2:30 AM

“I’m not doing this on purpose, you know,” my father says to me.

It’s 2:30 AM. I’m pointing at his clock, the new one we got that tells the time and the time of day. Above the 2:30 AM the word “PREDAWN” appears.

My father presses his lips together and narrows his eyes. He looks like the emoji with horizontal lines for both eyes and mouth. Exasperated. Frustrated.

I’m not sure what that emoji is supposed to represent. I’m terrible at reading emojis. My children try to teach me.

“I can’t believe you used the eye-roll emoji,” one of them said to me after I, guess what, used the eye-roll emoji. I thought it was more of a shruggy-I-dunno face. But what do I know?

“You use that smiley-face?” another one asked once. I use the basic smiley — no teeth, no open mouth, just a little upward-curved line.

“What’s wrong with it?” I asked.

“I read that as a snarky-teenager-if-you-say-so face,” she said.

Sigh. I dunno.

But at 2:30 in the morning, I’m not thinking about emojis. I’m thinking about redirecting.

I have a baby monitor in my room so I can hear him when he gets up. He often gets up to use the bathroom and then goes back to bed uneventfully. And I go back to sleep, because I haven’t left the warmth of my bed.

Some nights, though, I don’t hear the squeak of the hospital bed as he climbs back in. Instead I hear running water in the bathroom and know he’s planning to shave. Or I hear the creak of dresser drawers being opened followed by the sound of the hanging drawer pull as it drops down and hits the brass plate. I know then that he’s getting dressed and that it’s time to redirect.

I climb out of bed, turn the monitor off, and head downstairs. The overhead light is on in his room, its bright rays extending under the door. Sometimes, when I open the door, I find him in the bathroom. Sometimes, he’s at his dresser. Sometimes, he’s just standing in the middle of his room, like he doesn’t know what to do next.

“I’m not doing this on purpose,” he says to me, and it breaks my heart. He knows that what he’s doing isn’t right, but he also doesn’t know what the right thing to do is.

“Look at the clock, Dad. It’s 2:30 AM. You’re supposed to be sleeping.”

“I know that,” he says.

“Can I help you get back into bed?” I ask.

“You want me to go back to bed?” he asks. What I’m saying connects, but it’s like using a corroded battery where the connection isn’t a connection because of yuck that’s in the way.

“Yes,” I reply. “You need to sleep.”

And by that I mean that I need to sleep.

But it’s too late for me.

I help him get back into bed, then go upstairs to my bed, turning the monitor back on before I climb in. The silence on the monitor tells me that he’s back to sleep. My husband’s deep breathing tells me that he’s sleeping, too.

It’s 3 AM now.

I stare at the ceiling for an hour, wishing sleep would return to me.

When it doesn’t, I climb out of bed to begin my day.

Guilty

When I first laid eyes on Joseph Zupnik three and a half years ago, he was late for the Family Council meeting at my mother’s nursing home, Focus Otsego.

“LATE!” I jotted into my little notebook. Not a good first impression.

He walked in the door and I barely noticed him. I thought he was a late-arriving family member, but he walked right over to the seat next to the administrator.

Joseph Zupnik was tall and thin, the kind of person who folds when he sits down and unfolds when he stands again. His pants were about an inch too short at the ankles and an inch too high at the waist. The muted tones of his plaid shirt were understated and unassuming, like he was. Quiet, mild, articulate. And young.

Almost immediately people started demanding answers from him about staff shortages and retention of the remaining staff. The rumor was that Focus cut salaries by 15% across the board when they took over. The fact was that staff had left in droves.

Joseph sat, calmly folded in his chair, legs folded as he crossed them at the knee, manicured hands folded across his knee, body folded somewhere between slouched and erect. He seemed so relaxed.

And he calmly fielded the questions and spoke of industry standards and union negotiations.

I wanted to say that no one cares about industry standards. These are our parents, not statistics.

Others spoke up though, and talked of how much better this place was than other ones.

