A father and son follow their Alzheimer's journey through the camera's lens

By Chet Williamson | Photographs by Stephen DiRado

He is never without a camera when visiting his father. This day is no different. Parking his car at the far end of the lot at the Marlboro Hills Healthcare Center, photographer Stephen DiRado readies himself for another encounter with a father who hasn't called him by name in years.

His father, Gene "Gino" DiRado, has Alzheimer's.

It is 10 a.m. on a Saturday morning. DiRado opens the hatchback of his car and slings a 40-pound knapsack full of equipment on his back and his vintage 8x10 view camera with attached tripod over his right shoulder.

It's late March, when the last vestiges of winter whisk by in the form of a passing snow squall. There's a chill in the air. DiRado says the fresh air comforts him as he walks toward the main entrance. Riding the elevator gives him additional time to prepare for encountering the unexpected.

Gino DiRado was diagnosed with Alzheimer's Disease in 1998. That same year, he had his first stroke. In 2004, after his third stroke and a major decline in his cognitive skills, his care became too much for his family and he was admitted to the Marlboro facility.

"There are good days and bad," DiRado says as the elevator door opens. "It's taken me a long time to come to terms with this. I'm finally at a point of acceptance."

Today is a good day. Gino DiRado is awake and alert, sitting in the middle of a large day room filled with a community of people in various stages of aging and memory loss. 

'As the disease advanced it became difficult to get dad to recognize me. It was the camera that caught his attention, always turning toward it to pose. It became the last connection between the two of us. But eventually the camera, like everything else around him, became invisible.' — Stephen DiRado, photographer

DiRado greets his father lovingly. He caresses his face with the back of his hand and says, "Gino, look at you. You are wide awake. Not like last time I was here when you slept for four hours."

The elder DiRado is confined to a wheelchair. His muscles have atrophied to the point where he can only walk a few feet before falling — not to mention getting lost.

DiRado says hello to a handful of residents he's gotten to know. Many he calls by name. He points out Lucy, his father's daytime caregiver, who says, "He's in a good mood today."

Wheeling his dad to a smaller TV room, DiRado says — as he has for a number of years now — "Dad, what kind of photos will we make today?"

About Stephen DiRado Stephen DiRado is a Worcester photographer who has been exhibiting since 1983. His award-winning portrait and documentary photographs are shown in museums and galleries around the world. He is also currently the photography program director/studio lecturer in photography in the Clark University Visual & Performing Arts Department.

Startling statistics

Gino DiRado is one of more than 120,000 people in Massachusetts living with the disease. According to the Alzheimer's Association, 5.2 million Americans are in its grip, making it the seventh-leading cause of death in this country.

In March, the organization released some startling statistics. In its 2008 Alzheimer's Disease Facts and Figures report, the Association indicated that the disease will significantly impact the next generation of elderly, stating that as many as 10 million baby boomers — one in eight — could be struck with the disease.

Just what is Alzheimer's Disease?

It's a brain disorder named for the German physician Alois Alzheimer, who first described it in 1906. More than 100 years later, there is still no cure.

Researchers know that Alzheimer's Disease is progressive and destroys brain cells, causing problems with memory, thinking and behavior. It is the most common form of dementia, a general term for the loss of memory.

Alzheimer's gets worse over time and is fatal. Symptoms vary. As we grow older, change in memory is normal, but signs of Alzheimer's are more than just lapses in memory. People with Alzheimer's experience difficulties communicating, learning, thinking and reasoning. And, there is no clear distinction between normal changes and warning signs.

First signs

DiRado tells a funny story about how his father first admitted to having it. In 1998, after being hospitalized with his first stroke, DiRado's brother, Chris, walked into the room and said, "Hey, I've got this magazine and there's an article about Alzheimer's."

Picking up the story, the photographer says, "It talked about these cognitive exercises and so forth. My father looks at his sons and says, ‘Hey, I think I have that. I wonder how long it's going to take before I get over it?'"

