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Love in the time of Alzheimer’s

Shriya Mohan | Updated on September 20, 2019 Published on September 20, 2019

Credits   -  ISTOCK.COM

On World Alzheimer’s Day, a look at how caregivers cope with the loss of memory in their loved ones

Shanta Rao still remembers the day it sank in. It was a cold winter in 2015, and the 74-year-old homemaker could feel the onset of her usual asthma attack. After having lived in the US for 50 years, she knew what she had to do — call for a cab and reach the neighbourhood hospital’s emergency ward.

She tried to get to the phone but was gasping for breath. She called out to her husband, R Ranga Rao, a retired mathematician. “Raju, call a cab. We need to go,” she said, knowing well that she would pass out soon.

He looked at the telephone. She pointed to the cab number scribbled on the emergency numbers held up by a fridge magnet. But he looked confused. The repeated gestures and prompts told him he needed to do something urgent but he couldn’t figure out what or how. She saw him stand there helpless, crushed with guilt.

Ranga Rao has Alzheimer’s Disease — one among 50 million people living with dementia across the world. While dementia is an umbrella term that refers to a decline in mental ability affecting cognitive tasks such as memory and reasoning, Alzheimer’s is its most common variant — an irreversible, progressive brain disorder that destroys memory and thinking skills. About two-thirds of people with dementia have Alzheimer’s.

“Alzheimer’s disease has taken over from cancer to become America’s most feared disease,” notes the World Alzheimer report of 2018 published by Alzheimer’s Disease International, a platform for more than 80 Alzheimer’s associations across the world. “There’s a new case in the world every three seconds. Blink twice, and that’s another one,” the report says.

Accept it: Civil society organisations such as ARDSI and Nightingales Medical Trust advocate creating a dementia-friendly environment   -  THE HINDU / K GOPINATHAN

 

India, with 4.4 million reported cases, has the second largest caseload of dementia in the world after China, says the latest Dementia Report published by the Alzheimer’s and Related Disorders Society of India (ARDSI). The medical fraternity and social workers believe that the actual number could be more than double the reported one.

“Over 90 per cent of dementia cases go undetected because of lack of awareness, delay in seeking proper medical help and, often, wrong diagnosis,” says Meera Pattabiraman, chairperson of the ARDSI, which offers support and resources for Alzheimer’s care through its 22 chapters across India.

On World Alzheimer’s Day — September 21 — as campaigns unfurl to turn the lens on the progressive disease, there is a need to focus on the caregivers. While research says people can be “dementia-prone” depending on a wide-ranging spectrum of risk factors such as heart disease, thyroid malfunction, diabetes, high cholesterol, genetic disorders or even pollution, what is undeniable is that while a cure is being sought for this complex disease, it is the caregiver who bears its load, caring for a loved one until the end, watching them fade away into oblivion, often without a flicker of recognition for their efforts.

Like the Raos of Illinois

Ranga Rao was the typical absent-minded professor, loved by his students and colleagues at the University of Illinois (UIC), Chicago, for his warm and generous nature. In his long stint at UIC, he made fundamental contributions to statistics, Lie groups and Lie algebra (pronounced ‘lee’), a complex mathematical set.

Almost a decade after he retired in 2001, his wife noticed that he had grown a lot quieter, and was losing interest in his passions — research, politics and music. Soon, he was losing the ability to do basic chores such as making himself a cup of coffee or checking the telephone directory and dialling a number. So that day in 2015, when Shanta had an asthma attack and Rao couldn’t understand that he had to call for a cab (she finally drove to the hospital herself), she understood the extent of his deterioration.

“I couldn’t stomach it,” she recalls, seated in her Chennai flat, where the two have been living since 2016.

Tender loving care: Shanta Rao (right) says she expects no miracles and takes each day as it comes   -  SHRIYA MOHAN

 

A year before the Chicago incident, when her husband started omitting words from a sentence or drifting away in the midst of a conversation, Shanta had met one of Chennai’s leading neurologists. The tests confirmed that it was Alzheimer’s Disease and it had probably set in a decade earlier.

“The doctor told me that this was a progressive disease. That my real ordeal would begin soon and it would get far worse. He would forget everything,” she says. “For a year after that I kept covering up for him. I couldn’t bear to admit to myself and to others that he wasn’t together anymore. I didn’t have the courage,” she admits.

They moved back to India permanently to stay close to family and brace for the storm. He went from calm to violent in no time. “He would try to lift beds and climb walls. He would want to walk three miles a day, bursting with energy,” she says.

He began to address her as “amma” or mother, forgetting her name. He needed to be washed, bathed, fed and cuddled to sleep. He lost 99 per cent of his vocabulary. He recognised nobody but her. He spilled burning coffee on himself, scalding his skin. He cut his eyebrows by accidentally banging his head against the edge of a table. There were stitches, dressings and trips to the hospital for injuries small and big, all of them disorienting him further. They stopped travelling even for brief outings after doctors said he needed to be in a familiar place to avoid getting confused. She got two male nurses for help.

