This is the first of a two-part series from The Indian Scene. In this installment, we’ll tell the story of one family and a life-changing diagnosis. Next week, we’ll follow them as they navigate their new normal, and explore the financial and logistical realities of Alzheimer’s and caregiving.
Sumi Mehta’s husband was worrying about her. It was 2013, and he had begun to notice small, suspicious lapses—a missed exit here and there, taking a few moments longer than usual to change lanes or make turns. Sumi drove to the party anyway, or at least, she tried. Forty-five minutes after she left to attend a family friend’s birthday celebration, K.C. answered a call from his wife, who had gotten lost about a mile away from her destination. He tried explaining the route, and then didn’t hear from Sumi for hours. Friends went looking for her; K.C. called the police, too. When a distraught Sumi found her way back to the couple’s Rochester Hills home, hours later, K.C. could not bring himself to ask where she’d been.
Shortly after the driving incident, K.C. and Sumi went to see a neurologist. Sumi, then 59, told the doctor she had been forgetting names and details. Months before, she had left the stove on. Simple arithmetic had become difficult, too. To measure memory function, their doctor administered a series of standard tests. Could she remember three words and recall them a few minutes later? Could she answer basic addition and subtraction problems? Did she know the names of past presidents or the prime minister of India? What was a television show she watched, and could she explain what it was about? She had difficulty with all of those.
An Alzheimer’s diagnosis, K.C. says on one October morning, provides practically no room for hope. With other diseases, a patient’s hair may fall out, they may grow frail, but some comfort can be taken in the fact that they remain the same person, just a frailer version. Even at their lowest, most difficult moments, their traits and curiosities and inner lives will not wither away; in some cases, there is even the chance they recover completely. But what can you tell a patient with Alzheimer’s disease, a form of dementia estimated to affect 5 million people in the U.S.? It is marked by irreversible cognitive decline, with symptoms that worsen over time. There is no cure, no way to stop or slow its progression. Why her? K.C. wondered when he learned the news.
At this point, K.C. says, over six years since Sumi’s diagnosis, he feels like something of a veteran caregiver. In support group meetings he attends, he finds himself lately being a source of advice to others, rather than needing it himself. Had he always been so calm, I ask him, perplexed by his composure in the face of a difficult situation. No, K.C. says. It was a “long struggle” to achieve the sense of peace he feels now. There was anger at first; it can be frustrating to take care of Sumi sometimes. But he has resolved to live in the present, knowing that the pain and grief dredged up by memories of the past can be channeled into some kind of motivating force. He is intensely contemplative these days, and shares his reflections in an ongoing series of messages to friends and family members he calls “My Journey with Sumi.” Through the writing, he hopes not only to chronicle his own growth, but also to inspire self-reflection and change in others.
In one installment at the end of 2017, he describes his upbringing in a competitive Indian society, one that tends to foster “alpha male” attitudes. After Sumi was first diagnosed, K.C. wondered, with some guilt, whether he could have been a better husband to Sumi, a devoted and compassionate wife whose primary concern after being diagnosed was for K.C. He has decided that the only thing he can do now is to act in his wife’s service. A book he read posited that when a person has Alzheimer’s disease, they do not lose their capacity to give and receive love. He suspects this is true of his wife. When Sumi kissed K.C. on the lips but knew to kiss a family friend on the cheek recently, K.C. took that as a special sign.
Describing K.C. as “left-brained” might be something of an understatement. He is an engineer by training and a former corporate consultant; when he writes and speaks, it’s as if he’s delivering a tidy, methodical lecture. His chronicles of life as a caregiver to Sumi sometimes read as a student’s notebook — he reflects on books he’s read and summarizes them in detailed bullet points. He likes to illustrate concepts and processes through lists and flowcharts, describing anything from the stages of Alzheimer’s disease to the five “love languages.” He calls himself a career problem-solver; even in retirement, that hasn’t changed. What has changed, though, is that he’s found himself drawn to his creative side. With other caregivers he talks to regularly in support groups, that shift is not uncommon. The arts, researchers say, can provide caregivers with a temporary respite or means of stress relief. K.C. started with short poems, which have graduated into the long, meditative essays he pens for “My Journey with Sumi.” Last March, he began taking art classes for caregivers at the Birmingham-Bloomfield Art Center. “I get so engrossed [in] the art class doing the art projects that momentarily, I forget the trials and tribulations of care giving,” he wrote recently in a message to friends and family members. Among other projects, K.C. has drawn an adorable ostrich in oil pastels and bound a painted book using the Japanese stab-stitch. Sumi has put the pen in his hand and given him an unlimited supply of ink, he wrote in an installment of “My Journey with Sumi” last year. “I am just the instrument.”
At times, existing in a state of composure and acceptance can feel astoundingly lonely. Loneliness is an increasingly common feeling among adults, but it is magnified for family caregivers, who have devoted their lives to one person. Sumi does not recognize the couple’s adult children or other family friends. She has provided her husband with purpose and focus, he says, but it is sometimes difficult for him to have so few people to talk with. K.C. says he might be the only one so far who has been able to make peace with the existence of two Sumis, and likens that process to crossing a rickety suspension bridge between the banks of a river. “The common thread in my two worlds is Sumi’s smile,” he writes. “Every day, I try very hard not to let that go.”
Next week, we’ll follow K.C. and Sumi as they live in their new normal.