And I wanted to say to them that I don’t want relatively good care for my mother. I want the best care.

He stayed with us for an hour and a half. Listening, responding, listening some more.

He knew his stuff. He fully understood the business end of this industry.

He was clinical and dispassionate — a walking statistics book.

Yesterday, Joseph Zupnik pleaded guilty to endangering the welfare of an incompetent or physically disabled person.

Seven other charges against him were dismissed.

His slap on the wrist includes community service. I’d like him to work as an aide in a nursing home for the same number of years he owned nursing homes.

And I’d like him to live on the same pay as the aides who had worked under him.

To me, that would be justice.

And mercy.

He would be a better man for it.


A little background and a final thought.

In the early 1970’s a new building combining the Otsego County Home and the Otsego County Infirmary was built down the road from where I grew up. It was renamed The Meadows, and I remember visiting there with my father when I was young. I believe he was the Medical Director.

When I took a year off from college in 1979, I worked as a nurse’s aide there. Everyone should work in a nursing home at some point to learn compassion (if that can be learned) and to experience how hard and thankless the work is.

Both of my grandmothers and one grandfather were residents at The Meadows.

My father-in-law was a resident of The Meadows when the new building, The Manor, was built. He was among the first crop of residents at The Manor.

My mother lived at The Manor. She was there when it changed hands.

When the county decided to sell, my father had been on the task force charged with finding a buyer.

We had ties to the Otsego County nursing home no matter what its name was.

In the end, the legislators voted to sell to the highest bidder instead of the most qualified purchaser. It was more of an “unloading” than understanding what an important part of this rural area that county facility served. They simply wanted to be rid of it. In my mind those legislators who voted to sell The Manor to Focus Corporation (and Joseph Zupnik) also bear some culpability.

 

Buried Gold

It’s been a rough few days… make that weeks.

My father has been struggling with anxiety. Anxiety and dementia go hand-in-hand. The world doesn’t make sense. Memories jumble around. People telescope in and out. Switchbacks define the landscape.

“DON’T GO THROUGH THAT DOOR!” he cries whenever I leave him alone in his room. Waylaying me with his hand on my arm, he looks over his glasses and says in a confidential tone, “There’s nothing out there. Nothing. You can’t go there.”

But I must and I do. His world may be confined to one room. Mine is not.

If I coax him out to the sun porch, I struggle to coax him back in.

He’s leery of entering the dining room. He forgets that he sits at the head of the table and takes my seat.

Which, of course, is fine. Just odd.

“When I was in World War II, I was stationed by the Red Sea. I buried a lot of gold there. We need to go back and get it,” he told me the other day. Except he was in high school during WWII and was never stationed by the Red Sea. He went there on holiday when he was stationed in Ethiopia in the early 60s, but not WWII.

He told someone today that gold was buried in the back yard. Here.

The only gold we have here are little bits of dental gold that the dentist gave me after she removed some of his teeth. It’s gross, probably not worth much, and certainly not buried. That sounds like a good idea though because I don’t know what else to do with it.

I’ve been so tired because I’m up multiple times during the night with him. He can’t sleep. He’s so anxious.

Last night I made a to-do list so I could make sure I got done what needed doing today. Phone calls, shopping, and mail.

Mary added the part about rainbow sprinkles. Rainbow sprinkles make things better.

Karl added the great mom part. The pat on the back meant a lot.

Sometimes life gives more gut punches than pats on the back.

My father didn’t get to sleep last night until 11 PM — which meant that I didn’t either. He woke me at 5:05 AM.

Through the monitor I heard, “Sally! SALLY!”

I ran downstairs, my heart pounding.

“I’m having terrible chest pain,” he said. I called the ambulance.

The paramedic asked him about the pain.

“10,” my father replied. “Crushing chest pain,” he added.

By the time he got to the Emergency Room, he was fine.

“He has dementia,” I told the ER doctor.

“I got that,” she said, smiling.

“Can I get you something to drink?” she asked my father.

“I like beer,” he said. It was 6:15 AM.

