the hardest goodbye

It wasn’t the last goodbye…just the hardest one.

Every once and a while we tried to talk to dad about moving out of his house. Whenever we brought it up, he’d end the conversation almost before it began. He was adamant: he was going to stay in his house and he was going to be fine.

When we finally did have a conversation about it, it was too late. My brother asked dad if he’d ever consider selling his house to live somewhere smaller…a place a little easier to deal with. This time, his face brightened when my brother posed the question, which surprised me – surprised all three of us.

He agreed right away and said he had a great idea. We looked at each other sideways, trying not to make direct eye contact. This seemed a little too good to be true. Here’s what his plan consisted of: he’d sell his house and use the money to buy an apartment house. He’d live in one of the apartments, and HE, (the ninety-four-year-old with dementia,) WOULD BE THE MANAGER OF THE WHOLE PLACE. When he was in his fifties, he’d been involved in building a small apartment house as well as some condominiums. So dad knew some things about rentals and construction.

My brother, to his credit, calmly asked what dad would do if someone’s washing machine broke down. My father simply said he’d call the repairman – a perfectly logical reply. The problem being that at this point dad really couldn’t figure out how to use a phone, let alone find a phone number, or read one for that matter. The conversation quickly deteriorated. It was clear we weren’t going to have a rational conversation about dad moving anywhere. We knew we weren’t going to be able to come up with a plan and talk it over with him. Our hearts sank.

We couldn’t keep him safe any longer. Yes it was about his safety, but it had gotten to the point where we finally, clearly saw that his behavior could potentially cause serious harm to others. This had been true for some time…but one last incident finally made it clear to all of us. It would of course be a tragedy if dad was injured, but if someone else – a caregiver, or a stranger was injured because of dad’s erratic behavior? – No. That’s when I knew in my heart that even though the thought of moving him out of his home was heart wrenching, the risk of leaving him there was clearly worse. This was the first time I was faced with a problem where I could only find heartbreak – as hard as I looked there was no light in the tunnel we were approaching.

The last straw came one day when he and his caregiver were waiting at a busy intersection. By this time, his vision was all but gone, and his hearing was not much better. He began to step into the street and she tried to stop him. He refused to wait; he hated being told what to do and stepped right in front of a moving car. Miraculously, the car was able to stop, and no one was hurt. For this dedicated and loyal young woman, this was the end: she knew she couldn’t keep him safe. It was too dangerous for everyone. He’d done a lot of crazy, dangerous things before this…we all knew our luck, our time, had simply run out.

People told us not to discuss it with him…that it was too late. So we did not speak of it to him beforehand…at all. It was crushing to consider doing it this way: move him from his home of sixty years without telling him? Without notice? Just drop him off somewhere? All of the reasons they gave us made sense…intellectually: the trauma of the conversation could send him into who-knows-what kind of behavior – yes, that was true; my main concern was that he would just up and run-away. He was strong, healthy and walked a couple of miles every day. I could see him deciding to just head out to some place else and getting lost…injured…or worse.

By this time, none of us were living near him. We were left with planning this momentous, life-changing, life-shattering move…over the phone. My sister now was the closest, living just north of the Bay Area. She’d gone down to L.A. to look at some possibilities and then I flew down to look at them with her. It was staggeringly impossible to imagine him living in any of the places we looked at.

We finally chose a place, and honestly, it was only because oddly enough we’d just learned that our aunt…dad’s “baby” sister was also moving into a residential facility. We gave in, to what we knew to be false reasoning: “If they’re moving her there…maybe it will be fine for dad.” We knew it wasn’t true…but honestly we had no other feasible options. We had somehow convinced the management to actually give us an entire week ahead of the date of dad’s move-in. After being faced with 48-hour deadlines, this suddenly seemed to be a luxurious amount of time.

Back up north at my home, I paced back and forth with thoughts churning around and around in my mind – “How could we NOT tell him? How could I not tell him? How could I show up at his house with this plan all ready to go and just drop him off with no explanation?” The thought of it made me sick to my stomach. I knew what that house meant to him; knew what his independence meant to him. Over time, we’d already slowly but surely gotten him to allow caregivers first to visit every day, and eventually he allowed them to stay with him around the clock. Between the incredible creativity of two dedicated young women, and with help from each of us kids, we’d been able to extend the time he was in his home – but that time was over. We all knew it.

