This is the second of a two-part series from The Indian Scene. Last week, we told the story of one family and a life-changing diagnosis. This week, we’ll follow them as they navigate their new normal, and explore the financial and logistical realities of Alzheimer’s and caregiving.
A difficult thing about Alzheimer’s disease is that it follows no particular template. Symptoms and their timing and severity will vary across patients; how and when certain motor and language problems start to appear, for example, are specific to the individual. For that reason, K.C.’s caring for Sumi requires a Japanese management strategy he cites called kaizen, the “continuous improvement” of processes and functions, every routine tweaked and modified to best serve Sumi’s needs. At the Mehta house in Rochester Hills, where K.C. and Sumi are hosting The Indian Scene on an October weekday morning, that’s on full display.
The language of Alzheimer’s disease, K.C. says, is “said but unsaid.” After decades of marriage to Sumi, he can pick up on body language and subtle facial expressions; sometimes, that’s all he has to work with. As is the case with many Alzheimer’s patients, Sumi’s ability to remember her second language — English — has been mostly lost. Instead, she communicates in fragments of Gujarati, her native language — not quite enough to construct a full sentence, but enough to communicate basic needs. On a poster in the Mehtas’ kitchen, K.C. has neatly written handy phrases and key words she often says or is receptive to. “Sumi, chalo” (Sumi, let’s go) one might say to her. “Lo,” (OK) she might reply, resigned. Sumi’s caregiver Peggy, a quick learner, has learned an impressive amount of Gujarati in her time with the Mehtas. That morning, after bathing Sumi and dressing her in a simple red sweater with brass buttons, Peggy tells Sumi in Gujarati that she looks beautiful. In a large walk-in closet, K.C. helps to brush Sumi’s hair, soothing and reassuring her when she winces in pain or attempts to get up from her chair.
Sumi took some time to warm up to Peggy, initially distrusting her, but now Sumi greets her with big smiles. It is tremendously helpful to have a professional caregiver around the home, K.C. says. Some families consider placing family members with Alzheimer’s in outside care facilities, but at such a facility, there can be less willingness to adapt to a patient’s needs. Comforts like flexible routines or caregivers willing to speak in a patient’s native language are more difficult to come by, which is why K.C. preferred that Sumi be cared for at home. Admittedly, that isn’t always a choice families can make. In-home caregiving can be expensive (as a caregiver K.C. knows put it, How can I pay a caregiver $20 an hour when I make $12 an hour?). K.C. is fully retired and is able to spend his days at home, too. For partners who are still working or cannot afford to take time off, there may be other considerations at play. Still, in America, as the population ages, home health care is the fastest growing job category. It is also one of the most demanding, especially relative to what it pays. Around the household, Peggy does a little bit of everything, preparing Sumi’s breakfasts and meals, cleaning her and making sure she’s accounted for at all times. K.C. remembers when Peggy first came to their home and immediately pointed out some safety risks around the house. A set of knives shouldn’t be kept at an accessible location in the kitchen, Peggy said, because Sumi could hurt herself.
Creating a safe home — adult-proofing, one might call it — is a crucial step for caregivers of Alzheimer’s patients. As K.C. details in “My Journey with Sumi,” the caregiving diary he shares with friends and family members, the experience has a strange way of pointing out just how many parts and pieces are in a home, waiting to make trouble. When Sumi was given showers, she would often try toggling the knob that controlled water temperature. K.C., ever the problem-solver, experimented with PVC coupling, and glued it on the knob’s back plate. When Sumi struggled to keep her bowls and plates on the table during meals, K.C. found a brand of sticky placemats. And when Sumi saw her reflection in a glass sliding door (mirrors can cause anxiety for dementia patients who may not recognize their current selves), retractable blinds solved the problem. At the Mehta home, K.C. demonstrates a motion sensor alarm that sounds when Sumi tries to leave the bedroom at night.
As late as 2017, Sumi and K.C. could go out to eat at restaurants. Now, though, Sumi is fed at home by Peggy or K.C. Nutritious meals can be a challenge, and most experts recommend preparing food in bite-size pieces and presenting it so that it contrasts from the plate, as spatial abilities and depth perception are diminished for dementia patients. For breakfast and dinner, Sumi eats plates of chopped vegetables, cucumbers, carrots and bell peppers, served with chestnuts and Babybel cheese. Every day, Sumi drinks a smoothie of spinach and methi leaves, carrots, cucumbers, celery, ginger, bananas, raspberries, blueberries, blackberries, orange juice, dates and honey. K.C. makes it in large batches, and keeps them in frozen tumblers.
In a March installment of “My Journey with Sumi,” K.C. reflects on the Buddhist ideal of “equanimity,” perfectly calibrated, unshakeable composure in the face of life’s difficulties. One can voluntarily achieve that state, he writes. Or, like he was, one can be thrust into it. K.C. has come to understand that caregiving is all about that balance, between the practical and the emotional, between longing for the past and living in today’s reality. In typically fastidious fashion, he developed an “emotional curve,” describing his journey in phases. It begins before the diagnosis, when symptoms begin to show, with denial and anger; crescendoes into shock, guilt and grief, before tempering into moral acceptance, a shift toward accepting one’s responsibilities as a caregiver and devoting oneself wholly to their partner. Still, that takes several years.
The best analogy for his caregiving now, K.C. says, is helping someone to scale a mountain. As a person climbs, their survival is in the hands of sherpas, who briefly become the most significant people in their lives, maybe more important than their loved ones. A sherpas prepares the route to follow, fixes ropes in place, carries the necessary tools and supplies up the mountain. On average, they carry loads equal to 90 percent of their own weight. The sherpas do the path clearing and heavy lifting, safeguarding another life along the way.
In K.C.’s journey with Sumi, there is never a dull moment. It is a fascinating, difficult mixture of creative problem-solving, emotional management and continuous improvement. In his seventh year of caregiving, K.C. seems to take the challenges in stride. As he wrote on a drawing he made in an art class for caregivers, “the brook would lose its song if you removed the rocks.”