Category: family

dementia · family

Helpful Words

Sally18 Comments
A foggy morning (that has nothing to do with the post)

“It happens to all of us, you know,” someone said to me when I was talking about my father’s latest foggy episode.

Yesterday morning, when my father was studying his watch, I asked him what time he had.

“Hmmm,” he said, studying the hands and the numbers, “it looks like it’s two minutes past… past… I think it’s two minutes past Tuesday.”

I texted my sister. “I have the title for the book about Dad and dementia — Two Minutes Past Tuesday.”

Funny — but so not funny. Not even remotely funny the more I think about it.

Later in the day he had essentially forgotten my oldest brother, or, at the very least, key elements of Stewart’s life.

“It happens to all of us,” this person said to me, when I told about the things my father had said. “It’ll happen to you. It’ll happen to me. It happens.”

Such a glib response made me wonder if I talk too much about my father and his struggles. I try not to.

The other day when two of my children had a discussion that devolved into nastiness, I said, “Let’s try this again. First she said this (fill in the blank), and then you responded with this (fill in the blank) — but what could have been a better response?”

We talked through possible responses that could have diffused rather than ignited the situation.

It probably won’t work. The next time, they may get after each other again, but maybe a seed has been planted. A seed with a better fruit.

Last night as I lay in bed thinking about the unhelpful response thrown my way, I wondered what I really was looking for in sharing the story of my Dad’s poor thinking. What would have been a better response?

Nobody can really fix the situation. It is what it is.

But here are a few things that may have sounded better.

My sister’s response — “Oh my.” Two words show that she feels the same dismay that I do.

“I’m sorry.” It can be a pat response, but it can also be very sincere. It shows compassion and sympathy.

“That must be so hard.” Yes, yes, it is. I appreciate when people acknowledge that.

“Is there anything I can do?” Yes, there is. You can visit him. Don’t worry about whether he’ll remember your name or not — because the visit isn’t about you. Don’t worry if there are long periods of silence while he searches for words, or if he loses his train of thought altogether. He loves having people sit with him, talk with him, and listen to the same stories (or story fragments). Don’t feel that it’s a waste of time because he may not remember. For that hour that you’re there, he’s loving it. I’m loving it, too, because he’s being fed mentally by the presence of another person.

“How are you doing?” Some days I’m not doing terribly well with all this. Thanks for asking.

family · photography

Sunset – Sunrise

Sally6 Comments

Last night, I picked Mary up at 8:30. She had to work late because of induction weekend. Everywhere in Cooperstown, it’s all hands on deck.

On the way home, I kept saying, “Look at that sunset!” It was red and orange and gorgeous.

She dutifully looked and agreed.

Then I said it again.

Lather-rinse-repeat.

When we pulled in the driveway, I said, “I can’t stand it. I have to take a picture of it.”

“Sunset photograph number four-thousand-six-hundred-and-fifty-three,” Mary said. She knows me well.

I snapped this shot on my phone.

“Dang,” I said. “The colors are never right.”

“You can focus it, you know,” Mary told me.

No, I didn’t know.

She took my phone/camera, pointed it at the sunset, tapped the screen on the sunset itself, and took this picture.

Yes, that was closer to the colors. Still not the same as being there — but definitely closer.

This morning the sunrise was ridiculous. I couldn’t stop looking at it.

“I can’t stand it,” I said to myself. “I have to take a picture.”

In my head I heard, Sunrise photo number five-thousand-four-hundred-and-sixty-two. Someone somewhere was laughing at me.

First shot:

Not terribly exciting.

I tried the Mary-technique and tapped the screen, focusing on the colors of the sunrise.

So much better.

Thank you, Mary.

Sometimes it’s possible to teach an old person a new trick.

family

The Rest of the Story (or, An Ethical Question)

Sally7 Comments

If you knew that one phone call to an influential person would elevate the level of care received in a health care setting, would you make that phone call?

