Category Archives: dementia

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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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tangerines, squirrels and angels

It was pointless to ask my father direct questions about anything of substance. Subtlety was required – a slow, gentle curve of a question – never approach straight on. Anything I learned about him that was at all personal came only on his terms…when he was ready, and it always came quick…like a shooting star. With a blink of the eyes, it was gone. It’s a hard way to get to know someone, but in the end, deeply meaningful, because the stories come in precious and unexpected little nuggets.

Sometimes dad would join me as I sought refuge out in the backyard of his home – the place that had embraced my entire childhood. Along the west-facing fence was a row of Liquid Amber trees that generously gave us relief from the scorching sun. The trees grew just below the power lines that crisscrossed every backyard, up and down the street. Mourning doves perched on the wires, singing their gentle chorus, gratefully calmed the sparks that often crackled between dad and I. It seemed we were “striker” and “match” for each other, although thankfully, after more than 40 years, the friction between us had finally begun to wear down. A slight, cool breeze calmed the fiery afternoon. Two dark green lawn chairs with woven, plastic webbing, that had been in the backyard as long as I could remember, provided us with familiar seating.

We sat side by side, in front of a tangerine tree that was planted to mark my birth. Currently, it was at the center of dad’s venomous war with the squirrels, over ownership of the sweet and sour, deliciously juicy fruit: a battle they waged every season. The squirrels’ method of devouring dad’s favorite fruit was, according to my father, a personal affront. They’d jump down out of the taller Liquid Ambers nearby and sit at the very top of the tangerine tree, harvesting only the best sun–ripened fruit. That would have been crime enough, but their technique was unforgivable, and brilliant. They’d gnaw a little hole in the perfectly ripe fruit and then suck the entire contents out, leaving the empty, round, skin intact. Then they’d just toss the empty fruits, which lay scattered all around the base of the tree. From a distance they looked like whole tangerines, and I’m sure that dad, with his failing eyesight, had been fooled many times.

I imagined the squirrels safely up in their roost watching dad curse as he found another empty shell of his favorite, late afternoon snack. This was their eternal feud, but dad had a plan. There was a big stack of old aluminum-framed screens discarded when the original wooden windows had been replaced. He subscribed to the belief that nothing should ever be thrown out…so they’d been stacked in the back shed behind the garage for about ten years. He had this amazing and complex scheme that involved suspending the screens above the tangerine tree so the squirrels couldn’t jump down to it from above.

I told dad that I thought he was actually training the squirrels to perform ever more sophisticated aerial feats, adding, “They’ll just climb around to the underside of the screens and carry on with their plundering.” He snorted his disagreement to me at about the same time that a squirrel with impressive agility, demonstrated my point by climbing up a large tree trunk backwards, with its head pointing down and bushy tail jabbing upward, all the while scolding dad for ever considering that he might come out the victor. Dad just muttered and waved his hand as if to dismiss both the squirrel and me.

In the midst of all this talk of tangerines and squirrels, dad suddenly veered off into an entirely different conversation, stating that my mother was an agnostic and he was an atheist. “Where did THAT come from?” I wondered. I restrained myself from turning to directly face him as he brought up such an intensely personal subject. Instead, I listened as unobtrusively as possible. It was so rare to have this kind of conversation with him – even intense listening could cause him to clam up and change the subject.

I spoke softly…“If you’re an atheist, doesn’t that mean that you’re certain there is no God? How can you be sure about it? How do you know for sure?” After a long pause, my father, born in 1914, told me that it happened when he was in his twenties – when he became aware of what was going on in Germany, then spreading throughout much of Europe, ahead of World War II. In a tone I’d never heard from him he replied, “A lot of us felt it,” – “us” being American Jews, born of Jewish immigrants who’d fled Eastern Europe during the pogroms. He told me that initially he felt betrayed by a God that would allow such slaughter, and this betrayal turned into a certainty when he learned that it was happening again: such destruction of life and property proved to him that there couldn’t possibly be a God. As he described this shift in his belief, I felt his heartbreak, his utter sense of abandonment, and his unequivocal knowing that he was completely on his own; a belief he lived by, ever after. Based on the beliefs…or maybe more accurately, non-beliefs of my parents, I was left on my own to develop any sense of religious or spiritual faith that I might yearn for. And I did…I had a deep yearning for such guidance.

Over the years, as I watched my father turn down help again and again, I came to see that it was the only way for him, if he was to continue with his conviction that he had to “go it alone”. There was no one else but him: no one here, which I can imagine stemmed from the fact that at the age of eleven, and being the eldest boy at home, he became the male head of the household after his father died of tuberculosis, and, there was no God above that was going to help him either. I also slowly realized that he saw any acceptance of help, as an admission of vulnerability that he could not allow, could not bear.

