Mary Jo Rose was the sister I never had.
I met her in 1971, when Bonnie and I were living in a big two-story house in Tulsa’s Maple Ridge district — self-described hippies, long hair and beads, happy and free, sharing our home with friends who came and went. Mary Jo came to live with us for a while, and that’s when I really got to know her. She was beautiful, a former airline stewardess, recovering from a serious heroin addiction she had fought and beaten before I ever knew her. She found her way to the Baháʼí faith somewhere along the way, though she never stopped calling herself a “multi-pather” — taking whatever worked from whatever tradition offered it. She was the quintessential flower child: spiritual, loving, outgoing, incapable of walking past a person in need without stopping.
At some point she went back to school and earned her degree. We were so proud of her — proof that she intended to make something of her life, and she did.
Eventually she moved to Eureka Springs, Arkansas, and stayed for decades, building something extraordinary. She founded Lane House, a haven for local teenagers — crafts, acting lessons, a place to be somebody after school instead of drifting toward trouble. She loved those kids fiercely, and they loved her back. Lane House and the Main Stage Cultural Center she also built were, in the words of her obituary, the children she never had.
For more than fifty years, Mary Jo was one of the most alive people I have ever known.
What We Called “Quirks”
For decades, Bonnie and I saw her three or four times a year. Thanksgiving in Eureka Springs. Christmas in Tulsa. A spring visit, a fall visit, the rhythm of a friendship that never needed scheduling because it was simply permanent.
Somewhere along the way — and I genuinely don’t know exactly when — small things started happening that we noticed and then explained away.
The luggage was the first thing. For a three- or four-day visit, Mary Jo began arriving with two enormous suitcases, hanging clothes, bags stuffed with things that made no sense for the length of the trip. I would make two or three runs from her car, with a shopping cart, hauling it all up to our nineteenth-floor condo, shaking my head the whole time. That’s just Mary Jo, we’d say, and laugh about it.
She lost the ability to use any digital device. We gave her a tablet once. She could not learn it, could not remember from one day to the next how to turn it on.
About ten years ago, visiting her house, we noticed she had started adjusting every door in the place — some open all the way, some cracked an inch, some nearly shut — convinced this complicated arrangement improved the airflow between her unzoned upstairs and downstairs. We shrugged it off.
We’d take her to her favorite Italian restaurant, where she’d worked decades before, and she couldn’t stay in her seat. She would circle the dining room, introducing herself to strangers, telling them she used to work there. We’d drive the back roads around Eureka Springs — roads she had known for years — and she would get lost a few miles from her own house. If we said anything, she grew defensive, sharp in a way that wasn’t like her.
And there was the afternoon in ninety-five-degree heat when we stood waiting by the door while she disappeared to get a sweater. Then came back. Then disappeared again for a jacket to go over the sweater. We waited. We laughed about it later. We had no idea what we were actually watching.
It took us years to understand that we weren’t watching quirks. We were watching a friend disappear, one small confusion at a time, and calling it personality because the alternative was unthinkable.
We weren’t watching quirks. We were watching a friend disappear, one small confusion at a time, and calling it personality because the alternative was unthinkable.
The Grief That Starts Before the Death
Mary Jo’s obituary, written by my daughter Margaret, says it plainly: people close to her eventually realized she had likely been living with early dementia for years before anyone named it.
There is a term for what Bonnie and I were actually living through during those years, though neither of us knew it at the time. Psychologists call it anticipatory grief — the mourning that begins long before death arrives, triggered not by a funeral but by the slow recognition that the person you love is becoming someone else. It is grief with no clear starting point and no permission to call itself grief, because the person is still right there, still talking, still laughing at the same jokes. You are not allowed to mourn someone who hasn’t died. And yet that is exactly what is happening.