Now, ten years later, Gino DiRado sits in the TV room of the nursing facility docile and detached. He is the living embodiment of everything the experts define as Alzheimer's.

Setting up his camera to photograph whatever is going on in the moment, DiRado talks about his father before the disease. "My dad was a graphic artist for the state," he says. "At night when he came home he would do his own art. He was a painter."

The short bio on Gino DiRado's life reads like this: He was born Gene Angelo DiRado on Aug. 5, 1927 in Marlboro. He studied art at the Vesper George Art School in Boston. In 1956 he married Rose Ferranto, a Worcester girl, who grew up around Shrewsbury Street.

A year later, DiRado designed and built his own house — right around the corner from where he grew up.

"It's a classic ‘50s home," the younger DiRado says. "Complete with a bomb shelter in the basement."

The couple had three children. At 50, Stephen is the oldest, his brother Chris is the middle child and the youngest is their sister Gina.

"My mom asks if we were dysfunctional," DiRado says. "We had our fights, but we were pretty normal."

In the living room of the family home is a photograph of Gino DiRado at his retirement party, shaking hands with former Gov. Michael Dukakis. For 34 years, DiRado was an employee of the state, working as a supervisor of graphic arts.

A little off

Gino DiRado — his wife Rose in the background.

The year is 1989. Gino DiRado is 62. His son says his father began showing signs of depression long before retirement.

"My father in his 50s seemed a little off," he recalls. "There was something not quite balanced. It would be little things. He wasn't doing the family visits.

"He was no longer coming home after work to go into his studio to work on his own personal art. He would sit in front of the TV. In the beginning, it was his favorite show. A few years later it was just the buzz of the TV squawking away in the room."

In the introduction to a self-made book that DiRado made about his father titled, Dad with Alzheimer's, the photographer wrote: "The more I became aware that there was something wrong with my father, the more frequently I photographed him. We never really talked about it. Maybe because there never was a time that dad saw me without my camera incessantly photographing family and friends.

"As the disease advanced it became difficult to get dad to recognize me. It was the camera that caught his attention, always turning toward it to pose. It became the last connection between the two of us. But eventually the camera, like everything else around him, became invisible."

Comprehending the intolerable

In the nursing facility, DiRado sits his father in front of a large window. Light streams in on the man's face. He is wearing a gray sweatshirt, flannel pajama pants and a pair of black socks that has a name tag stuck to the bottom.

DiRado decides to move his father to one side of the window and the hulking box camera to the other. He says he likes to work with a lot of equipment because it helps him think. Ever the teacher, DiRado also narrates the shot. With his head under a black drape, he says, "I see his image upside down and reversed. Right now I'm seeing my father as a triangular shape. I'm just looking at the design."

Looking directly into his father's face, DiRado notices his father combing his fingers through his long hair and says, "‘Gino, no scratching!' If he starts with that we'll never get him to stop."

When he does, DiRado slips back underneath the drape and waits for the shot. Strong reflected light pours in on the elder DiRado, defining the lifelines on his forehead. A sudden flash catches him by surprise and he blurts out "Ooh," and smiles. DiRado says, "That was great. Let's try that again."

The next shot doesn't go as well. The man is clearly irritated by the intrusion. He mumbles out something that resembles "Geez!" DiRado is soothing: "I know dad. I'm sorry. We suffer for art. Don't we?"

On any given shoot for Dad with Alzheimer's, DiRado will take maybe a half-dozen photographs. He carries eight exposures with him. In his studio he has boxes of negatives in the series, literally thousands of pictures of his dad.

Impact on the family

From left: Chris, Gino and Stephen DiRado

Returning to DiRado's essay in Dad with Alzheimer's, the photographer writes about how the disease began to affect the family.

"It wasn't until dad had no explanation for the hours it took him to drive the 20 minutes to my sister's house or could no longer make change from a $20 bill, that we entered a state of crisis."