He hasn’t had a beer since he ordered a flight a couple of months ago at his favorite restaurant. He was baffled by the four little beers served on a board. “What do I do with this?” he asked.

“You taste them,” I said.

He gave them to Karl.

We were home from the ER shortly after 7 AM. God bless the ER doctor who didn’t do a full cardiac workup.

Sometimes gold is in rainbow sprinkles and kind words.

Sometimes it’s in the not following protocol and using common sense.

Sometimes it’s buried in the backyard but I’m not going to count on that today.

It’s like I never made a sound

I was scribbling times and notes to myself on my meet program when I heard two boys talking behind me. Despite the loudness of the pool area — the splash of water, coaches yelling, parents cheering — their conversation caught my attention.

“You know, the water isn’t wet until you touch it,” said one.

“What are you talking about?” asked the other.

“The water isn’t wet until you touch it,” the first boy repeated.

“It’s always wet,” said the second boy.

“Nope, not until you touch it,” said the young metaphysicist.

I quickly wrote the quote into my program so I would remember it.

That conversation reminded me of a Dear Evan Hansen song which then ran through my head for the rest of the day. The song, Waving Through a Window, had nothing to do with water or wetness, but had everything to do with metaphysics of perception, but on a deeper level.

Evan Hansen had taken the classic question — if a tree falls in the forest and no one is around to hear it, does it make a sound? — and morphed into a question of something more.  The original question really is: can something exist without being perceived? That’s exactly what my young swimmers were discussing. Is water wet if no one touches it?

The question Evan Hansen asked was: when you’re falling in a forest and there’s nobody around, do you ever really crash or even make a sound?

The whole song is sad, about being on the outside looking in and never really feeling like you belong.

It’s about the pain and insecurity of being vulnerable, and so choosing not to participate in society.

It’s about isolation.

Sometimes I think about the hidden-ness of what I do. Nobody sees the dishes, the laundry, the putting away of books and papers that will be gotten out again tomorrow by a man who doesn’t remember. Nobody sees the toilet cleaning or the sheet washing or the cleaning of unmentionables in unmentionable places.

People see me at the store. They ask how my father is doing, and I hesitate in my answer. He mixes up the Jumbles and puts wrong answers in the crossword. He makes comments that make me blush, or make me upset, but ultimately remind me that he grew up in a different era. He needs help finding things — his wallet, his hearing aids, his pens — and I help him.

But when someone asks how he’s doing, all those things run through my mind and I say none of them.

Yesterday a woman placed her hand on my arm while I hesitated. “I know,” she said. “I know.”

And I knew that she knew.

If you are a caregiver and never tell people all the things you do, it doesn’t mean you don’t do them.

Like the tree crashing in the forest, people who have heard that sound know that it exists. Other caregivers know what goes on in the home.

I believe that water is wet even before I touch it, and that trees make a sound when they fall, and that when people struggle, even if nobody sees them, the struggle is still real.

That thought is a comfort to me.

And reminds me to be kind.


Taking a page from Osyth‘s playbook — I used  a line from the song for my post title.

 

 

New Every Morning

“I hurried over so you could take a picture,” said Matt, the lifeguard who was taking over for me so I could home.

Two weeks of working together and he’s got me figured out. How many times has he heard me say, “I need to get a picture of that!” Or, how many times has he seen me grab my phone out of the office so I could snap a shot of the sunrise.

I told someone at Hutchmoot that I was practically giddy over the prospect of working at this job, and that hasn’t changed since it started.

Leaving the house at 5 AM to lifeguard for two hours every morning has been fun.

And stimulating. Adult conversation is such a treat.

The sunrises aren’t bad either.

I arrive in the dark. This morning I stood, looking out from near the pool, and snapped a grainy picture. The white dot in the distance is a lighted lamppost.

Since the pool was redone, it has a wall of windows facing east. The lights are always on in there. In the darkness, the pool area fairly glows when I arrive.

