It’s National Caregivers Month

I don’t know what caught my eye, initially about luv2bxxl on Instagram. Certainly, among the 900 accounts I follow, I liked the food photography and scenic shots in his feed.

But at some point, I became aware of something else: he was also documenting the poignant journey of his uncle, Eddie Sakai, who has Alzheimer’s disease.

The Instagrammer, Glenn Nishida, is Uncle Eddie’s caregiver. And not only was he raising awareness of Alzheimer’s on Instagram, he was sharing innovative and practical tips for dealing with this daunting disease.

It occurred to me that some “Call Me Grandma!” visitors might be doing more in life than engaging happily with the grandkids. They might also be taking care of each other in similar heartbreaking circumstances.

Note: Sadly, Uncle Eddie Sakai passed away in September 2021.

So, I reached out to Glenn, who lives in Kahaluu on the island of Oahu. November is National Family Caregivers Month. It seemed a good time to profile a caregiver and honor their selfless work.

Meeting Glenn by Zoom was a delight. He gave us some creative, actionable tips for Alzheimer’s care. And he regaled me with funny stories that must have been embarrassing, humiliating, or maddening at the time. “You have to laugh at this stuff or it’ll drive you crazy,” he chuckles.

How Glenn and Joan Became Caregivers

Five years ago, Eddie Sakai, unmarried and without children, ended up in the hospital after a devastating fall. While he was getting discharged, with the family at his bedside, the doctor gave the stunning news that he could no longer live by himself.

Glenn’s wife Joan, a geriatric nurse practitioner, gave voice to a thought: they were empty nesters with extra room to spare…. Without further deliberation, the couple volunteered to take Uncle in. “It was a spontaneous decision,” Glenn recalls.  “We had no idea how hard it would be.”

Baking can be therapeutic for caregivers if the recipe is quick and easy, and made in stages.

A few months later, Uncle was diagnosed with Alzheimer’s disease.

“It’s so difficult. They’re constantly fighting you. Like a three-year-old with a bad mouth. By the second day after he had moved in, the honeymoon period was over,” Glenn recalls. “We asked ourselves, ‘What have we done?'”

On reflection, Glenn and Joan’s selfless decision stemmed from two deeply-held beliefs, he surmises. One was expressing gratitude to a favorite uncle who always gave the best Christmas presents. And the other was being part of a culture that takes care of their elders.

Glenn divested most of his medical sales business to become Uncle’s primary caregiver while Joan continued to work full-time.

Motivating an Alzheimer’s Patient

“Dementia patients get aggravated because they don’t know what’s going on. They get frustrated and balk at authority.” Glenn says. So when Uncle refuses to listen, instead of fighting him, Glenn enlists another motivator.

• For example, having a schedule helps. If Uncle refuses to brush his teeth or change his briefs, Glenn points to the schedule. He might not listen to Glenn, but if the task is on the schedule, Uncle is more likely to comply.
• In one of his most out-of-the-box ideas, Glenn uses the TV to tell Uncle what to do. The caregiver pairs his iPhone with his smart TV and sends out text messages that appear on the TV screen. When the TV displays the message: “EDWARD SAKAI, BRUSH YOUR TEETH,” Uncle is better motivated because the TV told him to do it.

Using Memory Loss to Advantage

“Because Uncle’s memory is so short, it works in my favor,” Glenn says.

• If Uncle is in a bad mood, yelling when Glenn wakes him in the morning, Glenn merely leaves the room to change his shirt. When he returns, Uncle now sees him as a new person, happy that that disagreeable other guy is gone.

Food Issues and Alzheimer’s

“When he first moved in, Uncle wouldn’t eat at all. He refused everything I cooked,” Glenn recalls.

“You put time and effort to make a meal and he throws it on the floor. It hurts. We’re human. We all have feelings. You have to tell yourself, it’s not Uncle doing this.”

For starters, Glenn purchased break-resistant Corelle dinnerware.

• Glenn would try to make the food more interesting, like turning a hot dog into an octopus (scroll down this link to my bento post and you’ll find an example). He was using the same tricks I use for my preschool grandson.
• He reasoned that Uncle didn’t like food on a flat plate because it was too much information.  So he began to chop up all the elements and put them in a bowl.