Being the child most like him in this regard, I was a seasoned student of this mindset, having grown up in his household under his stern rule. As a young adult, I’d become quite skilled at the very same approach to life: the belief that I could, and moreover had to, carry whatever came my way, all on my own.

A few months after my 31st birthday, I was in a car accident so horrific that when the first Emergency Responder showed up and found me wandering around crazed and barefoot in the darkness, soaking wet from the pouring rain, he looked at me and then at my car and said, “Whoever was in that car…they didn’t make it. There’s no way anyone could live through that.” But I was the one in that car. And I did make it.

It took a lot of years for me to shed that big, old, shell of a belief I inherited from my proud father that demanded, “I gotta go it alone”. I realized that clearly, the fact that I did live through that accident meant I DID NOT GO IT ALONE. It was true what that First Responder said – there’s no way someone could live through that – but I did, somehow. I had help – and lots of it. They were there. The angels. To this day, I don’t exactly know what I mean by angels…but it’s the word that always comes. I can tell you for sure that in the midst of that one conversation, as dad and I were taunted by tangerine-marauding squirrels, it never dawned on me that I would ever wonder if angels might be looking after my father.

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In the years following my mother’s death, my father just kept making adjustments…as he’d done his entire life. Whatever fate fell to him, he would meet it head on. And so it was with becoming a widower; figuring out how to live in his home, alone, after sharing it with his wife and three children for fifty-six years. As I watched dad navigate his way through the last years of his life, I slowly began to realize he was clearly surrounded by them – angels. He was approaching his nineties, his vision was declining rapidly, and so was his hearing. Dementia was hanging around, just on the edge of his world, showing up now and again.

Having given up driving, dad did a lot of walking. He lived just four doors down from a busy street that he used as his main thoroughfare. One day, returning from a trip to the bank, he misjudged the height of a curb and instead of climbing back up to the sidewalk after crossing the street; he tripped and fell, hitting his head on the concrete. There he was, laid out on the ground, inches from where cars were making right turns. One such driver saw my father there on the sidewalk and pulled over. As he approached, my father ever on the alert, shouted as menacingly as a skinny old man could,

“GET AWAY FROM ME!” fearing that he was about to be mugged or attacked, when he was down and seemingly helpless.

The driver leaned over to help dad up.

“I SAID GET AWAY FROM ME!” dad hurled, as blood ran down his face.

The man approached dad again, who took a swing at him, even as he lay on the ground.

Finally something let loose and he allowed the man to help him up, but then he turned again, preparing to throw a punch in case he tried to take advantage of dad. This angel offered dad a ride home, but was vigorously refused. As the adrenaline began to wear off, he felt the chill of exhaustion sink deep into his bones and softened to the man. Eventually my father agreed that he could use a little help walking home, but refused to get into the stranger’s car. Disoriented at first, dad wasn’t even sure where he lived. Luckily he was only two blocks from his home, and in the end, recognized his dear old house at 5219. He allowed the man to walk him almost to the front porch and then sent him away.

Miraculously, dad didn’t break any bones, or suffer a concussion. He did have some bruises, but all in all, how was that possible at his age? Later on he would recount the part that he was most proud of: he remembered how to roll into a fall, instead of bracing himself with his hands. He called it “the tuck and roll,” and sang it out slow like a chorus from some old favorite song. It came from his training as a fighter in his youth; both on the streets and in the gymnasiums in his rough and tumble 1920’s Detroit neighborhood. With Jews on one street, Italians on the next, Irish around the corner – fist fighting was a way of life.

There are many stories about my father in the last years of his life that are true mysteries…so many “near misses” where he could have been terribly injured or even lost his life, due to his fierce sense of independence which demanded that he do everything for himself.

Who helped dad, who helped me – that is the Great Mystery. I don’t need to understand it all, and at this point in my life, what I say is, YES: the angels come, whether or not you believe in…anything.

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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.

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just one dance

One of the unexpected blessings that bubbled up to the surface during the last few years of my father’s life, as dementia began to move into our world, was his propensity for outbreaks of shear silliness and joy. The hard times between my father and I began when I was in early adolescence and those explosions and heartbreaks overshadowed and sometimes completely eclipsed many years of our relationship. I spent a lot of my adult life bracing for what might be the next confrontation with him – so this turn toward lightheartedness was an incredible relief.