As I prepared to make the heartbreaking journey back down to Los Angeles, I took to talking it all out with dad – in my mind. It wasn’t even a conscious decision; it was just all I could do. I told him everything…why we’d finally come to the decision, where he’d be living, what it was like, the good, the bad…I just kept talking to him. Over and over that week as I wrestled with it all, I begged whoever might be listening, to somehow help this stubborn old man know that we were plain out of options.

I arrived on a Saturday, joining my brother and sister at dad’s house. We planned to move him on Monday. He was no fool – even if he did have dementia – he knew we were up to something. It was rare that the three of us ever showed up at the same time.

What we were up to was that we had come to move him: out of his home and into Assisted Living, but not any Assisted Living. We had to move him into a place that was termed “Secure”, meaning a place where basically, he’d be a prisoner. He would be locked in: he wouldn’t be able to get out without assistance from the staff or someone in his family.

It was Sunday now. Dad and I sat on the couch next to each other, the couch that had been his domain every evening when he came home from work, and now at age 94 and after sixty years, it was where my father spent most of his waking hours. The couch had always been his couch…mom and we three kids had to make due with the loveseat and whatever other seating was available, so it was with some sense of honor and also a bit of trepidation that I found myself sitting next to him.

The weather was uncharacteristically gentle; soft early-afternoon light came through the three windows just above my father’s small world, there on that sofa. It was warm enough that the front door was open and cool enough that there was no need for air conditioning. A quiet breeze inhaled and exhaled through the screen door. My brother and sister were off running errands, so we had this time together. We sat there and for some reason, we were silent.

Someone walked by the house talking on their cell phone, loudly of course, and interrupted our reverie there on the couch. Out of that immense silence came this from my father,

“So how much are you getting for the house?”

The question jarred me out of our solitude.

“We’re not selling it dad. It’s your house.”

We sat for a few moments and then,

“How much do you think you could get for it?”

“Realtors leave their business cards all the time – people want to move into this neighborhood – but it’s your house. Do you want to sell it?”

“How much do you think we could get for it?”

“We haven’t talked to anyone, but I think the last assessment was about $500,000…isn’t that insane?”

He let out one of his long, slow whistles. He and mom bought it, brand new, in 1947 for $14,000.

“That’s a lot of money. What are you gonna to do with it?”

“It’s your house dad. If you sold it, what would you do with the money?”

“If we sold it, would I still live here?”

“No……if we sold it, you’d have to live somewhere else.”

“Where would I live?”

I could not believe we were having this conversation. I had to keep telling myself, “Just follow his lead.”

“Well…we’d find a good place for you to live.”

He shook his head slowly. His whole body shifted. It was a small, subtle movement, but he had just slumped.

Again he shook his head and whispered, “It’s too much.”

“The house?”

“It’s too much.”

In that moment I saw that my father, now almost blind from macular degeneration and partly deaf – although he thought he could hear just fine – surveyed his home, his kingdom, in the same way that bats see in the dark. Somehow he used a kind of echolocation to monitor the comings and goings and now, even though he didn’t have to actually get up and walk around to do it – it was still too much.

As a young man, as the man of the house, he developed a whole routine that he went through every single night before he went to bed. He’d start with latching the chain on the front door and then he’d turn off the porch light. Then the swish of the curtains closing, next he’d pull the shades down. Moving into the kitchen he’d turn off the light, cut across the dining room then head down two steps into the den that he helped build onto the back of the house in the ‘60’s. He’d lock the back door, check that all the windows were closed and locked and then pull the curtains. Turning off the living room lights as he passed them, he made his way to his bedroom. Every night for most of his adult life he’d made sure we were all safe, and now, even thinking about it…it was “too much”.

“It’s a lot to take care of isn’t it?” He nodded slowly in agreement.

