for those without any support,” he says.

Seeking support
With not many support groups in the city for family members caring for persons with Alzheimer’s, many have taken to social media to connect with their ilk around the world and share their concerns, learnings and tips. “Better support is definitely a need. Many dismiss Alzheimer’s as a thing of old age. But there’s more to the condition than what people see on a superficial level,” says Chandrika Shankar, a 40-yearold former caregiver, who lost her father to the disease, after a five-year battle.

Addressing a topic that’s often shunned, she offers that caregivers and caregiving should not be glorified. “(Also), those who choose not to take care of their parent, spouse, or a sibling with the disease, should not be burdened by societal pressure. When appa was diagnosed with Alzheimer’s, I had two young children to care for. My mother was too old to take care of him.

So, we hired a professional caregiver. But, I was at the receiving end of unsolicited comments: ‘She doesn’t care for her father’, ‘She is lazy’…the list goes on,” she says, showing us a happy family photograph, perhaps the last one taken before her father’s passing.“I was surprised appa even smiled for the photograph. He had no clue what was going around him…but we wanted to document the time we had with him.

Amma wasn’t happy; she, as always, was worried. But we know he was taken care of till the end. Malliga amma, his nurse, has become a part of our family now. To be able to choose to not be a primary caregiver has to be normalised,” she adds.



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