How my dad's dementia changed my idea of death (and life)

In early 2014, dad started falling fast into dementia. I had no comprehension of how to deal with the grief. So I did what most people do, I got outta bed every day and went to work. Dashboard, my company, was in the middle of producing a mass art exhibition called COSMS. We’d commissioned 12 artists from Atlanta, New York and New Orleans to make large-scale installations inspired by light. COSMS was presented on the cavernous fourth floor of an Atlanta highrise. Some of the works were abstract glowing other-worlds, and some tapped into the human experience and memory. Artist Dustin Chambers actually created an immersive maze that simulated effects of Alzheimer’s. It paid homage to his grandmother who suffered from the disease and resonated deeply with audiences. For months during the exhibition’s run, I would escape into this and the other 11 artworks — they healed me beyond measure. COSMS was also the last Dashboard show my dad was able to visit.

Artist Tori Tinsley makes paintings about the loss of her mother to frontotemporal lobe dementia (FTD). The series Hugs is gorgeous, grotesque, poignant, and full of humility.

I make neon sculpture and installations. I like using my hands to make electrical connections between discarded neon shapes in hopes that when I flip a switch something pretty will happen. Sometimes nothing happens. A mis-wire. A lot of this work has become a literal representation of dad’s brain for me.

Terrible, Thanks for Asking has helped me come to terms with terminal illness, caregiving, and most recently, the death of my dad. Nora McInerney’s podcast is a vulnerable, funny exploration of grief and loss. This is my favorite episode.

Alive Inside is a tearjerker, y’all, but honestly, music always proved to be the best medicine for dad. This film helped me understand why.

I was so afraid of dad losing his memories. Who would he be without them? But then a brilliant, very dear friend gave me this book and I learned strategies to shift my thinking.

I have thought a lot about assisted suicide. These things answered some of my questions and spurred new ones:
"The Death Treatment: When should people with a non-terminal illness be helped to die?"
Rachel Aviv, The New Yorker, 2015.
"My Right to Die: Assisted suicide, my family, and me."
Kevin Drum, Mother Jones, 2017.
"Episode #11: The Ending Matters."
Nora McInerney, "Terrible, Thanks for Asking," 2017

Facilities that specialize in Alzheimer's or other forms of dementia are rare, and, due to overwhelming need, they’re hard to get your loved one into (especially if they smoke two packs of menthol cigarettes a day). The team at Fountainview not only helped my family by caring for — and loving — our wily dad for three years, they also helped us navigate the very confusing elder care system. If you are looking for help finding a place for your loved one, these folks may be able to point you to a facility in your area.

The good people at Penn FTD Center are doing serious work. Everything you need to know about FTD from language to caregiving to science can be found on their website. They update it regularly to reflect the rapidly changing research around FTD.