Somehow it had happened, after all. It seemed that he’d been able to hear the truth that I’d been speaking to him from my cabin far away. He knew it was time. And even though by the next day, the day we were to move him, he would have forgotten all of what we’d just spoken, I knew that somewhere in his heart he’d heard that truth, and, that he was ready. I also knew that he forgave me, forgave us. Still, I knew that tomorrow was going to be the most excruciating day of my life, of all our lives.

I was right – about everything.

Our “story” was that we needed to move him out temporarily in order to do the repairs on the house. Recently there’d been a leak in the bathroom that had overflowed into the hallway. Water on the old hardwood floors beneath the wall-to-wall carpeting had caused those extremely dry pieces of oak flooring to buckle. It was just one more possibility for dad or someone else to get hurt. It was our “story”…and we loved that there was actually some truth to it. In the end, it didn’t change anything about how it all went…but somehow that little bit of truth made the bitter pill of the rest of the untruths a little easier to swallow.

My job on our moving team was coming up with a floor plan. How could we fit his favorite furniture…his old friends…into his room in a way that would yield him comfort, familiarity, and also be open enough so that he would not trip and fall? In his own home, he knew the layout of his furniture like the back of his hand. A new place would be one big “tripping hazard”. I measured the furniture we chose and drew it out on graph paper. It was a wonderful mental distraction.

Our plan was that my sister and I would take dad out to lunch, and the new restaurant we’d “found” was actually the dining room of the Assisted Living residence. While we were eating, and taking our sweet time of it, our brother was directing a moving company to pick up the appointed furniture from dad’s house and place it in his new room according to my floor plan. And then, my brother was going to join us for the rest of our meal. It sounds insane now as I write it – it also sounded insane as we planned it. How does the saying go? “Desperate times call for desperate measures.” We tried to make the best out of our act of complete tyranny. But we all knew that whatever our best was – it was going to be heart crushing.

It was getting to be late in the afternoon. Dad had impeccable sensitivity to the sun’s movement toward the ending of daylight and was getting antsy. He wanted to leave and go home. That’s when my brother broke the news to him.

“Let us show you your new room, dad. This is where you’re gonna stay while they do the repairs on your house.”

“What the hell are you talking about? Come on,” he cursed at us, “Let’s go home.”

This was a plea for help. We were his last hope and, we were his jailers. Somewhere he knew this.

“No dad, it’s really nice. It’ll be much nicer here. They’ll be running saws and hammering at your house. It’s gonna be a mess over there. Let’s go see where you’ll be staying.”

Dad’s face was tight; his eyes narrowed. He looked at me, and then my sister.

“Quit fooling around. It’s time to go,” he said in his gruff “quit the bullshit” manner.

We were running out of time…out of daylight. His macular degeneration meant that when he looked out on the world it was always kind of dim. Now, with the sun preparing to set, in his world it was close to dark. He also experienced what’s called “Sundowner’s Syndrome” which causes people to become quite anxious and fearful as nightfall approaches. With the combination of his failing vision and Sundowner’s, on top of his wanting to JUST GO HOME, he was beginning to look and behave like a trapped wild animal.

He got up to leave the table, but he didn’t know where to go. He couldn’t see how to get out. My brother again attempted to reason with him. They moved out into the courtyard. He was trying to show dad what a nice “backyard” they had. There were tables and chairs and my brother motioned for dad to sit with him at one of the tables so they could talk.

“WHAT THE HELL’S GOING ON? TAKE ME HOME.”

My brother had been raised by this man; a man who lived by the rule of Reason. But Reason didn’t work any more. Now a line of Reason just bounced right off dad. There was no reasoning with him – there was no Reason in the land of his father. It was excruciating.

I left them going at it and my sister followed me. We were both weeping. This was more brutal than I ever could have imagined; could’ve let myself imagine. I heard dad raise his voice, and then my brother, too. I was afraid dad might take a swing at him. Daylight was fading fast.

Again I heard,

“DAMN IT! TAKE ME HOME. WHAT IS THIS SHIT? JUST TAKE ME HOME!”

He was chilled and completely exhausted – beyond exhaustion. At home, he would have been heading to bed by now. My sister and I wandered off again to give them some space, and when we returned to the patio they were gone. We found the two of them in dad’s room.

