home on either side

The two of us were silent as we got into my car on a wet, gloomy October evening in Los Angeles. This was our last night.

My father was 90 years old. I had moved home four years earlier to help my folks out, thinking he was getting ready to Cross Over. In an ironic twist my mother ended up going first, leaving my father and I to try and sort out the mess that our relationship had become.

I never dreamed it would be so hard to drive away from him. I had planned on leaving earlier in the day, but couldn’t face it. Instead, I took so long finishing the last bit of packing that it got too late. I called him close to dusk to see if he wanted to have dinner one more time.

We had gone through a lot – we who had continued to eye each other like two wildcats, never wanting to expose even the slightest bit of vulnerability; pacing, staying low, ready to pounce if need be. We had each come to our own personal breaking point in the presence of the other. Slowly, imperceptibly, we began to see each other, see that most of the reason for our clashes was because we were actually so…..much…..alike. We had come to a miraculous place, a place I’d never dreamed possible while he was still alive.

We sat in my car and once the doors were shut, were surrounded by silence: car becomes sanctuary. Rain lightly tapped on the roof and windshield. Drops coalesced on the glass until they broke loose and slowly rolled down out of sight. The whole world was weeping for us, in case we lapsed into stubbornness, not wanting to cry. But I couldn’t hold back and tears began to slide out of the corners of my eyes, rolling down my face. I had no idea this is how it would feel to leave him.

Always in the past I had left, slamming some door in my heart, all tied up in knots, never sticking around long enough to let either of us soften up. It took four years and two deaths – two in one year, to wear us down: my mother, then months later his brother. We went through this together. My brother and sister did too, but they came in from out of town for these deaths. Dad and I, we somehow found ourselves on the same side of a line – a surprise to both of us.

Staring straight ahead, sitting in the dark shattered by the city’s brilliant bedtime nightlights, sheltered within the walls of car-turned-sacred house, he spoke quietly, giving up only two precious words: “Thank you.” I could not recall a time that he had ever thanked me for anything out loud, and so they were shocking words to hear. “Thank you.” As I glanced at him, he slid his hand toward mine and for a brief but endless moment we held hands. I believe that when I looked into his eyes they filled and maybe even overflowed.

Still it took me most of the next day to leave. I called to say I was on my way. He was standing on the front porch as I rolled up in my overstuffed compact car. We both knew this would have to be quick – we’d already begun to unravel. I met him on the walk and we hugged each other, something else we just did not do. One last glance, heartbroken smiles, then I climbed into the car that would carry me away from the place I had run from so many times. Now I could barely leave. Rolling down my window I waved and from the rearview mirror watched him walk all the way out to the sidewalk, waving, waving, even as I turned the corner.

I sobbed as my dear, humble little car carried me away.

Hundreds of miles and the moon began to rise. Amidst the wide open swath of land we rumbled through, She, that sometimes shy old woman, appeared over the horizon, enormous and deeply colored in her brilliant wash of light. So gigantic was she when we cleared the first bend in the road that gave her to us, I exclaimed out loud. We were headed, my car and I, away and toward. For the first time in my life I had been able to soften enough to allow my heart to gently unfold, and there in that unfolding I felt the tension, the bittersweet tension, of home on either side of me: leaving home to go home.

what HAPPENED to your pants

I really wanted to know what the world looked like through dad’s eyes as his vision continued to worsen. At the donut shop one day we sat at a small table facing each other and I asked him, “Dad, tell me what you can see when you look at me.” He told me that most of what he saw was a silhouette…he really couldn’t see the features of my face any longer. I paused to ponder a world without all the spectacular details that it held for us…but somehow he had made peace with this. Whatever life tossed at him, he found a way to deal with it – he just kept on going.

Once when we were driving, he sneered from the passenger seat, “Don’t try it you son of a gun”, to a driver about to pull out of his driveway into our lane. “How could you see that guy,” I asked. He said he could still see out of the corner of his eye quite well, and he could – he’d caution me about bike riders or pedestrians. His eye doctor had told us it would go this way…even when he couldn’t see straight on, he’d still have his peripheral vision. When he first started back seat driving from the passenger seat, I’d bristle, falling into adolescent thoughts of, “Daaaaad, I KNOW how to drive”.

