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Family legacy

Caring for ‘Pops’ gives Vince Zangaro a
preview of what his future may hold.

Orange juice. That was what Vince Zangaro asked his dad to get from the corner store. Thirty minutes later, Albert called on the verge of tears. He couldn’t remember how to get home.

Vince’s car was too low on gas to go get his dad. All he could do was keep his dad on the cellphone and help him navigate his way home.

When “Pops” finally walked through the door, the two men hugged and tears streamed down their faces. Vince promised to do a better job of taking care of his father.

The reality of the Alzheimer’s diagnosis his dad had received three years earlier finally hit Vince like a slap to the face.

“That was the day I took his keys away,” Vince said.

Father and son have grown closer since that day a decade ago. Becoming his father’s primary caretaker meant Vince, now 41, had to grow up and accept the fact that a disease was stealing his dad from him, one memory at a time.

It also forced him to recognize that he may be next in the line of Zangaro men affected by Alzheimer’s. His uncle, father and grandfather all shared symptoms of the disease.

But unlike his dad, who has health insurance and a son to take care of him, Vince has neither. As he helps his 75-year-old father shower, shave and dress each morning, he wonders, who will take care of him? He tries not to think about the answer.

Albert’s loyal cockatiel Chappie perches on his foot.

2
Party animal

Vince was 26 when his mother died of a massive heart attack in 2001. Though Rose Marie Zangaro had been sick for years with lupus and rheumatoid arthritis, Vince was still shocked.

Her death “wasn’t even on my radar,” he said.

His sister, Donna, had been their mother’s primary caregiver. As Rose’s heart grew weaker, she knew her life was drawing to a close and she recognized the tension between Donna and her father. One day she sat her son down in Albert’s favorite recliner.

It’s up to you to take care of Dad, she said.

Vince had agreed, of course. But now that Rose was gone, the promise he made to her resurfaced.

Up until then, Vince didn’t have a close relationship with his father. The differences between them seemed vast.

Albert liked to work with his hands, fixing aircraft engines and air conditioners for a living. His life was about providing for his family. Vince aspired to be a rock guitarist and singer. He was a heavy drinker with a cocaine habit who lived on the road as a personnel recruiter for Hot Topic, a teen clothing chain. His life was all about making money, meeting girls and having fun.

Albert dressed conservatively in jeans and T-shirts emblazoned with logos for the Navy, the Air Force or John Deere. Vince got his nose pierced when he was 17, then his lip and his eyebrow. He added 00 gauge holes in his earlobes, bleached his hair and adorned his skin with tattoos.

But when his mother died, Vince realized it was time to put their differences aside. He quit his job and moved into his father’s house in Marietta.

3

A union guy

Albert Anthony Zangaro was born near Camden, N.J., in 1942, the fourth of five children.

An athlete, he ran cross-country in high school. After graduation he enlisted in the Air Force and learned to work on airplanes. He did a four-year tour then joined the Navy Reserves and entered the civilian workforce. Meanwhile, mutual friends set him up on a blind date with Rose, a college student studying to become a teacher. They married during the Summer of Love in Franklin, N.J. Two years later they had Donna, and Vince came along four years after that, making their family of four complete.

Albert got a job as an aircraft mechanic with Eastern Air Lines and the family moved to Marietta about the time Vince was in kindergarten.

“Pops was such a union guy,” said Vince.

In 1986, when Vince was 10, big changes were afoot at Eastern. Frank Lorenzo bought the airline and attempted to institute dramatic cost saving measures that included cutting salaries and encouraging pilots and machinists to circumvent regulations. In March 1989, more than 8,500 machinists, mechanics and baggage handlers walked off the job at 27 airports, including Hartsfield in Atlanta. Striking pilots soon joined them. And Albert was among them, putting in his time on the picket line.

To young Vince’s delight, his father would take his teenage son with him to walk the picket line at night and yell “scab” at strikebreakers.

