Tag 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.

by

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.

by

the man we were dealing with

When I first suggested to my father that he keep a key hidden somewhere outside his house in case he locked himself out, he refused, saying that someone would discover it and rob him. Old and vulnerable, leaving a key outside was too great a risk for him. But truthfully, by the time he really needed to have a spare key stashed somewhere; he wouldn’t have remembered where it was. Yes, people told us to put a key on a cord that hung around his neck, or around his wrist, or attached to his belt or belt loop – all great suggestions, IF he’d remember to do these things. But that’s the catch…it was his memory that was part of the problem.

Not to mention that he hated to have things ON him. He’d get rid of anything like that, within minutes, and if he couldn’t unfasten it, he’d cut or rip it off. When I first saw him yank something off his wrist, I realized that he and I were not so different. I could not stand it either and smiled to myself wondering if, at his age, I would be like him. When I was a little girl I so wanted to have a nightgown with lace edging on the sleeve-hems, but when I felt the constriction from the elastic bands in the ruffled cuffs, I found a scissors and cut the elastic off – I couldn’t stand the way it felt.

That first time when I suggested to him that he keep a spare key outside, he said he didn’t need it. I asked what he’d do if he locked himself out and with no hesitation he replied with a sneer,

“I’ll bust the door down.” He was true to his word.

I noticed he did not say he’d go across the street to ask the neighbors for help. He was close to 90-years-old at this point, and busting the door down continued to remain his best, his only solution. That’s the man we were dealing with.

The first time he locked himself out, he dragged the old paint-splattered, five-foot aluminum ladder from the garage in the backyard around to the open, kitchen-window in the front of the house. He was planning to climb through that window but it was a little more complicated than he anticipated. There was a flower box on the outside of the window he’d have to climb across, the window had a screen on it and it was a double-hung window with only about an 18 x 24 inch opening so he would have had to do some pretty fancy yoga to fit through it, and finally, the window was above the kitchen sink; that’s why he needed the ladder to reach it. If he’d been successful, and been able to somehow get through the window…he would have landed right in the sink. Maybe if he was sixteen, or thirty, or even fifty-years-old he could’ve pulled it off, but NOT at age NINETY. Luckily for all of us, he didn’t have a chance to get too far.

“Ellen, YOUR FATHER IS STANDING ON A LADDER OUTSIDE THE KITCHEN WINDOW. I think he’s locked out. Barry’s gonna go help him.” That’s the phone call my sister received from Pam. She and her husband Barry lived across the street from dad. These dear neighbors had a spare key to his house, and they weren’t the only neighbors that had been willing to take a key, “just in case”. Barry somehow got dad off the ladder; an act I wish I’d been able to witness. With the distraction of Barry seemingly appearing out of nowhere, dad never even noticed that he had an extra key.

The second time he locked himself out he took a different approach. Back in the 60’s he’d been involved in remodeling the screened-in porch at the rear of our house into a den. I’m sure that he’s the one who chose a hollow-core back door…less expensive, yes, but also less sturdy than a solid door. Forty or so years later, he had that fact stored away somewhere in his mind: the back door was hollow-core and therefore a door that he could bust down…with the right equipment.

Dad went into his garage and found an iron crowbar, and somehow dragged it to the back door. He weighed 116 pounds by this time in his life, so the real miracle is, he picked up the crowbar and bashed the backdoor at a height that allowed him to reach through the hole and unlock the door. We were, of course, worried about his safety and his judgment, but I have to admit we were also quite inspired by his will. Unstoppable.

My sister and I went through the garage after the “break-in”. We poked around through the layers of discards on the shelves and removed all the tools, and everything else we could imagine him using as a tool. Garages tend to be a kind of modern-day archaeological site and ours was no different. There were tools from when dad did the remodel in the 60’s, and I’m guessing that’s the category the crowbar fit into, there were wedding gifts from my mother’s parents circa 1947, that dad never liked but tolerated when my mother was alive, like a horribly tarnished, silver-plated champagne bucket which is about as unlike my parents’ life-style as you could ever imagine. There were a series of broken microwave ovens although the most recent one wasn’t actually broken…my sister just told dad she broke it so she could get it out before he burned the house down. He’d mistakenly used an aluminum pie-plate to heat food in and then entered the cooking time in hours instead of minutes. That was another very close call that also involved a phone call from Pam.