A bit of compassion began to develop in my heart after being wary of this man for much of my life. I remembered that he’d been driving since he was 10 or 11 years old. He’d told stories of “borrowing” his older brother’s car before he could even reach the pedals. He’d drive it around the block without permission when his brother was at work, sometimes leaving it in a slightly different position when he brought it back. He was young enough that he couldn’t figure out how his big brother knew he’d driven it. My father, almost 80 years later, had given up driving on his own accord, and what an enormous thing to give up, so he was still trying to contribute, to have some say, some purpose – it wasn’t at all about my driving, it was about his “not” driving and trying to find some use for himself. With the crazy behavior of LA drivers, it was good having another set of eyes, even if they could only see part of the story.

I walked into the kitchen one morning as he was organizing the refrigerator, carefully positioning each item after he determined its contents. He slid the milk away from the wall of the refrigerator, moved a bowl of leftover salad – which to my father had always meant a few pieces of iceberg lettuce without dressing – so it was not too close to a jar of mayonnaise. Watching him, I realized why he refused to keep much food in the refrigerator. With enough space around each object, he could “see” the silhouette and feel pretty confident that when he grabbed something he’d get what he thought he saw.

I’d taken to writing him notes because he’d begun to forget what I told him more often than he’d remember it. Where I’d gone or when I’d be home were crucial bits of information, and not knowing these caused him great anxiety. He was too proud to tell me that he couldn’t read my notes…but soon enough it became obvious. As I began to better understand the way that the world looked to him, I learned how to write notes that he could actually read. If I wrote large, thick black letters with a Sharpie marker, and with plenty of space around each letter, he could read a written note. Early on, it embarrassed him to have to read notes written with those big, huge letters, but eventually it was more important to be able to read the note than to worry about the fact that it looked like a page out of an elementary school printing lesson.

By the time that we had our last Thanksgiving meal at his home, the refrigerator was covered with these kinds of notes: one with emergency phone numbers, a list of doctors with a word or two describing what they helped him with, the numbers of his caregivers, the numbers for each of his three children. The ENTIRE refrigerator door was covered with these notes, each one using one or more 8-1/2 x 11 inch sheets of paper and I have to say, it did look insane. Being that dad and his siblings were neither shy, nor quiet, it was inevitable that one of our dinner guests was going to make a comment about the crazy refrigerator door as soon as they entered the kitchen. His younger sister walked in and the first thing out of her mouth was, “What the hell’s wrong with you? What are all those notes on the refrigerator?” My sister and I shrank to hear her speak to him that way…but we were both smart enough to stay out of the middle of their family drama.

My father’s increasingly limited vision, coupled with the dementia that was now becoming a more and more constant companion, caused changes in his eating habits. A few months after Thanksgiving, we had a smaller family gathering at dad’s house for his 93rd birthday. One of his caregivers made him a beautiful feast – an entire traditional Philippino birthday meal, including barbequed chicken and several noodle and vegetable dishes.

The problem was, he couldn’t see what was on his plate; the chicken had a nondescript shape and the rest was just piles of food to him. He’d had no luck with randomly jabbing at things with his fork. I watched him put it down and then he just dragged his fingers around the plate until they ran into something, he’d grab it, give it a little squeeze to try and figure out what it was, then into his mouth it went. This was the first time I saw him pick up his food with his fingers. I completely understood that this was the best, most practical solution that he could come up with – and he was a very practical man – but I knew this was not going to go over well with his brother and sister, aged 91 and 86. Unfortunately my aunt, who was his baby sister, was sitting right next to dad, and she reacted to him like he was a toddler. Before she could stop herself she slapped his hand and chided, “Don’t eat with your hands! Use a fork!” There had to be some kind of grace present with us at that meal, because luckily dad didn’t haul off and slap her back, instead he just laughed at her, and at himself, and kept using his fingers. “Wow”, I thought, “We are definitely in some new territory here.”