Today Vince questions whether taking a 16-year-old to a picket line was a good idea, but at the time he loved it. And he learned that loyalty and perseverance were characteristics his father held dear. At risk of losing their livelihoods, health benefits and pensions, Albert and his fellow union members stuck together. In the end, the long, drawn-out strike contributed to forcing the airline to shut down in 1991.

But that meant Albert no longer had a job, and Rose’s health was beginning to decline, which prevented her from working. Worried about how he would support his family, Albert grew frustrated and angry. The stress often escaped in tongue-lashings when the kids misbehaved.

Albert eventually got a job as a general maintenance man, fixing air conditioners and managing a small staff in the Richard B. Russell Federal Building in downtown Atlanta. Until his memory started slipping and he’d get lost on his way home.

It started with little things. Things Vince found easy to ignore. No one wanted to believe a man in his early 60s couldn’t recall how to make a sandwich. Albert could fix airplanes and air-conditioning units, how could he forget how to use the television remote?

But when he started forgetting Vince’s name, and then his own name, Vince knew it was time Albert saw a doctor.

In the doctor’s office, Vince was shocked when Albert couldn’t name the president of the United States or tell time by reading the face of a clock. He remembered Rose, who’d been gone about three years, but everything else seemed fuzzy.

Just before his 62nd birthday, Albert retired.

Once Vince got a close look at his father’s finances, he realized they needed to sell the house. They eventually moved to a rental house in Acworth, and Vince cashed in his stock options with Hot Topic to start a town car business, which foundered for a couple of years before shutting down.

4

Caregiver fatigue

Vince, who had never taken care of anyone but himself, was suddenly thrust into the role of caregiver, and he struggled. Albert’s weakening mind left him confused, scared and sad. Doctors loaded him up on anti-depressants that didn’t mix well with his other medications, and he ended up frustrated and disoriented. Looking back, Vince regrets blindly trusting the doctors.

Vince dialed back Albert’s meds, fell into step with his father’s slower pace and together they began working on tasks using simple motor skills. They began to co-exist more comfortably. But the frustration of not knowing more about the disease, coupled with the family’s strapped finances, ate away at Vince. He found himself growing short-tempered and turning his anger on Albert. Vince was reminded of his dad lashing out at him when he was younger.

“I remember yelling at my father, not understanding why he was doing this to me and calling him selfish,” Vince said. “I would drop on the floor in tears on many occasions. I just didn’t want to go on.”

One time, Albert awoke in the middle of the night in a terror. Wandering through the kitchen, the living room, the bedroom, he banged loudly on the doors and screamed. The next day Vince took Albert’s bedroom door off its hinges. Eventually, he and Albert began sharing a bedroom.

At first Vince tried to stay in touch with friends, to balance his caregiving duties with some social time, but he didn’t know how anyone in their early 30s could relate to his reality. He started lying to friends, telling them he had gigs when they called to invite him out. In reality, he couldn’t get his band back together because he couldn’t leave his father at home alone.

The loneliness left Vince feeling isolated and adrift. But he persevered.

“I made my dad a promise that I would care for him no matter what.”

Vince grew depressed and even feared he was developing lupus at one point. He realized he needed to ask for help. That’s when he found out how little assistance existed for family caregivers. Online he found self-help blogs and links to counseling providers and tips for getting Medicaid, but Albert needed tangible things like a wheelchair and a ramp so he could go to his doctor’s appointments.

Having watched his own father deteriorate in a nursing home, Albert had begged Vince not to let him end up the same way. But Vince no longer knew what to do and he started to look at nearby facilities.

But he’d made a promise. He just couldn’t bring himself to break it. That’s when it hit.

“I had a decision to make: Give up or grow up,” Vince said. “I started to change my whole way of thinking. Instead of dad having to live in our world, I decided to live in his.”