Dad was sitting on the couch, on “his” couch. His only son, his oldest child, his pride and joy, sat at the other end. Dad’s head was down. His body was slumped. His eyes were closed. He was completely broken. All the fight had gone out of him. The feisty old man was no more. Soft light shining out from the two lamps we’d brought from his living room would’ve been comforting in another situation. For dad, it was dark; he couldn’t see us…physically, but worse, it was dark because his children had betrayed him. He’d been trapped, tricked. Every once and a while he’d lift his head and look toward one of us and say longingly,

“Come on. Let’s go home.”

By now, all of us were completely drained. My brother, just like us, was heartbroken, but he was much less comfortable being anywhere else but in the land of Reason. He was tired and he didn’t know what else to say. Now when dad would repeat his only request, my brother began to lose patience, still couldn’t quite face the depth of the truth that there was no reasoning with this man who had taught him the skill in the first place.

We had to leave him – he needed to go to bed. The rest of his life had to begin and it couldn’t while we were still there. I stood before him and he, a broken twig of an old man, looked up at me. His eyes were dull, unseeing, and unable to bear the possibility that we actually might be leaving him there. I reached out toward him and he slid his hands into mine. They were cold and lifeless.

I bent toward him. “I love you dad. It’s time for us to go. You need to go to sleep now.”

One of the gifts of dementia is that even traumatic experiences sometimes, in the presence of great grace, can quickly melt into the Great Forgetting. Here’s a story about the first couple of days in dad’s new life:  no stopping him 

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BE HERE NOW

I was back down in LA, visiting dad – he was 92. We decided that we should go out to dinner…to celebrate my arrival. Tonight, dad and I were going to the only place he could remember now. Even if I recounted to him other reliable “old standbys”, this is the place he’d choose. He’d always think very deliberately about it like he was really weighing out all the pros and cons…this place always won out. ALWAYS.

It was the same every time: we’d walk in and dad would say, “Oh, that’s rough. There’s no one here.” He’d owned a small business for much of his adult life, so he empathized with “the guy”…the owner. Actually, there were plenty of people in the restaurant, it was just that dad couldn’t see them, or hear them. So then I would start telling dad where all the people were seated. Years ago, this could have pissed him off…he would’ve taken my comments as trying to prove him wrong. But now…his genuine concern for the owner trumped any of those feelings. He’d been there so many times that he could picture each table, as I described to him where it was and how many people were there. It took a great load off his mind knowing “he’s actually got a good business tonight”.

There were so many people there, in fact, that we ended up in a part of the restaurant that we’d never sat in before. I didn’t know how this was going to go…familiar routines had become fairly important these days. I knew that things might go astray…but I was up for a little adventure. Usually we were seated at a “table for four”; and, one that was situated out in the middle of the dining area, with no one close by. Not tonight. Tonight we were seated at a small “table for two”. The seating on one side was an upholstered bench that extended the whole length of the restaurant, and the other side had a chair pulled up to it. I took the bench and dad took the chair.

Soon enough, the owner seated a woman at THE VERY NEXT TABLE. She was literally two feet away from me; she also sat on the bench side. You might be thinking, “Why didn’t you ask to be moved?” if I had concerns about having someone so close. You know how it is, when you have to weigh out the consequences of several situations all piling up on each other? Well, my father abhorred people “making a fuss”…about anything …including/ESPECIALLY asking for special treatment at a restaurant, and, he had dementia: he was unstable. I had to choose my battles. This meant that it was going to be absolutely out of the question for me to suggest that maybe we move to a different table. I knew that things were going to get a little crazy at dinner, and, that this woman, who already had her laptop open and was tap, tap, tapping away, was going to hear EVERY SINGLE WORD that dad said.

Her body language suggested that she had already, in her mind, built tall, one-inch thick plexi-glass walls all the way around her to protect herself from “them”…meaning “us”. She knew there was something a little crazy about us. She just knew it. This is a necessary coping skill when you live in Los Angeles.

