Betsy Broyles Arnold, CEO of the Frank and Barbara Broyles Foundation, gave an emotional talk to caregivers of Alzheimer’s patients, medical professionals, educators and others this week as part of an event marking World Alzheimer’s Day presented by The Phyllis Gough Huffington Endowed Lecture Series and UTHealth Consortium on Aging with UTHealth HCPC.
Arnold, widely known in the caretaking community, invoked memories of both her mother and father, who both were victims of Alzheimer’s, as she spoke to attendees at the UTHealth Cooley Center. Her father, Frank Broyles, was partly the subject of the book she co-authored titled “Coach Broyles’ Playbook for Alzheimer’s Caregivers.” He was also a longtime football coach and Arnold explained that many bits of wisdom imparted on her and fellow caregivers was sometimes through an athletic lens.
There were three things Frank Broyles would tell his players on the football field that were the most important, the first being that their attitude was their greatest asset.
“He always looked at taking care of my mother as a privilege,” Arnold said. “Any time you look at anything as a duty it can become negative, so it’s really important to look at things in a positive way.”
Arnold’s father also taught his players to know their opponents. From the standpoint of a caregiver, Arnold said that educating oneself on the disease is extremely important.
“When we went through it, we didn’t know anything,” Arnold said. “When you educate yourself, it’s going to give you a better quality of life not only for you but for your loved one.”
She also said the third point is that there is no substitute for good preparation. Arnold also shared one of her favorite lines often spoken by her father: “Everybody has compassion, but when that compassion turns into passion, it propels action.”
Throughout her talk, Arnold shared stories that were sometimes sad, sometimes funny, but were always learning experiences for herself and caregivers in attendance. She addressed the ebb and flow of those suffering from Alzheimer’s, how some days are better than others, and the difficulty of dealing with a person not only losing their judgment, reasoning, and their language.
“It’s mentally exhausting because you’re trying to stay one step ahead of them,” Arnold said. “It’s emotionally exhausting because you’re losing a piece of your loved one week after week, and it can take years. It can be physically exhausting because they can get their nights and days turned around.”
Most people have this disease for three to four years before others begin to truly understand a loved one has a problem, Arnold said. Overcoming denial is an important first step, along with seeking medical help and support groups.
Speaking about her experiences with her late mother, Arnold advised caretakers to remain as positive as possible as victims can still read body language and facial expressions. She emphasized removing “you” from vocabulary and emphasizing “we” and doing activities together as opposed to simply telling a loved one to do something.
“I would ask my mother ‘Why don’t we go in the bathroom and brush our teeth?’ I would go in there with her and put toothpaste on my toothbrush and toothpaste on hers, do the water, hand her the brush and start brushing my teeth.”
Arnold said her mother, like others suffering Alzheimer’s, would mimic her, allowing everyday tasks to be completed with less confusion and frustration on her mother’s part. While there would be occasional arguments or differences, Arnold stressed the importance of validating the loved one – for instance, agreeing with an old story they might tell and the details are incorrect – and easing them into a distraction as their short term memory takes hold.
“I lived in her world,” Arnold said. “When you step into that room as a caregiver you have to live in their world and wherever they are in that disease. When you’re in that room, you have to watch their eyes and figure out where they are. You literally have to let everything go.”
Breno Diniz, M.D., Ph.D., assistant professor of Psychiatry and director of the Geriatric Psychiatry Unit at UTHealth Harris County Psychiatric Center, also answered a few questions alongside Arnold during the concluding Q&A session. Diniz spoke about concerns about treatment and prevention in particular. He cited a statistic showing that the number of patients with Alzheimer’s in the US decreased slightly in the last two years, probably due to better treatments for conditions like hypertension and greater emphasis on things like exercise.
“Keep yourself physically active and nutritionally rich – not the American way of eating,” Diniz joked. “We have several diets such as the Mediterranean diet that can keep you very healthy. Keep yourself intellectually and socially active.”