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.

 

Why Norway — part 2

Lest anyone think we’re independently wealthy and that’s how we travel the world, two things:

  1. International travel is not much more expensive than travel within the USA. In fact, I honestly think it could be less, depending on the country. Food and lodging can be pretty cheap in some parts of the world.
  2. Each of my children received some money from my mother’s estate in the same way her mother gave money to each of her grandchildren. My money from my grandmother was used to purchase my first car – a 1970 VW bug. Some of my children used their money towards a car, too. Mary and Karl both expressed a desire to travel.

Why Norway? I asked Karl on our way home. Norway wasn’t on my radar at all.

If someone asked me, I would say Israel — but that’s not a trip that can be safely done on a whim.  It’s my dream, though, to go to Jerusalem. I want to pray with my hands on the Western Wall. I’d like to go to the Temple Mount, the Mount of Olives, the Garden Tomb. I want to visit Yad Vashem and I want to eat fish on the shore of the Sea of Galilee.

Instead I ate fish soup on the wharf in Bryggen. (It was amazing.)

Karl’s reason? “The pictures looked cool.”

I guess that’s reason enough.

In retrospect I can see how much I needed Norway.

My father’s world shrank significantly while I was away. He’s afraid to go into rooms, and when he enters, the door must be closed behind him.  He throws his hands up in fear or anxiety when I open the door to leave.

“Sally! Don’t DO that!” and he grabs my arm if I’m close enough. “Don’t go out there! You don’t understand!”

He’s right. I don’t understand.

And he can’t explain it.

So we stay in stuffy rooms watching Wheel of Fortune and Jeopardy.

And I think about the vistas of Norway.

Fløyen, above Bergen

The view from our Airbnb

The mind can be so fragile. While I was gone, the fragile balance was upset, and I don’t know how to put it back.

So I think about the piles of rocks I saw along the river, and the raging waters that were so close, and how we all teeter at times.

On the way from Berekvam to Flåm

I drove in Norway — not something I recommend. The roads can be narrow and winding. My father would have remarked on the switchbacks that we saw from the train.

Switchbacks

When I drove, I was too busy worrying about running into another car to try to imagine the switchbacks. I drove roads barely wide enough for the VW Golf I rented, and would come around the corner and meet another car going in the opposite direction.

This was a two-way road.

I quickly learned to throw the car into reverse and back up to a broader area where the other car could get past me.

Or be grateful when the other car did that for me.

Life has been like that for me, too. I can’t see what’s ahead and I don’t have much wiggle room.

But I have Norway, and it was beautiful.

So I’ll cautiously proceed.

When my father tells another switchback story, I’ll have some of my own now.

While I Was Away

I can still see the woman’s face as she said the words to me.

She started off saying, “It’s such a good thing you’re doing — keeping your father home.” But then she stopped smiling and looked me in the eye, “You can’t do this forever, you know. There’s going to come a point when you have to place him somewhere that can take care of him.”

My dander rose a little when she said that. I thought, That day will never come.

It nearly came last night.

Ten days ago I took a trip with two of my children. Something changed with my father in the week that I was away. He started fearing certain doorways and needing certain doors to be closed. He started refusing to go down hallways in the house where he has lived for 50 years.

“You don’t understand, Sally,” he’ll say to me, gripping my arm and pulling me close to hear his words. “You don’t want to go there.” He’s emphatic. His words have an urgency evidenced by his tight grip as he says them.

When I tell him that I don’t understand, he says, “How can I explain this to you?” After a long pause during which he’s unable to come up with an explanation, he’ll simply say, “Please don’t open that door.”

Last night he turned off the baseball game and headed to the dining room, announcing that he was going to bed.

“Where are you going to sleep?” I asked.

“Here,” he said, and he pointed to his heart.

“Will you walk with me to your bedroom?” I asked, slipping my arm under his to support and guide him at the same time.

He planted his feet. “You don’t understand.”

After a bit of coaxing, loud arguing, pleading, and everything else I could think of, Bud and I, one on either side of him, forced him to take the steps he clearly didn’t want to take. Once he saw his room and his bed, he was fine (more or less). For a few minutes, though, it was ugly.

I lay in bed afterwards feeling discouraged and thinking, What would Penelope Lumley do?

Penelope Lumley is the plucky governess in The Incorrigible Children Of Ashton Place series (by Maryrose Wood). The motto for the school she attended, The Swanburne Academy for Poor Bright Females, was, “No hopeless case is truly without hope.”

I pictured the woman saying, “You can’t do this forever,” and I pictured the fictional Penelope Lumley reminding me that “No hopeless case is truly without hope.”

There has to be a solution.

In Norway (that’s where I went on my trip) we saw a house set up high overlooking a fjord.