5

Then came Amy

Vince realized that if he was going to take care of Albert, he needed to take care of himself, first. That meant taking a much-needed break from his caregiving duties. For eight months Albert stayed with relatives in New Jersey while Vince resumed some semblance of his former life.

That was when he met Amy King.

Vince was playing pool with some friends at a pub in Acworth when Amy walked in. A recent divorcee, she was attracted to Vince’s spiky bleached hair and struck up a conversation. They dated casually at first, but as they got to know each other, Albert realized Amy was special. She listened, and she cared. He started to open up about his depression, his dreams, and for the first time he started to share details about caring for his dad.

“She saw something in me that no one else did.”

By the time Albert came back home, Amy had moved in and helped bring order to their home. The refrigerator was stocked, the floors were clean and now Vince had someone to help him care for his father. He could even play the occasional gig at night.

With Amy in his life, Vince was inspired to do better. He started writing songs again, which gave him an outlet for his frustrations. “I want to be a better man; have the strength to stand to be who I am,” he crooned.

He honed his sound, a blend of alternative and classic rock, and the act of singing gave him an outlet for releasing tension. He sang about his father’s illness and the illnesses of addiction and loneliness, all the things he’d been experiencing in his life.

Vince started recognizing that what he had perceived as missed opportunities — his musical aspirations, his career with Hot Topic — had allowed him to have something much more important in his life: a meaningful relationship with his father. They became best friends.

“I started to wake the hell up and made a choice to be happy, not miserable. Everything started to slowly fall into place,” he said.

One night Vince and Amy were in the kitchen playing gin rummy, a favorite pastime of theirs. The stakes were high: The loser had to wash the dishes or perform some other housekeeping task. Unable to afford an engagement ring, but knowing he wanted to spend the rest of his life with her, Vince got down on one knee and slipped a paper straw wrapper around Amy’s finger.

“I didn’t care that we didn’t have the money,” Amy said. “I knew I loved him, too.”

Shortly after that, Vince got the idea for the Alzheimer’s Music Festival, a way to combine his two primary interests, rock ‘n’ roll and Alzheimer’s disease, and to raise money to help family caregivers. It also gave Vince something to focus on for the future.

With the help of some friends and in partnership with the Caring Together in Hope nonprofit and the Laona M. Kitchen Foundation, Vince secured performance space at 120 Tavern & Music Hall in Marietta and booked some local acts, including singer/songwriters Alex Guthrie, Andrew Katter and Bo Dunn. And Vince, performing as Zangaro, hosted his first Alzheimer’s Music Festival in 2013. It was a huge success.

Vince says he owes it all to Amy.

“She saw what was happening and she stayed. She sacrificed a lot.”

A month later, Vince and Amy got married and moved with Albert to Canton.

The Alzheimer’s Music Festival has since become an annual event, so far raising more than $80,000 and helping at least 50 families care for loved ones. The next one is Sept. 16 at Madlife Stage & Studios in Woodstock.

6

A daily schedule

Today the Zangaro’s family life centers around a daily routine.

The alarm goes off at 5 a.m. and Amy leaves for work at a nearby private preschool.

Vince walks Jupiter, the couple’s 2-year-old pit bull/whippet mix. Then, he wakes Albert, removes his diaper, and together they enter the warm shower.

Albert is no longer able to walk unassisted, so Vince uses his frame to support his father’s 150-pound body as they enter the stall. Vince uses the opportunity to stretch his dad’s muscles. Together they sway their arms. They hum. Their feet shuffle in a kind of dance. Father and son, in tandem, move to their own private rhythm. Chappie, their pet cockatiel, hops alongside Albert, bouncing as they exercise. When Vince and Albert are done, Chappie tags along to the kitchen, hesitating when Albert stumbles a bit.

Breakfast is a bowl of oatmeal. By then, three hours of the day are already gone. The routine helps keeps Albert calm and Vince organized.

