- It's What Indian Girls Do:Narratives in Caregiving for a Parent With Dementia
Every caregiver's story is unique because every caregiving relationship is unique; however, the story of my relationship with my mother, age 88, who lives with me, is influenced by our cultural roots in India, and by the cultural traditions and expectations that guide our behavior.
After months of memory lapses and increasingly bizarre behaviors, my mother was diagnosed in May 2019 with moderate dementia of the Alzheimer's type. One month later, subsequent to intense bouts of sadness and comments about not caring if she died, she was also diagnosed with depression. During the next six months, my mother's symptoms devolved at an alarming rate into confusion, hallucinations, and delusions. She reverted to her days as a high-ranking government official's wife in India, with an army of servants at her disposal—she began to order people around, constantly asked who was coming to visit, and reminded me to "tidy the house" and "cook enough food for all our guests."
Early on a December morning, my mother came upstairs to the kitchen and had a bad fall that she still doesn't remember. When I found her sitting on the kitchen floor, unable to get up, she told me that she'd "just had a nice breakfast and was going downstairs to get something." It turned out to be a severe pelvic break that left her incapable of standing or walking, and that the doctors said would take at least 12 weeks to heal. She spent the next month in the hospital and a rehab facility, where she received excellent care; however, mentally and emotionally, her condition declined dramatically.
In the ER, she was sure she'd checked into a hotel and complained about not being able to use the bathroom. "What kind of hotel doesn't have a bathroom? Even the worst hotels have bathrooms!" Hospital staff insisted that she use her walker at all times and that a nurse accompany her to the bathroom, something that further enraged her. She grumbled, "Do you know how many times I've gone to the bathroom by myself in the past 88 years?" When she was discharged from the hospital, she tried to tip "the maids" because "that's what you do, when you've spent a nice night in a hotel. These people don't earn much."
In rehab, she quickly developed the reputation of being a sweet but determined old lady who wanted her own way. She threw her clean clothes into the laundry hamper several times a day, rearranged all her possessions so we couldn't find them, and secreted food in her bureau for future consumption. She'd tell me how the nurses were always talking about her, how they were plotting to take her house, and how they kept hiding her things and stealing her money.
The kids and I spent Christmas and New Year's in rehab with my mother, brought in treats and special home-made meals, opened gifts, attended chapel with her, took her for "walks" around the facility, and did our best to feign good cheer. My mom was released to our home right after the new year and subsequently had a month of visits from home health care and immediate family. In the meantime, we took turns sleeping on the couch near my mother and pretended that our aching backs and muscular pains didn't bother us. We cleared out her living area and donated some of her things to make room. We also purchased medical supplies and equipment for her, including a video baby monitor that turned out to be my lifeline once I moved back to my own bedroom. "See your baby's every move!" it promised confidently.
As of this writing, everyone has left, with promises to return over the next few months to see my mother and to support my caregiving efforts. So [End Page 103] it's just my mom, me, and Ollie, our little Maltese mix, who has become extraordinarily protective of his grandmother. My caregiving is supplemented by regular visits from a...