(This column first appeared in the November print edition of the Hendersonian.)
How does one start something from nothing? When I began this ten-part series last summer, I was hit over the head with that question and the next one, “How does one truly help someone with dementia?” I realized that my mother Kimiko needed assistance with maneuvering the disease—not just from various caregivers attuned to those with dementia (those caregivers unfortunately came and went due to numerous reasons) but also from her family, my brother and i who take turns as her caregivers now. So many real questions and calamitous moments took place along the way with few firm solutions. When that happens, one starts from the beginning with no answers and one step at a time as the adage goes, and ideas begin to materialize. Dementia/Alzheimer’s often feels like something new that no one has ever fully understood cognitively, though many of us with family who have been affected have heard the names of the malevolent malady. The disease often feels like ancient mythology, akin to those ancient ideas that have stayed constant, without change, though it is one of the most advancing illnesses of the mind today. Not much has happened in terms of a real cure or solution to stop its ever-growing numbers of those affected. In our household, we choose not to take pharmaceutical medications for dementia (or any other illness) instead opting for natural remedies and experiences. This decision is largely due to many of the medications causing additional harm and long-term health complications for the individual taking them. Instead, I have researched and looked to other answers, those that I can control and apply myself, and with my brother as a family, we are willing to try something new and novel.
In Henderson, it is estimated that 10.5% of the 65-plus population (baby boomers born between 1946-1964 are at the highest risk) have Alzheimer’s disease, according to new estimates released in 2023 by the Alzheimer’s Association. It ranks #23 of 120 counties in Kentucky included in the data. Locally, it means about 900 people have Alzheimer’s in Henderson County today, according to Stacker.com. This number will triple by the year 2050, possibly bringing the number to over 2,000 affected by Alzheimer’s. Knowing this, I felt I could only try my hand as a one-woman adventurer, beginning a self-led journey of understanding and awareness of the disease. “What can one woman/one human being do to change the world?” I asked myself. I had been without consistent work in my field as a costume designer after the Hollywood strikes, leading me to move myself, my belongings and pets to Henderson part-time, moving in with my mother as a caregiver mostly to monitor the changes that have taken place and to give her companionship during a time when she needs it most.
Here’s what I’ve learned over the year: Though you will continue to see a decline in your loved one, you learn to celebrate the life they have lived and the life they have left. They may act differently than the person you knew prior, but that person is still the same on the inside.
Do not give up. Dementia/Alzheimer’s can make you feel you are losing some days. Still, those days are not a constant, and it’s OK to have an off day and start again the next day. The important thing is to not give up and give in to something out of your control. The trick is to back up and steer the situation in another direction. Redirect the person to a place of harmony.
Do not let ego and the need to control the person, situation, and outcome lead you to wrong decisions. Treat every moment with love and respect, and what transpires is usually kismet—what is meant to be.
There is still so much to learn from your loved one, in this case my mother. After not living with her since my late teens/early twenties, I am discovering that the new characteristics I discover in her personality are often just as enlightening as the past mother that I recognize. There is an over forty-year gap between leaving Henderson and her home and our time together now. I am also not the same person that she once knew. Embrace change and everyone wins. This fact has led to numerous art projects with my mother as muse. Utilize what you have and what you can add to the person’s day in an optimistic approach.
Try your hand at what you can accomplish on your own and with like-minded individuals. In my case, I decided to open a memory café, called The Nostalgia Café, here in Henderson at St. Paul’s Episcopal Church. All of this from being inspired by a radio story on NPR that I heard while driving from my mother’s home back to my own. Oddly, the memory café mentioned happened to be within driving distance to my home in Pennsylvania. What transpired is a bimonthly art/music/healing experience for those with dementia/Alzheimer’s and their caregivers. For the first memory café on Oct 11, I was overcome with emotion when artists and musicians participated. Janet Barkley (Henderson) came to lead us with her elder care experience and musical talent; Emily Gartner, of Art Thread Studios (Evansville) showed us how to make witch hats out of recycled quilts and tote bags with a Halloween motif; and Ken Oliver (Newburgh) brought his art skills to us with art tags/bookmarks with a nostalgic bent. Margaret Kimberling (Evansville/St Paul’s member) joined in with the music portion; Lorna Littrell (Henderson) captured the spirit of the first café with her photography; Steve and Wendy Casey (Spottsville) engaged and invited all of us with divine music and movement for the senses. Half of these beautiful folks are new to me, but part of a collective whole of artists/musicians/good human beings who want to right a lopsided definition of dementia/Alzheimer’s. And all are catalysts for change.
How to start from nothing? Start with yourself. Others will follow, and one step at a time, we begin to change the world from what was to what can be.
The Nostalgia Café meets from 10-11:30 a.m. every 2nd and 4th Saturday of the month at St. Paul’s Church, 5 South Green St. We are an inclusive, non-denominational group who welcome all those with dementia/Alzheimer’s and their caregivers.