The waiter brings the menu, which is quite long…many pages. EVERY TIME we come here dad needs to know what’s on the entire menu, except that he can’t see well enough to read it himself, so I need to read it out loud to him. So I do. I read all the pages to him. The woman next door has begun to reinforce her wall. Then dad says, in the same way he says it EVERY TIME, “I think I’ll have the turkey and cheese omelet. Wha’ d’ya think of that?” Sometimes I try to suggest something else…mostly for my own amusement, but tonight, things are already out of order enough that I don’t even consider this. “That sounds really good, dad.” “Maybe you should get one, too?” he generously offers. “No…I’m going to get a burrito.” “What’s that?” I describe it to him and he makes a very bad face with a few sound effects to go with it. Our neighbor next door begins adding a roof to her mental cubicle.

As soon as the waiter takes our order, dad asks me a question he’s never asked me before. Since I moved back home to Washington I’ve become Operations Manager of a tiny business. Really. Tiny. And, we’re not in a “building”; we’re in a yurt, or as we like to say, a “fancy tent”. But dad doesn’t know about that part. He just knows about the Operations Manager part. He’s very impressed that I have that sort of job, after all the odd “day jobs” I’ve had. I’m an artist and a writer and what he’s said to me for a long, long time is… “Keep your day job.” He likes this “day job” because I actually have a job title that fits into his idea of a real job. Of course everything about this business, beginning at the “fancy tent” is completely out of his realm, but I’m forever grateful that I get to tell him I’m an Operations Manager.

“So, how many employees do you have working for you now?” he asks. I crack up inside, because our company is so small and so alternative that even that simple question does not really apply. But I don’t say any of this to him.

“Well…let’s see. There’s Val in the office, and Jayme in the lab and then we have three part-time people…so I guess that makes five. I have five employees.”

Dad let’s out a slow whistle and says, “Five employees…that’s great.” Our neighbor has set about to make herself a little smaller, so as to get a little more distance from me…us. I take a drink of water and as I swallow, dad says,

“So, how many employees do you have working for you now?” This is a first. Up to this point, I have never had dad repeat something back to me exactly the way he said it before, as soon as he finished saying it the first time. I can’t believe this is happening…in the presence of our neighbor. She is in for a ride.

I realize it’s very possible that dad is going to ask me this same question over and over and over – until our food comes. And they’re busy tonight…so there’s going to be time for this question to be repeated many, many times. I make a challenge to myself: “Lauren, how ‘bout seeing if you can take a breath and answer the question like dad’s never, ever asked it of you before? Try counting everyone in a different order, try adding a little information about what each of the five employees do…this might go on for a while.”

“Well let’s see. There are some people that work in the lab: one person is full-time…that’s Jayme. Then there are two part-time people that work in the lab…Elizabeth and Mackall, so that makes three, right? Then we have one person that comes to wash the dishes…Fred, so that makes four. And then Val takes orders in the office. So, that’s five. I have five employees.”

Dad let’s out a slow whistle and says, “Five employees…that’s great.”

He really did that. And then,

“So, how many employees do you have working for you now?”

We did this MANY more times before our food came. MANY, MANY more times. And, miraculously, by the grace of whomever was “coaching” me that night, I realized that my father was giving me this grand opportunity to BE HERE NOW: My father, of all people.

“So, how many employees do you have working for you now?”

She just kept typing away on her laptop. No, she did not have earbuds in…this was before earbuds. There was no music to distract her. The only body language that let me know that she was, in fact, hearing this looping conversation was that she was subtly becoming more and more stiff in her sitting posture – looking straight ahead.

The waiter brings the food.

By this time in his life, dad’s eyesight has diminished to the point where he cannot see what is on his plate…at all. There are some elders in this position who are willing to be fed, and maybe some that actually enjoy being fed. MY FATHER IS NOT ONE OF THOSE PEOPLE. If I ever tried feeding him, even though theoretically he couldn’t see the fork, somehow he’d instantly put an end to that.

I knew what was coming next.

