Coaching caregivers how to play offense, defense vs. Alzheimer's
Imagine what it would be like to visit your mother, whom you’ve built a lifetime relationship with full of warm and wonderful memories, only to discover she has no recollection of you, treating you more like a stranger than a child.
This is the feeling millions of families across the United States deal with on an everyday basis — family members turned caregivers of patients with Alzheimer’s, a form of dementia that gradually gets worse over time, affecting memory, thinking and behavior, and is a growing epidemic. Affecting more than 5 million Americans, Alzheimer’s is the sixth leading cause of death in the United States, according to the Alzheimer’s Association website.
“Having a family member with Alzheimer’s disease is not a cause for shame or a reason to hide away,” Frank Broyles, former University of Arkansas athletic director and coach, writes in his book, Coach Broyles’ Playbook for Alzheimer’s Caregivers: A Practical Tips Guide. “As a caregiver, you are going to need help—help from family, help from friends, help from members of your church. AD affects the entire family, not just the person who has it.”
Broyles, who’s helpful book will be passed out Wednesday, Nov. 20, to attendees of the second annual Family Portrait Luncheon at the Beaumont Country Club, knows first-hand how devastating Alzheimer’s can be. His wife, Barbara, was diagnosed with the disease in 1999.
“It wasn’t always easy for me to find the answers my family needed about Alzheimer’s disease, and at times I was frustrated and confused,” Broyles writes.
One of the many catalysts of frustration for family members and caregivers is an Alzheimer’s patient’s long-term memory loss, which brings with it “increasingly severe symptoms, including disorientation, mood and behavior changes; deepening confusion about events, time and place; (and) unfounded suspicions about family, friends and professional caregivers,” according to the Alzheimer’s Association.
Broyles explained a personal experience with this issue and how caregivers should deal with situations involving memory loss during an Oct. 16, 2009, appearance on the Dr. Phil show.
Broyles said his wife, who died of Alzheimer’s after succumbing to complications from the disease at her Fayetteville, Ark., home Oct. 13, 2004, would ask him to take her home to see her mother, who had been deceased for many years. While the common reaction might have been to answer her factually by saying, “Your mother is not here,” Broyles explained “You have to be creative to keep her calm.” Reacting otherwise might have caused his wife to react disputatiously and perhaps even violently, Broyles said.
“She goes into a behavioral pattern … she may try to hit you or leave the house,” he said.
Broyles said he instead responded, “Your mother has gone to a party. She’ll be back tonight. We’re going to have a good time right now. We’re going to play cards and watch TV, and then we’ll see your mother tonight. One minute later, she’s forgotten that. That’s what we call ‘creative.’”
Linda Domino, chairwoman of Family Portrait Luncheon scheduled for 11:30 a.m. Nov. 20, echoed Broyles’ advice, saying she also had to get ‘creative’ in dealing with her mother-in-law, who also suffered from Alzheimer’s. She cited a trip to the doctor as an example.
When the doctor appointment was over and the two were in the car preparing to return home, Domino’s mother-in-law asked, “What time are we seeing the doctor today? Are we going to be late for that appointment?”
“I realized she didn’t remember that we had just seen him,” Domino said.
Instead of reacting by telling her mother-in-law that she had already seen the doctor, Domino instead looked at her watch and said, “You know, we’ve got plenty of time. Why don’t we go out and have an ice cream cone, and I’ll let you know when it’s time for your appointment?”
Domino said the situation with her mother-in-law was defused by being creative and careful with her answer, much like Broyles was able to do with his wife.
Attendees of this year’s Family Portrait Luncheon will have a chance to learn more caregiving tips such as these as well as hear more of Broyles’ story, as his daughter Betsy Arnold and granddaughter Molly Arnold-Gay speak at the Beaumont Country Club event.
Doors will open at 11:30 a.m. for registration and seating, and the luncheon and program begins at noon with mouthwatering delights from Bando’s. Attendees will receive complimentary valet parking as well as a free copy of “Coach Broyles’ Playbook for Alzheimer’s Caregivers: A Practical Tips Guide.” Sponsorships with tables for 10 range from $1,500 to $10,000, and a limited number of individual tickets are available for $60 each.