I delved into that question yesterday when I met with someone on an unrelated matter. After taking care of some business, our conversation detoured into my father’s most recent emergency room experience.

“Call me next time,” he said, and handed me his card. “Keep this in your wallet and call me.”

“I won’t call you,” I told him.

My parents raised me to believe that everyone should be treated in the same way. Everyone deserves dignity. Everyone deserves good care. Everyone.

Yet, despite my saying otherwise in this man’s office, I had, the day before, been searching for his phone number while sitting at Hallway 6 with my father. It turned out the website wouldn’t load because it was down for maintenance.

As my sister would say, “It was a God thing.”

I was ready to throw my principles out the window for a little respect for my father. See how shallow I am?

But God, or happenstance, kept me from calling, and my principles remain mostly intact.

Because, in the midst of this search for someone who could get us out of the hallway situation, Roy the cheerful PCA came along.

“Tell him a story,” he said.

The rest is history — castles in Bosnia and a hallway bed that became a place for storytelling.

Next time, would I make the phone call? I like to think not.

When I sit quietly with my ideals, everything is clear. I am confident in how I would act given a difficult situation.

But in the midst of a trial, idealism and nobleness vanish like smoke. I need safety measures and reminders in place. I need websites to malfunction.

I intentionally did not put that business card in my wallet. I don’t want to be tempted.

A different hallway bed I sat beside last year.
The call bell for the hallway bed last year. My father didn’t even receive this.

 

family · Life

Tell Me a Story

Sally13 Comments

During our down time in Bosnia, Leah starting asking, “Tell me a story.”

It was so open-ended that I struggled with it.

I asked her if she got the idea for that from La La Land. Those words were the lead-in to my favorite song from the movie.

Leah assured me that, no, she had been asking that question for years. I’m pretty sure that La La Land got the idea from her.

So, sitting in the shade one day, she said, “Tell me a story.”

“I can’t,” I told her. “I need some parameters.”

“Okay. Tell me a story about when you were in grade school,” she said — and I did. I told her about a day in 3rd grade when I experienced agony and ecstasy, as best a 3rd grader can.

In short, our class had gotten back from a trip to the library. I had checked out Mark Twain’s “The Prince and the Pauper.” My teacher, Miss Bliss, held up the book (and me, figuratively) as an example of a student choosing good literature to read. Later in the day, I couldn’t find my math paper in my desk — I’ve been a messy for as long as I can remember — and she dumped the contents of my desk on the floor in the middle of the classroom. I can still remember that shame. Same day.

Later, Leah asked Mary to tell a story, and Mary launched into an imaginative story with dragons and little girls. Ajla, one of the Bosnian girls, listened wide-eyed and delighted.

“You are a great storyteller,” she told Mary, “in the lies.”

Ajla

Ajla’s English was excellent. Except when she didn’t know the right word.

Yesterday, I spent some time at the emergency room with my father.

As we waited and waited, I grew fidgety. An excellent PCA named Roy helped turn my attitude around.

Roy had stopped by my father’s hallway bed several times. He was always cheerful. On one of his check-ins, he looked at me and said, “Tell him a story.”

I was busily mentally drafting complaint letters and griping to my sister via text. I didn’t respond to Roy, so he repeated it.

“I’m talking to you,” he said. “Tell him a story.”

“I can’t,” I said. “I need some parameters.” It was a deja vu moment — and I was back in Bosnia.

“I’ll get you started,” Roy said. “‘Once upon a time in a castle far, far away…’”

I laughed, and took up the story.

“Dad, did I tell you about the castle where we stayed in Bosnia?”

“A castle?” he asked.

the castle

“A real castle,” I repeated, “from the Ottoman Empire.”

Telling him about the castle took our minds off the fact that we were waiting in the emergency room.

With Leah, it took our minds of the heat and lethargy of the day.

“Tell me a story.”

Those are magical words.

 

family

Mentor

Sally4 Comments

A Facebook friend has been asking a “Question of the Day.” Yesterday, he asked this:

Who is your “I’ve never met you and likely never will” mentor?

