Blog Posts

More Is Possible

This blog is one of a series that Alix Kates Shulman wrote for Psychology Today about her life after a shattering accident left her husband with a brain injury and dementia. She describes a roller coaster ride many caregivers will recognize, but these blogs are also a tender love story—the gist of it is captured in the title of her deeply moving memoir, To Love What Is (2008). 

Published by Psychology Today on February 23, 2013

My husband was a sculptor until 2004, when a traumatic brain injury ended his working life. Before that, he’d spend hours each week looking at art; he called New York’s Metropolitan Museum his “temple.”

Hoping to normalize his post-accident experience despite his dementia, I took him to museums. But the crowded galleries fed the agitation typical of his condition, and he quickly demanded that we leave. Another activity lost.

Then last year I learned about the free monthly programs offered to people with dementia by museums in the city, and I thought, why not give it a try? I signed us up at the Museum of Modern Art (MoMA), where … each month, [on] a day the museum is closed to the public, groups of elderly people in wheelchairs (provided by the museum), together with their caregivers, all adorned with name tags, gather to examine and discuss modern art.  

We settle down before a painting or sculpture—caregivers in folding chairs beside the wheelchairs—and take a long, leisurely look, as a skillful docent asks open-ended questions about what we see and feel. Called on by name by the docent, each person with dementia speaks, as do many of the caregivers, until we have a serious conversation going, with never a patronizing word from staff.

This is my new favorite way to see art.  Since we usually view from three to six artworks in a 90-minute session, it’s an unrushed, illuminating, exhilarating experience, one of the few caregiving perks. What a privilege to stroll through empty galleries, past iconic works normally obscured by streaming crowds, and to see new shows before they open! The hush is indeed temple-like.

Scott loves it. Often, as we wheel up to a new picture, he shouts, “Wonderful! Wonderful! Wonderful!” And on the bus going home he is still full of enthusiasm and laughter, striking up conversations with strangers around him. Though by now his speech is considerably compromised, and he can hardly remember anything, when I ask if he remembers going to MoMA and if he’d like to go again, he gives an enthusiastic “Yes!” 

He likes it so much that this year I have also signed us up for the Rubin Museum of … Art, which is a five-minute walk from our apartment. Here, while our dementia group is gathering, we begin with a half-hour social in the museum café, where we sip herbal tea to the strains of piped sitar music. Asian art, so different from Western, is unfamiliar to Scott, yet once we reach the galleries, he sits in rapt attention as the staff explains the work and something of the culture it comes from. As at MoMA, a conversation ensues.  

I thought I knew my husband’s capacities (and incapacities) pretty well after so many years. But the museum programs have shown me that more is possible. If transportation permits, come spring perhaps I'll sign us up for the program at the Met.