This web site adds to the pamphlet distributed at the Duke Caregiver Community Event at the Sheraton Imperial Hotel Raleigh-Durham Airport at Research Triangle Park.
Scroll down to learn more about the four caregivers in the caregiver exhibit at the event. Each begins as in the pamphlet and goes on from there.
When my book is published, these caregivers will join others for a total of 50 caregivers and their loved ones on their journey and perhaps for you to join them by recognizing in yourself their Empathy, Resilience and Hope.
Grace noticed her mother, Jacinta, was behaving oddly after living alone. When Jacinta offered to pick up her son at the airport, she did not show up and did answer her cell phone. Grace found Jacinta distressed, sitting in her car in her driveway. She had never left.
Another caregiving journey for Grace and her husband, Dave had begun.
“This was exponentially harder than when my father was ill. I became more accepting when I said it's not about me," said Grace.
They converted their garage into a bedroom and added a front porch so Jacinta could sit safely and wave to neighbors who waved back. When Jacinta returned home after treatment for a hip fracture, Grace saw that advanced dementia had begun.
Grace placed her career on hold, “My mind was always on my mother.”
Concern for Jacinta interrupted their thoughts and actions. “I just wanted to finish one chore,” Grace had said.
Dave summed it up, “Until you go through something like this, you can’t know what it’s like. It makes me want to care more for others. Life is short and we are not promised about tomorrow. Makes the little things that happen not as big as they seem.”
They never had to ask. They learned they did not need to entertain volunteers. Neighbors took their children to extracurricular activities. Others brought dinners.
After Dave became ill and encountered a hospital stay, he stated, “We need to also care for ourselves. Without our health, we have nothing.”
In their youth sisters Grace, Jennifer and Jacinta would dance to pop tunes. Jacinta now sat, but she swayed in rhythm when her daughters danced before her. Jacinta’s eyes would brighten to the scene a highlight of her day.
Jacinta rewarded her family’s effort by communicating comfort, joy, and hope when she smiled and gave them her humble “OK” sign.
John was a resourceful military aviator. Robin, independent and insightful, had a playful sense of humor. When they met, John was wearing a Harley-Davidson sweatshirt. He gave it to her. She loved the shirt and him in it. On his return from deployment, they became a blended family with five children. They created the home of their dreams complete with a white picket fence.
When portents of illness gathered, Robin could not recall messages on the news ticker of the TV screen. Her limited side vision prevented her from pumping gas, and she began to park her car at odd angles in the garage.
When Robin drove the wrong way on a highway, she gave up driving.
Robin felt terrible when an older neighbor offered to drive her a ride to the gym.
John had said. “He offered because he wanted to help, and therefore, you’re helping him.”
The neighbor explained that he used to be depressed. “I loved my days, driving her to the gym.”
“What a cool blessing that was,” John told her. “You made a difference in someone’s life.”
John and Robin endorsed the power prayer: “Our faith keeps us strong…and laughter keeps us young,” and the gym keeps them energetic. Enfolding his words with a smile, he looked directly at his wife with humility and pride:
“You make a better man out of me. That’s a huge accomplishment!” Robin, quick on the uptake broadly smiled in triumph, “I need to write that down!” They laughed.
Alzheimer’s disease was no laughing matter, but laughter liberated and unified them. Along with their daily prayers, they remained focused on each day with a light touch andwelcoming heart.
Rosie had her eyes set on Glenn since junior high. “I took wood shop,” she said, laughing, “just to be near him.” But Glenn did not notice her. “We were in church choirs. Nothing there." But when they attended the same college, she received a Christmas card. “I found out later he had sent cards to four different girls (laughing). The first one that sent it back, that's who he decided to date.”
They married and lived in harmony over the next forty years raising two children and enjoying three grand-children.
Glenn was soft-spoken, devoted to his family, jocular, and diligent at work. He loved to bowl and taught the game to Rosie.
Parkinson’s disease arrived with hand tremors and slowed walking. Later, Glenn’s voice weakened, and memories faded. Rosie began to feed Glenn his meals. It hurt her heart to watch him lose independence and require help with morning ablutions. She gave Glenn a helping hand to get out of bed, dressed, walk around the house and arrive on time for doctor appointments.
Rosie proudly displayed her ability to lift him to walk. A fall would be calamitous. She exclaimed: “He’s 6’2”, and I’m 5’1.” When seated again, he looked hesitant and shy. When he fully focused on Rosie, they reveled in the warmth and wonder of their relationship. Rosie ever gregarious was blessed with a contagious laugh. Her upbeat demeanor and cordiality belied a serious, creative and boundless dedication to meet the needs of her husband, the love of her life.
Rosie never saw herself as a caregiver. “I just did what I needed to do.” Their daughters encouraged Rosie to get help: "I was like, I’m OK. I’m OK.” Supported by her family she did get help. Rosie even went to a movie by herself: “It was awesome!”
Timothy and Wesley saw their father as strong and dependable with an offbeat sense of humor. Sims, whom they called, Pop, spent thirty years as a New York City firefighter. Early in his career, a floor collapsed under him, and it was his helmet that saved his life.
Pop was living with Alzheimer’s Disease and suffering from myasthenia gravis, a chronic illnessthat causes muscle weakness. Timothy recognized his father needed help, and wanted to keep him at home.
To do this, he retired early from a robust career in law enforcement.
Timothy conveyed a tranquil presence with a firm handshake. He began caregiving early, assisting his grandparents when he was in his twenties. “I was the youngest and single, and wanted to help.” Wesley, Timothy's brother, was an upbeat entrepreneur. When he entered a room, the conversation grew lively.
The brothers felt it a great privileged to be their father’s caregivers and included him in everything. Barbara, Wesley's wife, prepared appetizing meals for Pop.
“We all agreed,” Wesley said. “Pop’s care came first.”
They learned from each other and from those who came to help. “We pay attention and take good notes,” said Wesley.
Timothy and Wesley coordinated their schedules ensuring Pop had a constant companion. Timothy stayed with Pop on weekdays and weeknights; Wesley and his wife, Barbara,on weekends.
Wesley shared how the caregiving experience may have many delicate shadings. “Sometimes I can be with him all day, and he says nothing. But when Barbara arrives, she gets a hello and a high five.”
About Me
I enjoy fine art and environmental portraiture. In my career as a social worker, I learned how to listen empathically. In my career as an internal medicine physician learned how to ask and questions into the finest detail. Good photographs and stories benefit from both.
Early on in life, I suffered from asthma. Since I could not run, my parents gave me a film camera, and said...make pictures of your brothers. By watching them, I learned how to photograph others at play and at rest.
When my portraits look posed it is only when participants choose to pose themselves.
I live and photograph in Tidewater Virginia and travel when I can.