The role of caregiver is immensely challenging and personal. Depending on the situation, whether it is a spouse, sibling, son, daughter, neighbor, or friend, every caregiver’s journey is different. In honor of all caregivers, the NEK Council on Aging is honored to present the journey of Scott Wheeler and his role as caregiver to his wife Penny who lost her battle to cancer in July 2022.
This is a north country love story.
In November 2020, when Scott Wheeler’s wife Penny received a terminal diagnosis of cancer, their whole world changed. However, instead of cowering in the face of a death sentence, she and her husband, Scott, went on what Penny called the “Living the Dream Tour.” They traveled the country from Maine to Michigan to New Mexico, visiting their children and grandchildren, and simply going about celebrating life.
Although many of their family and close friends knew of her diagnosis, many other people did not. That is the way she wanted it, because she wanted to live the final chapter of her life under her own terms and not under the specter of pity and sorrow. Despite life being far too short for her, she insisted she had lived a more wonderful life than she had ever expected.
Born on May 28, 1966, to John and Ruth (Barrup) Curtis, Penny grew up in Brownington, the youngest of four children. Being the youngest and the only girl growing up with three older rough and tumble outdoorsmen brothers, prepared her well for the challenges of life. Many young girls like frilly dresses, but Penny would hear nothing of it. If her brothers weren’t going to wear dresses, she wasn’t going to either. Her parents were poor, but they weren’t too poor to help those in need, a trait Penny inherited from them, along with their strong work ethic.
Penny was only 19 when she married Scott, who was 20. Scott said there probably were few other couples closer than them. They did everything together, including being very active in their children’s lives as children and adults. She was happiest when she was cooking for a house full of family and friends.
Penny also worked in the healthcare world for almost 30 years, many of them as a pharmaceutical clinical analyst. For the last 20 years, she and Scott owned and published Vermont’s Northland Journal, a monthly magazine dedicated to sharing and preserving the history of the Northeast Kingdom.
“Because Penny and I married so young, we practically grew into adults together,” Scott said. “When we learned she was dying, I didn’t even think twice about being her caregiver. I couldn’t have asked for a better patient. She seldom complained, and she was so appreciative for everything I or anybody else did for her.”
There was also no question in Penny’s mind she wanted to die at home where Penny and Scott had raised their three children.
A woman of a deep, quiet faith, in times of struggle, family members and friends often turned to her for a nonjudgmental ear and a shoulder to cry on. Throughout her time on earth, she exemplified how to live with dignity, and during the final chapter of her life, she taught those around her how to die with grace, dignity, gratitude, and humor.
She was so comfortable with dying, Scott said some people questioned if she was in denial of her looming fate.
“She absolutely was never in denial,” he said. “She relied on her deep faith, and the knowledge that death is as natural as birth. And she wanted to do as much living before she died. She explained it this way, ‘Once I realized I wasn’t afraid of dying, it allowed me to truly live.”
Scott made it clear, caring for Penny wasn’t a one-person effort. Her family, including their children, rallied around them, as did other family members and friends.
In the months leading up to her death, Scott said Penny talked to him about just about everything under the sun, including her hopes and dreams for him. She also talked to her kids and told them of her love for them and how proud she was of them.
“She also told them to take good care of Dad,” Scott said. “I’d never lived alone, and she knew once she died, I’d be a complete trainwreck. She knew I’d need all the support I could get. My kids have been super to me.”
In the final days of her journey, in addition to family and friends, Scott called in the Hospice team at Orleans-Essex VNA and Hospice in Newport. He also praised the medical expertise Penny received at Northern Vermont Regional Hospital in St. Johnsbury, and the University of Vermont Medical Center in Newport, as well as Dr. Leslie Lockridge in Newport.
Penny died on July 29 exactly where she wanted to die – in the home where she and Scott raised their children. “It was my greatest honor to have taken care of her until the end,” Scott said. “She was the happiest, funniest, dying person I’ve ever known. She also shared so much wisdom with us.”
“The caring didn’t end there,” Scott said. “Our community was so wonderful to me and my family. When we’d go out to eat, we’d go to pay the bill, and we’d find out somebody had paid it for us. That continued for me for upwards of 10 weeks after Penny died.”
Now five months following his beloved Penny’s passing, Scott said of course he grieves her loss, but he has never forgotten what Penny told him – “Scott, you worry about me, but don’t you think I worry about you. All I have to do is die, but you have to live, and that is not going to be easy for you. I expect you to grieve, but I don’t want you to get lost in your grief. I want you to live, and I want you to be there for the kids and grands kids.”
“Penny died with so much grace, dignity, gratitude, and humor, I owe it to her to live my life that way,” Scott said. “And that is how I am living my life.”
The NEK Council on Aging provides support for family caregivers with one-on-one personal support, monthly support groups, respite grants, dementia care support, and Trualta®, the 24/7 online e-learning platform for caregivers. Call Karen Desrochers, Director of Client and Caregiver Team Support at (802) 751-0427. Information is also available at
www.nekcouncil.org
