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.

 

Sitting in the Ashes

A friend sent Bud a text Sunday evening that said, “Tell Sally that I’m sorry I couldn’t stay to chat. I don’t think crying counts as chatting.”

She and I have done that dance before — asking how things are going and then watching the other’s eyes fill with tears as she tries to find words. The slow demise of a parent is not easy.

Yesterday a lady from the Alzheimer’s Association called me.

Last week, when I had been in semi-crisis mode, a nurse had called her on my behalf but she had been on vacation. Now she was back and checking in.

“What’s going on?” the Alzheimer’s Association lady asked.

I replied with a lengthy convoluted story. It was like my poor attempts at knitting when I kept dropping stitches. Over and over I had unravel a little to go back and fill in a gap.

“I’m not telling this very well, am I,” I asked. I hadn’t known where to begin the story. A month ago? A year ago? While my mother was alive?

“I’m following,” she said.

And she listened.

For a long time.

When I was done, she didn’t offer advice or even the usual perfunctory consolations. She matter-of-factly told me about the services available through her organization and offered to send me some fact sheets.

Having a stranger listen — just listen — was exactly what I needed.

I wish I could do that for my friend — just sit with her in the ashes so she knows that she’s not alone.

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.

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.

Flowers and Weeds

Monday was not a great day.

I had taken my father to meet with his brother.

It was great to see my uncle and my cousin. While my father was so happy to see his brother, I was struck by my father’s struggle to engage in conversation.

A few months ago, at a doctor’s visit, his doctor asked him social questions about the family and his daily activities. When he didn’t answer immediately, I jumped in to help supply the answers. She looked at me and said, “I’m interested in the family and all, but this is also part of my assessment.”

She actually said it much nicer than that, but that was the gist of it. Stop answering for him. I need to get a handle on what he’s able to comprehend.

Since then, I’ve very consciously placed myself on the outskirts of his conversations.

At lunch with his brother, the conversation floundered.

Uncle Stewart: So, Don, what books are you reading these days?

Dad: Oh, I don’t know, a little of this, and — I guess I don’t read many books.

I stayed out if it. Nearly every day my father pulls new books off the shelf and starts reading them. Out loud. I put away eight books yesterday.  Everything from Outlander to the Book of Occasional Services to Murder at Fenway Park to Scotland Forever Home.

My uncle also tried talking to my father about the Red Sox.

Uncle Stewart: Who’s your favorite player on the Red Sox, Don?

Dad: Favorite player? Uh…

My father couldn’t come up with any names, so I jumped in. “How about Mookie Betts?”

He smiled broadly. “Yes, I like Mookie Betts.”

I felt sad afterwards — grieving a loss that was in progress, like watching a thief steal valued possessions and not being able to do anything about it.

Maybe that led me to my action later that day. You see, I broke one of three rules I have for dealing with a person who leaves unkind comments on my blog.

My rules are simple:

  1. Don’t engage. This includes responding in any way or acknowledging anything.
  2. Document everything. This is based on legal advice.
  3. Don’t change. This is also based on a discussion with my lawyer. I asked him, “Should I stop blogging?” “Absolutely not,” he said. “Don’t change your life to comply with a bully.”

I wrote a since-deleted password-protected post that bordered on engaging (Rule #1). Mostly the post bemoaned the lack of civility in our engagement with others. Still, I deleted it.

Yesterday, as I tended the flower garden, I found myself marveling at the way the more I cut the flowers back, the more blossoms they produce.

Daisies!

Look at all the daisies yet to come!

I moved to another garden where I’m in my third year of trying to eradicate Japanese Knotweed. I use a combination of Round-Up and hand-weeding. Surely, it will eventually die out. It’s so persistent, though.

As I prayed while weeding, one of Sunday’s scriptures came flooding through my mind.

“…a thorn was given me in the flesh, … to harass me … Three times I pleaded with the Lord about this, that it should leave me, but He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” … For the sake of Christ, then, I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. (from 2 Corinthians 12)

It’s all a gift. The weeds, the thorns, the pruning, the losses.

The first dahlia of summer opened last night and I’m content.

 

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.