Bridgman, Mi— The toll road called dementia is an enormous and complex highway that leads to a very bumpy ride.
When my wonderful wife Sharon was initially diagnosed with dementia in 2018, we entered the “Dementia Toll Road.” Since then, our journey has led us on a non-optional, ever-widening highway with potholes and obstacles to overcome.
In the first couple of years, the disease’s progression and evidence of Sharon’s declining abilities were minor, yet noticeable and cumulative. During this time there weren't many tollbooths.
One of the first tolls we paid was when the department store where Sharon worked (managing their dressing room) started dropping Sharon from their work schedule. Without any explanation, they stopped calling her to work. This early toll in our journey was devastating and reinforced the psychological and financial toll we had to pay on this roadway.
Starting in 2021, I could no longer leave Sharon alone safely. If I had gone to our mailbox at the apartment complex office even for five minutes, she would have forgotten where I went. She would go out looking for me in the parking lot. We had never paid a toll like this before.
I had become a full-time caregiver, with my job description now requiring 24/7 coverage. I became responsible for all meals, taking care of the house, and helping Sharon with her basic activities of daily living. This was the first time I had experienced paying a toll like this.
I could no longer go to church in person. I could no longer attend Pine Tree Academy Finance Committee meetings in person. I could no longer meet clients in person or attend meetings related to my consulting business. Fortunately, Zoom meetings were invented, allowing me to keep these interactions.
By 2022, the progression of the disease made me realize that I was approaching the point where I would no longer be able to drive the car on this toll road and continue to take care of Sharon by myself. At this point, Sharon could no longer recognize the toll road's mile markers, such as birthdays, days of the week, or what month we were in.
The opportunity arose for us to move to an independent living apartment at Woodland Terrance, a senior living complex in Bridgman, Michigan. Woodland Terrace was started by the couple Don and Mary Dockerty, our family friends. My mother was one of the first residents of Woodland Terrace in the late 90s.
Sadly, Don passed away in 2021. Mary was the head nurse. Their children later assumed the leadership posts at Woodland Terrace. Tim became the CEO, Todd, the CFO, and Tonya Margaritis, the executive director.
The Bridgman complex includes independent living Red Bud Court, assisted living Dogwood and Magnolia buildings, and the memory care program housed in the Lilac building.
While living in Red Bud Court, our meals and other services were provided, yet we were able to maintain the ability to come and go as we pleased, visit relatives, get fresh donuts from The Flour Shop, or make frequent trips to nearby Weko Beach.
Weko Beach became a wonderful rest area off the “Dementia Toll Road” where we could watch the setting sun, escape the worries of the world and temporarily forget about the treacherous dementia highway we were traveling on. For a time, the distance between tollbooths seemed far apart.
In the summer of 2023, Sharon started occasionally wandering outside of our building. Staff members or other residents would bring her back into our building. The staff at Red Bud are wonderful, some of whom are from Guam and Palau. They all took a liking to Sharon and helped provide a safe haven when she would go wandering in the building.
Later on, Sharon began to have episodes of belligerence, lashing out when she got angry. This typically occurred first thing in the morning and at the end of the day. These episodes would usually turn on a dime. Sharon had no recollection of her juxtaposed behavior.
This tollbooth was very difficult to go through.
During the first few months of 2024, the disease became more intense, and most nights resulted in little sleep. Incontinence became an increasing toll to pay.
Tollbooths started appearing with greater frequency and the tolls started to increase exponentially.
In early April, Sharon began having severe back pain. One evening after supper, she laid down on the couch and couldn't get up. I got Lela, our evening Red Bud Court staff member to help me. She called the nurse Kesha and a decision was made to call 911.
The emergency department staff at Corewell Health Lakeland Hospital in St. Joseph was competent and compassionate. It didn't take long to diagnose a kidney stone and bladder infection. Sharon was admitted to an inpatient unit and surgery was scheduled for the next day.
After a few days of recovering from the surgery and infection, her medical providers recommended a few days at a neurobehavioral facility to work out the most effective treatment for her dementia. In late April, she was admitted to the Lilac Memory Care unit on the Woodland Terrace campus.
Although the “Dementia Toll Road” now has heavier traffic and more tollbooths, I am no longer the driver as we have our own chauffeur with the wonderful staff of Lilac at Woodland Terrace. Cindy, Hope, Lani, Karen and others are all expert drivers. Their professionalism and caring for Sharon are a Godsend for both Sharon and me.
The toll of this journey has been excruciating. However, now, we are not alone in our travel down this increasingly difficult toll road called dementia.
Theodore Lewis is the former CEO of Guam Memorial Hospital and has a healthcare consulting business in Bridgman, MI. He is collecting stories about lessons learned in life and can be reached at theodorelewis@yahoo.com.
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