Metro Detroiter Kanu “K.C.” Mehta shares his experiences of caring for his wife, Sumi, as she lives with Alzheimer’s disease
By Kanu Mehta
In 2013, at the age of 59, my wife Sumi was diagnosed with Alzheimer’s disease.
In the natural aging process, we change physically, biologically, emotionally and mentally. All the changes that come from the natural aging process were thrust upon our family at an unnatural and rapid rate when Sumi was first diagnosed. I was not prepared. I went through phases of shock, denial, guilt and grief. Followed by a lot of research and reading on Alzheimer’s disease. This enabled me to enter the phases of soul-searching, self-analysis, reflection and acceptance. Acceptance brought changes in me.
For me, being an effective care-partner, has two aspects: creative problem solving and emotional acceptance. For the former, drawing from my career as a problem-solving engineer, I have invented, designed, and rigged up solutions for Sumi’s safety and well-being. This aspect of caregiving gives me small victories as I test solutions to make Sumi’s life more comfortable.
For emotional acceptance, it is recognizing that Sumi is not a problem to be solved, but a person to be loved and cared for deeply with compassion, patience and mindfulness. As Sumi is changing, it becomes incumbent up on me to change my perspective as well. I began to differentiate that when Sumi is extremely difficult, it is not her, but the disease. When she is smiling, it is her true self and not the disease.
Sumi is in the late stage of Alzheimer’s disease and needs full-time assistance with feeding, toileting, showering, and dressing. She cannot verbally communicate her needs and discomforts. Despite that, she eats and sleeps well. She is physically fit and walks about 4 miles daily.
To be an effective care-partner, I realized the importance of maintaining my well-being. I hired a part-time caregiver to assist Sumi freeing me to educate myself, reach out for help and to make time for myself.
To educate myself, I took “Powerful Tools for Caregivers” classes offered by the Area Agency on Aging 1-B. In these classes, I learned many strategies and tactics to become an effective caregiver. I also attended a seminar by Teepa Snow, one of the world’s leading educators on dementia, for a deeper understanding of Alzheimer’s.
For self-care, I attend “The Arts of the Caregiving” classes offered by the Birmingham Bloomfield Art Center. We learn many different forms of art as an outlet for expressing ourselves. During the class, I get so engrossed in the art projects that momentarily I forget about caregiving. I also attend CALM, caregiver’s self-care and wellness program, offered by THRIVE at the WSU.
As another form of self-care, I have started writing about my experiences with Sumi through an on-line platform titled My Journey with Sumi. I write candidly about our lives, my thoughts, and feelings to increase Alzheimer’s awareness. My writing relieves me from brooding, and I find it therapeutic.
Part of reaching out for help is receiving and giving support. I attend two support groups which provide an outlet to openly share my feelings and learn from others. I share my experience with others who are beginning their journey. Fellow caregivers tell me they find comfort and inspiration from my experiences/writings.
The hardest part of the caregiving is that it is a lonely journey in spite of getting tremendous support from family and friends. It can feel that all dreams and hopes are on pause. Sometimes, I feel as though I am on a cliff’s edge. But with steadfastness, I amaze myself that I have scaled a new height in caregiving. What I thought was a cliff is just another plateau – a new normal.
Changes in Sumi have precipitated changes in me and opened up new internal vistas. Sumi gives purpose, clarity and focus to my life. I strive to become a better person and husband by being more loving, caring, compassionate and patient by maintaining emotional equanimity and mindfulness. I am able to recognize the important things and let go of the trivial. I try to control the controllable and manage the uncontrollable. My anxiety, stress and the blood pressure have been reduced thereby improving my well-being. I find that I am compassionate, self-healed, little wiser and at peace with myself.
In November of 2019, Kanu Mehta’s story”My Sumi” won the Area Agency on Aging 1-B Oakland County story contest for caregivers about their caregiving experience.