Second of four parts
FLORENCE, S.C. – Johnny Belissary had a message for those taking care of a loved one suffering from Alzheimer’s disease: Breaks are necessary.
In his office last week at the New Generations Adult Day Center, Belissary, who also is a member of the state Alzheimer’s advisory board and an ambassador to U.S. Rep. Tom Rice of South Carolina, called Alzheimer’s a “horrible, insidious disease.”
Belissary praised Rice for his efforts in working with the Alzheimer’s Association.
“It’s the only one of the top 10 that there’s nothing to impede it,” Belissary said. “There’s no cure for it. There’s no drugs right now to safely slow it down.”
The rest of the top 10 causes of death in 2017, according to the Centers for Disease Control and Prevention, are heart disease, cancer, accidents, chronic lower respiratory diseases, stroke, diabetes, the flu and pneumonia, kidney disease and suicide.
People can control their blood pressure, control their cholesterol, exercise regularly, eat a healthier diet, limit alcohol, not smoke and manage stress to prevent heart disease, for example.
It’s believed that somewhere between 49 percent to 79 percent of Alzheimer’s cases have a genetic component, but there is no definitive evidence that any particular measure can prevent Alzheimer’s.
Belissary said the state association is work on a cure or prevention at the University of South Carolina and St. Francis Roper hospital.
Alzheimer’s is not, as it is traditionally associated, a disease of the aged.
Belissary shared the story of a doctor who graduated from medical school, had just finished paying off his student debt and was ready to begin living, but was diagnosed with early onset Alzheimer’s.
His voice fades as he continues.
“I tell people daily that when you find out you have Alzheimer’s, you’ve basically been given a death certificate,” Belissary continued. “You’re not going to beat it.”
Less than 3 percent of people diagnosed with Alzheimer’s live longer than 14 years.
That places a tremendous burden on the family members tasked with caring for the person diagnosed.
The caregivers must work with and watch their loved one deteriorate mentally with no real hope of improvement.
Belissary said many of the caregivers are on antidepressants because their world becomes a routine of waking up, caring for their loved one and going to bed, repeated ad nauseam.
“Bottom line, I’ve learned that it’s about the caregiver once the person’s been diagnosed,” Belissary said. “They obviously give compassionate care to the one with Alzheimer’s, but it’s kind of like managing — and I tell people this all the time — a great analogy is your cell phone. If you don’t charge it up at night, it’s going to go dead.”
Some caregivers, he continued in his analogy, try to fight alone and don’t seek help.
“A lot of people feel the guilt of, 'That’s my husband,' or 'I’m his wife,' or 'That’s my dad,'” Belissary said. “There’s no shame in asking for help. In fact, that’s the strength of it.”
Those caregivers don’t take advantage of support groups or adult care facilities that offer memory areas like New Generations.
Part of asking for help is taking a respite for oneself so one can keep fighting for their loved one.
That respite can take many forms: a lunch with a church member, an evening with high school friends who’ve returned to town, a grandson’s baseball game.
The state offers to pay for some respite in the Family Caregivers Act, and the Alzheimer’s Association offers a grant so that a caregiver can leave his or her loved one in place like New Generations for a break for a few minutes.
“We encourage people to take advantage of it,” Belissary said. “Because if you don’t get the break, this disease will break you.”
Belissary shared a story about a man whose wife was diagnosed.
The man found peace after he took his wife to New Generations and was able to work in his garage for a few minutes.
Another woman in her 80s cared for her husband but couldn’t sleep at night, because he would get up and take all of their kitchen supplies out of the cabinets.
New Generations was started by Belissary’s mother, Gail, and offers a memory room designed in 1970s style to take clients with dementia back to the time period they might remember most.
The furniture is retro-style, and the walls are painted bright yellow. Magazines that were published decades ago and feature cover stories on celebrities such as Elizabeth Taylor are located in the room, in addition to a vintage bicycle, pictures of the Three Stooges and Shirley Temple and an old sewing machine table, among other things.
The doors of the special Alzheimer’s section will be locked at all times, Belissary added.
He said New Generations can care for those who aren’t quite to the point of needing full-time medical assistance and care.