It’s been a trying time. Their large family comes and goes. So do the help. She is the only permanent fixture in the equation. And she has moulded herself to be an extension of him: Waking up at the odd hours with him and sleeping through the day whenever he does, never stepping out of his sight for a moment.

Why doesn’t she just put him in a home, her family continues to suggest in subtle ways. But who can understand her love? “He is a wonderful man. He doesn’t deserve this,” she says.

Shanta is now 78, Rao is 84. Communication between them has reduced to tone and touch. When Shanta speaks to him lovingly and strokes his hand, he looks at her as if he understands. He calms down, as if his world is in order. “I just want him to be comfortable,” she says.

The other day, he reached out to her and rather suddenly kissed her on the cheek. Moments like these make up for the ordeal that has become her daily life. “I’ve learnt to take each day as it comes. I am strong now. I don’t expect any miracles.”

Caregiver, heal thyself

Arthur Kleinman, an American psychiatrist and professor of medical anthropology at Harvard, published a paper in 2012 in the Lancet journal titledCaregiving as a moral experience. Kleinman, whose wife had Alzheimer’s, came to see how the person with the disease and the person who cares for them essentially exchange roles.

“She is happy much of the time. It is me, the caregiver, who, more often, is sad and despairing,” he notes while documenting her decline. Studies reinforce this. Kleinman found that not only patients but their caregivers have an illness experience.

Felista Jose agrees. “It is we, the caregivers, who need the treatment and counselling. We can’t expect our patients to change,” says Jose, who heads the Chennai chapter of the Dignity Foundation, which also has chapters in Mumbai, Bengaluru, Delhi, Kolkata and Pune. While the foundation runs a daycare for Alzheimer’s patients, it also hosts support group meetings for the caregivers.

“The point of the support group meetings is to allow the caregivers to vent,” says Jose. In the privacy of the four walls, in the comfort of a shared plight, they find the courage to share their most private moments. A woman caregiver recalled in one of the sessions how she had taken her husband to the beach and he’d started shouting when he saw a bearded man. “Hey, you Muslim fellow! What are you doing here,” he asked. The man, in turn, hurled insults at the couple even as everyone around watched the spectacle.

At the support meeting, Jose says, the wife was in tears as she recalled the incident. Why didn’t she tell the man that her husband was an Alzheimer’s patient, some of the other participants in the session asked her. She did, she replied, but her voice was drowned out in all the commotion caused.

“The members offer each other suggestions based on their experience. We don’t intervene as long as solutions come from within the group. And they almost always do,” Jose says.

She recalls another case of a daughter who was embarrassed after her father, who had Alzheimer’s, started stealing. Each day he would return from the daycare with stolen items. Once it was the board outside a washroom that said “Ladies/Gents”, and, on another occasion, he brought home the room freshners kept inside the toilet. The family members said they were tired of having to apologise for him every time he stole something.

“But during a difficult situation, one can’t hope to teach the patient a lesson in morals. They are beyond it. We need to accept such incidents with a laugh and move on,” says Jose.

Such sessions help caregivers see their problems from a different perspective. It gives them courage, Jose believes. “Once they learn to accept that patients aren’t acting on purpose, that there’s no way to reverse this condition, then they lower their expectations and live each day as it comes,” she says.

Guilt trips

At the quaint bungalow of Hope Ek Asha, a dementia care NGO in a leafy part of the Capital’s Greater Kailash II area, a song from the 2001 film Kabhi Khushi Kabhi Gham plays as an assisted carom match unfolds. The main hall resembles a kindergarten with dolls and toys strewn around. The brightly coloured drawings and tear-and-paste trees are marked with tick marks and stars, just like in playschool. The best ones are framed and hung on the walls.

Vivek Mittal wears a slightly edgy look. He is at the residential care facility to visit his parents, whom he had admitted a week ago. His father was a retired government scientist and had been diagnosed with dementia a decade ago. “I had never felt the load of the illness as long as my mother looked after him,” he says. But after his mother showed signs of Alzheimer’s three years ago, he could no longer cope.

For a while he rented a large flat in Noida where he could live with his wife, children and parents, along with trained house help to look after them. But the arrangement didn’t work. “My parents weren’t getting the care they needed. There were falls and injuries in our absence,” he says. Mittal and his wife couldn’t take time out from their jobs. “It became unbearable.”

His parents have adjusted well to the new arrangement, he believes. But the question he dreads from them is: “When are we going back home”. He tells them that their house is under renovation and when their room gets done, they’ll be back home.

During play hour, the senior Mittals enjoy putting magnetic squares together to build a large house, a model version of what they once owned in Haryana. “It had 24 rooms and a cow named Gowri,” his father, JP Mittal, says with pride to all the staff present.

