What the Doctor Doesn’t See

Justin just wrote the clinical version of this – the signposts, the medical framework, the stuff your geriatrician would tell you if your geriatrician had unlimited time and actually knew your family. Most don't. That's not a knock on geriatricians. It's a knock on a system that gives them twelve minutes per patient.

This is the other version. The one from inside the house. My wife Bridgid has been caring for her parents for nearly a decade – her dad has Parkinson's, her mom has dementia – and I've been standing next to her the whole time, trying to figure out what exactly that role is. I'm still working on it. But I've learned a few things along the way that I wish someone had told me earlier, so here they are.

The tension that eats your calendar

Here's the thing nobody warns you about: the hardest part isn't the diagnosis. The hardest part is the not knowing before the diagnosis.

My mother-in-law started sending duplicate birthday cards. Same card, same person, a week apart. She'd never done that. She was the kind of woman who never forgot a birthday. Ever. For decades. Then she started talking about people who'd died as if they were still alive. Calling family at odd hours. Telling you the same story three times in a single visit, each time with the same emphasis, because for her, it was the first time.

Here's where it gets tricky: she was also still sharp. Social, funny, warm. She could walk into a doctor's office and perform a perfectly convincing twenty minutes of Normal. Doctors see snapshots. They don't see the slow erosion that only shows up across months and years of actually being around someone. So you're sitting there going, “Is this something? Or is this just what getting older looks like?”

That tension – is this normal aging or is this something more – is, I'm now convinced, the single most expensive thing in early dementia care. Not in dollars (though that too, eventually). In time. Because while you're stuck in that tension, you're not planning. You're not having the hard conversations. You're not evaluating options. You're waiting. Waiting for someone with a medical degree to confirm what you already suspect but don't want to say out loud.

The fruit question

I want to talk about a specific moment, because I think it'll resonate with a lot of people and nobody ever writes about it.

Early on, the symptoms are so small they don't register as symptoms. They register as your parent being annoying. Mom would ask if you wanted fruit with breakfast. Then ask again. Then again. Sometimes she'd laugh about it, like it was a running joke, like she was in on it. A hundred times.

And you'd feel the irritation building, because you literally just answered this ten seconds ago, and the urge to snap is real. And sometimes – I'm being honest here – you do snap. You say “you just asked me that.” Then you feel terrible. Then she asks again.

Here's what I'd tell you if you're in that moment: don't argue with them. They genuinely don't know they're doing it. The question is new to them every single time. Your brain reads it as “she's not listening to me.” The reality is that the conversation is resetting. It's the disease. Not stubbornness, not rudeness, not some passive-aggressive thing. The disease.

I know that's hard. But the moment you stop fighting the repetition and start just answering the question again, something shifts. For both of you.

The invisible safety net

We saw Bridgid's parents four or five times a week. Four or five times a week. And we still didn't see the full picture.

Because here's what was actually happening: her dad was covering for her mom. Quietly. Seamlessly. He just compensated. Handled the things she couldn't handle. Filled in the gaps. He'd been doing it so long and so naturally that we couldn't even see it. It just looked like their life.

Then he had a fall. He was out of the picture. And everything he'd been holding together came apart overnight.

That was the moment we understood how much had been hidden in plain sight. It was not a fun moment.

If someone in your family is quietly compensating for someone else, you might not know it until they can't anymore. My very strong advice: pay attention to the helper, not just the person being helped.

Anosognosia, or: it's not stubbornness (well, maybe a little)

We spent a long time thinking Mom was just being stubborn about admitting something was wrong. And look – she is a strong woman, and stubbornness was absolutely in character. But it turns out there's a clinical term for what we were actually dealing with: anosognosia. (I had to look up the spelling twice, so don't feel bad.)

Anosognosia is not denial. Denial is psychological – you know something's wrong and you push it away. Anosognosia is neurological. The disease itself damages the part of the brain responsible for self-awareness. The person genuinely, honestly, truly believes they are fine. Up to 81 percent of people with Alzheimer's dementia experience some form of it (StatPearls, NCBI). Eighty-one percent. That's not an edge case. That's most people.

So: your parent genuinely believes nothing is wrong. The doctor gets twenty-minute snapshots where your parent seems fine. And you're standing there with your printed notes trying to figure out how to say “she's declining” without saying it in front of her.

This creates a very specific kind of stuck. And if you're in it, here's what I've concluded: you have to plan around them. Not against them. Around them. Gather information quietly. Get on the same page with your siblings. Pull your notes together.

