no stopping him

My dad was the first resident in ten years to escape from the “secure” assisted living complex that we’d moved him to a month or so after his 94th birthday. My sister and I had taken a preliminary tour of the place and then my brother joined us for a more detailed inspection before meeting with the Director. Aside from standard requirements about staffing, livability, etc., we were looking for places where dad could make an escape; because we knew him, we knew that he’d try.

He was a fighter…here’s what he used to say about death, although he’d never use that word: “I’m gonna fight it to the end” he’d snarl. And he did. Underneath this story of the man who broke the ten-year record, is woven the tattered fabric of our collective heartbreak: a glimpse of what life is like for millions of our elders…many of whom can’t or won’t attempt an escape like my father…they’ll just quietly waste away, right before our eyes.

Dad was just plain tough: he was the eldest of the four children still at home, who lost their father to tuberculosis when dad was eleven. They lived in dire poverty in Detroit during the Great Depression of the 1930’s. At age ninety-four, my father was strong and relatively healthy despite the fact that he had dementia, incontinence, was mostly blind from macular degeneration, and fairly deaf, although he didn’t think he was. With all these seeming infirmities, his daily routine right up to the day before we moved him from his home of sixty-one years, included walking one-mile, round trip, to the donut shop once or twice a day, or three times when he’d forget he’d already been there earlier. He was stubborn, cantankerous and basically unstoppable. It had gotten to the point where we could no longer find a way for him to remain in his home and be assured of his safety. That’s before we realized that no one could really give that kind of assurance, even when they said they could.

After our reconnaissance of the assisted-care facility, we met with the Director of the complex and told him we’d found two places that we thought were weak, as far as security went. Already he was eyeing us with a particular kind of look. We described a place in the backyard where the hilly landscaping was so close to the concrete-block fence, we knew dad would drag a metal patio chair to the fence and climb right over it. You should have seen the Director’s face when we told him of the problem. He assured us that no one had escaped in ten years, that they had a “state of the art” alarm system, and that dad would be safe. Next we told him that we’d found a gate that didn’t have a lock on it and dad would jiggle it until he figured out how to open it. Again the director made his assurances. He still wasn’t getting the picture, so we gave him examples of dad’s problem-solving technique, knowing that dad’s new problem to solve would be how to get out of there.

My father had refused to leave a house key hidden somewhere outside his home because he was afraid of an intruder finding the key and getting into his house, and truthfully he wouldn’t have remembered the key when he needed it, anyway. When I asked dad what he’d do if he locked himself out, he said with a bit of a growl, “I’ll just kick the door in”: this from a man in his nineties.

The day finally came when he did lock himself out. The back door was a lightweight, inexpensive hollow-core door and at first he tried to kick it in, but weighing only about 115 pounds fully dressed including his shoes…he just couldn’t bust the door down. That didn’t stop him: he wandered around in his garage and found a crowbar, somehow dragged it to the back door and smashed a hole in it. Then he reached his hand through and unlocked it.

The next time he locked himself out, my sister got a call from the neighbor across the street saying that she had just happened to look out their window to witness dad standing on a 5-foot aluminum ladder just about to climb in through his kitchen window. Luckily her husband was able to interrupt dad’s attempt, which if successful would have landed him right in the kitchen sink.

His third “problem-solving technique” was the proverbial last straw. After the crowbar and ladder incidents we scoured the garage and removed all the tools that we could find, along with anything else that seemed like something dad might hurt himself with. The next time he locked himself out, even after our precautions, somewhere he found a hammer and used it to break the window next to the front door, reached through the broken window and again, let himself in. The same neighbor just happened to see dad reaching his hand through the window and called us. Miraculously, he was not injured.

We knew, as soon as we heard about this last episode, that we had to move him out of his house. We’d been walking a fine line for months by then, trying to find a safe way that he could stay in his home, and with the help of some loving, dedicated caregivers, we had come up with many creative solutions for taking care of this rowdy old man. Even in our frustration and concern for his safety, we all loved that dad simply would not give up.

After hearing our stories, the Director realized that maybe it wasn’t just that we were overly protective children, but it seemed like he still thought we were exaggerating, and maybe nuts. One more time, he repeated his line that no one had escaped in ten years and that they’d take good care of him.