Dad would find his fork and slide it around on his plate until he found some resistance. Then with his other hand he’d reach out and feel the food, so he could make a plan for how to get it into his mouth. Sometimes he’d decide to try getting the food onto his fork; sometimes he’d just grab some food with his fingers and eat with his hands. But this wasn’t any kind of finger food. This was a turkey and cheese omelet with lots of thick, gooey, melted cheese. He managed to cut off a piece of his omelet with his fork and was trying to use his fork to pick it up. Failing that, he’d squeeze around the plate with his fingers, find the big gooey chunk and pick it up. The cheese would stay connected to the omelet and make a big long, loopy strand all the way to his mouth.

Sometimes I feel like he knew what was going on, and was really enjoying his mental image of it, other times he seemed oblivious to the long, rubbery cheese threads that were streaming up from his plate to his mouth, to his shirt. It was hard to resist “cleaning him up”, but dad had the same reaction to that as he did to being fed. NO WAY. I certainly learned a lot about keeping a straight face under absurd circumstances. He finally felt the cheese hanging off his face and began to attempt wiping himself up. So there was a little pause in the omelet circus.

“So, how many employees do you have working for you now?” he says to me, with strands of cheese still hanging off of his face. I glanced at our neighbor through the corner of my eye. She did not budge. Nothing changed. Why didn’t she move away? Maybe she was practicing her BE HERE NOW. Maybe dad was her guru too.

she was so happy to meet you

First, I need to tell you about Arnold, a self-described “Spare Tire Preacher”. Do you know what that means? I sure didn’t when I met him.

“Oh, you know…when a minister from one of those churches “out a ways” needs a day off…they call me. I’m just an old spare tire…so they can have a day off now and then…nothin’ special, just an old spare tire with a little bit of tread left on me.”

We met in June of 1995 – in Iowa. I moved out there to help a friend and her husband open a café. We each wore many hats in order to make this dream come true… one of my hats said that I was the baker. My friends had lived there for three years and Arnold had become family to them…like a father, or an uncle.

He heard that I would be baking a pie every day for the café, and although we were already becoming fast friends…my pie-a-day assignment sealed our friendship.

All summer long, we remodeled one of the old, vacant buildings on Main St. We had a booth at the local Farmer’s Market on Saturdays so the town-folks could meet us and know what-in-the-heck was going on down at the old vacant insurance office next to the old theater. We sold fresh-brewed, iced, herbal teas dispensed out of one-gallon glass jars, along with fresh-baked cookies and muffins that we were testing out for our grand opening.

Each Saturday Arnold came down to sample our wares and give us his opinion – which was always the same. “These are the BEST I’ve ever tasted!” He was sweet, gentle, kind. White haired with calm blue eyes, humble, generous – it was completely outside of his vocabulary, outside of his consciousness to utter harsh or angry words. It wasn’t that he just kept them stored up inside; he was simply full of love.

In his younger days, he and his wife had owned a nursery together. It was their pride and joy. They worked hard, hard, hard – but they so loved the work and they so loved each other…his eyes always sparkled when he told me stories about the place and about his wife. When Arnold found out about my own love for plants, well, then the stories really started coming. Stories about fruit trees that he nursed from tiny seedlings, stories about grand trees he had met in the midst of his work as an Arborist. Arnold was the kind of Arborist who believed the sole responsibility of such a position was to do whatever was necessary on behalf of the tree he’d been hired to doctor. He always said, “The tree was my boss…not the landowner.” He loved plants, adored trees as if they were family. For Arnold, they were family – and without me saying so directly, he knew it was the same for me.

Arnold was in his 80’s when I met him. I finally convinced him to take me along on one of his Spare-Tire-Preacher assignments. He kept saying, “Oh…it’s nothing, really. I just do my best so the people can have their Sunday Service.” But I knew, in the way that you know when you meet someone with an enormous heart, that even though “going to church” was not my style…I knew that I would be touched by Arnold’s words.

It was hot and steamy, as it is in Iowa in the summer. We drove out to a little town…out in the middle of that land of lush, green farmland with rich, black, soil peeking out on the edge of fields mostly chock full of corn or soybeans.

For me, this field trip with Arnold was a grand adventure. Born into a secular Jewish family, I could count on one hand the number of times I’d ever set foot inside a church. And, I’d only seen “country churches” like the one we were approaching, on TV or in the movies. It was a classic, old, white clapboard church with a tall steeple, complete with a thick, well-worn rope for ringing the church-bell. The grand oak tree in the churchyard whose arms reached out long and low, was ready to hold as many children and their families, as wanted to climb into her gnarled embrace.