I realize more and more how much of a mentor my mother was for me. She was, above all the other things, a caregiver. Obviously I’ve met her, though. I just didn’t appreciate her enough in that role.

The thing is — a caregiver’s mentor is never going to be in any spotlight.

She’s going to be home, quietly doing mundane tasks.

She’ll find her strength and solace in an abiding relationship with God.

She’ll be able to count on one hand her closest friends, but will still have a wider circle of loved ones, people she cares deeply about and who care deeply about her.

However, most people won’t even be aware of half of what she does.

*****

The other day, at Cooperstown’s Antiquarian Book Fair, I found a treasure that comes close to finding my mentor.

I found a Book of Common Prayer with a name imprinted on the front: Rachel Ware Fuller.

Inside, the inscription told me that the book had been a gift from her son.

And then, there were pages and pages of handwritten notes.

I thought I had found the treasure I’ve been searching — a mother’s spiritual summation, all the things she has learned through parenting and wifing and friending and living. This would have been the mentor I never met and never will.

However, further inspection showed the notes to be from a Samuel Clark Harbinson, an Episcopal rector at a New England church. I’m not sure how the book was transferred from Rachel Fuller to him, but it was. Another inscription revealed that.

His notes are fascinating. And challenging. And thought-provoking.

Someday though, I hope to find a well-worn book with the margins and flyleaves full of notes written by a caregiver. I want it to have a coffee spill on a page or two, and ink smeared by tears on many pages.

And notes. Lots of notes.

I’ve already started accumulating a collection of other people’s journals and some religious books with notes in the margins.

But I’ll keep looking, at book sales, and in book boxes, for this Holy Grail of books.

That’s where I’ll find my mentor.

family · Life

Good-bye, Odyssey

Sally15 Comments

Bud said that he woke up in the middle of the night wondering if it was the right decision.

I reminded him all the reasons why — the catalytic converter, the exhaust system, the timing belt, the short circuits in the electrical system.

Still, our Honda Odyssey had taken us many miles — well over 200,000. Many trips to Florida, to South Carolina, to North Carolina, to Washington, DC, as well as the hundreds, maybe over a thousand trips between Cooperstown and Greene.

It’s almost as old as Laurel.

It has served us well.

When Philip was a little boy and we traded in one of our cars, he drew sad faces in the dirt on the windows. Laurel did the same last night with the Odyssey. My bookend children think the same.

Sad face, broken heart, bird poop (right to left)

We’re trading in the Odyssey. It makes us sad.

Sad

We’re getting a new car. It makes us happy.

Happy

I told a friend that we get a new car every twelve years or so, whether we need one or not.

We need one.

It was the right decision.

 

elderly · family

Surgery

Sally12 Comments

Each member of the surgical team looped through the room.  An introduction. Name and date of birth requested. The why-are-you-here question.

My mother didn’t know the answers when I had sat in the same spot with her some years before. I helped.

My father knew — for the most part.

“Did you have anything to eat this morning?” the anesthesiologist asked.

“Not too much,” he answered.

“He had nothing,” I said.

“Has the surgeon marked on you yet?” a nurse asked.

“No, I don’t think so,” he answered.

“Yes, he did,” I replied.

“Can you tell me about your other surgeries?” the surgeon asked.

“It’s been years and years,” my father answered.

“Last August he had a VP shunt put in, and a few years before that he got a pacemaker,” I answered.

He knew his name. He knew his birthday. He knew what the surgery was.

All in all, I’d say he did pretty well.

A few weeks ago, he had had an episode of chest pain that landed him in the Emergency Room. They ask a different set of questions.

“Are you still a full-code?” the nurse had asked, but then she looked to me for the answer. It’s an uncomfortable question.

“Well, I’m not ready to cash in yet!” my father answered.

“Would you like to be placed on life support?” she asked.

“I’m not going to live forever, you know,” he replied.