There was an old shed out behind the garage that I knew he didn’t go into any longer – at least that’s what he told me. He’d asked me to get something out of it recently, saying that the brick path was too uneven, now that the gnarled tree roots were as much above ground as below – said his eyesight just wasn’t good enough. Now that I think about it, maybe that was just a ploy to get us to put all the tools in one spot. Well, we put all the tools and would-be tools back there, way in the back behind a bunch of old window screens, thinking that now he would be safe.

As his judgment became more convoluted, as his behavior became more risky, we continued to increase the hours that the caregivers spent with him, which was no easy task. He fired them almost every day and told them to “Get out! Go home!” and worse, I’m sure. Those two young women were amazing with him – they really understood his nature; we learned a lot about dad from them. They’d get their things, leave by the front door, and then circle around to the backyard. They’d wait whatever amount of time they thought it would take for dad to forget that he’d fired them…and then just enter through the back door like nothing had happened.

When I heard they were doing this, of course I was impressed, and so grateful for their dedication and resilience – but I was also concerned for their safety. I reminded them just who they were dealing with: a proud, fierce, and rowdy old man who was bound to have who-knows-what hidden around the house to protect himself against potential intruders. At various times I’d found a baseball bat and a golf iron between the wall and his nightstand. I warned them that they had to make sure he knew they were in the house once they returned from their banishment. His hearing and eyesight were failing and it’d be dangerous for everyone, if he were surprised by their presence.

After this “break-in”, we knew we were running out of time. My father was a force of nature – he would not be controlled. But we kept trying. We began to look around at possible housing options and at the same time couldn’t imagine him living anywhere but his own home: it’s where he’d lived for a good chunk of his life…sixty years. But there were other reasons. Yes he was old and weak, but he was still quite healthy, physically. He walked a one-mile round trip back and forth to the donut shop once or twice a day, or three times if he forgot he’d already been. And he’s the guy that broke through a door with a crow bar at age ninety.

I didn’t realize how much of a problem his good health, physical strength, and shall we say, creative problem solving skills, were, until we started visiting various residences. First of all, the ratio of women to men in this population is skewed – women outlive men by a huge factor, so they’re primarily set up for dealing with women. As a general rule, women of his generation were not thinking about busting down doors or climbing through windows. Dad grew up in a destitute neighborhood in Detroit during the Depression, and literally had to fight to survive; he’d learned to try anything and everything to accomplish his goals. Those instincts were alive and well in his psyche.

He was also used to walking a lot, every day. Many of the residents were wheelchair bound, some bedridden. It was hard to imagine how they could handle dad. One of the most disappointing and frustrating parts of all of this was that not one residence ever said that they could not handle him. We were VERY honest with them about his behavior. They always told us they were capable of taking care of him, and keeping him safe. There’s no way they could accomplish this and I know now that the system is simply not able to handle someone like dad. We would have had to hire a caregiver to be with him all the time, on top of paying the fees that everyone else paid. We didn’t have that kind of money…but they never even suggested it. We began to see the chasm between what dad needed and what any of them could offer.

And then there was television. He and my mom had given up on TV years ago, and by now, his eyesight was so poor he really couldn’t see what was going on, anyway. Every once and a while I’d say, “Dad, the Dodgers are on tonight, wanna watch the game with me?” First he’d just say, “Are you kidding? The Dodgers stink!” which they did at the time. But finally he admitted that he couldn’t make out anything on the screen. Dementia made television even more bizarre, and sometimes he would describe to me what it looked like to him…and we’d have a good laugh, but it had not been a part of his routine for many years. He just wasn’t the sort of old man who would settle for sitting around watching TV all day. His younger brother at age 88, still loved watching his favorite shows, and he’d come over mid-day and turn them on as soon as he arrived; right away dad would holler, “Turn that crap off!”