After the stroke in 1998, DiRado's wife, Rose became his full-time caretaker. "My brother, sister and I began to work rotating shifts, assisting mom in ‘Daddy Sitting,' we called it. Dad's world was collapsing; he was in a constant state of paranoia — peeking around corners or a crack in a door. He lived in his pajamas and primarily hid in his bedroom."

Asked when it was that the family realized they could no longer care for him, DiRado says, "When he would eat the flowers that were imprinted on the ceramic plates. My mother's blood pressure was going through the roof. I'm very proud of her. She really stepped up to the plate. It's a 25-hour day, because he is very much like a child."

The Alzheimer's Association believes it is critical for people diagnosed with dementia and their families to receive information, care and support as early as possible.

Dr. Paul Reis is the vice president of resident and family support for the Association. He says when families come to see him, the first thing that they talk about is loss.

"That's all they see in the early stages," Dr. Reis says. "My goal is to get them to a point where they would no longer focus on what is lost, but rather what is still there. And, almost more important, to build an emotional connection with the person that is still there and to value that exchange.

"I see families who may have failed in coping. They are never able to get beyond the sadness and loss. They never learn how to be in the moment with the person — derive some value in just being with the person. The families that don't cope, they only see what the person has lost. They never see what's still there."

Window to a soul

Dr. Reis says that even in the
later stages of the disease, there is still something there.

"It's based on emotion. The last part of the brain to actually be impaired by the disease is a part of the brain that relates to perceiving emotion in other people. You can connect with the person emotionally.

"I think that's an important point for families to understand. If you look at all the cascading efforts in the brain that go awry, the one remaining capacity that stays in place is the person's ability to perceive, hold and to respond to emotion. That is the route into the ‘Alzheimic' brain that families need to learn how to access."

DiRado says everything about his photographic work is an emotional response.

Rose and Gino DiRado

"That's the great thing about any art," he says. "My camera is truly an extension of my emotions. The process of photographing is how I get through everything."

The photographer says that taking pictures has given him a way to focus on his dad.

"The photo is still. I can't run away from it," he says. "I can look at the photo and see the body language and really look at the expressions on the face and go, ‘Something really is off.'

"Long before he was diagnosed with Alzheimer's, the photos were telling me what was going on: He's isolating himself. He is in a darkened room. There is a vacant-ness in his face. The awkwardness of his body language."

Personnel at the nursing facility have gotten use to DiRado coming in every week with this big box and cape to photograph his dad. In the beginning it was a little awkward for all involved. DiRado talks about how he couldn't accept his dad in what he perceived as an institutionalized setting. Now he admits, "It's the right place for him."

Joseph Ashema is a nurse's aide who works the night shift at the home. He says, "I asked myself ‘why?' I thought at first he was trying to keep some kind of souvenir of his father. It takes a lot of courage. Imagine taking photographs of your loved ones, someone you call daddy and now he doesn't recognize you.

"I've seen the book. I understand now what he is doing. I think he wants people to understand the world that Alzheimer's people live."

Dr. Reis says he hasn't seen DiRado's Dad with Alzheimer's, but offers, "If done well, it is a way of documenting what is still there. That would have a real positive benefit as a living history for the family.

"To the extent that these pictures are able to capture that rather than capture the loss, I would see that as therapeutic both for the individual with the disease as well as the family members. Ten years from now, after his father has died, Stephen can still hold on to that as a positive thing."

When asked if he ever considers himself as a candidate for Alzheimer's — or if he ever watches himself for signs and symptoms — without hesitation DiRado says, "Every waking moment. I wonder if I am as aware of things as I was 10 years ago. But - hello — how do I know that my perception has modified my history? You don't ultimately know.

"One thing that I have learned by observing my dad — and it's the oldest cliché in the book — take each day, one at a time. Enjoy the simplest things. It's the truest thing." o