A lot of my work is focused on tracking and reporting about the exciting efforts surrounding the Death with Dignity movement, and a big part of improving end-of-life options is breaking down the taboo of talking about death in the first place. This leads to reading and sharing a lot of online media which pertains to death and dying (it’s really a lot more cheery than it sounds).
Periodically, I come across a piece which is simply stunning, and Days with My Father is one such piece of art. This project started as an online journal by photographer Phillip Toledano and was published as a book in 2010. The diary follows the journey of Toledano and his widowed father who had no short-term memory in his final years.
The photographs and accompanying text I think would touch even a hardened heart, but the story had particular significance for me. In the six years before my husband and I served in the Peace Corps, I had a regular date to visit my grandma every Wednesday. We had always been close, but like many 20-30 year-olds, life got in the way of living and I just didn’t set aside time to see her on a consistent basis. That was until her unfortunate mental decline into dementia caused by a series of TIAs (mini-strokes) created an opportunity for which I’ll always be thankful.
She lived independently in a local retirement community apartment. Everything she needed—laundry facilities, cafeteria, beauty parlor—were conveniently in the same building, just on different floors. With a little help from the facility’s caregivers she was able to stay in her apartment. They made sure she got to meals and her regular appointments at the salon. The periodic tasks, like doing laundry, presented a challenge, and that’s where I was able to step in and help.
Once a week, I’d drop Brett off to coach soccer, head to Grandma’s to chat or read aloud, and gather her laundry before heading back to pick up Brett and head home. Over the years, the routine shifted as her mental capacity changed—when she moved into an apartment with more assisted care, they took over doing her laundry; when she was less able to follow the storylines of books, we told our own stories to each other; and as it became more difficult for her to know what time period she was in, I followed her into her reality and would simply be with her. One thing remained the same throughout: I saw Grandma every Wednesday after work.
The application process for Peace Corps is really quite long—especially for a married couple serving together—so I knew about a year in advance, the time was coming when our weekly visits would stop, and I’d be gone for two years. I also knew she was unlikely to be alive when I returned. I never told her that day was coming. Her sense of time was so altered, it just wouldn’t have made sense.
Then the call came from her caregiver. Grandma had started politely declining meals. She wasn’t the slightest bit distressed; she didn’t feel hungry or thirsty.
Years earlier, Grandma stated in writing and through conversations she absolutely didn’t want heroic measures to keep her alive if it came to it. She spoke about these wishes with my mom, her son and her daughter. Her caregiver explained the different options to us. She could bring in hospice to keep her comfortable or call the paramedics to transfer her to a care facility where they could make sure she’d get adequate food and fluids to stay alive. Thankfully, all of the previous conversations and documentation made the decision and agreement about that decision easy. We all knew she wanted to be allowed to die rather than being hooked up to machines.
Hospice set about keeping her comfortable, and two weeks before she died, I dropped by for my weekly visit. Grandma was frailer than ever; even so, beamed as I walked through the door. Rather than sitting next to her in her favorite chair, I held her hand as she lay in bed. In an absolute moment of clarity, she took my hand, looked at me directly in the eyes, and said, “Thank you for everything all these years.”
Two weeks later, I joined the rest of my family for one last Wednesday visit. Grandma was in a deep sleep, and her breathing had grown ragged. My cousin softly played his guitar and sang all the songs she loved, and each of us took our turn holding her hand or touching her face. She died peacefully later that night with her son holding her hand and telling her it was ok to go.
I’m so thankful I had the opportunity to be with Grandma in her final years, listen to her stories, and be present for so many moments with her. The ordinary, everyday moments are what stay with me, and these small pieces of time are what Toledano captured so poignantly in his father’s photo essay. Together, they create a moving collection of memories.
View full post on Death with Dignity National Center
No related posts.