Most of the housing situations we looked at assumed that people liked TV and they used it just as some parents use it – as a babysitter. There was no way that would work with dad. Each time my siblings and I would go on an excursion looking for some place to move him, we’d come back utterly discouraged…he just wasn’t at all like the kind of people they were aiming for. In statistical terms, dad was an “outlier”…he was way outside their “norm”. We loved that about dad…loved that he was his own person, and boy was he. But now, that was revealing itself to be a major problem.

Sitting in the backyard with his eyes closed, dad would feel the sun on his face and listen to the sweet song of the Mourning doves – it was his oasis – and a respite from the increasing confusion that he faced whenever he went out into the world. Both his brothers spent the last years of their lives in apartments. He could never imagine that. Dad loved his home; he loved everything about it. It was his old friend, and now that mom was gone, it had become his closest old friend.

We knew this.

Once again he’d locked himself out. This time Pam’s voice on the other end of the line was frantic. She said she “just happened” to look out their kitchen window to see my father reaching his hand THROUGH a BROKEN WINDOW to let himself in at the front door. Her angel of a husband ran over and by the time he’d arrived, dad had already opened the front door. There was not a scratch on him. The hammer that he used to break the window lay eerily on the porch at the edge of the door, below the jagged window. Broken glass was strewn about, and inside, shards glittered all across his beloved couch. Barry carefully removed all the glass and taped up the window. We were running out of time. All three of us kids knew it. His caregivers knew it. Our neighbors knew it. Did dad know?

He must have been alone…where was his caregiver, we wondered? On this particular day, dad had already fired her several times by the early afternoon. Los Angeles was having a horrible heat wave and she couldn’t bear the thought of going around to the backyard again, which was in full sun that time of day. She instead walked around the corner to the drugstore where it was air conditioned, and got something cold to drink. She was not gone long – but long enough. She’d left him unsupervised…but what could she do? He’d already kicked her out too many times and it was over 100 degrees outside. Our homemade eldercare-system was unraveling.

When we heard the whole story, we knew that once again, one of dad’s angels had been looking out for him. He could have been injured, he could have slit his wrist and bled to death. We got the message LOUD AND CLEAR. Maybe you’re thinking this is the message we got: we had to move him out of his house – but that was still inconceivable to us. Instead, we concluded that we had to come up with a system that insured that his caregivers were present 24 hours a day. With hindsight I can’t believe that we didn’t see this as the last straw, but moving him out of his house continued to be a haunting image that seemed impossible.

We were able to cobble together a 24-hour presence of caregivers. It was a daunting job for those dedicated young women and for my sister who at that point was in charge. After my four-year stint in Los Angeles I distanced myself from the day-to-day activities that filled dad’s life. I became an on-call consultant for my siblings while they sorted out how to make sure he was safe and living as good a life as he could. My sister did an amazing job, and, did it while she lived out of town. Even though she had a full-time job she was on the phone day and night, she became an expert at texting when it was still a somewhat new form of communication and we spent many hours on the phone, trouble-shooting problems as they erupted. And that’s just what it was like – we were trying to control an active volcano.

One day it did become clear. Finally. Dad had just turned 94 and was on one of his daily walks. He never allowed any of us to walk with him: not the caregivers, not his kids. He’d bark at us, curse at us to GET THE HELL AWAY. At this point in his life, the only time he was by himself, the only time he retained any sense of his independence was when he went for a walk, and the walks were even more important to him now that the caregivers were there day and night. I completely understood – he wanted some privacy…some alone time. But he wasn’t safe by himself – so the caregivers followed him. Because his hearing was pretty bad and his eyesight was worse, they just followed right behind him. There was enough traffic noise added in, and it took so much of his concentration to focus on where he was going, he never did catch them at it.

He was crossing a busy street, caught his toe on the curb as he was stepping back up onto the sidewalk, and fell. And oh he was lucky, we were lucky: no broken bones, fairly minimal bruising and a scrape to his forehead which bled profusely as head wounds are known to do, but no concussion. His caregiver was at her wit’s end. She knew how close they’d come to a tragedy, and she said she just couldn’t do it any longer. It was too much of a risk: for dad, for her…for everyone.

