A Father, a Son, a Disease, and a Camera

Cheney Orr was 21 when his father received a diagnosis of early-onset’s disease in 2011. His father, David, was just 62, and the son felt he had never quite known him as an adult. The camera offered a way to bridge that gap. It was an excuse to visit regularly and a portal through which to understand the disease.

“There was also a level of guilt just to spend more time with him and get him out of his isolating hole of an apartment,” the younger Mr. Orr, who is now 27, said.

Alzheimer’s presented a story with characters and plot twists. There were the attendants who watched David Orr around the clock, and a padlock that went up on the door after Mr. Orr wandered from the apartment a few times, a phenomenon that is given the discordant name of elopement.

A self portrait taken with my dad, David, in his apartment in November 2016. Between my being the main photographer in the family and the fact that we often took turns visiting David one on one, photos of us together in these years are rare. ©Cheney Orr
Swimming in the Atlantic Ocean off Rockaway Beach, Queens. Summer 2016. ©Cheney Orr
David gets dressed after a morning of swimming laps at the St. John’s Recreation Center in Crown Heights, Brooklyn. A competitive swimmer in elementary and high school, he was fast in the water and flawlessly performed every stroke. Even as the disease progressed and tasks like tying his shoes or zipping his coat became difficult, in the water he would leave swimmers half his age in his wake. ©Cheney Orr
Daylon and David’s longtime friend, Brian, support David on a walk down Eastern Parkway, while his caretaker, Eddie, trails close behind. My dad went back home from the hospital in the last week of March 2017. Some days, such as this one, gave us hope that David could be rehabilitated and regain some of the independence he’d lost since the hospital stay. ©Cheney Orr
Sitting next to my girlfriend, Marine, David rides the subway home from a trip to the American Museum of Natural History in January 2015. For at least the prior 12 months, David had not gone anywhere without accompaniment. ©Cheney Orr
Beginning in the fall of 2016, my dad started to need to be supervised while showering, and required reminders to use soap and to clean his whole body. Usually either myself or my brother would help him with this a few times each week. ©Cheney Orr
David struggled to keep up with the conversation during a dinner with family and friends in December 2016. My dad had always been extremely social and friendly, taking great pleasure in chatting one on one whether at the grocery store, in the locker room, or with the UPS delivery man. But group dinner table conversations were difficult, even in the earlier stages of the disease, and became especially stressful as it progressed. ©Cheney Orr
In the hospital, the extreme disorientation and panic continued. Additionally, his body began to quickly deteriorate. It seemed almost overnight, he could no longer stand, walk or eat without help. ©Cheney Orr
Musah, a caretaker, props up David’s head to shave his face. In the last week of April, this was my father’s final shave and the last time he sat in a chair. Shortly after this photo was taken, the visiting nurse confirmed that he was in the very final stages of the disease. ©Cheney Orr
David and Daylon in February 2017 in the locked level of a sub-acute rehab center in Bed-Stuy, Brooklyn, where the hospital sent him, despite our family’s protests, after three weeks in the psych ward. David spent only one night here before having a violent panic attack early the next morning, resulting in his return to the hospital. ©Cheney Orr
During his final week, we stayed with David 24 hours a day and there were many moments we thought were his last. His chest would move rapidly and his breathing would rattle. Yet as the whole family moved close, his breathing would regulate. He remained periodically responsive and for good or for bad, our presence periodically seemed to keep him alive. ©Cheney Orr
“David, we are right here with you,” my mom repeated to him over and over during that week. Even in his tremendously weakened physical condition, his intense mental anguish and fear was apparent. ©Cheney Orr


Read the full article at: lens.blogs.nytimes.com