After an early lunch, Vince makes phone calls on behalf of the festival and talks to other caretakers who feel exasperated and lonely. He reminds them in social media posts that they’re not alone, and he answers when they call.

Albert’s afternoons are filled with puzzle games; he plays with the pieces rather than fitting them together. He colors in coloring books and builds block towers. Some days Vince feels more like the parent of a preschooler than his father’s son.

They can only go outside if the temperature is just right because Albert’s body doesn’t properly regulate heat, and he has severe allergies, too.

He has a wheelchair now, which has given him more mobility, but their neighborhood is too hilly to walk around, so they sit on the porch, instead.

Amy returns from work about 4:30 p.m. and the family eats dinner together. Everyone is usually in bed by 7 p.m.

Occasionally Albert calls Vince “Dad.” Vince takes comfort in the knowledge that his care has enhanced the length and quality of his father’s life.

Vince organizes his father’s medication for the week.

7

Power of knowledge

Alzheimer’s has been Vince’s whole life for 13 years now. He knows how it ends. Eventually his father will forget how to chew. His muscles will begin to fail. His lungs will fill up with fluid. Pneumonia is a common cause of death for people with Alzheimer’s disease.

His whole identity is tied to caring for Albert, and he’s terrified to think about what he will do when his father is gone. He’s thankful he has the music festival; he’s currently in the process of establishing its nonprofit status.

Vince understands what’s ahead, but he tries not to think about it. Not just for his father, but for himself. The disease, for which there is no cure, can be genetic and it is common among the men in Vince’s family.

Albert has Vince and Amy to care for him, with a little bit of income from Social Security and a small pension from his military service. He has health insurance through Blue Cross Blue Shield and Medicare.

Vince and his wife don’t have children and they don’t have health insurance. Vince doesn’t have a pension to fall back on, and he hasn’t been contributing to Social Security for 13 years now, so he doesn’t expect much there when he retires.

There is a test Vince can take to determine if he has the gene linked to early-onset Alzheimer’s. It costs $1,500. He doesn’t have the money, but he plans to get it somehow. He wants to take that test, although he feels certain he knows the outcome.

“I know I’m going to get it.”

Having the knowledge would make him a better advocate, he says. His young face would show others that Alzheimer’s isn’t “an old person disease.”

Knowing that one day he might end up like his father, Vince strives to live in the moment. It helps him feel in control. So he multi-tasks and is always doing five things at once. Because pausing too long lets the reality sink in that the lost look in Albert Zangaro’s eyes is a mirror and Vince isn’t ready to see his reflection there. The family lives in the present because memories can’t be counted on.

Behind the story

Vince and Albert in 2013. Photo by Jason Getz


ABOUT THE STORY

I met Vince Zangaro when he was raising funds for the first Alzheimer’s Music Festival in 2013. The magazine I founded sponsored the festival with a full-page ad. I admired what he was doing as an entrepreneur and a caregiver, and we’ve been friends on Facebook ever since. I’ve wanted to tell Vince’s story for years because after a rough start, he finally seemed at peace with his role and truly happy. His story is an inspiring one, especially for the 15.7 million people in the U.S. caring for family members with Alzheimer’s.

Ellen Eldridge
Contributing writer
personaljourneys@ajc.com


ABOUT THE REPORTER
Ellen Eldridge is a breaking news reporter for The Atlanta Journal-Constitution. Before joining the AJC she was a freelance and community news reporter and the founder of Target Audience magazine. She is married and has two children.

ABOUT THE PHOTOGRAPHER
Bita Honarvar is an Atlanta-based photographer whose work has appeared in numerous national publications including The New York Times, The Guardian US, The Chicago Tribune and The Atlanta Journal-Constitution, where she was a staff photojournalist and photo editor for 16 years. Her work has taken her around the United States and abroad, including stints in Afghanistan, Iraq and Iran.

Vince and Albert in 2013, when Albert was still able to walk without assistance. Photo by Jason Getz