His mixed responses were confusing, but he and my mother had both very clearly written out their wishes many years ago. I told his doctor and she asked that I bring in a copy to put in his chart. Just so it’s there.

Last night, I went for a walk. The fields were fifty shades of green. The timothy alone was a full palette of color — spring green, grass green, grey green, a whispery pale green at the very edges of the flower-head.

The fields whispered with the breeze, carrying along its little breaths like a melody passed around an orchestra. The meadow swayed and danced, and the only audience for this performance was the deer, the red-wing blackbirds, and me.

When the Bible talks about grass, it’s usually in reference to transience.

“The grass withers, the flower fades…” (Isaiah 40:8)

The comparison isn’t that man will last forever. We are just as transient.

A surgery day is a time to remember that.

It’s a time to pause. Even if we’re not ready to cash in, it’s okay to remember that we aren’t going to live forever either.

*****

The surgery went well. He’s already home. He’s not ready to cash in yet — and neither am I.

family · Life · photography · Travel

Red-Winged Blackbird

Sally13 Comments

The red-winged blackbirds begin check-check-check-ing at me as I walk down the road.

With dog, without the dog — it doesn’t matter. I’m a threat and they need to let the world, or, at the very least, their fellow blackbirds know that danger approaches.

They sit on fenceposts, telephone wires, tree branches, cattails, and other tall weeds.

Red-winged blackbird speck

I have stopped on multiple occasions to try to snap pictures of them. I either end up with a tiny speck of a bird or empty wires, branches, etc.

They flee from the fenceposts when I stop walking. I can’t focus on taking a picture while walking. My phone is my camera, nothing fancy for zooming in. Walking pictures are a mess.

Frankly, I’ve given up on photographing them.

For me, the red-winged blackbirds must be enjoyed from a distance or in my periphery. As abundant as they are, they are also too elusive for me to photograph well.

Sometimes life is like that, don’t you think? It simply can’t be tackled head-on. We can’t stop and savor each little thing, but we can enjoy the brief moments as they pass.

Now the birds that have taken up residence in our birdhouse tease me in the same way. One tiny nondescript bird sits on the chimney of birdhouse, singing merrily, until I get out my phone/camera. I look to find the camera icon on my screen, look back up, and she’s gone. Either both birds in the pair are blasé brown, or I haven’t seen the mister.

Elusive

I need to improve my mental camera when I see them or my memory of their song or create some other method if I ever hope to identify these occupants.

Or, maybe I need to stop worrying about it and enjoy the moment.

Does everything have to have a name? Does everything have to be captured and held?

In our instant electronic gadgety techno age, we’ve lost the looking-out-of-windows and being-in-the-moment.

Sometimes I wonder if children riding in the car down the east coast of the United States even see the Pedro billboards. Or, in rural Nebraska or Iowa, if they see the monotony of corn fields. Or is that when they’re busy watching Frozen for the umpteenth time?

Because if they miss Pedro and the corn, they’ll most certainly miss the many red-winged blackbirds check-check-check-ing from the fencepost.

family · poetry

The Angels Were Angry

Sally4 Comments

And the angels were angry
At the crispness of the cake
“HOW DARE YOU,” they bellowed,
“MAKE SUCH A MISTAKE?!”

They brandished flaming swords
To bar me from my kitchen —
I felt like such a failure;
I knew they were itchin’

To use their blazing rapiers
Against the likes of me
Because I multitasked disaster
Where disaster oughtn’t be

Oh, the angels were furious
While smoke rose from the range
So I pondered how to soothe them
Then I spotted something strange —

A hero in a paper bag!
He boldly stood between
Me and my catastrophe
Better sight ne’er seen

“Begone!” I think he shouted —
Or maybe it was “Gwam!”
giggle-giggle “Wook! Wook!
Here I am!”

So the knight-in-paper-bag
Took my mind off of burnt cake
And I played with little Henry
Before I cleaned up my mistake.