Of course, when working as a lifeguard, I’m not staring out the windows. I’m scanning the pool, in case any of those early morning lap swimmers need help. So far the only help anyone has needed is turning the music down or alerting maintenance that the hot water isn’t working in the showers.

But I love my co-workers. They are such interesting people. And we converse in complete sentences.

I’ve tried explaining to people how being a caregiver for someone with dementia is like taking care of a toddler. Anyone who has had children knows the stage of incomplete conversation. That’s how it is with my father these days. That, or trying to guess what he’s trying to say, or trying to follow the tangents that his mind travels down.

Right around the time I’m getting ready to go home — I can only really afford two hours when I know he’ll be sleeping — the sky is changing.

One day last week, I tried to take a picture of it, but the pool reflected back off the glass and gave me this shot.

So this morning I went from window bay to window bay trying to find a place that didn’t reflect the pool.

“Just step outside,” said one of the other guards, so I did.

Golly, it was pretty.

I stopped again just beyond the pool on my way home.

I wondered if there was a liturgy in Every Moment Holy for the sight of a beautiful sunrise.

Then I realized I already knew one, and recited on my way home —

But this one thing I bear in mind,
and therefore I have hope:
The steadfast love of the Lord never ceases;
His mercies never come to an end;
They are new every morning;
Great is thy faithfulness.

Lamentations 3:21-23

At the Corner

At the corner of Grove and Spring Streets, I paused. Maggie dropped her fish and panted while I stepped back to survey the building from a different angle.

It’s a lovely setting surrounded by trees. Porches and patios invite the residents to enjoy the fresh air and sunshine. Quiet and serene, the building stands removed just far enough from the hubbub of busy our tourist town. Expanses of lawn buffer it even more.

When I’m inside, I’m all yes.

When I leave, I wonder.

Maggie picked up her fish and we continued walking past the building.

I looked at the porch with its flower box. To the left was the dining room. I had eaten there a couple of weeks ago with my father.  We were just visiting, but I was impressed. Tables for six or eight, set with white linen table cloths and real china. Real food, not institutional. Servers who were both pleasant and competent. A little jazz played in the background.

“They take turns choosing what kind of music to play,” the administrator told me. “Also, people sit at the same table for about two months, but then we rearrange the seating plan so cliques don’t form and they all get to know each other.”

Every resident’s room is unique in configuration. Some have window seats. All have walk-in closets, high ceilings, and private bathrooms that include showers with seats and grab-bars. The rooms are spacious and cheerful.

I just never wanted to see my father leave his home.

But this isn’t an institution. It’s almost more like a sanctuary.

“We have lots of activities for the residents,” the administrator said. “We get tickets to the Hall of Fame Classic baseball game and sit in the grandstand so they are shaded from the sun.”

Dad would really enjoy that.

“Next week we’re going on a boat ride on the lake and maybe having a picnic on one of the beaches.”

I would like that.

I reached the end of the block with Maggie and looked back at the building.

From this corner, it still looked lovely.

I guess it’s time to finish the application for him.

Caregiver’s Serenity Prayer

God, grant me the serenity to accept the things I cannot do,

I can’t “fix” my loved one.

I can’t make him think more clearly.

I can’t make him understand.

I can’t go back in time, and mustn’t languish over how or what he was, because he is who he is now and that’s where we are.

Courage to do the things I can,

I can handle business affairs — writing checks, paying bills, scheduling appointments.

I can do laundry.

I can prepare meals and serve snacks.

I can answer the phone.

I can chauffeur.

I can explain things over and over and over and over, and set my exasperation aside.

And the wisdom to know the difference.

When I lay in bed at night, let me not angst over the battle, but, in the weariness of a hard-fought day, take my rest knowing that I did the best I could.

Few will see or know what I do.

My own loved one will never fully grasp the sacrifice that I, and my husband, and my children, are all making on his behalf.

But it is right and good.

And You know, o Lord.

Let that be enough.


Adapted from The Serenity Prayer by Reinhold Niebuhr.