Thursday, October 17, 2019—4:15 pm 52˚F (11˚C)—A nice and sunny autumn day
A local entity, the Area Agency on Aging 1-B, helps individuals and their family caregivers maintain their health and independence by providing home and community based long- term care services. They have organized a caregiver’s story contest and have invited caregivers to submit their stories.
I submitted my story today. It was limited to 700 words and mine came in at 697. There will be one winner from each of the six local counties. The winners will be announced on November 1st and they will be recognized and awarded $500 during the caregiver appreciation award luncheon at the Troy Marriott on Saturday, November 16th.
On the next page is my story, My Sumi, which recaps many things I have written here before.
My Sumi 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 upon 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 four 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 “Art of 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 I momentarily forget about caregiving. I also attend CALM, a caregiver’s self-care and wellness program, offered by THRIVE at Wayne State University in Detroit.
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 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 blood pressure have been reduced thereby improving my well- being. I find that I am compassionate, self- healing, a little wiser, and at peace with myself.
UPDATE: I am excited to say my story is one of the six winning contest entries! I am not a writer and had never written until becoming a care partner to Sumi. This is very humbling and gratifying. My writing is now getting a voice so others can benefit from it.