the hardest goodbye

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The question jarred me out of our solitude.

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

We sat for a few moments and then,

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

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

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

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

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

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

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

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

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

“Where would I live?”

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

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

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

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

“The house?”

“It’s too much.”

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

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

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

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

I was right – about everything.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Again I heard,

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

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

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

“Come on. Let’s go home.”

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

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

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

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

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BE HERE NOW

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

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

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

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

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

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

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

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

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

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

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

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

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

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

He really did that. And then,

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

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

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

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

The waiter brings the food.

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

I knew what was coming next.

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

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

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