Chapter 13

I started the report at my kitchen table, with my motorcycle helmet on one chair and a stack of café schedules on the other.
The pilot had been one day. The report couldn’t pretend that made the conclusions simple.
I listed what we knew: six families had registered. Four attended. Two did not. The shuttle never arrived. We knew how two families who came had managed to get there—with help from a brother and a neighbor—but we didn’t know why the other two families missed the day. I wrote that down as unknown, not as a guess.
Then I described what happened inside the library.
Lunch arrived nearly forty minutes late. The quiet hour gave one caregiver a chance to breathe, but she had told us it wasn’t long enough. One participant appreciated being asked before anyone helped him. Another family said they needed more dependable transportation than a neighbor could provide.
I read that last sentence twice. It sounded tidy. The reality wasn’t.
I revised it: A neighbor’s help made attendance possible for one family on this occasion. It did not establish a reliable transportation plan.
That was closer.
My electricity bill sat under a magnet on the refrigerator. I had enough money for the minimum payment if my café shifts stayed steady, and my six-week contract meant I could count on pay for hours I worked. It did not mean the center had ongoing funding, or that my job would continue after the trial.
I put the bill aside and kept writing.
By the next afternoon, Alexander and I were in a small conference room at Carter Holdings, reviewing the report before the board meeting. Eleanor sat near the end of the table with her hands resting beside a cup of tea. She had chosen to come, she told us, because she wanted to hear the discussion—not because anyone needed her to represent all people with Parkinson’s.
The report was open on a screen. Beside it sat a page of proposed next steps.
“Attendance is the first thing they’ll look at,” Alexander said.
“It’s the first thing they can count,” I replied. “That doesn’t make it the only thing that matters.”
He glanced at the report. “And it doesn’t tell us why two families didn’t come.”
“Right. We can’t call those absences proof that the schedule failed, or proof that the families weren’t interested. We don’t know.”
Eleanor nodded. “Good. Don’t make me into a data point for something I didn’t say.”
“I won’t,” I told her.
I’d included her comments only with her permission. She had asked that the report note her choice to listen, participate when she wanted, and leave when she was ready. She did not want her diagnosis, her photograph, or her family history used to sell the program.
Alexander read the section about the room setup.
“Clear paths, optional private space, staff asking before assisting,” he said. “All of that worked.”
“Some of it worked for the people who were there,” I said. “We can recommend keeping those practices in the next trial. We can’t say the room was accessible to everyone who registered, because two people didn’t make it into the room.”
He looked at me for a beat, then nodded.
“Keep that distinction.”
A few days later, I stood before the board with the report in my hands. I had been nervous enough to check the pages three times in the hallway. I was still wearing my café shoes; I’d come straight from a lunch shift.
The boardroom felt colder than the corridor. A handful of directors sat around the long table, with the board chair at the center. Alexander sat to my left. Eleanor had chosen a seat near the door, where she could leave without interrupting anyone.
The chair opened the meeting by thanking us for the report.
Then one of the board members tapped a pen against the attendance table.
“Four families is a very small sample,” she said. “How can we make a decision based on that?”
“We can’t use it to claim the program works broadly,” I said. “We also shouldn’t use it to claim it doesn’t. It was one day, and the transportation plan failed. We have specific feedback about what was useful and what wasn’t. A longer evaluation would help us learn more.”
“What would you measure?” another director asked.
“Whether people can get there reliably. Which services they choose to use. Whether caregivers can take the break they asked for. Whether participants feel they’re being offered help rather than managed. And what each part costs.”
“Those are difficult things to measure consistently.”
“Yes,” I said. “Some are. We should still ask people directly and record their answers carefully. We can report what we learn without pretending every answer fits a number.”
The chair folded his hands. “And you would recommend funding another trial, knowing the first had a failed shuttle, delayed lunch, and only four families in attendance?”
“I’d recommend a limited next step with transportation and scheduling addressed before families are asked to rely on it. I’d also recommend paying participants and caregivers who contribute to decisions. Their time is work.”
A board member leaned back.
“You’re asking us to spend more money before we know whether this can become sustainable.”
“I’m asking you not to treat one day as proof of sustainability,” I said. “It wasn’t designed to prove that. It was designed to test some services and show us what still needs work.”
For a moment, nobody spoke.
Then Alexander turned to the board.
“There is another question we need to address before any decision about continued funding,” he said. “The project’s governance.”
He placed a document on the table. It was not a final agreement. The pages described a proposal he had kept private until he was ready to present it: using his personal assets to explore an endowment for an independent nonprofit, with transparent financial oversight and formal participation by people with Parkinson’s and caregivers in program decisions.
I watched the board members look from the document to him.
“The endowment is not approved or funded,” Alexander said. “The structure would require legal and financial review. I’m presenting it as a proposal, not as money the pilot can spend.”
The chair studied the first page. “Why an independent nonprofit?”
“Because the purpose is community care. It shouldn’t depend on whether Carter Holdings wants to advertise a project in a particular year.”
“And yet you’re asking this company to commit resources to establishing it.”
“I’m asking the board to consider whether the work is worth supporting. The organization itself should have independent oversight.”
One director turned a page. “That means the company could provide funding and have no direct control over how the program operates.”
“Yes,” Alexander said.
“Or whether it uses the Carter name.”
“Yes.”
The chair leaned back, his expression careful rather than angry.
“The board has a responsibility to protect company funds and reputation,” he said. “If Carter Holdings supports this, the company will want appropriate oversight. It will also expect the project to carry the Carter name.”
Alexander didn’t answer immediately.
“I understand the responsibility,” he said. “But oversight is not the same thing as owning the decisions.”
The chair looked toward me.
“Emily, do you believe participant and caregiver input should have authority in the organization’s decisions?”
“I believe they should have a real role, with clear responsibilities and compensation for their time. The exact structure needs to be worked out. I’m not qualified to design nonprofit governance by myself, and I shouldn’t be asked to speak for everyone affected.”
Eleanor lifted her eyes from the document.
“I can tell you what I would not accept,” she said. “I would not want help that turns me into a photograph on a brochure while someone else decides what I need.”
The chair gave her a respectful nod. “That is understood.”
“I hope so,” she said. “But understanding isn’t the same as control.”
The words settled over the table.
The board asked questions about the report’s limits, the failed transportation, and what a longer evaluation would cost. Alexander answered where he could. When a figure was still an estimate, he called it an estimate. When the endowment proposal needed further work, he said so.
No one approved funding. No one rejected the proposal outright.
At the end of the meeting, the chair closed the folder.
“The board will hold a final decision meeting next week,” he said. “Before then, we need a revised proposal that explains the oversight and financial safeguards. I also want to be clear about the conditions for approval.”
Alexander sat very still.
“If Carter Holdings is going to support this, the project must carry the company’s branding and remain under direct company control,” the chair continued. “Without those conditions, I don’t believe the board will approve the funding.”
The meeting ended with the final vote scheduled and the condition entered into the record.
In the hallway, Eleanor walked beside me toward the elevators.
“They want to put their name on it,” she said.
“And control it,” I replied.
She glanced at Alexander, who was still in the conference room with the chair.
“Then the question isn’t just how much money they’ll offer,” she said.
May you like
I looked back at the closed boardroom door.
No, I thought. It was whether Alexander would accept the price.