Article originally appeared in the Boston Globe
I’m a neurologist whose mother is taking one of these medications, and even I am struggling with this question.
It drips in, and my mom settles back. I feel the weight of the hours ahead of us, one for the infusion, two for observation. I worry that we’ve made the wrong calculation, that this ordeal is wasted money and time. But my mom seems at peace. I’ve noticed this, particularly since we’ve moved from mild cognitive impairment to mild dementia. With fewer new memories forming, my mother seems to be floating in the present, as though in a meditation. She is the happiest I’ve ever seen her.
“Mom, what do you know about lecanemab?” I ask her. “Not much,” she says, airily. “Do you want to know more?” “Well, I guess if there are major risks described, then I should know them.” “There are major risks —” I start to say, although I know she has heard this before. “Do you want to talk about that?”
“Sure,” she says. She opens her protein bar and chews it thoughtfully. “But maybe I’ll wait until I have more treatments. For now, let’s just see what happens.”
Her lack of scrutiny is foreign to me. My mother is a physician-scientist who worked for decades on the quest to cure hepatitis C. She started her career before the virus even had a name, and she retired after leading a team that brought one of the first modern, frequently curative hepatitis C antivirals to market. Even now, although she rarely talks about her career, it’s easy to get her fired up about medical science. At her neurology appointments, she asks about novel compounds and clinical trials. She had been eager to start lecanemab, asking smart questions about risks and benefits and requesting copies of the scientific literature.
Now, with another Alzheimer’s infusion medication, donanemab, approved by the FDA last month, she’s asking about that too.
Recently, though, I found that my mom had covered nearly every available surface of her home in paper: printouts of Epic MyChart scheduling exchanges, meticulous notes of telephone conversations with friends, lists of regional waterfalls, all interspersed haphazardly with treasures like the ultrasound photos of me in utero and a 1977 L.A. Times article featuring her in her white coat, titled “Three Profiles of Women With Jobs.” Among the stacks, I found four different folders she had labeled “Lecanemab,” each with an unmarked copy of The New England Journal article about the drug trial and a Post-it note in her handwriting: “Read this.”
“Have you read the literature?” I ask. “I have the studies,” she says, “but I haven’t wanted to read them.” “Why not?” “I guess I just want to go along with the program. My doctors know what they’re doing. You know what you’re doing. You’re a neurologist!” She smiles. I feel increasingly panicked.
In my work as a physician caring for hospitalized patients with acute nervous system disorders like strokes, many of my patients can’t consent for themselves. My role is to help someone else, usually a family member, make decisions for the patient. The situation with my mom is more ambiguous. She’s here, leaning into this medical decision, but it’s not clear to me how much she really understands or which of us is in control.
I had always relied on my mom to help me make big decisions. She would flip onto a new page of a ruled yellow notepad and map my problem, asking question after question, generating lists of unknowns and next steps until we had a plan. Watching her work that notepad was deeply comforting. She was a single mother for most of my childhood, and I am an only child.
“You and me,” she always said. “We’re a team.”
And now? Everyone knows the big milestones of Alzheimer’s — getting lost in familiar places, forgetting the names of loved ones. I fear these changes for my mom, but at least I can see them coming. What’s hardest about this earlier stage of the disease is discovering again and again that she’s already lost something subtler, like her ability to map the risks and benefits of a major medical decision. If I could just anticipate such losses, I could prepare for them and maybe they wouldn’t hurt so much. But it would be impossible to anticipate them all, just as it would be impossible to generate a list of the thousands of things I love about her. Losing the myriad parts of my mom — it’s like stars fading in the morning. Even scanning the sky, you can’t catch them right as they disappear. There just seem to be fewer and fewer, until all is bright.
“OK!” The nurse says. “The infusion is done!” She unhooks the I.V.
“So we can go now?” my mom asks me.
“Actually, we have to sit here for two hours for observation.” “Wow. And how many of these infusions am I going to get?”
Here we are again. I want to activate her somehow. I want to reach in and pull out my teammate who will tell me if we are making the right call. I’m not sure if that’s still possible, but I have two hours to try.
“You know,” I venture, “This medication, lecanemab — it’s not a treatment to reverse Alzheimer’s. It’s a treatment to try to slow it down. And for you, or for any individual patient, there’s no way to know if it’s working or not, because we don’t know what your natural history of Alzheimer’s would be. So it’s kind of an act of hope, to try to buy you a little more time.”
“OK, well, is there any drug that’s better?” “No, there isn’t.” “Then this is fine. I would do anything to keep this disease under control,” she says. “Do you think I’m being unrealistic?” “I think you’re feeling hopeful,” I say. “And hope is not a thing of reason. Hope is an important part of being ill. Everybody has to find their way through uncertainty, and you’re finding yours.”
“Right,” she says. An old look passes over her face, one that I’ve seen before, but it’s been a long time. “Maybe it’s just because of my background developing treatments for hepatitis,” she begins. “We never knew when a group would develop a new treatment that would change everything. And I’m just of the mind that that could happen in Alzheimer’s too, something we don’t know about yet that could reverse, as opposed to just slow, the disease.
“And fortunately in my field, we made so much progress. When I first started, there was nothing to tell patients, nothing of hope. But we just kept giving them the same message: We’re not going to give up. The companies are looking, scientists all over the world are looking, and as soon as anything becomes available, even if it’s experimental, we’ll explain it to you and you can decide if you want to take it. So I can’t help but apply the same philosophy to this disease. None of us knows what’s around the corner. We’re just going to take it one day at a time.”
She looks radiant, rallying me from her infusion chair. My stepfather and I may have taken over the notepad, but this is still her story. I can’t let myself forget that she’s still here.
Her nurse returns. Two hours are up. Just one last blood pressure. Take out the I.V. We’ll walk into the afternoon sun together, drive across the bridge. At home, she’ll get down on the rug with my son. He’ll want to throw her the ball, over and over, laugh, throw the ball, laugh, throw the ball. And she’ll be right there, laughing and throwing, laughing and throwing, until 10 minutes have passed, 20, 30, never once glancing at the clock. She can stretch out his laughter into an eternity of joy.
That’s the way it is now. The past is dissolving. The future is uncertain. We don’t know how much time we have left together. Right now, right this instant, is the best it will ever be.
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Adeline Goss is a neurohospitalist and associate chief of neurology at Highland Hospital in Oakland, Calif.
