“Not sure if I’m coping well as a caregiver”: Carer of dementia patient — Part 1

Dementia patients exhibit escalating behavioural changes, and coping with them is one of the biggest challenges their caregivers face. (Stock image, used for representational purposes only | Image credit: Pexels.com)

“When my mother started becoming forgetful and absentminded, I initially put it down to her old age,” Devika* remembers. After all, Yamuna* was then over 70 years old. “But some of the incidents that happened as a result of her absentmindedness were quite alarming. Once, she switched on the gas, and forgot to turn it off. Luckily, the live-in help spotted it, and switched it off, saving them both from a potentially fatal accident.”

Devika is a busy professional who works late hours and usually has a hectic morning-to-evening routine. But there is one phone call she can never afford to let go unanswered, regardless of how important a meeting she’s in, or how packed her schedule is, or how late at night or early in the morning it is. And that’s from her mother Yamuna, who is now 80 years old and suffers from dementia.

It was after the near-fatal gas incident that Devika’s daughter Manisha*, a psychologist, realized that something more than just ageing was at work in her grandmother’s case. When she took Yamuna to a neuropsychologist, the doctor confirmed Manisha’s suspicions: her grandmother showed signs of dementia; Yamuna’s memory was affected and would continue to deteriorate.

Dementia is a geriatric disorder, which may also have a genetic component. And Yamuna’s brother had Alzheimer’s. So while it was not foreseen that Yamuna would have dementia, it didn’t come as a complete shock when her family learnt of her condition. And thanks to Manisha, Yamuna’s dementia was detected in the relatively early stage, which is often overlooked because the onset is gradual, as symptoms like absentmindedness and forgetfulness are common characteristics of ageing.

But dementia is a continually degenerative syndrome, in that unlike other terminal diseases, there is no cure. Medication might be able to slow the decline, but the patient’s condition does not stop deteriorating. And the gradual onset meant that the full implications of Devika’s mother’s condition did not sink in immediately for her despite the doctor’s prognosis.

Then one day, about four years ago, Yamuna got lost not far from her home, and couldn’t find her way back. She had to ask a passerby for directions to the nearest familiar location, and finally managed to make it back home safe and unharmed. But the incident rattled Devika and her family. Yamuna was then officially diagnosed as having dementia. “And that’s when I realized that I was facing a far more challenging situation as the caregiver of a dementia patient than I would have if my mother was just another elderly person,” Devika says.

Taking on the role of her mother’s primary caregiver was a logical choice for the 55-year-old. Her second sister Indira* stays an hour away in another part of Mumbai, while her youngest sister Rachna* lives in the U.S. Devika lives closest to Yamuna, and since her husband is no more, and her daughter is married and lives with her family, she is the most accessible person to her mother despite her busy schedule.

Despite her age, Yamuna has lived by herself in her own flat ever since Devika’s father passed away nearly 15 years ago. Given her age and her condition, she needs constant care, so Devika has arranged for live-in ayaahs to stay with her. “My mother is rarely alone for more than a couple of hours a day, which is a great relief, because I don’t have to worry that she will be unattended if something happens,” she explains.

Devika makes sure to visit her mother at least once every day, and sometimes even manages to see her two or three times. At face value, it sounds like a comfortable arrangement. With people to take care of her mother’s immediate needs, it does appear as if she doesn’t have to do much hands-on caregiving.

But caregiving is more than just providing for the patient’s physical health needs. Caregivers are also responsible for the mental and emotional wellbeing of the person in their care. The success of this connection between the patient and caregiver depends a great deal on their personalities, and the kind of bond they shared before the onset of the illness. And Devika’s relationship with her mother has always been a troubled one.

“My mother has always been difficult by nature. She was very efficient — she ran the house along with working a nine to five job to support my father’s income. But she has never been a very happy or affectionate person. I think she felt that ensuring practical necessities like food, clothing, and shelter was far more important than emotional comfort.” And while Devika by no means belittles the former, their mother hardly ever gave priority to the latter.

Yamuna prizes academic ability the most, which means that she thinks Indira and Rachna, both of whom leaned towards science and maths, are much cleverer than Devika, who is an artist. This doesn’t mean that she was more loving towards her two younger daughters when the girls were growing up. But Devika strongly believes that her mother appreciates them more than her.

Moreover, when they were young, Indira developed asthma and needed constant, hands on care. Yamuna pretty much singlehandedly took care of her, including dropping her off and picking her up from school, and seeing to her everyday schoolwork. Devika thinks this made their mother bond more with Indira than with her other two daughters. And now that Yamuna only sees Rachna about once every two years, there is an element of distance making the heart grow fonder between them.

So, while Yamuna is distant from all three of her daughters, Devika think she is the most disconnected with her mother.

Growing up, Devika could never approach Yamuna with anything that she was going through, because they never had a close mother-daughter relationship. Devika says she has made mistakes that, even if they were learning experiences, could have been avoided if she had some advice and guidance. If she was unhappy, she could never turn to Yamuna for comfort, because she knew it wouldn’t be coming. Her mother did not even comfort her when her marriage was in trouble, or when her husband died, which only widened the gulf between them.

“Sometimes, because of the way my mother behaves, and the things she says, I feel guilty that my mother had to raise me and take care of me,” Devika says. “I feel that even as a child, I was a burden to her. I feel guilty for the decisions I have taken, and for making mistakes, though it is human. Sometimes, I feel as if I am still a burden to my mother, even though I’m the one who’s taking care of her now.”

Read part 2 here.

 

*Names have been changed to preserve identities

 

**With inputs on dementia from:

 

***This article is part of Adveka Foundation’s Caregiver Stories series.


As told to the author in her capacity of Editor and Content Manager at Adveka Foundation. Originally published here.