On this particular evening, we’d taken him out to dinner and at this point in his life, it was common that he’d get wound up from the excitement of it all, in the same way that young children do. We always wanted to take him to some place new, but quickly learned that what he really wanted…what really pleased him was to just go to the same restaurant where he’d order the same thing. The whole excursion was incredibly surreal because it would go exactly the same way EVERY TIME.

As soon as we walked in, dad would say with great concern, “There’s no one here. That’s rough on business.” Often, the place would have plenty of customers, it’s just that dad couldn’t see them or hear them, and since he had owned a small business himself, he felt deep compassion for the owner. Sometimes my sister and I would offer to count the customers for him so he’d know that the guy was going to be alright, at least for one more night. We’d count out loud, stating where they were sitting, and how many people were at each table. He’d been there so many times; he could picture it in his mind from when he still was able to see the place. It would put him a little more at ease if we did this…so we did.

We always sat in the same spot; we had to sit at the table with the best lighting because dad’s eyesight was so bad, but not near a window because he’d get a chill from the draft. We’d go through the whole menu and he’d think about it for a time, and then say, “How ‘bout a turkey and cheese omelet,” like it was a grand, adventurous choice…which I guess it was, since he couldn’t remember ever having it before.

Every now and then we’d try to get him to agree to something else, partly just for us, just for the novelty of it. For some reason this one item was fixed in his mind – he just loved that omelet. It came with LOTS of melted cheese and this was the crux of the problem. Miraculously, somehow dad would get a bite of the omelet on his fork even though he couldn’t see what was on his plate, but then the melted cheese would string out in one continuous rubbery strand, from the omelet to the fork to his mouth and everywhere in between. It always happened, it was always a mess and Dad hated when we’d try and clean up after him while he was eating. The worst part was that my sister and I would have to avoid eye contact with each other because it was such a ridiculous scene and if we caught each other’s eye…we’d start laughing uncontrollably. And that REALLY annoyed dad.

We’d just arrived home from one of these outings. Dad was wound up from the excitement of it all, and also overly exhausted. He’d had a great excursion out with his two daughters, had an opportunity to talk a little about the plight of small business owners and now we were home. We knew the best thing would be to get him to go to bed. That’s what he needed to do. But. He wanted to hang out with us some more.

Dad was a tough nut to crack – he didn’t take well to offers of help or change, even positive change, especially from his children. My sister, who’s a musician, was great at finding some of dad’s favorite music and figuring out ways to incorporate it into his daily life. She was as stubborn as he was and wouldn’t give up. She’d found some radio stations that played music from the time when he was a young adult, which would have been during the ‘30’s. Even while resisting, if the music was right he couldn’t resist it for long – he loved it so.

We turned the radio on and a great old song poured out into the living room. I just happened to be standing right next to dad. He put out his arms as if to start dancing…and then as if a marionette artist had pulled on some strings lightly, I put out my arms, and in yet another miracle, dad and I were dancing… TOGETHER.

My teenage years were in the 1960’s, so I never learned to partner dance…the few times I’d tried it with people from my own age group, it was a frustrating and sometimes embarrassing experience – so I steered clear of it. The problem was that I didn’t know how to lead, or to follow. Well, all of sudden I found myself dancing with my father, who I’d heard was just as good a dancer as his younger brother who was a fabulous dancer, but I’d never seen my father dance.

And here’s the thing: my father knew how to lead – even me, his headstrong, chip-on-her-shoulder, eldest-daughter. I could feel, ever so subtly, which way we were going to move, just before we changed direction. It was an amazing feeling. I, who loved to dance, had never come across a partner who had enough grace or rhythm or confidence in their own dance skills that I would be willing to surrender to the experience of dancing with someone else. AND HERE I WAS DANCING WITH MY FATHER – MY ARCH ENEMY – MY NEMESIS. As we were dancing, as I was feeling this incredible amazement, I heard in some part of my consciousness, “Of course you and your father dance so well together…you’re so much alike.”

As quickly as this time-out-of-time moment had begun, it ended. The song was over and we looked at each other.

I looked my father square in the eye, saying, “Wow, dad, you’re a great dancer.”

He looked right back at me and said almost sternly and with a tad bit of surprise, “So are you.”

Then he smirked a little, let go of my hands, melted onto his dear old friend, the couch, and throwing his hands up into the air said, “Phew! I’m beat!”

The mystery blended back into our everyday world. My sister and I somehow got him to go to bed. But the magic of those few moments of dancing with instead of bracing against that amazing old man is something I will never forget.

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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.

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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.