There are things you can understand intellectually and still not understand at all. Dementia is one of them. Watch or listen to this podcast with guest author Dr. Kenneth Robbins and Munn Muse host and co-author Charles Levin.
A doctor can know the diagnosis. A family can understand what is happening to the brain. Everyone can read the books, listen to the specialists, and prepare as best they can. And then one day the person you love says something that makes no sense, asks the same question again and again, or looks directly at you with a face you have known for decades and, for a moment, seems to be somewhere else entirely.
That is when the clinical language stops being enough.
The physician behind Until You’re In It, Dr. Kenneth Robbins, M.D., M.P.H., spent decades practicing medicine and is board-certified in both psychiatry and internal medicine. He understood dementia professionally long before he understood what it meant personally. Those turned out to be two very different things.
He knew the symptoms. He knew the terminology. He knew what decline looked like on paper. What he did not fully know was what it felt like to live inside it.
That difference eventually became the heart of the book. That, and we interviewed 20+ caregivers who shared their poignant stories—what they wish they had known, what they learned, and what advice they would give other caregivers.
Because there is a reason it is called Until You’re In It. Until you are in it, you really do not know.
Writing for His Grandkids
One of the first problems he ran into while writing the book was that he sounded like a doctor. That was not especially surprising. Doctors spend years learning a particular kind of language. It is precise, efficient, and detached when it needs to be.
They document patient encounters. They assess symptoms. They describe cognitive changes. All of that language has a purpose, but it is not necessarily how you talk to a daughter who is trying to understand what is happening to her mother.
So he was given a simple piece of advice: write it for your grandkids.
That changed the book.
The medical terminology started falling away. The explanations became simpler. The stories became more important. Instead of trying to sound authoritative, he started trying to be understood.
That is a useful lesson for any writer. We often think good writing means sounding smart. Usually, it means making the reader forget that you are trying to sound like anything at all.
“It Looks Like It’s Raining”
One of the stories that stayed with me involved a person with dementia looking outside on a perfectly clear day and saying, “It looks like it’s raining.”
The obvious response is to correct them. No, it is not raining.
But what if the sentence is not really about the weather? What if the person is wet, cold, or uncomfortable? What if “it’s raining” is simply the closest available language for a sensation they can no longer explain?
That changes the whole interaction.
Instead of asking, “Why are they saying something that is not true?” you begin asking, “What are they trying to tell me?”
That is a much harder question. It also happens to be a much more useful one.
Caregiving Turns You Into a Detective
Dementia can make ordinary conversation feel like detective work. A person may repeat something over and over, become agitated for no obvious reason, or ask to go home while sitting in the house they have lived in for years.
The natural instinct is to respond to the words themselves. But sometimes the words are only the beginning.
“I want to go home” may mean, “I am scared.” Anger may mean pain. Restlessness may mean discomfort. Silence may mean more than it appears to.
None of this is exact. There is no decoder ring for dementia, and caregivers guess wrong all the time. But over time they begin to pay attention to different things: a facial expression, a tone of voice, the way someone is sitting, whether they seem cold, whether something in the room has changed.
You begin listening beyond the words.
That may be one of the strangest things dementia teaches us: communication can continue even when language becomes unreliable.
When the Words Hurt
Of course, not all of those moments are gentle.
Dementia can strip away some of the filters people use throughout adult life. Someone who was once patient may become angry. Someone who was soft-spoken may suddenly shout. A husband or wife may hear words they never imagined hearing from the person they love.
“I hate you.”
Those words still hurt. It would be easy to say they should not, but they do.
The important thing is understanding that the sentence may not mean what it would have meant twenty years earlier. It may be frustration, fear, discomfort, or simply the strongest language available in that moment. The person may be reacting to a feeling they cannot explain and cannot regulate in the way they once could.
That does not make the moment painless. But it can keep the moment from becoming a verdict on the relationship.
There is a big difference between those two things.
There Is No Such Thing as a Perfect Caregiver
Caregivers get tired. They get irritated. They need a break. They need help. They need to leave the house sometimes without feeling guilty about it.
They need to take a shower, go for a walk, buy groceries, sit in a car for ten quiet minutes, or have a conversation about something other than medication, appointments, sleep, food, safety, or whether today is Tuesday.
None of that means they are doing a bad job. It means they are human.
And that matters because dementia caregiving can quietly turn into a test no one can pass. Be patient all the time. Never lose your temper. Never feel resentful. Never wish things were different. Never get tired.
Those are impossible standards.
The goal is not perfection. The goal is to keep showing up.
What Is Left When Memory Begins to Go?
We tend to think relationships are built out of shared memories. And of course they are. Trips. Stories. Birthdays. Arguments. Private jokes. The thousand little moments that become a life together.
So when memory begins to disappear, it can feel as though the relationship itself must be disappearing with it.
But that is not always what happens.
A person may forget your name and still become calmer when you walk into the room. They may not remember a particular story but respond instantly to a familiar song. They may not be able to explain who you are and still reach for your hand.
Some part of connection seems to live somewhere deeper. In familiarity. In voice. In touch. In the feeling of safety. In knowing, somehow, that this person belongs here.
If You Are In It
People like to give caregivers advice. Much of it is well-intended. Some of it is useful. Some of it is almost impossible to hear when you are exhausted.
“Enjoy every moment” is probably near the top of that list.
Not every moment is enjoyable.
Some are beautiful. Some are funny. Some are heartbreaking. Some are maddening. Some are simply long.
A caregiver can love someone deeply and still want one uninterrupted night of sleep. Both things can be true.
That may be another thing dementia teaches us. Two conflicting truths can exist at the same time. You can grieve someone who is still sitting beside you. You can be frustrated with someone and fiercely protective of them. You can miss the person they were while still loving the person in front of you.
And sometimes the person in front of you will look up, smile, and reach for your hand. No explanation. No medical language. No need to correct anything. Just a hand, and another hand reaching back. Maybe that is the quiet language dementia forces us to learn.
Not everything important has to be remembered. Not everything meaningful has to be said.
🎧 Listen to the full episode of The Munn Avenue Muse featuring the story behind Until You’re In It on your favorite podcast platform.
📘 Until You’re In It is available now at:
🌐 🌐 Learn more about Until You’re In It, the authors, and the guidance it offers dementia caregivers on the official website.
✍️ ✍️ If you are working through your own story, whether it is personal, professional, or somewhere in between, Munn Avenue Press can help you shape it into something lasting. If you are ready to publish your book or audiobook, or are just beginning to explore the idea, visit MunnAvenuePress.com to learn more.
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Happy Writing,
Charlie Levin, Publisher & Founder
