BREWSTER, Mass. — He used to be an incisive American history teacher and a fiery lefty activist. And he still talks with fervor about the plight of working class people and his disgust with Donald Trump.
But Rob Moir can’t remember anything Trump’s been saying. And last week Rob needed his wife to remind him which down-ballot candidates he prefers, and to stand beside him at the voting booth guiding him gently while he bubbled in his early ballot.
Rob is one of millions of Americans with dementia. And like many of them, he’s had to navigate the voting process alongside a caregiver this election season. For people like Rob in the earlier stages of the disease, voting can be at once empowering and challenging. And it can grow increasingly fraught as the disease advances.
Whether someone with Alzheimer’s can vote is almost never a legal question. Across the country, states allow people with disabilities or conditions like dementia to bring a helper into the voting booth with them.
In practice, whether they cast a vote often gets left to the discretion of a caregiver. Many geriatricians and ethicists who study the issue say there’s one key question to determine whether someone with Alzheimer’s should vote: Can they express their choice? It doesn’t matter if they’re confused about what day it is. Or whether they can physically fill out the ballot. What matters is that they’re able to state, write, point at, or otherwise cogently indicate who they want to vote for. And for many people with dementia, especially in the early and middle stages of the disease, that’s entirely doable.
Neither Rob, 77, nor his wife Margaret Rice Moir, 67, ever doubted that he would vote this fall, nearly two years into his Alzheimer’s diagnosis.
They choose not to imagine a future where he could no longer cast a ballot.
It’s already heartbreaking enough for Margaret to see Rob unable to grasp the nuances of ballot questions. Unable to get anything out of the political activism meetings they’ve always attended. Unable to volley back and forth with her in the crackling political conversations that have been a foundation of their marriage for decades.
“This is a disease where there’s just constant incremental losses. Constant reminders of what you’re losing,” Margaret said. “And so then you remind yourself of what you have.”
Still fit from his days as a competitive runner, Rob dresses in jeans and a T-shirt and sports a trimmed beard. He’s quiet; when he speaks, he does so slowly and resolutely, and counters an air of gruffness by cracking offbeat jokes. He plays the agreeable stoic to his wife’s intense and vivacious persona.
Married 42 years, they talk affectionately about their grown children, a son in New York and a daughter in Virginia who’s married with a 7-year-old son of her own. But they’ve also built a new orbit here in this picturesque beach town on Cape Cod, seven years after uprooting from New Jersey, where they’d spent their careers as public school teachers.
They’ve found particularly strong community through the local Alzheimer’s support center. Rob meets at the library once a month with a group of men who also have the disease. And Margaret has coffee most weeks with the wives of the men in Rob’s group — her “lifeline,” as she calls them.
“I have a wonderful life. There’s a lot of good people up here on the Cape. I’m comfortable here,” Rob said. “And I also realize that I shouldn’t be too comfortable here in life, and I should be on my feet and try to, in a small way, help rectify the evils that exist.”
“This is a disease where there’s just constant incremental losses. … And so then you remind yourself of what you have.”
Margaret Rice Moir
They’ve been trying to do that since they met in the late 1960s, when Margaret approached Rob after he gave a talk in support of a farm workers’ union. Their resume of fierce activism in the years since is spelled out in the signs hanging in the front windows of their home (“End war”) and the bumper stickers plastered on their car: “Want democracy? End corporate rule.” “Got food? Thank a migrant worker.”
“Politics has been the absolute core of who we are,” Margaret said.
This year, they’d been big Bernie Sanders supporters, holding events at their home to try to drum up support in advance of the Massachusetts primary in March. (Their candidate just barely lost.)
For a long time they were wary of Hillary Clinton, nervous about what they saw as her hawkishness and her centrism, even as it became clear she would win the Democratic nomination.
They still haven’t taken down the Sanders campaign signs — not the “Bernie 2016” sign nestled in the bushes in front of the house, nor the “We Want Bernie” stickers plastered on the front door, not even the “Bernie for President” sign that greets you as soon as you walk in the front door.
But they both eventually warmed to Clinton. And Rob’s support for her gave him a vocabulary to express himself.
At a party they attended recently, everyone formed a “gratitude circle,” and one by one, expressed how they were feeling. When it was Rob’s turn, he only talked about Clinton (no doubt the candidate we must elect) and Trump (a danger and a menace).
It was classic Rob, Margaret thought: Centered — no matter what — on politics.
It began in 2012, while they were taking a road trip together in the endless nothingness of Arizona desert. Rob, tasked with navigating, couldn’t for the life of him follow the driving map. It made Margaret furious — and, when they returned home, convinced that something was wrong with him.
Margaret was right.
An initial consultation sent them off on four years of tests and doctor’s appointments, most recently the one that brought them to Rob’s neurologist’s office in a suburb just south of Boston a week ago.
They had high hopes for the appointment: Rob was to take the cognitive test necessary to get into what would be his second clinical trial. The new study, designed for patients with mild Alzheimer’s, sought to slow the advance of the disease by blocking the accumulation of plaques called beta-amyloids, which build up in the brains of patients with the disease.