He remembers the house he lived in decades ago, but not what he ate for breakfast. “One of the reasons Alzheimer’s is detected late is because patients, in the initial stages, remember their past memories well. However, not their recent memories,” explains Dr Sushma Chawla, founder of Hope Ek Asha. This is the simple reason why family members often deny memory loss in their loved ones, citing their ability to recall their past with alacrity, she adds.

For Delhi resident Simi Gulyani, the hardest part of being a caregiver is having to come to terms with the degeneration of her mother, whom everybody in the family once looked to for advice. Her mother, Pushpa, is now a full-time resident at Hope Ek Aasha; she was diagnosed with Alzheimer’s over seven years ago.

Some days Pushpa looks at her daughter and raises one eyebrow, which, Gulyani says, indicates that she’s pleased. “I wish I could peep inside her mind. I often think she’s upset with me,” says Gulyani. Dr Chawla adds that it is often the guilt in the caregivers that leads them to such interpretations.

When Gulyani and her siblings took the decision to admit their mother into a home, they took turns to inform members of their extended family. “Yes, I felt judged,” she says. It wasn’t easy to earn social approval.

Ahead of World Ahzheimer’s Day, Bengaluru’s Nightingales Medical Trust, now present in Hyderabad and Chennai, is working actively on trying to create what it calls a “dementia-friendly environment”. It has been signing on volunteers to be “dementia friends” and spreading awareness in schools.

“A dementia-friendly environment ensures that from banks and marketplaces to the police, all arms of society are sensitised. For instance, someone who takes something and doesn’t pay at a store or an elderly person wandering lost might be dementia patients who need your help,” says Dr Radha Murthy, co-founder of Nightingales Medical Trust, a non-profit working for the elderly in Bengaluru, Kolar and Hyderabad.

Shruti Shivaraman is team lead for all dementia care projects at Nightingale. She mentions a recent case from their centre in Kolar, Karnataka. An elderly man had wandered away from his house before he was finally rescued and brought back home. “It was only then that the family realised he needed medical care. The guilt of having nearly lost him crushed them,” she says, advocating for more awareness in non-urban settings. Social structures are stronger in smaller towns and rural India, says Murthy. In big cities, a wandering case very often leads to a fatal accident. “Family members can almost never recover from the guilt of having no closure,” says Murthy.

Care runs dry

But not all caregivers care. Abuse, the experts lament, is rampant. Jose recalls the case of an elderly woman who would be starved at home before being sent to the daycare. “When I asked the family to give her breakfast, they said, 'Adukku idhu porum’ — literally, ‘this is enough for it’, referring to the food the daycare provides between 11am and 5pm,” she says. The woman also showed up frequently with burn marks on her arms and wrists.

“Our hands are tied. If we took any action they would stop sending the patient here and torture her further, thinking she’d complained,” she says.

Back to play school: At an ARDSI centre in Kochi, Alzheimer’s patients are kept engaged with games and toys   -  THE HINDU / THULASI KAKKAT

 

Pattabiraman of ARDSI has seen cases where Alzheimer’s patients are left with their soiled clothes locked inside a room in the house. Some relatives believe that the patients have lost the ability to feel love, comfort or disgust.

“I tell them that the patients feel and understand everything you and I do. They merely cannot express. I tell them to not say anything the patient wouldn’t want to hear,” she says.

Doctors point out that while there’s no cure for Alzheimer’s, medication can keep its progression at bay. “A caregiver, however, can play a role in setting the pace of progression of dementia in a patient. There’s a fine balance needed between keeping a distance without being apathetic and staying involved and attuned to their needs without being a pushy disciplinarian,” says Dr Hema Tharoor, senior consultant psychiatrist, Apollo Spectra and SCARF Hospitals, Chennai.

Heroes: Soma Rao (right) left her life in the US and moved to Mumbai to care for her father until the end; he did the same for his parents.   -  SOMA RAO

 

Mumbai resident Soma Rao lost her father to Alzheimer’s two years ago. After her mother died, she decided to move back to India from the US to care for him. “Dad always said to me that the greatest thing he did in his life was to look after his parents. They lived with us for several years before they passed away. So it was my honour to take care of him. I left my home, my job, my kids, all in the US and it was the best decision I made or ever will,” she says.

Shanta Rao feeds Ranga his mashed dinner, and tries cajoling him to open his mouth. “Were you the one who stopped at Newton florists to buy me flowers all those years ago? After I drove you to the Math department, you remembered it was our anniversary and you took the bus home to surprise me? Was it you, my love,” she asks him in Telugu.

Her biggest fear is the future. What if he outlives her? There are no answers to that.

Some people care too much, said Winnie the Pooh, the philosopher of modern times. “I think it’s called love,” he said.

Published on September 20, 2019
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