Arnold’s sermon was full of love and praise for we, the well-meaning, but sometimes problem-causing humans who came every Sunday to be reminded of how to start again and simply face toward the Light. His eyes watered with almost overflowing tears, his face shone with love for every single person there, and they felt it: simple and profound.

As I began to spend more time with my new friend, he spoke more about his life, and most importantly, about his wife. Whenever he spoke of her, his entire demeanor absolutely glowed. He loved her in a way that I’d never experienced myself, nor even come this close to as a Witness. In the beginning of our friendship his mention of her was only a few words, but even then, the deep and enduring love he felt was instantly apparent.

I was shy, and, as with much of social practices in the Midwest, the approach of anything was slow and steady. That is the pace at which I learned about Arnold’s beloved wife.

In the fall of that year we opened our café and Arnold came down every morning to “make sure that the pie was ‘up to snuff’.” While tenderly patting his belly he’d say, “I just came from seeing my wife and she wondered if maybe I didn’t need to taste your pie every single day. I told her someone had to taste them to make sure they were just right.” His smile was infectious and soothing. My day began at four in the morning with a pretty hectic baking schedule, so I looked forward to Arnold’s daily visits around 10-o-clock, to make sure the day’s pie passed his test.

Sometimes when Arnold sat down, I’d pull up a chair for a few minutes. “My wife’s hair is so beautiful,” he’d say dreamily. “I brushed her hair for her, this morning. She loves it when I brush her hair, it’s almost like she’s purring.” Slowly, over all these months of little bits and pieces from him, and from my friends who’d introduced me to Arnold, I began to get a wider picture of Arnold’s life with his wife.

For much of the time, I’d imagined that he was coming from their home when he spoke of her, spoke of telling her a story or a joke, of watching her laugh or hearing her wonder if he really needed pie EVERY DAY. While it’s true that his morning did originate from their home…she no longer lived there.

Arnold’s wife was in the late stages of Alzheimer’s. I learned from my friends, that Arnold cared for his wife at home for a very long time. He fed her and bathed her and carried her from kitchen table to living room chair to their bedroom. Every day and every night. For over ten years. And finally he could no longer lift her safely…for either of them. I cannot imagine the crushing heartbreak that crashed upon both of them when they faced this stark reality. They had no children of their own…that nursery, those plants, those majestic trees – they were their children and although they lifted their spirits every day – they could not lift Arnold’s wife when she needed to use the bathroom or go to bed at night. And finally Arnold couldn’t either.

By the time I met Arnold, his wife had been in a “home”, to use the word he used, for maybe five or so years. Arnold’s love for her and his incredible intimacy about every detail of her being was so enormous, that when I heard him speak of her, I heard her voice, I saw her eyes twinkling, I sensed her purring as he brushed her hair.

The thought had been rumbling around in me for some weeks now, and finally, in spite of my immense shyness, and not wanting to burden him with any more than he was already carrying, finally I asked. “Arnold, could I come with you when you visit your wife? I really want to meet her.” Instantly his eyes filled with tears – a few escaped and rolled down his cheek. “You want to meet her? Oh, she’ll be so excited. She’s been wanting to meet you. I’ve told her all about you…and your pies!” And with this, he smiled a broad and glorious smile.

We agreed on a day and time when he would finally get to introduce me to his wife – and his wife to me. Just as he’d been speaking of her to me, everyday, he’d also been telling her stories about me, and the café. It was time for we who both loved this dear man, to meet.

At this point in my life, although I’d heard of Alzheimer’s, sensed the fear and tension in the voices of people who spoke of it, I had never met anyone with a family member afflicted by it – and I certainly had never met anyone that was in the throes of the disease, themselves. At least in my circle, and I suppose in our culture at large, at this time…the middle 1990’s, people just didn’t speak of it. Alzheimer’s was mostly something that people did not want to speak of. All of this swirled about within me as Arnold and I drove toward his wife’s “home”. I say it swirled…but it was not something I was consciously thinking about, it was more that my mood was a little more timid, a little more quiet, than other times I’d spent with Arnold. I noticed this…but it was subtle.