And – this is important – put those notes somewhere everyone can see. Because here's what happens otherwise: your sister sees Mom on Tuesday, she seems fine. You see her the following week, she's terrible. Your sister thinks everything's okay. You think the sky is falling. You're both right. You're just seeing different points in time. But without a shared record, you end up arguing instead of seeing the trend. And the trend is what matters.

Build the team before you need it

There's a 2025 study out of the University of Michigan that looked at 336 dementia caregiving networks and classified them into types (Leggett et al., Journal of Gerontology). I'm going to nerd out on this for a second because it matters.

Nearly a third of families were what the researchers called “Siloed.” Small teams where each person did their own thing but nobody coordinated. And here's what happens in those families: the caregiver burns out. That's not a metaphor. Caregivers in siloed networks reported the least social support from family and friends. They felt alone, even when other people were technically helping. When a caregiver burns out, the quality of care drops. Medications get missed. Behavioral changes go unnoticed. The person showing signs of agitation or confusion doesn't get the response they need, because the person responsible for noticing is running on empty and just trying to get through the day.

The downstream effect on the person with dementia is measurable. People with dementia in siloed networks had significantly worse sleep. That might sound minor if you haven't lived this — but sleep disruption in dementia is one of the strongest predictors of faster cognitive decline, increased behavioral symptoms, and earlier placement in a facility. When the person with dementia sleeps poorly, the caregiver sleeps poorly. When the caregiver sleeps poorly, they're less patient, less observant, less able to manage the behavioral symptoms that are themselves made worse by poor sleep. It's a cycle, and it accelerates.

The families that broke that cycle weren't necessarily bigger. The researchers found a group they called “Small but Mighty” — just two people, same size as the siloed teams. But those two people shared tasks. They communicated. When one person noticed something off, the other person heard about it. When one was exhausted, the other picked up the slack. They weren't doing more work. They were doing coordinated work. Those tiny teams matched the outcomes of much larger, more complex networks. Better sleep for the person with dementia. More support for the caregivers. Less isolation all around.

The time to build that team is now. Not after the fall. Not after the diagnosis. Not after the crisis that forces everyone into a room together.

Because – and I'm speaking from extremely direct experience here – that's exactly what happened to us. We didn't get coordinated until we had to. Until the fall. Until emergency mode. Until decisions that should have been made over coffee were being made in hospital hallways.

If your family hasn't had the conversation yet – who's doing what, who's watching for what, where are we keeping the notes – have it today. It doesn't have to be perfect. It doesn't have to be formal. It just has to exist. You don't need a big team. You need a connected one.

Two diseases, one household

One more thing, because families dealing with Parkinson's need to hear this.

Our family was fighting on two fronts. Dad's Parkinson's came first and got most of the attention – it's the visible diagnosis, the one with obvious physical markers. Mom's cognitive decline was quieter, slower, easier to explain away.

What nobody told us is how often these two things travel together. Roughly 30 percent of people living with Parkinson's will develop dementia, with some estimates pushing 40 percent (Aarsland et al., Journal of Parkinson's Disease). Even at diagnosis, 10 to 20 percent already have cognitive deficits. About a quarter of non-demented Parkinson's patients meet criteria for mild cognitive impairment (Neurology, 2024). The rate of Parkinson's disease dementia runs five times that of age-matched peers (Bhatt et al., Neurology, 2014).

Nobody connected those dots for us. If your family is managing Parkinson's, watch for the cognitive changes too. They're not separate stories.

Where I stand in this

Bridgid is the caregiver. I want to be clear about that. She's the one carrying the weight of watching the two people who raised her change in ways that don't reverse. She has the history – decades of knowing exactly who they were before all of this – and that's what makes the loss so specific and so heavy for her.

I've been in it too, though. I've driven her parents to appointments. I've sat in the waiting rooms. I've watched her mom charm a neurologist for twenty minutes while Bridgid sits there gripping her notes, waiting for the right moment to say what the doctor can't see.

What I've figured out – and it took me a while – is that the spouse of a caregiver occupies a strange position. You're close enough to see everything but one step removed from the grief. Which means you sometimes catch patterns the person in the middle of it can't. You notice when the good days get rarer. You notice when your wife is running on fumes and won't say so. You can't carry the emotional weight for her, but you can carry the things around it – the logistics, the research, the nights where there's nothing useful to say and the only useful thing is not being alone.

That sounds small. It isn't.

Mom is in a good place now. Dad is on hospice. Bridgid is still the caregiver. I'm still standing next to her.

We got here. It took longer than it should have, and we made mistakes I'd like other families to avoid. That's why we're building Alula – and why we're writing this.