Dad and I were learning our way around each other. I joined him in the living room after returning from my morning walk, wearing a pair of pants that I loved. I thought they were beautiful and they were so comfortable. Sewn out of a rayon batik fabric, they were loose and flowing, with large flowers scattered all over. Dad was sitting on the couch with his arms crossed, facing me. He took one look at me and shouted, “What HAPPENED to your pants?” I didn’t know what he was talking about at first but I knew there was an insult in there somewhere. I looked at him and his whole body was quaking because he was trying so hard not to laugh. “I THOUGHT YOU COULD ONLY SEE SILHOUETTES?” I threw back at him. “Oh I can see THOSE pants just fine…WHAT HAPPENED to them?” There he sat with his characteristic tight-lipped smirk, shoulders bouncing up and down as he tried to hold back his laughter. We had arrived at a good place. Instead of taking it personally I could laugh with him as I imagined how they appeared with his vision; big, baggy pants with very large, dark blotches. By this time he’d had more than a few bathroom emergencies where he’d gotten there just a little too late…he was probably relieved to think that he wasn’t the only one. So what else would he say?

are you going to the game

The three of us sit in a lonely row on a long wooden bench. The cushions are lean as if to make sure we will not stay long, and no one will. My sister sits on one side, me on the other. We bookend him in this way to comfort him and ourselves, but we also sit on either side to keep tabs on him a bit, in case he gets out of control. Although it’s not really possible to control him, we always try.

“Where are we?” he asks in the kind of whisper that is louder than regular speech. His brother and sister-in-law turn and give him The Look. “Haven’t I been here before?” he whispers with more volume. Now his younger sister, who sits in the bench at the front of this small, family section, turns with a horrified look – a heartbroken, heart-wrenching look. “What’s WRONG with him?” she begs, whispering even louder.

Yes. Yes he’d been here before. We’d all been here before. Two years ago we’d been here twice: once to bury our mother…my father’s wife of 56 years, and then four months later we buried dad’s youngest brother. And here we are at the cemetery again. My sister and I, we sit with our ninety-one-year old father, possibly in the exact same spot on this long, lonely, bench. Back then my father was not whispering the way young children do, causing everyone close by to stare with their eyes or their entire bodies. Back then, he was so utterly crushed with his wife’s unexpected death, he sat between us, silent. His brother’s death followed so quickly, he was mostly just numb.

We each held one of his baby-soft hands, just like today, but only for comfort, not control. Before mom Crossed Over, there had been a few times when dad had completely forgotten something important he’d said, or we’d said to him – like a slice of time had been thoroughly removed with a small sharp knife. But since Mark’s death, something seems to have snapped.

He’s whispering again, louder than before, “What are they talking about? Where are we?” How do you tell someone who’s brain has already completely refused the information, how do you tell them again, whispering, in the midst of a funeral? It would be hard enough if he was a two-year-old boy, which sometimes is the best model for working with my father these days. We are not working with a two-year-old, but with an old man who often has the attention span and sense of time of that of a young child. We are working with someone whose tired mind simply cannot receive this information; that his strapping young nephew once a top high school swimmer, prize winning triathlete, City of Los Angeles Harbor firefighter, has dropped dead of a heart attack, not on the job, but simply at home.

How can we whisper to dad while Mark’s sister is giving his eulogy, that this generous-hearted man who always kept the wiffle-ball baseball game going at our annual Mother’s Day picnic, even if he had to play all the outfield positions, so that the next generation of little kids could have a game, how can we whisper to dad that we are about to bury this man?

My sister calls to say that dad is acting strange. He keeps asking her if she is going to “the game”. At first she starts all over again, and tells dad that no, we aren’t going to a baseball game; we’re going to Mark’s funeral. Each time she tells him, he hears it as if it was the first time.

Finally we tell him yes; tomorrow we three will go to the game together. And when it’s time, my father somehow knows that he needs to put his good suit on, and tries to remember how to tie his tie, wide with broad but subtle diagonals, and that he has to put his wingtips on; men’s dress shoes with laces, purchased from a younger brother’s shoe store some fifty years ago, black leather with small, delicate perforations in curved designs at the toe and heel. Shoes with real leather soles that weigh so much dad has trouble picking them up, being just 116 pounds fully dressed, including his shoes. Somehow he knows that today he has to wear his dress suit to “the game”.

“Are you going to the game with us?” he asks hopefully, when I come into the living room, dressed in black. “Yes, we’re all going to the game.”

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.