“Not sure if I’m coping well as a caregiver”: Carer of dementia patient — Part 2

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)

Read part 1 here.

 

Devika* doesn’t have many memories of happiness and laughter with her mother. Ever since Yamuna* was diagnosed with dementia about four years ago, and Devika became her primary caregiver, their troubled relationship has increasingly put them in adversarial roles.

“My mother is somewhat of a negative person, and tends to remember unhappy incidents or bad memories more than happy ones. She criticizes people for every small thing that upsets her, and abuses the live-in help, who stay with her all day and take care of her. She has a conservative mindset, and tends to think badly of people simply because of their background or social class.”

This is where Yamuna’s dementia has the worst effect.

In the later stages, dementia patients exhibit escalating behavioural changes. This is because the normal neurological changes taking place in a person’s brain occur more drastically for a person suffering from dementia. As a result, certain dominant personality traits are magnified. With Yamuna, this means her negativity and aggression becomes worse.

In the past, she has often thrown things at Devika or at the live-in help, demanded that Devika quit her career to stay with her full time, and justified her behaviour because of her age and temperament. So, spending time with Yamuna takes a heavy emotional toll.

“I have to mentally prepare myself every time I visit my mother,” she says. “I want to have some happy memories with my mother, because we have so few of them, and because my mother is so old.” But because of her mother’s tendency to focus on the negative, these visits always leave Devika feeling low, emotionally distressed, and sometimes angry.

The worst part about dealing with Yamuna, Devika says, is how guilty she feels for having such thoughts about her. “She is my mother, and she needs me. And I love her, though I’m not sure we like each other very much. I don’t want to feel anger and resentment against my own mother. But there are times when I can’t help it.”

Devika rarely ever talks about her mother with others, even with her close friends. She doesn’t want them to think she is a bad, ungrateful, judgemental daughter. “People don’t realize what I go through as my mother’s caregiver,” she says. “They don’t realize that it’s not always about money, and the ability to take care of the patient’s needs physically and financially.”

Caregiving is a thankless job, she adds, because as someone’s parent or child or sibling, you are expected to care for a loved one. “I neither want or expect regular expressions of gratitude from my mother, but it would be nice if she and my sisters acknowledged that I do take care of her.”

Devika isn’t sure she’s coping very well with having to be her mother’s caregiver. But over the years, certain people and habits have stood her in good stead.

When she needs to talk about her mother and get her worries off her chest, she has her daughter, and one very close friend. They both understand what Devika goes through, and she can talk to them regardless of the time of the day.

“I still try to be a bit careful with how much and what I share with Manisha*. She has good memories with her grandmother that I don’t want to taint.” Devika says. But she and Manisha have been through a lot together, so her daughter is the one who understands her situation the most.

Devika regularly visits her small farmhouse a couple of hours away from Mumbai. It’s in the countryside, away from the commotion of the city, and spending time in the quiet, green surroundings is very soothing. She reads and plants trees, and her time there leaves her feeling happy and refreshed.

Another activity that keeps Devika mentally occupied and physically fit is dance. She learns kathak, and attends classes three times a week. The best part of this is that she gets to spend time with young people, who, she feels, are an extremely positive influence. “Young people are energetic,” Devika says. “They’re full of new and innovative ideas. They have such a fresh way of thinking.”

Devika’s hobbies are extremely important to her, and really help her retain her sanity. She believes she is like her mother in some ways; she too tends to dwell on negative or unhappy memories, even though she tries her best not to. She thinks this might be a reason why she doesn’t have too many close friends. “I’m growing old too,” she says, “and if I didn’t have my hobbies to occupy myself, I might end up like my mother, which is the last thing I want in the world.”

Being the caregiver for a dementia patient is overwhelming, and caring for someone like Devika’s mother makes her responsibility that much more difficult. “If, in the future, my daughter ever has to become my caregiver, I never want her to experience the feelings and emotions that I do with my own mother.”

 

*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.