From Walking Sticks to Pedicabs

By Colleen Gundlach

Kirk Sinclair can be seen on warm days taking his beloved Cindy on rides throughout the area, for fresh air and socialization.
Photo by Bruce Frisch

For their fifth date, Kirk and Cindy Sinclair hiked the entire 2,200 miles of the Appalachian Trail. Avid hikers, the pair met when he was a University of Connecticut alumnus and she was a student there. Having reached their 30th wedding anniversary together, their exercise routine is more subdued, with Cindy riding in their “date mobile” wheelchair pushed by Kirk—a way of life for an Alzheimer’s family.

Hiking had always been Cindy’s passion. As a couple, they hiked long-distance trails all over the country. Cindy was the first woman to thru-hike the 3,000-mile Continental Divide Trail in 1985. As a couple, they were the first people to thru-hike the 5,000-mile American Discovery Trail (ADT) from west to east (the guide is written east to west).

In her late 40s, Cindy began showing symptoms of Alzheimer’s, but five different doctors all proclaimed her to be too young to have the dreaded disease. Hoping that the symptoms were indicative of an anxiety disorder rather than Alzheimer’s, the Sinclairs embarked on their yearlong ADT journey in May of 2011, supported by Norfolk resident Ky Byrne along the way. They hiked 5,000 miles, from Pt. Reyes, Calif., to Cape Henlopen, Del., ostensibly to speak about the virtues of kindness and community across America. However, Kirk’s real hope for the trip was to “reboot Cindy’s life with what she loved best.” Her symptoms did improve during the yearlong journey, but the signs of deterioration returned once they arrived home. Finally, in October 2013 at the age of 53, Cindy was officially diagnosed with Alzheimer’s.

Kirk was thrust into the role of caregiver, a job title with which he was familiar, since the couple had cared for his mother and Cindy’s father, who had both had Alzheimer’s. After Cindy had to stop working as a visiting nurse, the couple pursued, in addition to the ADT trip, such adventures as a vacation in Hawaii to celebrate their 25th anniversary, two winters in Florida and a six-month long-distance hike of the Pacific Crest Trail. All this has been done as part of Kirk’s goal, “to maintain the highest quality of life and happiness for Cindy until she passes away.”

Kirk devotes himself completely to being Cindy’s caregiver, which requires that he not work outside the home. Their days are spent with Kirk reading and playing guitar for Cindy and their watching television together, socializing and listening to music. When they listen to music together, Cindy likes to dance, which is actually just being held by Kirk and swaying back and forth.

As Cindy’s mobility decreased, Kirk realized that, with her history of being a long-distance hiker, it was going to be important for her quality of life to get her outside as much as possible. In researching ways of transporting her, he came across information about pedicabs, and a Norfolk icon was born. Last summer, Kirk was often spotted pedaling Cindy around town in the yellow pedicab he purchased on eBay. In warm weather, he can be seen pedaling her as far away as Wangum Reservoir and even Winsted and Canaan. “The toughest ride was to the top of Dennis Hill, particularly where the dirt road of the race course meets with 272.”

The Alzheimer’s has progressed to the point where Cindy can no longer walk without support. This marathon hiker’s daily exercise now consists of being helped by Kirk down the stairs once a day. Her outlook is still cheerful and loving. She laughs and enjoys Kirk’s company. “I tease her a lot and can make her smile virtually any time I want just by smiling at her,” he says.

Socialization comes from visits from friends, family or companions. These people provide much-needed respite time for Kirk so that he can tend to other things. Friends Liz Allyn, Dot Satherlie, Mari Louise Torrant, Alison Smela and Erick Olsen are all regular visitors, as are neighbors Nels and Phyllis White, while assistance with some chores is provided by companions from agencies.

The Sinclairs have three children. Noah, their eldest, lives with them. Daughter Charissa lives in the Albany, N.Y., area and comes home each weekend. Their youngest, Serena, lived with them for a year while teaching in Torrington. During that time, she received income from a state program designed to keep loved ones at home. Spouses are not allowed to receive payment for being a primary caregiver under this program, but grown children are. Since Serena has moved to California, that income has ceased, resulting in a considerable financial strain.

Keeping Cindy physically well during this time is of utmost concern for Kirk. He says, “There are eight essential activities for wellness: proper diet, vigorous exercise, rest, lack of stress, joy, active learning, socializing and being awed, such as by beauty or nature.” As Cindy’s ability to exercise and learn have decreased, he has focused his days on being sure she has each of the other six activities in order to maintain a good quality of life for her for as long as possible.

Kirk maintains a blog about the couple’s recent journeys: their long-distance hikes and Cindy’s Alzheimer’s journey. He shares news about her days and about his thoughts on caring for her. It can be accessed at http://www.humanityhiker.com.