When Bonnie Hay's grandmother died after a battle with Alzheimer's disease in 2003, she felt a sense of almost-indescribable loss.
"All these memories I have of my mawmaw, taking me fishing at her house ... I'd come in and lay my head in her lap, and she'd play with my hair until I went to sleep - stuff I remember like it was yesterday," she says. "But [during] her last days, she didn't remember that. She didn't remember me, or my dad."
It was an aching moment of confusion and grief, and for Hay, it was magnified by her awareness of her father's illness. In 1996, at the age of 48, her father Ken - her grandmother's son - also was diagnosed with Alzheimer's disease, which has a hereditary component. For the past 21 years, he has been living with the disease that can impair cognition and memory, and inspiring his daughter to speak out about a condition that she says often is misunderstood.
This weekend, Hay will travel from her home in West Monroe to be among participants at a free symposium offered by the Alzheimer's Association and Ochsner Health System Dec. 16 for caretakers of people with Alzheimer's disease and dementia. At the event, doctors, pharmacists and care professionals will offer advice on dealing with burnout, having difficult conversations and coping with an illness that affects as many as 5 million Americans. (There's no charge to attend, but caregivers who wish to attend must call (800) 272-3900 to register.)
[jump] Before his diagnosis, Ken (who is referred to by his first name here to help protect his privacy) was a driver for the Ouachita Parish Highway Department. He was quiet, while his wife Diane was the talker; and he was devoted to Hay, the "baby" of three children. The close-knit clan rode horses from the time the kids were old enough to sit up, and attended church together a few times a week.
But a pattern emerged in the family as Ken's mother, aunt and a cousin all were stricken with Alzheimer's disease. In Ken, Diane began noticing what Hay would later recognize as the 10 early signs of Alzheimer's disease, which include forgetfulness that interferes with daily life, confusion and mood changes. Tests, including a PET scan, revealed that he, too, was ill.
Within six months, Hay had moved home with her husband and their new baby to be close to her family and help her father adjust to his diagnosis.
More than two decades now have gone by since that frightening time. Hay, who works as a personal trainer, says her father has done remarkably well. He has had to stop working, but he makes a point of reading his Bible daily to "keep his mind active and stay focused." He's still able to take part in church activities, drive a car and ride a horse, which he and Hay often do together. She takes a lot of pictures when they're riding, in order to preserve the memory for both of them.
Still, she says, it hasn't been easy for her mother, who prefers to be home most of the time to look after her father. Ken also has struggled with the loss of his professional life, and worked to overcome a fear of others' judgment about what having Alzheimer's disease means.
"It took my dad 20 years before he wanted to put it out there. ... It was a hush-hush thing in our family, in a sense," Hay says. "Society looks at it as a mental thing, 'you have lost your mind,' and that's not it at all.
"You don't know [what it's like] until ... you've seen the hurt and upset on my dad's face, when he's singing at church and he forgets a word or two. He gets discouraged."
Hay says the family tries to take life one day at a time, while also coming to terms with the disease's heritability. Her older brother, who is now the same age as their father was when he was diagnosed, sometimes jokes but admits he worries about it. And Hay has been open with her daughters (ages 9 and 20) about their family history. "They know all about it. ... There's nothing to hide."
For herself, Hay tries to eat well and stay physically active, which doctors think can slow the progression of the illness - and she has become an outspoken advocate for people with Alzheimer's disease, hoping to encourage research for a cure. She personally sewed over 500 shirts to be sold for Alzheimer's awareness, and has promoted the cause at bull riding and rodeo events, served as an educator and congressional advocate for the Alzheimer's Association and hosted an Alzheimer's awareness Facebook page.
As advice for other caregivers of people with Alzheimer's, Hay says it's important to move past embarrassment or fear, and to find someone with a sympathetic ear.
"You don't want to hold it in," she says. "You need somebody to talk to. ... Find someone to support you."
She plans to keep working for Alzheimer's-related causes as long as she's able to.
"If I am to have this in the future, I'm taking it day by day, and I'm enjoying my life," she says. "We don't know what a year from now holds. I don't want to go there in my mind, so I fight every day. I do whatever I can."