Walking Away Alzheimer’s

The Oct. 6 Walk to End Alzheimer’s will help families of the 1,600 Garden Islanders who suffer from the debilitating disease

Alzheimer’s is a disease that’s easy to ignore — until you can’t.

“It hits you like a freight train. You don’t know how to handle some of the behaviors,” says Heather DeGues of her 91-year-old father Ray Harvey, who was diagnosed with Alzheimer’s. “There’s so much, it’s overwhelming.”

Her father started exhibiting unusual behavior patterns such as sleepwalking and becoming disoriented. At first, she thought it was the medications he was taking.

“He is so intelligent,” she says of Harvey, a former professor, regarding her dis-belief of the initial diagnosis. “He’s so smart, he leaves everyone in the dust.”

But further analysis confirmed that Harvey did indeed have Alzheimer’s — a disease that is reported to increase in acquisition by 50 percent at the age of 85. “This is like an unseen underworld that affects maybe a fifth of our island population,” says Humberto Blanco, Alzheimer’s Association’s Kaua‘i program coordinator.

Approximately 1,600 people on Kaua‘i are afflicted with the disease, which means that their family members as well as friends and neighbors are, in some capacity, also impacted. Those faced with the greatest challenges, however, are the ones who provide daily care.

“These caregivers are not unlike samurai because they’re facing these very stressful, unusual and overwhelming challenges that are beyond human capacity,” says Blanco. “It brings something out of the individual that is a strength far more than what you normally expect would be available. In that way, these people are very interesting warriors.”

It is Blanco’s job to make sure these caregivers are armed with the right weapons to face the disease head-on. Individual counseling sessions, group meetings and resources are among the many armaments provided by Blanco through Alzheimer’s Association.

“People who have taken this on have taken on a tremendous responsibility without there being substantial support for them along the way to totally figure out the best way to do this,” he says of why the organization is so beneficial to individual families and the greater community.

Rather than dementia being something that happens to them, they start to believe that, as a caregiver, they have the resources available to help them, and they become empowered instead.

“Not only do they have their own sources of strength that surprise me and everybody else around them, as to their resilience and what they’re able to do, but they also start becoming empowered in terms of their choices,” says Blanco.

In effect, they learn how to fill their own cups first so that they have more than enough to lend a hand to the person who is sick.

Alzheimer’s is largely a disease of the elderly, but it can affect people as young as in their 20s. While there are currently medical trials of various drugs, there is no established cure for the disease. And though there is no direct correlation of Alzheimer’s among family members and generations, it is believed that there is some sort of genetic predisposition.

And the symptoms are not always easy to spot. The common belief is that forgetfulness is a diagnosis.

“The mind can drift off to contemplation of other things, and it’s not present in the moment,” explains Blanco, “and that’s just normal mental fog.”

For example, the problem is not that you forget where you’re driving, but rather that you forget what the foot brake is used for.

Another symptom is not remembering what common objects are used for, like not recognizing car keys or taking a hairbrush and leaving it in the freezer.

Blanco can help relieve folks of the suspicion that they may have the disease, and he also can point them and their family members in the right direction to specialists who are able to properly diagnosis them.

Nonetheless, the most beneficial areas of Alzheimer’s Association are the four support groups for caregivers that meet once a month at different locations around the island.

“Even though people are dealing with things that are stressful and sometimes severely emotionally taxing, where they are at their wits’ end, when people get together in these groups or come for counseling, it becomes a happy experience,” says Blanco, who also has experienced Alzheimer’s in his family. “People are laughing, having fun with each other and connecting.”

Hearing other people’s stories and how they handle their experiences is so helpful, adds DeGeus. “He saved my life,” she says of Blanco. “He’s amazing, and I really appreciate what his organization does.”

Some 300 people are currently on the nonprofit’s contact list, and Blanco’s duties as the organization’s only employee include public speaking, and organizing fundraising events and care-giver trainings. Yet he still manages to find spare time to spend with his wife Tatiana, with whom he has a 5-year-old son, Mowyn.

Blanco, who is originally from Florida and whose parents are from Cuba, has always had a sincere desire to help others.

“I always figured you could work somewhere and do volunteer work on the side, or you could just spend all of your time doing what you want to be doing,” he says.

Blanco attended the University of Florida, where he earned a degree in political science. He also attended the Occidental College in Los Angeles and earned a master’s degree in diplomacy. He worked for various organizations, including the World Federation of the United Nations Associations. Blanco also spent time living in Scotland, reflecting upon war and violence and realizing that the world is one entity, despite the illusion of geographic separation.

“I was looking to reconnect with our roots as human beings and why we’re truly here,” he says. “There is really nothing wrong with us except that we’ve forgotten who we really are, and that our source is endless and what we can do also is limitless.”

The inner experience guided him back to the states and eventually to Kaua‘i, where he landed a job at Kaua‘i Center for Independent Living — a counseling center for people with disabilities.

Blanco is still accomplishing his mission of “helping people recognize an easier way” in his current job, which he’s had for more than two years.

“Humberto is the face of the fight against Alzheimer’s on Kaua‘i,” says Sharon Lasker, director of marketing for Regency at Puakea. “I know how important it is to those families to have those support groups, and Humberto is the gentleman who is out there making it happen.”

Regency at Puakea resident Charles “Chip” Rebb, who is serving as the organization’s Walk to End Alzheimer’s fundraiser ambassador, also knows how important it is to support those afflicted with Alzheimer’s, as many of his neighbors have the disease.

“We see it day-in and day-out,” says the 90-year-old retired firefighter. “Not only do we want to help, but we also want to find a cure.”

One way to help find a cure is to participate in the Alzheimer’s Association Walk to End Alzheimer’s Oct. 6 starting at 8 a.m. at Kukui Grove Shopping Center.

Proceeds from the walk will not only assist in finding a cure, but also will largely help fund the nonprofit’s local program.

“I hope that there is no longer a need for the organization one day, as a cure is developed for the disease and that people don’t have to endure this,” says Blanco. “Then all of us can go off to work on the next thing.”