What I’ve come to understand, looking back, is that this kind of grief hides in plain sight because the disease causing it does too. Dementia doesn’t arrive as a diagnosis on a particular Tuesday. It arrives disguised as the person you already know, wearing their habits and their humor like camouflage. The extra suitcases looked like Mary Jo being Mary Jo. The doors looked like an eccentric system only she understood. The defensiveness when we questioned her looked like her temper, not her terror. We weren’t in denial, exactly. We simply didn’t have the lens yet to see what we were looking at — and so the grief had nowhere to go. It just accumulated, quietly, year after year, disguised as affectionate head-shaking at a friend’s eccentricities.
Men in particular are not well equipped for this kind of recognition. We are trained to read situations for action — what needs fixing, what needs doing — and far less trained to read a slow, ambiguous drift in someone we love. By the time the picture becomes undeniable, often a decade or more has quietly passed, and with it, years of grief we never let ourselves feel because we never let ourselves name what was happening. Looking back now at decades of visiting a close friend three or four times a year, I wonder how many of those visits I would have experienced differently had I understood what I was actually seeing.
The Last Year
Mary Jo spent the final year or so of her life in an assisted living facility she hated. It was a modest place — depressing to walk into, not anywhere any of us would have chosen for ourselves. She wanted to escape. She tried, more than once, to enlist friends to help her leave.
We visited at least five times that year. This was the anticipatory grief in its rawest form — watching this once-vibrant flower child sit in complete bewilderment, lost inside a life she could no longer follow, grieving her fully while she was still breathing across the table from us.
The last visit was the hardest of all. She recognized us when we walked in. She could not always remember our names. She was lost, alone, and confused, and there was nothing we could do to fix it — only sit with her in it, grieving a woman who was, in every way that mattered to her, already gone, while her body remained. Thirty days later, she died.
She recognized us when we walked in. She could not always remember our names. She was lost, alone, and confused, and there was nothing we could do to fix it — only sit with her in it.
What I Won’t Pretend
I want to be honest with you about something, because I think false performance does a disservice to real grief.
When Mary Jo died, alongside the enormous loss, there was also relief. Relief that her suffering had ended. Relief that the woman who once built sanctuaries for troubled teenagers no longer had to live lost and frightened in a place she hated. I don’t feel guilty about that relief. Neither does Bonnie. We loved her like a sister for over fifty years, and we carry decades of real, joyful memories that will never be touched by how it ended.
Perhaps that’s the strange mercy of anticipatory grief, if there is one: by the time Mary Jo actually died, Bonnie and I had already been grieving her, in pieces, for years. The death itself, when it came, was almost a formality — the official end of a process that had been quietly underway since the first oversized suitcase, the first lost turn on a familiar road.
What I do carry is a question I’m still sitting with: why did it take us so long to see what was happening? I don’t think an earlier diagnosis would have changed much practically — Mary Jo was who she was, and dementia takes its course regardless of when it’s named. But I wonder, still, what we might have done differently in how we showed up for her during those confused, frightened years, if we had understood sooner what she was actually living through.
I don’t have a clean answer. I’m not sure there is one.
What I Would Say to Another Man
I hesitate to hand out advice here, because every friendship, every decline, every family is different. What worked, or didn’t work, for Bonnie and me with Mary Jo may not translate cleanly to your situation.
But if you are watching someone you love start to do things that don’t quite add up — the extra suitcases, the lost directions on familiar roads, the defensiveness that wasn’t there before — I would ask you to consider one question honestly: is this quirkiness, the kind that’s always been part of who they are, or is it something more?
You may not be able to answer with certainty. We couldn’t, for years. But asking the question — really asking it, instead of reaching for the easy explanation — is itself a form of love. And naming what you’re feeling while you’re still asking that question — calling it grief, even though no one has died yet — may be the thing that lets you actually feel it, instead of burying it under decades of head-shaking and laughter that was covering something much harder.
Mary Jo Rose lived an enormous, generous, unconventional life. She built sanctuaries for kids who needed one. She loved fiercely and was loved back. The disease that took her did not get to define her — fifty years of friendship did that, long before anyone understood what was happening in those last years.