This was the turning point for me: the place that finally enabled me to see that even though I knew it would absolutely crush dad to move him out of his home, the possibility that catering to his needs…desires…dreams, might cause injury or even death to someone else, be it his caregiver, or a pedestrian or driver trying to avoid hitting him…I couldn’t reconcile that possibility. We knew it was time and it was a sickening feeling for us, his three children. Any of the choices left to us were at best, heart wrenching. All the solutions were going to have bad outcomes. I knew this. It’s the first time in my life that I could not see any light…

This was it. We had to move him. He wasn’t safe there. He was dangerous to himself and to others. And we knew we’d been lucky…we had a good run. And we knew our luck could run out at any minute.

Years before, as it came to me that I had to move to Los Angeles to help my parents out…I had grand and noble intentions. I’d been assisting elders in many different ways for years up north where I lived. During a serious illness, probably in somewhat of a state of delirium, I just knew it was time for me to be with my parents. Intellectually this was a completely insane idea: I had a semi-estranged relationship with my father and a somewhat distant one with my mother. It was not my intellect that was standing in front of me pointing a long and firm finger to the south: it was my heart. What a mess. My intellect had plenty to say about this; “are you OUT OF YOUR MIND?????” “Los Angeles?” “Your father?”

I wanted to believe that our culture would/could somehow come together to make soft, safe landing places for our elders. That somehow I could be their village. If I had been able to think clearly about it I would have known that wasn’t possible, but a grand debate was raging at full volume in my head which took up so much space in my consciousness; I didn’t have room for clear thinking. I just went. It’s a good thing I did. It remains the hardest thing I’ve ever done in my life and being my father’s daughter, I’ve done a lot of hard things. It was also a miraculous time in my life; my mother and I bonded in a most beautiful and tender way and – my father and I came to a state of grace that I absolutely could never have imagined possible, while he was still alive. A miracle.

by

it’s too much

We sat on the couch next to each other, the couch that had been his home-base every evening when he came home from work, and now at age 94 and after sixty years, it was where my father spent most all of his waking hours. The couch had 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 a bit of trepidation that I found myself there with 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 to ourselves. We sat there and for some reason, we were silent.

I had arrived in Los Angeles the day before, joining my brother and sister at dad’s house. 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 showed up at the same time, and the truth is we just weren’t very good liars. Each of us in our own way was so heartbroken about the truth of why we were there; we probably didn’t do a very good job of hiding our grief.

What we were up to was that we had come to move dad out of his home and into assisted living, but not any assisted living. We had to move him into a place that was “secure”, meaning a place where basically, he’d be a prisoner. He was no longer able to make decisions that didn’t put him or others at risk. Many who’d walked this way before had told us that because of his dementia, it was a bad idea to tell him ahead of time. The time for that conversation was long past, and we had tried to have it with him. Whenever we brought it up, he’d slip out of the whole thing effortlessly, like an Aikido master getting out of a wrist-hold before anyone knew what had happened. He was adamant: he was going to stay in his house and he was going to be fine and he didn’t need any help, especially not from his children: end of conversation. Well, the time had arrived. It was time for him to move, he was not able to stay in his home and be safe and it wasn’t only his safety that we were talking about. He was a strong, healthy, stubborn and wily old man and his problem solving skills were getting more and more dangerous.

The week before I arrived in Los Angeles I was pacing back and forth, 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 not be honest with him? The thought of it made me sick to my stomach. I knew what that house meant to him, I knew what his independence meant to him, even though we’d already slowly but surely gotten him to allow caregivers first to visit every day and finally more recently actually stay with him around the clock. Between the incredible creativity of two dedicated young women, and with help from each of his 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 I took to talking it all out with him, in my mind. It wasn’t even a conscious decision; it was just all I could do. I told him everything…why, where he would be living, what it was like, the good, the bad…everything. Over and over that week I begged anyone who was listening to somehow help this stubborn old man know that we were plain out of options.

Someone walked by the house talking, loudly of course, on their cell phone, 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?”

He’d been a realtor thirty years before. “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 do drop off their business cards all the time, 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 $600,000…isn’t that insane?”