Dad wasted no time and began casing the joint the very next day after his arrival. He took the easiest route – forget climbing the fence. Here’s how he worked it: on the morning after he arrived, the first thing he did was simply try to get out the front door, over and over. Every time he pushed on the door, the alarm would go off. The employees got to know him quickly, knew they needed to keep an eye on him, but they weren’t prepared for quite such a rascal. He spent most of his time that first day, in the lobby, and noticed that sometimes the front door was locked but other times it was unlocked, to allow guests to come and go.

Although he did not completely understand how it all worked, the next day, he made a point to stand around and schmooze with the receptionist, while keeping an eye on that front door traffic. Subtly, he edged toward the door until an opportune moment arrived when there were four or five guests coming and going and dad simply blended himself into that little crowd and walked out with them. Luckily the receptionist realized what had happened right away, and dad only made it about 20 feet from the front door before one of the staff escorted him back inside. So, just two days after we moved him in, my sister got a call saying that he had escaped. Luckily he didn’t get far…he just got out. When my sister phoned with the news, she and I both responded in kind: we cheered. He did it! He broke their blasted ten-year record! But the elation was short lived…we knew he was not safe out on the streets and we knew he would keep trying.

Of course we were pissed off at Mr. Director for not believing us in the first place. We were also secretly quite proud of dad for being, well, for being that fighter that made it so hard for all three of us kids to get along with him, but in this case: “Way to go, dad.”

The next day when we went to visit him, he was right there in the lobby, scoping everything out again, no doubt looking for his next escape opportunity. We walked in, and I could tell that he recognized us, but he didn’t make any effort at a greeting. He was leaning on the reception counter with one elbow, looking intently down one of the long hallways. I went over to him and said, “Dad, aren’t ya gonna say hello to us?” “Shhh!” he whispered loudly, and nodded down the hall, not wanting to draw any attention by pointing with his long, thin finger. “See that guy rolling that cart? Shhh! Don’t let him know we’re looking at him. He cleans up around here. I know him. He’s a pretty good guy. See that garbage can on his cart? He must roll that cart outside to dump it somewhere, don’t ya think? I’m thinkin’ I can just climb into that garbage can and hide in it, and then when he rolls it out, I’ll just jump out and take off! Wha’ d’ya think?”

Even as I was concerned for dad’s safety, I loved that he was still not giving up. It was so much who he was. My brother, sister and I later on that day joked that clearly dad had watched the movie, The Great Escape, too many times. He wasn’t giving in. Not just yet anyway.

What we learned was that Assisted Care facilities are not really set up for patients like dad. Much later I learned that he would be classified as “ambulatory with goal-directed wandering”. I laughed out loud when I first heard that term: “goal-directed wandering”. “Goal-directed”…that was dad, for sure. Most residents were unstable on their feet at best, or, used a walker, were in a wheel chair or bedridden: translation – easy to control. And, truthfully, the great majority of the residents were women, who, in a gross generalization, were from a generation of women not inclined to plan out escapes.

We ended up moving dad, trying two other facilities…each time smaller. Over and over we’d tell them how dad was. Each time they’d give us that look, the one that said we were just over-protective children, and that we shouldn’t worry – they’d take good care of him. But they couldn’t. He was too much of a handful for any of them. He needed constant attention because he was strong and healthy – and he was always on the move, when he wasn’t asleep. They couldn’t keep a close enough eye on him – they weren’t used to having to keep track of a man who actually moved around on his own, and they didn’t have the staff to handle someone so active. We couldn’t afford to hire a private caregiver that would be solely responsible for him and sadly, there was even less of a chance that he was going to consistently take directions from any of his children. I could see the writing on the wall.

As there is an ending to each of our lives, his life ended according to his own particular style. In his uncanny way of sensing when there was a possibility of escape, he got up and wandered to a door during a few moments when someone in the third, and much smaller residence that we’d placed him in, had forgotten to reset the door alarm. He wandered outside, enjoying the freedom and fresh air that he so loved…and fell. He broke his hip and when they x-rayed it, the doctor said that the joint had completely shattered…he would never walk again.

He left his mark on the hospital in those first days. While heavily sedated with pain medication, he was approached by what appeared to him to be strangers who were about to mess with him and he kicked not one, but two nurses in a row, with his good leg: a fighter to the end. Less than two weeks from the day of his fall, when on some level, he knew that it was finally, truly time to go, he went so quickly that the caregiver that was sitting with him didn’t even have time to call for medical help. Even with death, in the same way we’d known him to be in every situation, when dad made his mind up to do something; there was no stopping him.