Our guide told us that it has no road access. The old farmhouse had fallen into disrepair until a couple bought it and turned it into successful guest accommodations. Visitors arrive by boat at the base. They climb ladders and hike steep trails with switchbacks to reach Stigen Gard. It takes over an hour to make the ascent.

Some would have said the rundown farmhouse was hopeless, but no hopeless case is truly without hope.

The view at the bottom was beautiful.

I’m sure the view at the top is even better.

I just have to figure out how to do it.

Goals, objectives, strategies, outputs, and outcomes

~~ ONLY ONE GOAL ~~

The other night at dinner one of my children was talking about his goals. My daughter-in-law asked, “Are you talking about goals, objectives, strategies, outputs, or outcomes? They’re all different, you know.”

I messaged her this morning to ask her to list them again and then I started looking up the differences.

Most of the websites that define the terms are about grant-writing — which makes sense because Emily writes grants for her job.

I read through several websites. As best I can figure out,

  • a Goal is broad and general. It defines purpose.
  • Objectives are specific and concrete. They move you toward your goal.
  • your Strategy is the approach you take
  • your Output is the actual result of your work
  • your Outcome are the changes that were wrought as a result of whatever it is you’re doing

I smiled and nodded as I read. I understood, but the hard part is application.

So I decided to tackle just one goal à la Emily the grant writer.


GOAL — to keep my father home.

The top story in today’s newspaper cemented that: 

This happened in the nursing home where my mother had been. I get a pit in my stomach when I read these stories.

I know that not everyone can care for their family member at home for a number of reasons. To those of you who cannot, I give this advice: Be present. On a regular basis, be there. Talk to the staff. Talk to the other residents. Look through your family member’s closet and dresser to make sure things are there, clean, and belong to your family member.

My goal, though, is to keep my father home.

OBJECTIVE — Live in the same house with him.

STRATEGY — Move to Cooperstown. I know many people move their parent(s) in with them, but, for a number of reasons, this wasn’t the best option for us. I moved here in 2015 with my two youngest daughters and we hoped that my husband would soon join us.

This house had become the repository for many family members. In order for us to live here, we had to clear stuff out.

And we did.

But there’s still a long way to go.

OUTPUT —We’re here and my father is here.

We’ve reclaimed rooms in the house so the kids have space that is theirs. I’ve slowly whittled away at stuff that has accumulated here. Two loveseats went to the curb a few weeks ago and were quickly taken. I’m making headway with the boxes of papers. We still have more to go, but we’re moving in the right direction.

After being a frequent flyer at the Emergency Room for chest pain, my father’s doctor and I came up with a strategy. She told me to 1) Sit him in his recliner with his feet up. 2) Check his blood pressure. 3)DON’T take him to the ER for at least 2 hours unless his numbers look bad. The first few times were rough — he was very insistent that he needed to go, but with his BP, pulse, and O2 all normal, I told him that we needed to wait. Each time whatever it was passed and he went back to bed. We’re making progress.

OUTCOME —My father is still home. It’s not so much a change as standing our ground.

I think that’s an accomplishment. It’s not easy. It’s hard on everyone, but as the doctor we saw today said, “I would do anything for this man.”

My father is that kind of person. Having lived a generous life, he should be able to reap some of what he has sown.


A Privilege

Yesterday I ran into someone at the pool that I hadn’t seen in years — Bridget‘s father.

Bridget was on the first team that I coached and I still think back on her fondly. In fact, I had just been telling Laurel about Bridget the other day.

Bridget held all her team records with open hands. When Helen was quite young, Bridget told her to go break all those records. It was such a gift, so encouraging. Helen went on to break quite a few of them.

Anyway, Bridget’s father, Mike, asked about my father. I told him that I was staying with my father to take care of him.

“It’s such a privilege, don’t you think?” he asked.

I nodded in agreement.

Those were words I needed to hear.

Sometimes caregiving doesn’t feel like a privilege. It feels more like a chore. When I was home with small children, there were days when I would  look out the window and long for the freedom to go do something, anything besides laundry and cooking and changing diapers and wiping noses.

I used to bring my kids to the gym for a playtime we called “Kiddie-gym.”  The pre-schoolers would climb around on the mats and throw balls and scoot on scooters. The moms would sit and talk.

One day one of the moms talked about trying to find childcare for her twin two-year-olds so she could go back to college for a graduate degree. The mom next to me leaned close and whispered, “After all she went through to have those children, she’s abdicating her responsibility.”

It’s true that the woman with the twins had used in vitro fertilization. It’s true her husband had a good job so she didn’t need to work. But abdication? It seemed like a strong term to describe a mother furthering her education. Abdication was what a king did when he gave up his throne.

My take-away from that conversation, though, was that motherhood was on par with royalty. It was an honor and a privilege to be a mom. On my looking-out-the-window days, longing for something else, I would remind myself of that. I would lean in and embrace the wearisome work because not everyone has that privilege.

This morning a woman complained to me about the child-care hours at the gym.

