Living In The Moment
Photo by Lawrence Tabudlo
By all accounts, Peter Black has always possessed a keen mind and a sharp memory. When you work as an anthropology professor at a highly regarded university, mental acuity is naturally a requirement.
But one day, his wife, Barbara, began to notice something out of the ordinary — the initial signs that his mind wasn’t its usual self. While discussing plans for an upcoming party, Peter suggested they invite a particular person. An alarmed Barbara stopped and stared at him.
“She just looked at me and said, ‘Don’t you know she’s dead?’ So, that was pretty impressive,” Peter recounts.
Soon, he began to experience additional “errors” with his memory.
“One that caught my attention was I was walking out of a store with a 20-pound standing rib roast. It cost me a lot of money and I don’t have a lot of money,” Peter recalls.
Things got so bad that he began to feel that his teaching was threatening to become less than it needed to be as a professor at George Mason University in Virginia.
According to Barbara, “He retired early because he felt that he couldn’t give his students his best anymore. Lecturing was becoming harder for him. He used to be able to stand up without notes … so, I kept telling Peter, ‘If you’re concerned, you should go and be evaluated,’ and that was my mantra, basically, until he did.”
Ultimately, Peter took his wife’s advice and made an appointment with neurologist Dr. Huidy Shu of Pali Momi Medical Center. The couple had split their time between Virginia and Hawai‘i for years before finally settling permanently in the Aloha State after Peter had retired. Following several tests, he was diagnosed with mild cognitive impairment in 2015. That diagnosis was changed to Alzheimer’s over time and confirmed by a positron emission tomography (PET) scan.
“They were very simple tests, although I didn’t do well on them and that was a shock to me, because it was something I was totally confident about. I ended up with a diagnosis,” says Peter, 83.
“I was expecting something bad to happen,” adds Barbara. “But it still just really shocked me. I started reading more about all of these things and trying to educate myself about everything.”
These days, the Blacks are on a mission to help others navigate early Alzheimer’s diagnosis and determined care. In spreading the word about their own experience with the disease, the couple hopes to encourage others to recognize the signs of Alzheimer’s and get a cognitive assessment from a health care professional.
Since 1983, November has been observed as Alzheimer’s Awareness Month. Dementia is an overall umbrella term that describes a group of symptoms, such as memory loss, difficulties with language, problem solving and other cognitive functions. Alzheimer’s disease is the most common type of dementia. Last year, the Alzheimer’s Association estimated that more than 31,000 Hawai‘i residents are living with this disease.
Peter credits his early and accurate diagnosis with giving him access to a disease-modifying therapy, which has been shown to slow his symptoms and allow him to retain more of his memory and cognitive function than would otherwise be possible.
“So, you get more time as yourself,” Peter explains. “It’s not better, but it could be a lot worse.”
As part of his treatment, Peter takes several medications, including Leqembi, memantine and donepezil. The Leqembi is administered as an intravenous (IV) infusion every two weeks at Pali Momi.
Peter and Barbara, 80, who is also managing her own long-term physical illnesses, live in the town of Nīnole on the Big Island. Despite their challenges, they travel to O‘ahu every two weeks so Peter can receive his treatment from one of the few memory care specialists in the state.
The couple is grateful for friends who pick them up at the airport so Peter can attend his treatments. However, they pay for their own plane tickets, which becomes very expensive over time.
“That’s kind of an issue, because we’re not rich. So, it shapes our lives,” Peter says.
“Our lives sort of revolve around every other week coming over here (to O‘ahu) so that’s difficult,” adds Barbara. “But it’s absolutely worth it.”
They say that although the burden of travel is significant, the time gained through treatment is invaluable.
Their story underscores the importance of early detection and access to specialized care. It also highlights the urgent need to expand memory care services across Hawai‘i’s neighbor islands and rural areas, so that more families can benefit from timely intervention without facing geographic and logistical barriers.
“Not everybody has the resources to be able to make that flight or to be able to get free, or have someone to help them over, or all of that. It’s a matter of equity, if nothing else,” Peter says.
The couple is also appreciative for the assistance from their hānai daughter and her friend, who chose to live in a separate dwelling on their Big Island property.
“They are here to help us and they really do,” Peter says.
According to the Blacks, the earlier the diagnosis of Alzheimer’s disease, the better. To slow the onset of the disease, actions can be taken to gain valuable time. People should talk to their doctor about doing a cognitive screening if they notice changes in behavior. The couple adds that people should use Medicare benefits like annual wellness visits for cognitive assessments.
“I would just advise people to get evaluated and assessed,” says Barbara. “You should ask for it, and when you get the results, you have more of an idea of what you need to think about and how you can plan for the future.
“The sooner you know you have this disease, especially now that there are such wonderful treatments available, the better,” she adds.
Peter isn’t sure what the future holds for him but considers himself very fortunate. Peter is grateful for his wife Barbara, also known as “Bobby,” who has been a great support to him on this journey.
“Bobby is a caretaker. Bobby is on it. She’s great, and whatever comes along, we’ll be in it together,” he says of his wife. “I am extremely fortunate to be able to be cheerful, telling jokes all the time.”
According to Barbara, good communication is a key to dealing with an Alzheimer’s diagnosis.
“I’ve discovered through this process that many of the people, where there’s a couple and one person has the disease, they don’t talk to each other about it. They know about it, but they don’t seem to communicate, mostly, and I think that’s a big mistake,” she says.
Since the diagnosis, the Blacks have also become advocates of the Alzheimer’s Association.
“They (the association) are so great at providing training, and support groups and information is readily available,” Barbara says.
The association also sponsors the Walk to End Alzheimer’s, an annual event held in communities nationwide to raise funds and awareness for the care, support and research efforts of the association. The couple created Team Honohina and participated in the event in Hilo this past September.
“We live on the East side, Nīnole, and the land that we bought … in the old times was called Honohina, so that’s what we named our Alzheimer’s team,” Peter says.
“The Alzheimer’s Association does good work and that’s for the whole country, and for me personally,” Peter says. “The Alzheimer’s Association has been one of the things in my life that has been very positive since I got this diagnosis. And getting the diagnosis early, sometimes you’ve got to get your courage up a little bit and say, well, yeah, why not get tested. And if you get the bad news, accept it, or get a second opinion, if you want to. But, if it holds up, then the smart thing to do is not to hide from it. Live your life, but live it in the light of reality.”
Barbara also emphasizes that it’s important to find joy in the little moments of life. The couple relish their hobbies, including making pottery, gardening and doting on their grandchildren.
“Look at the flowers. The thing about living in Hawai‘i is everywhere you look, even if you’re doing something you don’t want to do, like pump gas, just lift your eyes up, and there’s beauty there,” says Barbara. “And, that makes such a difference to me.”
