I realize this story is a bit out of order relative to my previous posts about the unreal cost of memory care here. Still, I wanted to revisit the process of selecting a home for Robert. Thanks for reading these stories as they come.
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My sister, Elizabeth, and I readied ourselves to tour the two memory care homes she’d made appointments with. Elizabeth had helped find a senior living facility for our father. The paramount questions to ask were front of mind for her. She could walk into a facility and quickly grade the home on a five-point scale, seeing qualities that were just starting to penetrate my decision-making process.
Do I look alright?
I labored over what to wear. Seriously? Yes, I did. I didn’t want to appear so formal that I seemed desperate and I didn’t want to present myself so informally that I gave the impression that I lacked the funds to pay for Robert’s care. I settled on business casual. Black slacks and a blue, button-up tunic.
Have we got a deal for you! Today only!
Memory care facilities adhere to a scarcity sales model, “We have only one room left! It’s yours if you sign up by tomorrow. We can’t hold it longer than that!” I’d absorbed the pitch and already feared I’d lose out. In truth, available spots come and go as families alternately hit the wall with home care (“I can’t do this anymore! Help!”) or their loved one dies, vacating a coveted room.
The only thing “going for us” was the pandemic. Congregate care settings had been hard hit by COVID-19, and many were struggling to fill vacant rooms. Unfortunately, some residents had succumbed to the virus, and some rooms were vacant because families didn’t want to move their loved ones during a pandemic.
Natalie, Daylight Assisted Living and Memory Care’s sales rep was a tiny, bubbly woman of about my age. She glided in wearing a tailored, but feminine, warm brown pants suit and understated gold jewelry. She greeted us with bright brown eyes and an earnest smile. Natalie believed in Daylight’s mission (“to advocate for the best quality of life for all residents”) and was enthusiastic about what the facility had to offer. She wanted to learn more about Robert.
What did Robert need now?
I’d spent a great deal of time reflecting on Robert, the man. Robert had many personality traits that were embedded in his being that his dementia had not yet diminished. But still, I had to look at him anew with objective eyes. Who was this man today, at this point in his life?
Robert is a very social person. He loves to interact with a variety of people and he likes to tell stories and jokes that make people laugh. He is generous with his time and attention. People feel better after a few minutes with him. He can make your day.
Robert also loves the sunshine. He can’t be stuck in a dreary space without windows or light. He needs to feel the daylight on his face in a setting of natural beauty. Robert needs to be able to meditate on the wonder of a rhododendron in bloom or the tiny leaf buds of a Japanese maple.
So how did this understanding of Robert translate into a proper care setting?
Winnowing the options
In the wild, Robert might interact with ten people on any given day so he couldn’t be relegated to a dim corner of a six-room board and care where most of the residents were bedbound. He was not on death’s door. His environment required vibrancy. He needed space to stroll the hallways and stumble upon other people with whom he might strike up a conversation. These simple requirements eliminated small, residential homes from contention. Robert needed people. So Elizabeth had made appointments with the two large-ish memory care homes in town.
Robert needed to live close to us. This would enable all of us to visit easily and frequently. I knew this would be important to Robert and it was important to me.
Beyond the “lifestyle” considerations of his placement, there were the practical considerations too. How big were the available rooms? Did the rooms have private baths? How long had the care staff been with the facility? Was there trained nursing staff available 24/7? What type of food was served? What was the visitation schedule for the home? Could we take Robert outside any time we wanted? Would Robert have access to a safe, locked outdoor space from which he could not stray?
What I needed to know
Elizabeth asked the questions while I held back, feeling timid and uncertain. I was struggling with my decision to place Robert in a home. I knew I needed to choose what was healthy for me, but I was uncomfortable with what that meant for him. Elizabeth helped me hone in on the critical aspects of Robert’s care, isolating the guilt and anxiety surrounding my decision from the practical considerations of his placement. This narrow, pragmatic focus, relieved some of the stress I had been feeling. Stewing in the full soup of my emotions wasn’t working for me.
Daylight was on the other side of town. The facility provided graduated care from independent or assisted living through end-stage dementia care. Residents could begin their tenure on the 40-person assisted living floor. As their needs intensified or dementia worsened, they might transition to either wing of memory care with 20 residents in each.
Is this acceptable?
Daylight was bright and inviting. The lobby area opened to a cathedral ceiling, a friendly reception desk, a passthrough bistro that led to a landscaped courtyard outside, and a wrap-around staircase to the assisted living floor.
The memory care wings were behind electronically locked doors. Visitors had to be buzzed in and out. I felt a wave of grief wash over me. I felt myself grimace. Robert was to be locked in. This was how Daylight would keep him safe.
It’s yours if you want it!
Natalie led us through the locked door of the north wing into a hallway that led to the dining area, adjacent living room, and a longer hallway to residents’ rooms.
There was one room available, if I wanted it. The room was spacious, approximately 20’ x 20’ with an alcove kitchenette with a sink and refrigerator, and a private bath. Robert could take all the time he wanted to toilet, to shower, or to shave. He could prepare his breakfast cereal. Wide windows spanned one wall and let in plenty of light.
Daylight offered a variety of activities for dementia patients. Ambulatory residents could join a walking club, and residents in wheelchairs could participate in seated exercise classes. The staff directed art projects and led cookie baking. Local musicians were brought in weekly to play for the residents. A small combo trilled 1940’s classics during our tour.
Daylight Assisted Living and Memory Care checked all of the boxes. I liked it.
One down, one to go
Next, we toured Armstrong Wood Memory Care.
Armstrong was built around a courtyard with a hallway that wrapped around the entire building. The hallway provided an infinity loop that wandering residents could walk to their heart’s content. During our tour, we met “Sally” three times as she walked her prescribed loop. With each greeting, our tour guide exclaimed how nice it was to see her and wished her a good day.
Armstrong residents were housed on both sides of the hallway. Light filtered in from the courtyard or exterior walls. So far so good. But Armstrong offered no private rooms, which was not ideal.
Who are we working for?
The shared rooms might not have been a deal breaker, but a red flag did emerge during our tour. The Executive Director at Armstrong gushed over a new technology program they’d recently implemented for their residents. With a new app, residents were given their own electronic folder to hold the games, photos, and the electronic detritus of modern life. All they had to do was direct an electronic pointer to their folder on a large monitor mounted in one of the common living areas after which they could use the pointer to easily access the activities they wished to pursue.
This might have appealed to a 40-something touring the home, but it would mean nothing to the average memory care resident. Robert could not dress himself. He most certainly would not remember how to use an app.
I might have been swayed by the technology swoon had I not read Atul Gawande’s book Being Mortal: Medicine and What Matters in the End. Armstrong was implementing programs that appealed to the families of their residents, not the residents themselves. Implementing a program for residents, that didn’t directly benefit them was either a cynical calculation or just plain naive. I didn’t care which. Armstrong was no longer in contention.
Making the decision
Both homes were incredibly expensive. (See my story about the stunning cost of memory care.) For the next two days, I’d pour over spreadsheets and life expectancy charts to determine how I could support myself in my eventual retirement and also pay for Robert’s care at Daylight. Could I afford it? Could I get past the guilt that plagued my waking hours, and muster the courage to choose a life for myself?
I signed on the dotted line for the room at Daylight. Daylight would be Robert’s new home.