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

“That’s a lot of money. What are you going 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 said, “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 with poor hearing although he thought it was 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 he’d 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 front-porch light. Then came the swish of the curtains closing, next he’d pull the shades down. Moving into the kitchen he’d turn off the light, then head down two steps into the den that he’d had a hand in remodeling in the ‘60’s. He’d lock the back door, check that all the windows were closed and 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. I’d been able to tell him the truth. He knew it was time. I knew he did. And even though by the next day, well, honestly in 15 minutes, he would forget all of what we’d said, I knew that somewhere in his heart he’d heard that truth, and, he was ready. I also knew that he forgave me, forgave us, and still, I knew that next day was going to be the most excruciating day of my life, of all our lives. I was right. About everything.

by

french fries

I got a call from my sister. She was worried, frustrated, crying. Dad wouldn’t let her in the house; she was locked out. Dusk was rapidly falling, she was in Los Angeles with nowhere to go, nowhere to spend the night.

For the last few years when I’ve told this story, I blamed dad’s behavior on something called “Sundowner’s”…common to people with certain forms of dementia. As daylight decreases, but well before darkness falls, every cell in their body shouts, “Darkness is coming, and with darkness comes danger! Lock the doors, turn off the lights, go to bed.” Dad definitely demonstrated “Sundowners” by this time. Recently I spent some time in Los Angeles with my sister, and in the midst of our sisterly storytelling, which often includes stories about all the shenanigans we went through with dad, I brought up this story, linking his behavior to Sundowner’s.

My sister said, “NO…that’s not why he locked me out. Don’t you remember?” Immediately, she began to laugh – a particular kind of laugh I recognized as precursor to a doozy of a “dad story”. Well, I didn’t remember, and it turns out this is one of those instances where the truth is much stranger than fiction.

At the time this happened, I was back up north living in my own home and my sister was down visiting dad in LA. We had come to a crossroads with his in-home care. We’d been able to gradually increase the number of hours that caregivers were there, even though he continued to resist having caregivers at all. Somehow between the three of us kids with all our different ways of communicating with him, we’d been able to expand the daytime contact hours.

Now it was clear to all of us, with increasing pressure from his caregivers; it was time to have someone stay with him during the night. We all agreed…all, save dad. One of his reasons for refusal was that it would be improper for a woman to stay in his home overnight. Ellen got the inspiration to see if we could find a male caregiver for the night shift. I thought this was a great idea, and also had one serious hesitation; dad was still, at age 93, dead set on being the “head of the house” in any situation. With dementia, that meant that he might very possibly challenge any man, known or unknown, found in his home in the middle of the night, with physical aggression. After all, he grew up in an era, and in a neighborhood where fistfights settled most disagreements, or, he might grab one of his hidden weapons – a golf iron or a baseball bat.

We decided to begin interviewing some male caregivers and see if we could find the right person. That’s why Ellen was in L.A…to find our man. An applicant came over one afternoon and Ellen was able to interview him out on the front porch first, while dad was finishing up his lunch – there they sat in a couple of scruffy, white plastic, outdoor chairs. The timing of these sorts of things was tricky; dad’s schedule had its own brand of randomness, so it seemed like the gods were with us. After their brief introduction Ellen came inside to ask dad if he’d like to meet this person who “might be doing some work for you”. And here’s where the story turned classically dad-crazy.

First, dad went out on the porch and without any conversation waved the guy off, as in “get the hell off my property”. Next, dad turned to Ellen and said in a genuinely apologetic tone with a completely straight face, “I’m really sorry, but I just can’t let you stay here.” As my sister re-told this story to me, she said it was like he so wished he could let her stay, but because of whatever she’d done, “Lord knows what that was”, he absolutely could not let her back inside his house. Ellen, at first just mildly baffled, said, “What?” At that point dad had lost his patience; before dementia he had very little patience, and after dementia, pretty much none. “You heard me, leave. You can’t come in. Go on,” and waved her off the same way he’d waved off the guy. With that, dad walked through the open front door, shut it and locked it. He not only locked the doorknob, but also locked it with the chain lock…a security feature on all the homes in this 60-year-old neighborhood. Instead of a deadbolt or a little peephole, there was a shiny brass chain that enabled you to open the door maybe an inch, so you could safely see who was at the door without exposing yourself to potential danger. Well, that’s what dad used on my sister, his youngest daughter, on this sunny afternoon. He usually didn’t do the chain lockup until he went to bed…but this was a dangerous situation and required serious action.