Alzheimer’s drugs have a long track record of failure in clinical trials; no new drugs have been approved since 2003. But Margaret had been encouraged by the slow progression of Rob’s disease during the first experimental study he participated in. She had a sense that Rob was getting worse, but was hopeful that getting into another trial might give him more borrowed time in the mild stage of the disease.
Rob went off with the study coordinator to take the cognitive test.
She prompted him: Remember the words “apple,” “penny,” and “table.” Count in multiples of 7. Take this piece of paper, fold it in half, and put it on the floor. Draw two overlapping and rotated pentagons. Tell me those three words I asked you to remember earlier.
When Rob came back to the waiting room to wait with Margaret for his results, he said it went OK.
Then Rob’s neurologist came back with the verdict: Rob had needed a score of at least 24 on a 30-point scale to get in. He got a 22, two points short of the cutoff. On a good day he would have passed.
Rob didn’t say anything. “Can we do it again?” Margaret asked, crestfallen.
They couldn’t. The neurologist reassured them that Rob would likely be able to get into a different trial that sought to relieve symptoms for patients in the moderate stage of Alzheimer’s. And based on the results of his upcoming cognitive tests, they could consider putting him on a drug long on the market and approved for patients in the moderate stage of the disease.
Moderate. Not mild.
Another one of those incremental losses.
“The civil rights of people with dementia are very much in the hands of other people” — nursing home staff or family members — who too often don’t know how to properly provide support around voting, said Dr. Jason Karlawish, a University of Pennsylvania geriatrician who studies ethical issues in Alzheimer’s disease.
Experts said there’s a need for more education for caregivers — to prevent them from inappropriately commandeering another person’s ballot, sure, but more pressingly to ensure that they can properly empower people with dementia who are fit to vote.
In other words: To help them have the kind of conversation that Rob and Margaret had sitting on the couch in their sunny living room last week as they prepared to vote early.
They hunched over the election materials they’d received in the mail, Margaret with a pen and a paper at the ready to take notes that Rob could bring into the polling booth with him.
She started with the easy question. “All right, so who are the candidates for president?”
“Well, I reluctantly say Trump,” Rob quipped. “And Hillary Clinton.”
And his vote? “Hillary Clinton. Definitely,” Rob said.
Down the ballot they went. Rob didn’t recognize the names of the Democratic candidates for state Senate and county commissioner, but Margaret reminded him that he’d met them at local meetings. Rob couldn’t reach a decision about the candidates for assembly delegate, so Margaret put a star next to the name of the candidate she’d be voting for.
They moved on to the ballot questions.
Question 2: It would lift the cap on new charter schools in the state. Rob said he didn’t know how he’d vote.
“Yes, you do. We were teachers,” Margaret insisted. She explained why she’d be voting no — and told him he would, too. Realizing she’d overstepped, she tried again: “I just really want you to make sure that it’s what you want, too. We always fought against [charter schools], when we were teachers.”
“I know that,” Rob said, his tone suddenly sharp.
Question 3: It would prohibit restrictive confinement of pigs, calves, and hens. Rob said he didn’t know enough about it. Margaret reminded him that they’d talked about it last night. (He had said then that he’d vote yes, and said it again now when she refreshed his memory.)
It went on like that, until they were ready to drive over to the polling place at the town clerk’s office. Margaret had decided they would vote six days early, figuring it would be easier for Rob to avoid the long lines and chaos of Election Day. And she wanted to put an end to Rob’s persistent questioning about when they’d be voting.
Just a few doors down their leafy street they drove past a yard with two bright orange makeshift Trump signs, one with the tagline, “Get us back to our roots.”
They drove on.
“Aye yai yai,” Margaret said. “I’m so anxious.”
“There’s a lot to be anxious about,” Rob said.
Margaret had said she’d been hoping she wouldn’t need to help Rob as he filled out his ballot between two black blinds in the polling booth. But he can get confused with paperwork, and so she stayed right beside him, pointing and murmuring to him when he needed it. They were the only couple in a row of single voters.
On the drive back home, they realized this was the first time they remember ever canceling out each other’s vote.
That was on ballot Question 4, which would legalize recreational marijuana. Margaret had initially been concerned legalization would just exacerbate the opioid crisis ravaging the Cape. But she decided to vote yes after studying research that convinced her marijuana is not a gateway to harder drug use.
“I totally disagree with that from what I saw at school,” Rob said.
“I’m just telling you the data,” Margaret said. “And the other thing is that it will be more managed, if they do that, which maybe is questionable.”
“Very questionable,” Rob retorted, engaged for a fleeting moment in the nuance.
The things she still had: Flights booked for the next day for a long weekend trip to see their grandson and get their minds off the election. Election night plans back home on the Cape; they’d have some friends over, watch the results come in on TV. Anxious but still together.
In an initial conversation about Rob’s future, Margaret acknowledged that a time may come when he’s no longer able to vote. In this disease of incremental losses, she’d said, “that will be a very significant loss.”
But after talking it over with Rob, she realized she now saw it differently. Politics, she said, is so closely tethered to his identity that no matter what this disease does to his memory, she’s confident he’ll have the capacity to vote, “with his last breath.”
And if that isn’t possible? “It doesn’t serve me well to go there,” she said.