The Queen of the Flowers

I met Teodore Thorvendal, a tall, lanky, ninety-five-year-old Swedish man with a sometimes explosive temper, while living in Seattle in the early 1990’s.

Soon after his wife Crossed Over he lost all of his short-term memory. Every morning when his nephew Stefan, a new friend of mine, came out of his bedroom, Teodore would lunge at him, thinking he was a burglar. Somehow Stefan would convince his uncle again, who he was and why he was living with him. This happened every single day until after a year; Stefan couldn’t take it any more. He was going back home to Sweden and on this particular day, I would be driving Stefan to the airport.

I knocked on the front door and I was relieved that Stefan answered. I was afraid of the old man…the one other time I had come to the door of the house, he pulled the curtain aside an inch or two, peered out at me through the window, wild-eyed, and cursed at me to get off his property. So yes, I was anxious when Stefan invited me to come inside on that last morning. They were just finishing breakfast and he motioned for me to join them in the kitchen. Timidly I followed him in and there was the crazy old man glaring at me. I sat there while they both finished eating; metal spoons scraping up the last of their cereal the only sounds that broke their silent meal. Before I could stop him, Stefan jumped up and said he’d go out and load his luggage into the back of my borrowed truck.

That left me alone with Teodore. He put his spoon down on the table, pointed his long, crooked finger at me and said, “Please. Come with me.” I was afraid – afraid to go with him and afraid to disobey him. Against my better judgment, I followed him through the dark living room and out onto the front deck; the same deck I’d stood on when he cursed at me and told me to get off his property.

“She planted them every summer,” he said, speaking to me softly, shaking his head. “Look at them now – they’re all dead.” At first I didn’t know what he was talking about – I was nervous being so close to this man that could become so agitated without warning. I followed his gaze and realized that the entire deck was lined with planter boxes that were filled with dead bedding plants – flower heads in tact, but stone dead. “Please,” he begged me, “please plant them.”

How did he know? How did this man that I had never spoken with, this man whom I was still not sure was safe to be around at all – how did he know that my most favorite thing in the world was to plant flowers and tend them? We stood there silently, then Stefan found us and he and I were off to the airport – Teodore’s request went unanswered.

Back home from the airport, I replayed the conversation with Teodore in my head. Did he really ask me, a total stranger, to plant his flower boxes for him? It seemed that he had, and I decided to do a good deed. The next day I rode my bicycle to the nursery near my house and loaded up my saddlebags with potting soil and bedding plants. It was an unusually hot summer day and by the time I rode my bike back up north to Teodore’s house I was sweaty and tired. And, I have to say, quite proud of myself. I was helping this “poor old man” with his dream to somehow bring back part of his wife’s memory by replanting her garden.

I leaned my overloaded bicycle up against the edge of the deck with a bit of a thud. The front door flew open and there he was; the crazy, wild-eyed man screaming profanities at me, demanding that I get off his property. I was mad now. Hadn’t I just spent my own money, not to mention my sweat equity, to get all these supplies? Isn’t this what he had asked me do? Yes, I was afraid of him, but now I was pissed off. He wasn’t going to beg me to do something and then threaten me when I did it. It was too late – I’d had it with him. I flew around in a rage and told him it was none of his business, that I’d bought the plants after he’d asked me to, and now, like it or not, I was going to plant them. I glared at him hard. We stood there for a few moments, both of us stubborn and fierce. He wheeled around, went back inside and slammed the door.

I have to tell you that this was a first for me. I had never challenged someone, anyone, like this before. There was something about him, or about the combination of the two of us that gave me the courage or the strength or the foolishness, to stand up to him…or maybe it was fueled by my big, fat, bruised ego.

I began working on the flower boxes, and as always, I found the peaceful rhythm of hands-into-dirt, plants-into-soil. I calmed down. I forgot all the craziness. Out of the corner of my eye I saw that he was peering at me through the window. Again he’d pulled the curtain back and was following my progress. When he saw me looking at him he threw the curtain shut again. Sometime later I heard the door open. I paid no attention. Finally he said quietly, “No, not there. Don’t put them there, they should go over in that one,” pointing his long gnarled finger across the deck. Glaring, I told him it was my garden and I’d plant them where I wanted. He slammed the door again and watched me from the curtained window.