Maintaining Self-Dignity with Alzheimer’s

“I’m a big believer in self-dignity,” Glenn says. “We try to make Uncle the decisionmaker.”

• When it’s dinnertime, Uncle will say he’s not hungry. Glenn plays along and asks what time he’d like to eat. If Uncle says in an hour, Glenn leaves and circles back five seconds later. He tells Uncle it’s now the designated time and leads him to the table.
• When going out to dinner (pre-COVID), Glenn would sneak a hundred dollars into Uncle’s wallet. Then he’d tell Uncle, “You can treat us to dinner!”

Self-Care for the Alzheimer’s Caregiver

Caring for someone with Alzheimer’s takes a physical and mental toll. Glenn says that the key to staying in balance is to make time for yourself. “Even 15 minutes away is amazing.”

This caregiver estimates he spends about four hours a day on specific caregiving duties–getting Uncle ready for breakfast, dressing, bathing; brushing teeth– aside from being always on call.

“Photography and cooking are my two getaways,” he says. Glenn is remarkably talented in both arts, as you can see from the photos in this story.

Glenn learned to cook about 15 years ago when his wife went back to school for her Master’s Degree and he took on the cooking chores. “I learned to cook, basically, from YouTube,” he says. He posts intricate food shots and even cooking videos featuring quick and easy recipes for caregivers.

Glenn has been taking photos since he was ten. Uncle gave him his first camera. Since they live ten minutes from the beach, Glenn starts his morning there with his camera before the household wakes up.

He can shoot the sunrise, and be back home in less than an hour. Due to COVID-19, Joan works from home so Uncle is never alone.”I’m a firm believer in taking time out. Go for a walk. Do something other than thinking about how to get Uncle to eat,” he says.

“Instagram is very much an outlet,” Glenn acknowledges. By posting his photography and sharing his caregiving tips and experiences, Glenn has created a platform he can use to help other caregivers, give encouragement, and show solidarity.

The Best Caregiver Advice

For National Caregivers Month, I looked for some lasting advice for caregivers. Glenn didn’t disappoint.

“The mantra I live by is that it’s okay to get mad, frustrated, and angy, but do it without guilt. All we can do is our best. I can’t do any more than my best,” Glenn says.

“If I beat myself up because I yelled at him, it will eat away at me. Give yourself permission to know that you lost it today, but tomorrow is another day.”

The Future for Uncle Eddie

This year, Glenn and Joan had much-needed 30 days of freedom because, as a former Marine, Uncle was entitled to participate in a veteran’s respite program funded by the VA.

“Tip to caregivers: If the person you are caring for has served in the military, get that veteran service-connected through the VA. That was huge for us,” Glenn says. The Nishidas just learned of this program in 2017. They hired a private company to handle the government applications.

As Uncle’s Alzheimer’s progresses, home care is becoming increasingly difficult, so Glenn and Joan plan to place Uncle in a care home next year.

One of Glenn’s Alzheimer’s Stories

Every public outing is fraught with pitfalls.

When Uncle first got his walker, Glenn had him decorate it with stickers. Then he mounted a bicycle horn on the walker, just for fun.

One day, on a busy elevator, going to a doctor’s appointment, a pretty nurse steps in. Uncle, now all excited, starts gawking at her. Having no filter, he makes a lewd comment about her anatomy, and starts honking his horn.

Ever the professional, the nurse was unperturbed, but a very embarrassed Glenn was left to apologize to everyone else on the elevator.

Glenn’s stores are legion.

National Family Caregivers Month

We salute all family caregivers during National Caregivers Month–and throughout the year–for the tireless and often thankless, work they do every day. Glenn’s story is a profile in patience, inventiveness and compassion, and it was a joy to meet him virtually.

• For family caregivers in need of support and resources, visit Family Caregiver Alliance.
• For more photos by Glenn eloquently documenting Uncle’s Alzheimer’s life, check out HuffPost.
• Follow Glenn’s caregiver journey on Instagram.

Don’t forget to sign up for my email newsletter! Every Wednesday, I’ll give you a new idea for an activity or insight to nurture the little ones in your life. Come visit!