For millions of Indian families, the issue strikes home as they watch their parents change.
In retrospect, it seems obvious. Sometimes walk barefoot outdoors in the deaf of winter or unloaded the dishwasher mid-cycle — but at the time, it was easy to chalk it up to her getting older or just ‘ziddi’ (stubborn).
Being a caretaker, and that too a long-distance one, has been a complicated journey. His once-decidedly neutral mother is now irritable and prone to anger. “My mother is gone. She looks and sounds like my mother, but she’s gone.”
Cognitive decline is an unfortunate reality of aging but for some, it can go beyond just forgetting where you put your specs or keys.
US President Joe Biden’s gaffes and visible confusion have catapulted this issue to global headlines. While Biden has responded to worries about his abilities by telling people to “Watch me!”, doctors say it’s common for patients to struggle to accept the diagnosis. People think such things don’t happen to them or their families. “The person who is suffering will often blame others, saying ‘my daughter is lying’ or ‘my house help got me lost.”
The loss of agency that comes with such a diagnosis can be challenging. Writer Maya Shanbag Lang’s mother was an expert in geriatric psychiatry, which meant she diagnosed herself. But this also allowed her to hide her condition from the doctors her family would take her to. “Finally taking her to see a specialist in elder care — though against her wishes — was such a relief. My mom could dupe general practitioners and internists, but not a fellow expert.”
Caregiving for a parent causes an upending of the familial power dynamic, which comes with its own discomfort. “Caregiving, like parenthood, involves the merciful fostering of illusions. We don’t say to our children, “You’re incapable of making sound decisions, so you must listen to me,” That would be cruel. Instead, we make up games and subtle fabrications. We invent stories. So, it goes with caregiving.”
For Lang, her mother believed she would only be living with her daughter for a couple of days when, in fact, it had been months. “I wanted so desperately to correct her, confide in her, tell her about her condition — but that would have been selfish of me. She needed to believe she was in control, or at least still had some agency. If I told her she’s already been living with me for six months, she’d explode with rage or burst into tears or slump in shock. If I cheerfully played along, I could persuade her to eat a meal or shower.”
The stress can often turn the caregiver into the patient. “We have even seen cases of transient psychosis in extreme cases where the caregiver starts hallucinating.”
People tend to assume that as a good child, spouse, or sibling, one is simply doing one’s duty. “And while of course, you care for them, this is very specific kind of care. It’s a lot of emotional, logistical, and financial support.” While one knows that their memory will lapse, having your mother not know who you are is still an emotionally disturbing experience.
While the decline is not cognitive but motor, the emotional ramifications are similar. “She’s very fiery, very independent. For her to accept that she was dependent on others for physical needs was very hard to take.” “I couldn’t even commit to lunch because something could happen at the last minute. I’m also a comedian and I’ve had to rush home from my travels because of emergencies.”
Caregivers are often left with a feeling that it’s a thankless job. “When you’re looking after a baby, it’s easier because it gets less dependent and that’s a positive outcome to look for. The path only leads to more sadness and death. When a person is ill, they tend to get selfish. You can’t rely on them for validation and affection. There may be no gratitude, but you have to do it for your own conscience.”
There are moments of levity. One time, he took her to see some friends, “There was this friend of hers who also had Alzheimer’s. They said hello to each other, made five minutes of small talk, and then, half an hour later, did the same thing. This happened 3-4 times and by the end of it, everyone around them was just laughing.”
But the pervasive feeling is left with is guilt being away. It’s our culture to look after our parents so I feel really guilty. Needed residential care was a really difficult thing to navigate. “Even with full-time help, there was no guarantee she was being looked after.”
Dementia changed the way she saw her mother. “My mother had always been a larger-than-life figure to me: intimidating, sharp, imperious. Caring for her was like seeing a superhero without their cape. People talk about dementia in terms of how it robs us of our loved ones — and of course it does. But because my mother forgot her usual stories, I learned who she really was. Finally, I glimpsed the human being behind the myth, the one who had just as many doubts and fears and questions as I did.”
