Broyles Foundation offers support for Alzheimer's caregivers

Today is National Grandparents Day. Molly Arnold and her family will face the day with quiet reflection and sadness: Arnold's grandfather, Frank Broyles, passed away on Aug. 14 of this year and her grandmother, Barbara, died in 2004.

But Arnold's family also has reason to celebrate the day and the legacy that both of her beloved family members left behind. Soon after Barbara Broyles passed away, the Broyles family created The Broyles Foundation, whose mission is to help caregivers of those with Alzheimer's disease navigate the stressful and emotional waters of caring for someone with the disease. Both Barbara and Frank died of complications related to Alzheimer's disease.

"This is our 11th year," says Arnold, who serves as the vice president for the Foundation. "After my grandmother passed away, we started mentoring families, and what was so wonderful about that is that we were able to talk to them about all of the things that we wished we had done at the beginning. We didn't have a lot of knowledge or a lot of resources then."

Arnold says it was six years between when Barbara Broyles first starting exhibiting symptoms of Alzheimer's and when she was finally diagnosed, primarily due to a lack of familiarity with the disease at the time.

"We knew there was something wrong -- she came home one day and said, 'I'm tired, I'm going to back out of everything,'" recalls Arnold of her grandmother. "She taught Bible school and volunteered everywhere, and she came home one day and said that. And we said, 'You're tired, you've done it for 50 years, take a break.' But then, when she was driving, the stoplights became stop signs, and she couldn't balance the checkbook, and her short-term memory started getting worse.

"Even once we got a diagnosis, it was like, 'OK, now what do we do?' There was a lot of medical information, but not anything on treatment options, or how to take care of the caregiver. So it really made things a lot harder for our family. If my grandfather were talking to you, he would say, 'There's no substitute for preparation -- you have to know your opponent.' If you don't know the process or what's available out there, then it makes it a lot harder for the family."

Alzheimer's is currently listed as the sixth most common cause of death in the United States, though there is information that points to the possibility of it soon being ranked third, just behind heart disease and cancer in older adults. It's a disease that's known to be particularly hard on the caregivers involved, as the patient becomes less and less able to care for themselves on a day-to-day basis.

Arnold moved from Houston so that she and her family could take care of her grandmother.

"We lived in the house with her and were her primary caregivers, and she stayed at the house the entire time. We learned a lot."

After her grandmother's death, Arnold and her family sat down and compiled what they learned into "The Playbook," a handbook for Alzheimer's caregivers. Arnold says that knowing what to expect -- and how to best handle it -- can make a big difference in keeping caregivers healthy.

"Being a caregiver is incredibly stressful," says Arnold. "You go through all kinds of emotions -- the guilt, especially. With Alzheimer's patients, you're oftentimes speaking for them and making decisions and wanting to do the best that you can for them. When they can no longer do that for themselves, you're their advocate. And my mom was taking care of kids while she was dealing with this disease, as well."

One of the most important things Arnold says her family learned was the value of early diagnosis.

"It was harder when my grandmother was diagnosed," she says. "There wasn't a lot of information out there. So we were already behind by the time we finally got the diagnosis. It's important to get that diagnosis as soon as you start noticing the symptoms. When we started dealing with our grandpa, we knew what we were looking for; we were prepared. A diagnosis doesn't have to destroy a family. When you're prepared and know what you're dealing with, it really cuts down on a lot of stress.

"And you have to advocate for yourself and your loved one. As soon as you think there's a problem, you have to trust your instinct and go find help."

Arnold and the Foundation also emphasize the need for caregivers to find support resources.

"Take care of yourself as a caregiver," she advises. "Get into counseling. Find a support group. Put together a team. You have to have a good team together, not just a quarterback. It's hard to enjoy these moments together when you're just running on empty. I think all of that goes back to knowing what your opponent is and what's out there and available. You have to have a game plan."

Former caregiver Zack Wiggins says that The Broyles Foundation should be part of any caregiver's game plan: in addition to The Playbook, the Foundation offers weekly support groups, continuing education, family counseling, transition assistance, phone counseling and resource assistance. Wiggins and his family sought this support from the Foundation when his mother was diagnosed with early onset Alzheimer's in 2014. She died on August 4.

"I made a phone call in December of 2015 to the Broyles Foundation and immediately got a call back," says Wiggins. "My sisters and I set up a meeting with them so that we could get a gauge as to where Mom was and how we needed to help as best we could. They were a huge help. They provided information on the disease itself as well as provided us with resources and suggestions and ideas and things like that."

Wiggins says that the Foundation offered his family support through the time period that his mother was ill, lending support when needed, stepping back when the family was succeeding on their own.

"They were much more than a voice on the other end of the line," says Wiggins. "They were somebody that came into our home, came into our family -- became part of our family and the team that was taking care of my mom. It was such a personalized experience."

"All of our services are at no cost to caregivers, and that's really important -- oftentimes, caregivers are at home with their loved ones and not able to work," says Arnold. "A lot of times, people don't even know what questions to ask, so we can get that ball rolling. We're here to get the caregiver plugged into exactly where they need to go to get help."

For Arnold and her family, helping others through the Foundation is the perfect way to honor Frank and Barbara Broyles.

"Any time you deal with any type of tragedy, you have to turn it into a way to help somebody else," says Arnold.

NAN Profiles on 09/10/2017