“They don’t open until like 8:15 AM and they aren’t even open every day,” she said. “What if someone wants to work out before they go to work?”

“Maybe their spouse or significant other can watch the children,” I suggested.

“That discriminates against single moms,” she replied.

“Being a parent involves a lot of sacrifice,” I said, but I could see that she didn’t appreciate my answer.

I was glad for my conversation the previous day about care-giving being a privilege. It reminded me to stop thinking about the things I can’t do, but to appreciate the things that I can.

I can find the Jumble in the newspaper.

I can change the channel to Jeopardy.

I can fix over-easy eggs.

I can help with crossword puzzle clues.

I can drive him to the doctor or to get a haircut.

I can rescue photographs from the garbage.

I can remind him of people’s names.

I can tell him at 3 AM that it’s time to go back to sleep.

I can keep him in the home where he has lived for over 50 years.

Yes, it’s a privilege.

 

Shouting

Laurel said the other day, “We should all learn another language. As a family, you know?”

“Why?” I asked.

“Well, then if we’re someplace all together and we want to say to something to someone in the family but we don’t really want everyone else to know, we can just say it in that other language,” she said.

I think she was thinking along the lines of a let’s-get-out-of-here signal.

“Like Swedish,” she said. “We could all learn Swedish and nobody would know what we’re saying.”

“Ummm… you’d be surprised,” I told her. “I’m pretty sure Amy knows Swedish.”

Amy — former pastor, dear friend.

“Oh, well…” Laurel said. “You know what I mean.”

Personally, I think we should all learn sign language. Not as a secret language — because there are a lot of people in the world who know sign — but as a quieter way of communicating.

I can always tell when my father’s hearing aids aren’t working.

“What?” he’ll ask.

Frequently.

“I’m having trouble hearing you,” he’ll say.

I’ll check to see if his hearing aids are in, and, if they are, if he has turned them on. Often these days he forgets the latter.

The other day Mary had a dentist appointment. As she and I headed out the door, I stopped to check my father’s hearing aids — and turned them both on. He was on his way to sit in the living room with the Daily Jumble.

An hour later when we got home, he was standing at the kitchen table.

“What’s going on, Dad?” I asked.

“I need to put this in my…” and his voice trailed off as he searched for the word. He was holding a hearing battery in his hand.

“You need to put a new battery in your hearing aid?” I asked.

“Yes,” he said, and he pointed to his right ear — where there was no hearing aid.

“Okay, I can help with that,”I said. “Where’s the hearing aid?”

“That’s the problem,” he said.

“Did you set it on the table here?” I asked, and began moving papers and looking.

“I don’t know,” he replied — and that became his reply to every question.

“Where were you when you took it out?”

“I don’t know.”

“Were you sitting in your chair in the living room?”

“I don’t know.”

“Did you go in your bedroom?”

“I don’t know.”

I began looking everywhere — the bedroom, the bathroom, the living room, the dining room, the kitchen, the sun porch. I crawled around on the floor, looking under furniture, putting my cheek to the floor because that made it easier to see the incongruity of the hearing aid.

“Is it in your pocket?” I asked.

“I don’t think so,” he replied, but he dutifully emptied his pockets for me.

All this conversation was taking place at a high volume — because of the missing hearing aid. That, alone, is exhausting.

Twenty minutes into the search and I was ready to give it a rest. My neck hurt from sleeping in a bad position the night before and this cheek-to-the-floor business wasn’t helping. I sat down.

“We’ve got to find it!” my father said when he saw me sitting. He was looking through some papers that hadn’t been moved in a year. The hearing aid would surely not be among them.

“Criminy,” I muttered under my breath. My neck ache was quickly becoming a headache.

“Keep looking,” he said urgently. “We can’t stop looking!”

I got back to my feet and went back over the same places I had been looking. Finally, in his bedroom, I spotted it poking out from the back edge of a chair cushion.

I could see the relief on his face when I brought it to him.

“Where did you find it?” he asked.

“On the chair in your room,” I replied, while trying to put the new battery in.

“Where?” he asked again.

“On the chair in your room,” I replied, while trying to put the hearing aid in his ear.

“That’s better,” he said, once it was in place. “Where did you find it?”

Something in me snapped. “ON THE CHAIR IN YOUR ROOM,” I shouted — not in a nice way.

I left in search of Advil.

Frederick Buechner, in his new book The Remarkable Ordinary, talks about his mother’s hearing loss and the difficulty of shouting conversations.

from “The Remarkable Ordinary” by Frederick Buechner

I thought about my deaf friends who read lips so well — and appreciated that I don’t have to shout at all with them.

When Laurel said she wanted to learn Swedish, all I could think is that I’d rather learn sign language.

That way maybe I could communicate better with my friends who use it.

And when I’m old and hard-of-hearing, my family can converse with me without shouting.