After dragging a hose around from the backyard and thoroughly watering these new, young plants, I stood back to view the garden. The door opened and he spoke. His demeanor had changed – back to the imploring voice he’d used on me when he first asked for this garden. How was he going to take care of it? He was an old man; a weak old man and he couldn’t drag the hose over, or lift a full watering can…the flowers would just die. He was wringing his hands. Still suffering from a rather large and bruised ego I stared him in the eye and said coldly, “It’s my garden. I’ll take care of it.” I walked down the steps, climbed onto my bicycle and rode away without looking back.

Seattle was having a true heat wave and I was concerned about the newly planted garden. Two days later I rode back up to Teodore’s house. What would I encounter with the old man? Was I in real danger? My love for the young plants propelled me to return in spite of my fear of him. They needed water. This time I snuck quietly up onto the deck. Maybe I could water the plants without him knowing. But wait – not only had they been thoroughly watered, they had all – every single planter box – been carefully tended to. As I surveyed the garden, I heard the front door open. For some reason he didn’t yell at me, he just watched. I ignored him. He remained at the door, watching me through the screen. When I was satisfied that the plants were going to live for a few more days I turned to leave. Changing my mind I faced him. He tensed. Fear, then rage, flooded his face. I tensed too. Slowly I approached him. Part of me was screaming, “Are you insane? RUN! Get away from him, he’ll hurt you!” Then his face gentled and a smile formed in the most miraculous way. “Well, if it isn’t the Queen of the Flowers,” he murmured in a beautiful, deep, Swedish lilt. “The Queen of the Flowers.”

For the rest of that summer I visited Teodore most every week. He cared for the flowers – never have I seen such a well-tended garden. The moment any impudent weed had the nerve to appear, Teodore’s long fingers plucked it out. Somehow he found the strength and balance to carry watering can after watering can to quench his beloved garden’s thirst. My visits became social calls, not garden interventions. We would sit in his dark, cool, living room, he in his circa 1960’s plaid, upholstered, rocking chair. With eyes closed he would recount story after story of his childhood in the countryside of northern Sweden: the log over the creek that he and his friends would run across, the adventures they would have. Eventually he shared with me that each night before he fell asleep he’d pray that he’d awaken in the morning so that he could care for the garden. He told me he knew that’s why he was still alive, and that he was happy to be alive. In all other endeavors he continued to have absolutely no short-term memory. How could he remember me? What, or who, did he see when he looked into my eyes?

Each visit began with me approaching the front door. He’d draw the curtain back peering out, fearfully. The curtain would drop, the door would open an inch, and before he spoke, something would happen. I’d look into his eyes, he’d look into mine and after a moment he’d sing out, “Well, if it isn’t the Queen of the Flowers.”

It’s been over twenty years now since I met this remarkable old man. The experience has woven itself deeply into my bones…into my psyche. It’s about aging, about how our minds forget and also what they can remember; it’s about what’s beneath fear. And when I moved back home far from my current life, to help out my aging father, who coincidentally (?) was named Ted (Theodore) and lived to be ninety-four, my time with Teodore was patiently waiting there to guide me toward finding a way to connect with my father who had begun his own long journey into forgetting.

To listen to a radio interview I gave on The Story, about The Queen of the Flowers, click HERE.

grace AND dementia in the same sentence

Maybe you cannot imagine these two words linked in the same sentence: grace and dementia. The more time I spend with people who are going through a shift in the way they perceive their world, the more grace I discover.

Please. Dip your toes into the remarkable stories of the ones I have come to know. Many of these stories are about my father. He was and still is, the one who is teaching me the most about the landscape of dementia, even though he’s been gone now for years. There are others as well…other grand old ones with great gifts for me – treasures squirreled away in their twinkling or terrified eyes, in their enormous hearts, whole or broken-open…always they come bearing gifts.

The Queen of the Flowers, is the tale of me as an unknowing wanderer who ends up at the doorstep of a man with absolutely NO short-term memory, and how he and I found our way deep into each other’s hearts. This man, Teodore, gave me a crash course in dementia before I’d ever heard the word, before I knew there was such a thing as short-term memory loss. Our time together was a graduate degree in dementia crammed into the span of one hot summer. And to him I make a broad and low bow for the gifts that he bestowed upon me; his unknowing, then eager, student.

I hope that you will dive into this world that continues to bless me. I hope that sparkling tears will well up in your eyes and maybe roll down your cheeks. I hope that you laugh out loud too. All of this and more wait for you inside this world that our culture has turned away from, for far too long.

Welcome. Welcome Home.