She could not comprehend AT ALL what had just happened. She tried the door and yes it definitely was double-locked. “Go on now!” was all dad said, in a much darker tone. At this point he was beginning to feel under siege by whoever Ellen had now become in his hard-to-make-sense-of-things mind. Somehow, amazingly, she was able to figure out what misinterpretation dad had just made. In that moment, he knew she was somehow a relative…and maybe he still knew she was his daughter, but most importantly what he “knew” was that Ellen had just had a very improper interaction with a strange man on his front porch. The interaction was, in his mind, so grievous that he could not allow such a “shamed woman” to enter his home. So he locked her out. This all occurred in the middle of a bright, sunny afternoon…there was no “Sundowner’s Syndrome” going on, like I’d remembered it. This had become “The Case of the Improper Woman” and Ellen was stranded in the midst of her childhood neighborhood.

Accepting defeat, she walked off dad’s porch and as the reality of her situation began to weigh on her…the tears began to flow. Her father had just banished her and, she was stranded in North Hollywood…a moderately safe place by day…but anywhere in Los Angeles could become a little sketchy at night. She was low on cash, so staying at a motel was not possible, and besides, any motel that she could afford in that area would be really sketchy…not just a little.

Finally she decided to seek temporary shelter with a dear elderly neighbor across the street. She knew my parents and since dad had become widowed, she kind of kept an eye on dad. We always visited with her when we came to visit him and she would give us updates on what she witnessed from her vantage point across the street. His daily walks were pretty much like clockwork, so she could tell if something was out of order, if she didn’t see him in the morning.

When Bea opened her door and saw Ellen’s distraught look, she reached out to her with a precious motherly hug and Ellen really began to cry. She just didn’t know what to do and her heart was broken. That’s when she called me. I was no help. Knowing dad I knew he wasn’t going to let her in. In other circumstances I would have said that he’d forget about it in a while and then she could just start over, but he was feeling attacked and most likely was pretty agitated. I knew from experience with him in that state, that it took more than a little while for him to get over it. If she knocked on his door again, who knows what he’d do and besides, now it was getting dark so “Sundowner’s” would be part of the problem.

I agreed that sadly, her best option was to spend the night with Bea. I was sure glad it wasn’t me down there, locked out. Before Ellen packed it in at Bea’s, she decided to go out to get something she’d forgotten to bring with her. She was driving along Ventura Blvd, a long and meandering street on the south side of the San Fernando Valley, past a myriad of shops. Every kind of retail store and food establishment offering items you know about, plenty that you’ve never heard of, and many that you don’t want to know exist – it’s all there. She was driving along not thinking about anything in particular when she saw a fast-food place.

“FRENCH FRIES!” This thought screamed out to her. “GET DAD SOME FRENCH FRIES. You can BRIBE him with FRENCH FRIES!”

In this moment, she remembered his caregivers telling her that sometimes when dad would fire them, and tell them to GO HOME, when he wouldn’t forget about the whole interaction after a few minutes so they could just carry on with looking after him, they’d leave and go get him some fresh, hot French Fries. They told Ellen that it worked every time. She pulled into the next fast-food place she passed and ordered some piping hot French Fries.

Back at dad’s house she gingerly knocked on his door again. By now it was dark and dad was quite agitated. “WHO IS IT?” he yelled with bravado and fear in his voice.

“Dad, it’s me. I brought you FRENCH FRIES!”

There was silence. Then she heard his hand on the chain lock, and the door swung open. She almost handed them over to him, but at the last minute she saw a very real possibility that he would simply grab the fries and slam the door. Ellen was thinking on her feet.

