A Place Memory Couldn't Reach

Dementia runs in my family...My grandmother had it back in the early eighties, although I don't remember anyone calling it dementia then...She was senile...That's what we said. Years later, my mother developed dementia too, and by then I understood considerably more about what was happening...or at least I thought I did.

The strange thing is that I had been around dementia for much of my life. My parents were very involved in civic organizations and volunteer work when I was growing up, and some of that work took place in the five nursing homes in our hometown. I started going with them when I was probably three or four years old. On the first Wednesday of every month, my parents would take a cake and dozens of carnations around to the nursing homes and celebrate everyone who had a birthday that month...My mother also played piano at the homes on Saturdays, rotating among them, and I often went with her.

This was the seventies and early eighties...Nursing homes were different places then. I remember people crying...people screaming...people who seemed terribly confused...and perhaps more than anything, I remember people asking to go home. I was too young to understand everything I was seeing, but I understood loneliness...and I watched my parents do what they could about it. They couldn't cure anyone...They couldn't give people their old lives back...They couldn't take everyone home...But they could bring cake and carnations...My mother could play the piano...And they could show up.

Decades later, dementia became much more personal when it came for my mother...

One of the first signs was anger. My mother simply wasn't an angry person, and when her personality began to change, I knew something was wrong...My sister in law, who was a nurse, saw it too. For almost two years, other members of the family resisted what we were seeing until eventually it became impossible to deny and was medically confirmed. Anyone who has watched someone they love disappear by degrees probably understands the particular helplessness of it...You keep wanting to DO something...you want to find the right doctor, the right medication, the right explanation...anything that might give you back the person you know.

But my mother taught me something about that too...She was actually remarkably fortunate during the last couple of years of her life. Somewhere in her mind, the nursing home had become a cruise ship...and apparently it was a pretty good cruise. She would tell us how wonderful everyone was and how much she loved the way people doted on her. She had also seemed to return to a much younger time in her life, which made conversations with her a strange mixture of funny, fascinating and heartbreaking.

A few months before she died, my mother told me a story from her childhood that I had never heard before. She had been eight or nine years old and accused of something she hadn't done...No one believed her, not even her own mother, although eventually the truth came out and she was exonerated. I asked if it hadn't bothered her that everyone had doubted her and her answer shocked me..."No...I knew the truth even if they never did." At eight or nine years old, my mother already knew something that takes many of us a lifetime to learn...She knew who she was, and knowing her own truth was enough for her. Suddenly, after a  lifetime of knowing this woman, I realized there was an entire person in there I would never completely know. I cherish that lesson because it was the last thing my mother actively taught me...She had spent my whole life teaching me, sometimes intentionally and sometimes simply by the way she lived...and somehow, even through dementia, she managed to teach me one last thing.

Because of my work schedule, I was allowed to visit after hours...and occasionally, particularly late at night or in the wee small hours of the morning, my mother would seem to return to herself. Those moments were harder...She would ask me why God wasn't taking her. Most of her friends were gone...The people she had loved, cared for and nursed through disease were gone...She was tired and lonely and she wanted to go too. I didn't understand until later what might have been keeping her here.

On my wedding day, my mother made Mike promise that he would take good care of me. He promised...but she grabbed his hand, tugged forcefully on his arm and said, "No!...Look me in the eye and promise me." So he did. My mother had good reason to worry...She had spent the better part of two decades watching me live a life that left her wondering whether I would ever truly be safe.. In the days after the wedding, my sister would come into her room and find her staring at our wedding picture...She believed Mom was trying to convince herself that I was finally going to be okay. 

Two months to the day after Mike made that promise, my mother died.

Dementia hadn't erased her...The mother who worried about me was still there...So was her humor, her personality, her concerns and even her modesty. She particularly didn't like being bathed, so I explained that bathing was part of the cruise line's platinum service package and I really didn't think we should downgrade her...She considered this and agreed to be a little more patient about it. That may sound like a small thing, but I think about it often because dementia had changed my mother's reality without changing the fact that she was a human being living inside that reality. The mother I had known was becoming harder and harder to reach...but there was still a person there. Maybe part of loving someone with dementia is becoming willing to meet the person who is there instead of spending all of our time searching for the person who used to be there.

Years later, when we created Missed Path Sanctuary, I found myself thinking about what my parents had done all those years ago...I wanted to do some version of it..And I had horses. Anyone who has spent time around our miniature horses knows what happens when one of them walks into a room...faces change...people reach out...they laugh...they talk. Something about this tiny horse appearing in the middle of an otherwise ordinary day interrupts the world for a moment..And sometimes that moment lasts.

Recently, we took Annie to visit a retired nun named Mercedes. Mercedes was housebound, bored and longing to go home...She told me she would be going home soon. At the time I assumed she meant her actual home, although looking back, I'm not entirely certain that's what she meant. But when Annie arrived, Mercedes was completely present...She doted on her...fed her treats...told us stories about her youth and about the man she called her "soulmate." She loved the way Annie interacted with her, and she understood that people had gone to considerable trouble to bring this little horse to see her. She felt special.

Her caregiver told me that for days afterward, Mercedes continued talking about Annie...and remembered her by name. What made that so remarkable was that she had lived with the household cats for two years and couldn't remember their names...But after a single afternoon together, she remembered Annie. A month later, I checked again...She still remembered her.

I don't pretend to know what happened inside Mercedes's mind that day...I don't know why Annie found a place there when so many other things couldn't, and I certainly don't believe that bringing a miniature horse to someone with dementia is some magical answer to an extraordinarily complicated and heartbreaking disease. But Annie reached her...and maybe that's enough.

We tend to measure the value of what we do by how much we accomplish...How many people did we help?...How much did it cost?...How long did the effect last?...Could the same resources have accomplished more somewhere else? I understand those questions...Running a nonprofit means I have to ask them all the time. But horses have taught me something about subtlety...Sometimes the smallest interaction creates the biggest shift...a breath...a touch...a horse choosing to stand beside you...a little mare taking a carrot from the hand of a woman who has spent much of her day wondering when she can go home.

We can never know exactly where those moments go once they enter another human being...Mercedes remembered Annie for weeks...someone else may forget her ten minutes after she walks out the door. That doesn't mean the ten minutes didn't matter. For those ten minutes, someone may have felt joy instead of confusion...curiosity instead of boredom...connection instead of loneliness...For those ten minutes, someone may have felt special...loved...seen.

My parents understood that long before I did...They couldn't change the circumstances of the people they visited all those years ago...they simply believed those people were worth showing up for. So they showed up with cake and carnations.

All these years later...I suppose I'm still doing what they taught me.

I just show up with Annie.

—by Marc DiFrancia, Co-founder