After some minutes of silence Arnold shared that when he told his wife last evening when they’d had dinner together, that he was bringing me to meet her today, she was “absolutely overjoyed…beaming with delight.”

“I finally get to meet the ‘love of your life’,” I smiled at him. Boy did he smile back.

As we got out of his car, I realized that the picture I’d had in my mind of her “home” was not at all what we were approaching. This looked a lot more like the “Lutheran Home for the Aging” where I’d visited my 95-year-old Swedish friend, Teodore, at the end of his life. To hear Arnold speak of his wife and their mornings and evenings together, when he said “home”, I saw an individual home…not this small scale, institutional kind of “home”.

We walked down a hallway and Arnold gently knocked on a door that looked like all the other doors along the hallway. As he carefully opened the door, he called out to her with such love in his voice, it brought tears to my eyes. “Here she is! I told you I’d bring her for a visit!” As we entered the room I realized there was a lot that I had imagined incorrectly.

Her room was small but thankfully had plenty of natural light; one window centered in each of three walls. She sat in an unusual chair with her back to us. Arnold sang out to her, “I brought our friend Lauren! Here she is to meet you!” We circled around to face her and in that one moment all my imaginings washed away like someone had poured water on a freshly painted watercolor painting.

Arnold’s wife was propped up in a chair that was an odd cross between a wheel chair and a barber’s chair. Her body was twisted unnaturally into something that kind of seemed like she was sitting in the chair…but not by her own doing. And. She did not move. At all. No part of her moved; not her eyes or her mouth. No movement. Arnold continued cooing to his beloved wife. He spoke to her just as he’d recounted so many conversations to me. Told her about his morning, about our drive over to see her, about the pie he’d just had. He looked at me with tears in his eyes. “She is so happy to finally meet you,” he murmured to me.

Slowly I approached her. She was beautiful in her stillness; shoulder length hair that was a warm, soft white. Gorgeous blue eyes…deeply blue. I began to speak to her, doing my best to speak to the presence, to the soul of this woman who was still alive, but not able to join us in the way that I, at least, was used to being joined. I told her how long I’d been wanting to meet her, told her how much I enjoyed hearing Arnold’s stories about their nursery, and that the best part was hearing how much Arnold loved her. As I spoke, he gently brushed her hair. He finished with a most tender kiss on her forehead saying that it was time for us to leave.

I don’t remember our drive back to the café, where it was now time for me to prep for the next day’s morning bake. I had journeyed to a place I’d never been – and had no context for what I’d experienced. I do remember that when Arnold dropped me off, he turned and thanked me in a barely audible whisper. His beautiful eyes were glistening with tears.

The next morning, just like clockwork, Arnold came in for his pie. He was so excited to tell me about his visit with his wife that morning. I had a little time to spare and sat down with him at his table. “She was so happy to meet you,” he sang out. “So happy!”

“How do you know, Arnold? How do you know that she was happy to meet me?”

It wasn’t that I doubted his word…at all. I simply didn’t understand what I’d witnessed. He told me that because he’d been with her for so many years, so many years before this illness had climbed deep inside of her and taken so much of her with it, he knew her in the most subtle of ways. “She was especially happy this morning…it was because she met you.”

“But how can you know that Arnold?” I asked, tenderly.

“Oh, I could see it in her eyes. You’d be amazed at what you can see when you look into someone’s eyes. When she’s happy, there’s a sparkle there. I know it when I see it. Lauren, my wife and I have known each other for a very long time. There is a language that she speaks with her eyes. I know what happiness looks like in those beautiful blue eyes.”

I visited Arnold’s wife just that one time. Life at the café became more complicated…my first Midwest winter roared into my world and it consumed me in ways that I could not have imagined. And then I moved away from Iowa, from the café, from Arnold and his beloved wife.

In that one visit, for those twenty or so minutes, I was witness to a kind of love, a kind of communication, a kind of presence so profound that I am still sitting at the feet of those two teachers each and every day. Twenty years now, I still sit at their feet.

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?

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.