“Hi dad, I brought you some French fries! Let’s go sit at the table and eat them together,” all the while holding them just beyond his grasp. They sat down at the dining room table and ate the deliciously hot, fried, salty bits together in silence. As soon as they finished, she got up from the table and disappeared into her bedroom. She turned off her light and got into bed, being as “quiet as a mouse”. She didn’t want to risk any kind of disruption. Who knows what he would do.

French Fries are the best bribe in the world. Of course they are.

When Ellen was first locked out, she called me – and she also called our older brother. He wasn’t too sympathetic or understanding of the enormity of the situation. He lived back east so her call came in the midst of his own family heading off to bed. By this time he’d had plenty of his own frustrations with our father. All this to say – he wasn’t much help.

“Just tell him who you are and tell him to let you in.”

Dad was not someone that responded well to his children telling him what to do, way before dementia had ever raised its unpredictable head.

Some months later…IT HAPPENED TO PAUL! Dad locked him out. And because of dad’s issues with needing to be the alpha-male, he was even more aggressive sounding toward my brother, feeling extremely threatened by some big, male stranger trying to enter his home. Paul COULD NOT believe it. He was really ticked off. He called Ellen, and to her credit, instead of goading him…talking to him the way he’d talked to her, she simply said, “Paul, go get some FRENCH FRIES.”

He did. It worked. I’m telling you, “French Fries”: it works every time.

by

gifts to be opened later

I have pursued many forms of creative expression in my lifetime. Maybe it is incorrect for me to say that I have pursued them at all; maybe they have pursued me. Ten years ago, when I made a decision to travel south and see if there was a way that I could assist my elderly parents, I packed up my world along with a series of beadwork projects in midstream. All of it landed in baskets and boxes that were trundled down to Los Angeles in a 1979 Volvo station wagon named Blossom. There, my little world remained hidden, quiet, and mostly patient.

My bewilderment, grief and shock over how I could possibly be back in Los Angeles after feeling that I had barely escaped it when I first left in 1972 was enormous. I begged for inspiration that would slake my creative thirst and heal the wound that was reopened with my return, but there were a few restrictions: it had to be very portable, as I was not exactly living in my own home, and it had to require little or no cash outlay. After a time, my almost unconscious murmurings were answered: a freshly broken Eucalyptus branch invited me into its life. The branch had broken out of a large, gnarled and stately tree which I walked beneath every morning at the onset of my sunrise circumambulation of a nearby but little known wildlife reserve. The very next morning after it fell to the ground, I easily peeled its bark, and then began to sand and sand and sand the gently arching beast. As I sanded, a presence appeared. Over time, one end of the branch began to emerge as the head of a bird. I was not the only one to see it in this way. Most who witnessed the journey that this stick and I were taking together, quickly commented about the bird. I had no urge to carve anything…I was simply compelled to sand.

I carried the stick with me wherever I went. After the initial peeling of the bark with a Swiss Army knife that my brother had given to me some twenty years before, sheets of various grits of sandpaper became my only tools and a manila folder containing them, my toolbox. I sanded while sitting in the park where the branch had first called out to me. I would sand while sitting in the patio outside Starbucks (which my friends and I called one of my “offices”), surrounded by cigar-smoking Entertainment industry attorneys and screenplay writers working on their laptops. Later on in the day, in this reclaimed desert of southern California, I would sit out in the backyard of my childhood home.

This portion of the time I was to live in Los Angeles, came after my mother had Crossed Over. Her death left my father and I to sort things out between us – not a small project. We had all thought it was my father who was preparing to leave this world and that is what precipitated my journey far away from my adult home and back to the place of my childhood. He and I had become fierce opponents without really knowing what the precise source of our disagreement was, long ago, beginning with my entry into adolescence. We each yelped in our respective ways, as raw nerve endings were disturbed easily by our clumsy exchanges with each other. The shock of mom’s death, coupled with the difficult nature of dad’s and my relationship was excruciating. By the time we found ourselves as housemates alone together, we had been having our often-fiery misunderstandings for a long, long time.