In addition to Arnold and Arnold-Gay’s presentation, the Alzheimer’s Association will present a slideshow reporting 2013 statistics as well as offer a Q & A session regarding the disease. Arnold and Arnold-Gay will be available afterward for a meet and greet, said Clarissa Urban, Alzheimer’s Association regional outreach coordinator.
The purpose of the event is to honor and remember family members and friends who have been affected by Alzheimer’s and to support dementia-specific educational programs and awareness in Southeast Texas, with proceeds going to the Alzheimer’s Association to fund these programs as well as research to end Alzheimer’s disease, Domino said.
“The Family Portrait Luncheon is an annual event in other cities and after last year’s first, very successful Beaumont Family Portrait Luncheon, with more than 400 attendees, I am hopeful the Family Portrait Luncheon will be well received again this year and become a part of the annual Southeast Texas calendar,” Domino said. “It is my hope that this event will be an opportunity to generate awareness, learn more about the disease, support each other, provide encouragement and information for caregivers, and raise funds to end this dreaded disease.”
The event will also be an opportunity for young people to learn about the disease, as Arnold-Gay, who was 14 at the time her grandmother suffered with sponsorships, speaks about her family’s struggles with care giving. Arnold-Gay and Arnold moved in with Barbara and Broyles after she was diagnosed to help care for her.
Arnold-Gay witnessed what she described on the Caregivers United website as “some tough, but love-filled years” and realized how important communication in tough times can be. “The third generation affected by the disease, grandkids, is not talked about much. Molly hopes to change that by speaking at numerous events and seminars all across the country,” her profile reads on the website.
Coach Broyles and his family created The Frank and Barbara Broyles Legacy Foundation following Barbara’s death from Alzheimer’s disease; CareGivers United is the lead program of the foundation with a goal of educating, empowering, and energizing caregivers.
Urban, who also works to educate families about the disease, described a personal experience she had with her great grandmother while she was in college. Urban said during an annual visit to her great grandmother in El Paso during the holidays in 2012, she witnessed the deterioration of her great grandmother’s health. A year prior, she had been an extremely active and healthy 90-year-old woman, Urban said.
“She wasn’t eating or wanting to drink anything,” Urban said. “She was having hallucinations and delusions. She didn’t recognize any of us.”
Although her great grandmother, who died shortly after the visit, was never diagnosed with Alzheimer’s disease and her family never understood her condition, the emotional experience impacted Urban’s future choice of careers and she began actively advocating for awareness of the disease.
Urban, who is of Hispanic descent, says that her family’s denial regarding her great grandmother’s disease isn’t uncommon in the Hispanic community, pointing to statistics by the Alzheimer’s Association which show Hispanics to be about one and one-half times more likely than their white counterparts to have Alzheimer’s and other dementias.
“My family were in a little bit of denial about it, but they weren’t educated about (Alzheimer’s) either; I had to research it,” said Urban, who added that many Hispanics might attribute symptoms to old age.
Urban said events like Family Portrait Luncheon will educate all families, Hispanic and otherwise, about Alzheimer’s.
“We want to equip caregivers with tools and tips and guides and just let them meet and greet other caregivers and learn that they are not the only ones helping mom or dad … with this disease,” Urban said.
As baby boomers age, the number of individuals living with Alzheimer’s disease will rapidly escalate, increasing well beyond today’s estimated 5.4 million Americans living with Alzheimer’s, according to Alzheimer’s Association statistics.
“My best advice to you is to treasure each day and live it to the fullest. Cherish the time you spend together and, perhaps most important, love each other. I hope you find peace in knowing that it is still possible to live and love when someone you love is living with Alzheimer’s disease,” Coach Broyles writes. “Learn all you can about Alzheimer’s disease. It will help you prepare for the months and years ahead.”
The Beaumont Country Club is at 5355 Pine St. in Beaumont. For more information about the Family Portrait Luncheon or to purchase sponsorships or tickets, contact Clarissa Urban at (409) 833-1613 or curban [at] alz [dot] org.