February 16, 2016 by apileofsticks

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.

January 18, 2016 by apileofsticks

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.

September 9, 2015 by apileofsticks

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.

September 8, 2015 by apileofsticks

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.

September 8, 2015 by apileofsticks

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.

September 8, 2015 by apileofsticks

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.

September 7, 2015 by apileofsticks

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.”

September 7, 2015 by apileofsticks

not bad

We all knew this would probably be the last Thanksgiving at Dad’s house. Growing up, our cousins fondly called it, “Aunt Rose and Uncle Ted’s house”. My parents, that house; they were always there. I remember when one of my cousins visited them after being out of town for years. Gleefully and with a broad smile across his face, he announced, “Your dad’s still sitting in the same position, on the same couch.” I laughed along with him and also rolled my eyes a bit. But it was true…no matter how crazy the world was, we could return to Beeman Avenue to that safe, solid, and yes, maddening consistency, if even just for one evening.

The years rolled on, we cherished the house and all the memories it held for our family. For the last five or ten years that my folks, and then my widowed father, lived in that house, it fell to our family to host the Thanksgiving feast. For all the years that it was her responsibility, this assignment was mom’s nemesis, her unraveling. She was a mother, and a wife who, like most women of her time, cooked all the meals for her family. She’d try some new recipe now and then, but cooking did not make her heart sing…never had, and my father was…well, he was how he was. A man of few words, a man who never, ever, tasted food before dousing it with salt, he was also not one to praise unnecessarily, which from my perspective meant…there was no praise.

So it was no surprise each year as Thanksgiving loomed near – mom’s dread increased. My sister and I in our various ways inherited some of her dread or resistance or insecurity or whatever it was, so sadly we were not the triumphant daughters who would come home and just take over the task.
We helped out for sure and we made a great team. We created the beauty that Thanksgiving at 5219 Beeman Avenue became known for: we ironed all the vintage table linens inherited from mom’s folks, we polished every piece of beautiful silverware and serving pieces that sat hidden the rest of the year in the deep drawers of the breakfront that came out of grandma and grandpa’s living room. We set the tables with the lavish, gold filigree-edged dinner plates that had graced my grandparents’ Sabbath meals as my mother was growing up.

To my astonishment, in those last years, dad found his own tenderhearted way of contributing to the beauty of our evening. Using a tray, which in earlier days would have been piled with his “famous” hamburgers, cooked every weekend on his old-fashioned barbeque, and with a pair of scissors that mom had forbidden anyone else to use, and dad of course broke her rule every time, he’d disappear out into his beloved backyard and cut mountains of bougainvillea flowers bursting with life. What a sight he was…close to ninety-years-old, skinny as a rail, carrying his collage of tangerine, magenta, and scarlet hued flowers into our home.

The tables were rich, sumptuous and oddly out of place, pasted on top of the plain interior of our home. It was a little fairy tale that we all traveled into, together. The den that held our feast began as a large, 1950’s era screened-in porch complete with sloping concrete floor. Dad helped remodel the room in the ‘60’s, keeping the original floor, tiling it with linoleum. This was a great feature if you needed to hose down an outside porch, or if you were a kid rolling toy trains across the floor, but bizarre and unsettling for a bunch of octogenarians, some who were losing their eyesight or hearing, and some gaining dementia in exchange. Dementia was definitely beginning to move into dad’s life in inconsistent but obvious ways. Tinged with bittersweet, we all knew, without speaking of it, this might be the last time.

Neither my sister nor I were up to the task of taking on the actual preparation of the turkey. In mom’s absence we marveled that she had done it for so many years. No matter what several of our well-meaning friends told us about how easy it was to roast a turkey – we knew we could not manage both dad’s increasing unpredictability and our grand lack of confidence around cooking a meal for so many relatives…several of whom had also slipped into the realm of “unpredictable”.
Enter the Angel of Thanksgiving. My sister’s childhood friend happened to be coming down to L.A. for the holiday and she came from a family of fabulous cooks…she loved to cook. After hearing my sister’s description of our dilemma, SHE VOLUNTEERED TO COOK OUR ENTIRE FEAST. Our anxiety-ridden circumstance appeared on her horizon and she was happy to get the opportunity to cook an elegant meal, and to offer a treasured gift to our family.

We, and our home, had never seen such a feast. Yes, we had green beans, but for the first time ever, we had FRESH, delicately cooked green beans, with FRESH herbs. The deliciousness went on and on throughout every detail of the meal. The menu equaled the elegance of the crisp linens, sparkling silver and riotous flowers. It was magnificent.

The air was thick – collectively we were in a food stupor. I sat next to my father and watched him go through the motions he’d made every single night of his married life to signal that he was indeed, finished with his meal. He pushed himself away from the table slightly, took his grand, sage-green, linen napkin, which any other night would have been a small, white paper napkin, and with both hands, gently wadded it up and placed it in the center of his plate.

“How was your dinner, dad?” I asked, truly expecting at least some small amount of praise even though praise was not his style.

After a long silence and looking straight ahead, he responded.

“Not bad.”

I burst out laughing at the absurdity of his reply. How far I’d come, that my unscripted response was pure laughter where years before it would have been anger or resentment or rage. All I could do was laugh.

“Not bad?!” I thought to myself.

“Not Bad?” I flung at him, inside my head.

“NOT BAD?!?!?” I said out loud, incredulous.

I began to describe the subtle and exquisite flavors that Paula had included in this feast that defied any inkling of anything we’d ever eaten as a family. I was on a roll, flinging words right and left. Finally I noticed that dad’s body language had changed ever so slightly. He was still facing straight ahead, but his arms were now crossed, resting at his belt (he had no belly to rest them on) and his shoulders were shaking ever so slightly. That subtle smirk formed across his lips.

“That meal, to quote mom, was ‘INCREDIBLE’,” I informed him.

He nodded his head slightly, saying,

“That’s what I said.”

Time stopped. The earth stopped its rotation. I stopped breathing. Everything stopped.

“THAT’S what NOT BAD means?”

He nodded again, showing a little more movement in his shoulders now, doing his level best to hold back his laughter.

In a complete state of shock, and in the brief space between one sentence and the next, my whole world had been thrown on its head. I had spent a great deal of my childhood and a good chunk of my adult life consciously or unconsciously seeking approval from my father. What I was hearing from him right now was pointing to the very real possibility that much of my quest for approval stemmed from a problem with translation.

Not bad = Incredible

I honestly will never know if my father was only shaking with held back laughter at my reaction to his response about dinner, or if he had a glimpse of our life-long struggles and this issue of mistranslation.

Thankfully, by the time this extremely disorienting discovery arrived, I was able, rather gracefully actually, to take it in stride. TAKE IT IN STRIDE? Well…pretty much.

September 7, 2015 by apileofsticks

The Queen of the Flowers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

September 7, 2015 by apileofsticks

grace AND dementia in the same sentence

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

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

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

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

Welcome. Welcome Home.

grace within dementia

the stories, the gifts

Tag Archives: memory loss

BE HERE NOW

just one dance

the man we were dealing with

it’s too much

french fries

gifts to be opened later

are you going to the game

not bad

The Queen of the Flowers

grace AND dementia in the same sentence