When I first began to go out into the backyard, my father would stand at the door, harping at me through the screen. What the heck was I doing out there anyway? In the beginning, I would invite him to join me. He always refused. After a while I stopped inviting him. He had little left of his eyesight, and not that much of his hearing. Dementia was taking up residence in him as a rather pushy, uninvited guest. We were finding our way through grief, through heartbreak, he and I. Our approaches were unrecognizable to one another. I would sit out in the backyard sanding and sanding. Mourning doves would sing the late afternoon into evening. Finally a breath of coolness would tinge the air.

Often he would holler at me, when was I coming back inside? I felt like a caged animal in that house. Having lived in several small but somehow spacious cabins in the woods of the northwest for years now, residence inside the modest, late 1940’s-era house chopped up into small interior spaces, in the midst of the San Fernando Valley was closer to a prison for me. This backyard served once again as my refuge. The same refuge I had sought as a child who would one day become a woman who loved to live in the woods.

One afternoon dad finally ventured out into the cooling dusk. I was sitting outside beneath the tangerine tree that he had planted when I was just a toddler. He sat in a lawn chair next to me and again began his heckling. What could I possibly be doing out here with a stick, he demanded. I was slowly beginning to learn how to translate my father’s language…his choice of words. I understood now, that really what he was saying was that he was lonely and wanted to connect with me. I said nothing, and handed him the four-foot long stick. He was shocked when he grasped it, as his failing eyesight had enabled him only to see the bare outlines of what I worked on. He let out a long, slow whistle. He held it in his baby-soft hands…hands that had not been used for any kind of manual labor for many, many years now that he was in his nineties.

He whistled again as he felt the entire length of the branch, carefully exploring every nuance of the wood. Finally, he moved his hands back to one particular spot where a twig had once jutted out from the main branch. True to his long and well-earned reputation as a man of few words, he handed it back to me saying, “Here”. My father had found a way to work with me on this project. He became my inspector. I would sand and sand, and then hand it over to him. He used his heightened sense of touch, which he’d come to depend on increasingly as his sight faded into the background of his awareness, to direct me to the next phase of sanding. We both sat this way, connected by this branch-becoming-bird, quiet for long stretches of time, serenaded by the songs that called out to the approaching dusk. Slowly, by way of our two sets of hands caressing in turn this that was once simply a broken branch, we were beginning to meet each other soul to soul.

Darkness would fall for my father earlier than for me. At best, he lived in near dusk even at the brightest times of the day, as macular degeneration continued to commandeer his vision. He would head back into the house…getting restless about nightfall coming on. It made him nervous when I stayed out back. He could not find a way for his sense of the evening to coexist with mine – could not imagine that dusk still reigned in my world if darkness had come to his. Finally I would give in to his reckonings about the hidden dangers lurking in the nighttime that was upon us. His agitation would only increase until I either went to bed, or every once in a long while, just got in my car and left the house. Either tactic worked.

Most nights I would simply head to bed early, on his schedule, and then arise before dawn to visit the only wildness I could find: the wildlife refuge that was, ironically, perched in the armpit of the busiest freeway in southern California. Most of the inhabitants of the San Fernando Valley did not know of the hundreds of acres slowly inhaling and exhaling just below the freeway…few people that I met had ever heard of its existence. Interestingly, my father was the one who introduced me to this place long ago. It was contained in an even larger tract of land, used as a flood control basin, to contain the wild waters of the flash floods that southern Californians call “rain”. Within the boundaries of this area are two golf courses, “my” wildlife refuge, a larger, more civilized and widely used city park and then off to one edge, of all things, rows upon rows upon rows of cultivated corn, soaking up the hot desert sun.

When I was a young girl, sometimes just dad and I would go to what was for me, quite an exotic place. We would go to the produce stand on the edge of the glistening cornfields, and buy FRESH corn on the cob for dinner. Dad grew up in the Midwest, in Detroit, and he knew what real corn on the cob tasted like. He would carefully and precisely pull ears of freshly picked corn out of mountainous piles and place them in the paper bag that I proudly held out for him. All those long years ago it was my father who introduced me to this place. Most people did not know of it even then, but he did. In his way, he gave it to me as a gift that would sit, mostly still wrapped up, to be opened by me when I, and really both of us, most needed it.

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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?

by

are you going to the game

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

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

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

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

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

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

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

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

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