What It’s Like to Live in a Dementia Care Unit
An entrepreneur wanted to know, so she checked herself in
The first thing I noticed was the lack of hot water. I’d just gotten in from the airport and wanted to shed my travel dirt. The water wasn’t cold, but I like scalding showers — the kind that make you feel reborn — and the highest heat setting was only producing a lukewarm stream.
And then I realized: This is to protect me from myself. Well, not me, but the usual residents in this community.
I spent a recent week living in a locked dementia unit in Brookdale Senior Living’s Fort Collins (Colorado) community as part of Brookdale’s Entrepreneur-in-Residence program. My startup company, MemoryWell, is an older-adult storytelling platform. We aim to replace clunky questionnaires that families hate to fill out when they put loved ones in assisted living with professionally told stories.
Stepping into Her Father’s Shoes
Brookdale’s objective is to give entrepreneurs the opportunity to test drive their products in a care setting, getting feedback from residents, families and staff.
But for me, the experience was also a personal one: My father spent the last four years of his life living in locked dementia units. I had visited him plenty, but always wanted to know what his experience had felt like. This was my chance.
As I hurried through my lukewarm shower, I couldn’t help wondering if my father had had similar thoughts. He, too, had loved hot showers. Had he made the connection why his showers were tepid?
Towards the end of his life, he’d refused to shower. I knew this was because he needed help showering and hated having people touch him while naked. But I also wondered if he also had stopped enjoying showers and thus didn’t see the point.
Living in a Dementia Unit: Fewer Choices, Fewer Risks
I was surprised to find that living in a dementia unit wasn’t so different from living, well, anywhere else, except that there’s a larger safety net. The food isn’t too spicy or too challenging to chew. And as to not confuse people, there’s no choice — allergies and preferences are taken into account.
The hallways have subtle rails to grasp, should you lose your balance, and ledges outside doors to place personal items, helping you identify a particular room as your own.
The bathrooms all have walk-in showers and railings to prevent slipping. The lights are set to motion sensors so you’re never moving in the dark. And the ends of corridors are painted a different color to help people recognize that this is the end, time to turn around.
I was staying in the Crossings division of Brookdale, whose 1,100 homes makes it the largest provider of senior care in America. The Fort Collins community also has an unlocked assisted living facility and a Clare Bridge community attached. Crossings are for folks with mild cognitive impairment; Clare Bridges are for those with more advanced Alzheimer’s and related dementias.
One of the common traits of the diseases is wandering, which is why Crossings and Clare Bridges are locked communities. My father was a wanderer. He walked and walked and walked. By the last two years of his life, he hardly slept. He’d sit down and nap occasionally, but he was up most of the night wandering the halls.
I’d wondered what his nightlife had been like. Most people in the Crossings slept normally, so I went over one night to Clare Bridge. There I found three staffers: two aides folding laundry and a nurse assistant updating charts. The television was playing Mad Money, a 2008 Diane Keaton caper movie.
Like in the Crossings, the television was turned up much louder than normally needed. Most residents have some hearing issues, so the TVs and music are always cranked up — no matter the hour. Sometimes, night staff would hear a loud noise and would rush to a resident’s room, worried the person had fallen only to find he or she couldn’t sleep and had turned on the TV with the volume set very high.
Looking Beneath the Behavior
It was nearly midnight and the night staff was doing their daily errands: folding laundry before the TV with a Colorado fire crackling below and setting the breakfast table.
They’d just put to bed one of their two usual night wanderers and expected he’d be back up soon. They often walked with him, doing their midnight and 4 a.m. diaper checks. A World War II veteran, he still suffered from post-traumatic stress, they suspected. He slept with the lights on and when they walked with him, he often wanted to see the veterans' wall honoring all those who’d served in the community. During the day, the staff found that the only way to calm him was to have him paint ceramic garden gnomes. The art studio had a little colony of them, perfectly adorned in an array of colors.
At night, I locked my door. I’d found that during the day, I had many unexpected visitors. Wanderers would open my door and peer into my room curiously. Part of wandering is the exploration, looking at new things. All too often, residents’ knickknacks disappeared, only to be found in others’ rooms.
The ‘Search for the Familiar’
Part of what drives wanderers, as with my dad, is the search for the familiar. Dad spent his last years looking to go “home,” but after a year of questioning, I realized that the home he sought no longer existed. It was a little house in dusty Inverell, Australia, where he’d spent his early childhood. His parents were long dead.
I greeted my visitors warmly and asked about their homes. Most spoke of their family houses. One man talked about a fishing cabin.
Fort Collins is mostly a farming community, so there’s a farm room in the Clare Bridge, though all the potentially dangerous farming tools are mounted on the walls high out of reach. There are also chickens living in the courtyard. The residents can feed them and clearly have: The chickens are all fat.
The residents can also have their own pets and many have dogs and cats. One woman likes to croon When Irish Eyes Are Smiling to her little terrier, Paddy.
Music and Memories
Indeed, the community is surprisingly musical. In addition to the televisions, there’s a Music & Memory room, where each resident has an iPod stocked with his or her favorite tunes. And there are often common rooms playing golden oldies where residents will stop and sway and hum.
And they play music themselves. At most Crossings meals, one or two women — two-thirds of those living with the diseases are women — will start tapping their feet or their cutlery to a beat. Soon, the whole room will be tapping along, all humming some unknown song.
Life Goes On
And that was perhaps my biggest surprise living in a dementia community: It’s not depressing. Yes, these people are losing their memories. But they also support each other and still have meaningful relationships.
During book club one day, they were reading Chicken Soup for the Golden Soul. One story talked about how wrinkles are as beautiful as freckles — perhaps more so, since they come with a lifetime of stories and experience. This led one woman to tell her personal story; every Saturday as a child, she went to her grandmother’s to brush her long silver hair.
“That’s a lovely memory,” one of her friends told her. “A lot of the memories that we share here aren’t big memories. They’re small, and they take your heart.”
Like these residents, my father’s life didn’t end with Alzheimer’s. It changed, yes. It was perhaps more lukewarm, but it was no less meaningful.