On the longest day of the year, people across the globe took time to honor patients and caregivers of a time-robbing disease: Alzheimer's.
“It is the longest day and this is a long disease. It’s not something that’s going to happen overnight, it does take our loved ones,” said Jan Draper, 76, whose husband Gary Draper died last year after fighting Alzheimer’s for 13 years.
Jane joined others worldwide who participated in their favorite activities to raise funds and awareness for Alzheimer's research and support on The Longest Day, an annual event begun by the Alzheimer's Association.
For Jane, it meant skydiving, a leap of faith from 15,000 feet in the air.
"For a few short minutes, I'll be closer to him," she told Elizabeth Sehon of the North Central Chapter of the Alzheimer's Association.
Draper made her first jump in 2007 and said skydiving makes her feel free, which is why she chose this particular activity.
"Wondrous," she said of her most recent experience. "I was visiting with the Lord and Gary as we were free-falling knowing that there were so many generous giving hearts supporting us," she said. Her initial goal was to raise $10,000, but she has gathered more than $13,000.
This jump meant much more for Draper, she said. She's advocating for Alzheimer's patients like her husband and for caregivers like herself, who can sometimes live in the shadow of the disease.
A caregiver’s perspective
“It’s a very isolating disease for both the person going through it and also the caregiver, ” she said, adding that her biggest challenge was becoming her husband Gary’s sole source of support.
“My husband was very positive. He always said his glass was half full and mine was half empty,” she said. “I miss that. When his glass became half empty too, I didn’t have a counter. I didn’t have a person to lift me up.”
Gary was a pharmaceutical executive for almost 30 years. He enjoyed running marathons and playing golf with his friends. As his caregiver, Jan struggled to care for both of them as they confronted the uncertainties of the disease.
Her case is far from unique. In the U.S. alone, 16.1 million Americans provide unpaid care for people with Alzheimer’s or other dementias, according to the Alzheimer’s Association 2018 Facts and Figures report.
Gary had good days, when his condition seemed better than usual, Jan recalls. "We went out for dinner and we hadn't gone for dinner in two years," she remembered.
And bad days: He became upset with her the next afternoon when she prepared his lunch, like she always did. This was one of the many moments of inconsistency that dementia patients and their caregivers face. For the Drapers it was an emotional battle of 13 years.
As Jan saw the disease progress, she started keeping a journal. She would write monthly updates on Gary’s behavior, what medications he was taking, and how she was coping with the challenges.
A journal entry from 2016 reads: “In order to avoid confrontational arguing with him, I go outside for 1.5 hour or so, sometimes it is 2-3 times a day. No, this is not fun.”
“You keep a lot of things in ... you're feelings are getting all bottled up inside,” she said. She found a way of coping by narrating her attempts at understanding. As she watched her husband slowly fade away, she took to poetry. In one of her poems, she described some of his early symptoms:
“He bites his fingers and picks his skin. Says he doesn't do it, I just can't win."
Jan wrote more than 200 poems. The poems were also given to doctors in order for them to keep track of Gary’s sickness.
Three months before his death, Jan took Gary to a care facility, because he became too aggressive for her to handle, she said.
"I just look at other people now who have had spouses, especially, go through this and I just, I know what's coming for them and it breaks my heart," she said.
Based on her experience, she's now advocating for other families who are in a similar situation. She’s working closely with Rep. Giovanni Capriglione of Southlake on a legislative measure to restructure memory care units, providing hope for families and patients who endure the slow and long journey of Alzheimer’s.
Worldwide, there’s roughly 47 million people living with Alzheimer's and other dementia. Alzheimer’s disease is the sixth leading cause of death in the United States.
“It’s a devastating disease,” Draper said. “I think it would benefit everybody if we would have a more conscious effort to gear things toward research because that’s what's going to help.
"We need a cure, and that's why I'm skydiving for research."