dementia

Sitting in the Ashes

September 12, 2018 Sally2 Comments

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

September 4, 2018 Sally4 Comments

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.

Travel

Why Norway — part 2

August 28, 2018 Sally4 Comments

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

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.
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.

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.

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.

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.

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.

family · Life · Travel

Why Norway

August 27, 2018 Sally5 Comments

The place we used to stay in Myrtle Beach had no phones in the rooms. This was back in the 70s, when phones that fit in your pockets weren’t even a twinkle in a computer chip’s eye. Phones had dials and cords.

In those first few years in Myrtle Beach, if someone needed to reach my father at The Teakwood, they had to call the motel office. Someone from the office would find my father and he would have to go to the office to take the call or return the call. Things really advanced when they got a phone with a portable handset.

I asked my mother about the lack of phones. Somehow it made The Teakwood seem inferior to its phoned competitors.

“It helps Dad relax to get away from the telephone,” she said. I hadn’t thought about the tyranny of the telephone until that conversation.

I recently heard on a podcast that the presence of a phone at a meal — even if it’s facedown on the table — causes the conversation to be more shallow.

But this isn’t about phones.

It’s about why I went to Norway.

Last year I traveled to Europe for the first time since I was 5 years old. Twice.

The first trip was to take my father to Normandy, something he had longed to do for many years. I was excited for my father, but ambivalent for myself. I knew that I should be excited. I just couldn’t muster up the excitement on my own.

Then we went to Normandy and I loved it. I think I could live in Bayeux and be quite content there. The cathedral, the farmers’ market, the patisseries, the narrow streets, the old buildings — all of it lovely. I didn’t think anything could top Normandy.

Until Bosnia two months later. The land, the people, the hospitality. I came home from that trip quite full.

So when I was feeling depleted this year, and so many people kept reminding me that caregivers need to be sure to take care of themselves, I thought about what had pressed a reset button in my soul and given me rest and strength for the days ahead. Travel. Like the phoneless Teakwood did for my dad.

I applied and was accepted to a writer’s workshop with Ann Voskamp — but it was in the wilds of Alaska. When I realized how remote the workshop was, and how, if something happened at home, I would have a hard time making an emergency trip back, I asked to postpone my attendance for another year.

Then I considered a trip back to Bosnia, but nothing seem to fall into place with that.

Finally, I asked Karl — who had been saying that he wanted to travel — where he wanted to go.

“Norway,” he said.

So Karl, Mary, and I traveled to Norway. And Denmark. And Sweden.

If an emergency had come up, I was always near an airport.

Except for the day we kayaked in the fjords. But truthfully, that was the most renewing day of all.

dementia · family · Travel

While I Was Away

August 25, 2018 Sally2 Comments

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.

Life

My Favorite Porcupine

August 13, 2018 Sally4 Comments

We named him Darius. I’m not sure why. I said we needed to come up with a name for our pet porcupine and Karl suggested it.

Every morning and every evening Darius would waddle out from his spot under the chicken coop and eat apples. For a wild animal, he was surprisingly docile. I could walk close enough for pictures. He would look at me blandly and continue munching his apple.

We first saw Darius when I let our dog out of the house one evening. Maggie ran straight towards the chicken coop. I watched her do her play-with-me dance that she does with our cat sometimes. A crouch, a pounce, a jump back – tail wagging the whole time. When I went to investigate, I saw the porcupine.

“Call Maggie,” I yelled back to the house, and the kids did. The last thing I wanted was a visit to the vet for quill removal. Fortunately, Maggie is fairly obedient and went back inside. Darius waddled into the woods.

On successive nights, I watched him squeeze into a gap underneath the unused chicken coop.

I warned my brother and sister-in-law about the porcupine. They have two puppies that are still learning obedience. Bear and Bozeman might have been more aggressive in wanting to play with a porcupine.

Toward the end of Darius’s visit, he stopped going under the chicken coop. He stayed under the apple tree all day, nose toward the trunk, sleeping.

One day, someone threw an apple at him.

“Why did you do that?” I asked.

“I wanted to see if he was alive” was the response.

He was.

But his behavior worried me. It’s not normal for a porcupine to sit out in the open all day.

I called the animal control officer.

“I can come right over and shoot him,” he said.

“I was thinking more along the lines of trapping him,” I replied. I couldn’t stomach the thought of him shooting Darius.

Years ago the police came to shoot a sick raccoon in our backyard in Cooperstown. We saw it staggering around in broad daylight. My boys watched from the window while the policeman “took care of it.” But nobody was attached to the raccoon. We hadn’t watched him eat apples or named him or anything.

The animal control officer said, “I can’t get a trap there until tomorrow morning.”

I walked up to explain matters to Darius. He was still sitting nose-to-the-trunk under the apple tree, but he bristled right up when I approached. It was the first time I had seen him do that. I decided not to tell him. I just studied him a while, wanting to store him in my memory.

Later in the day, I saw him trekking across the backyard and into the orchard. He picked a dwarf apple tree and climbed it.

Later Bud saw him the street and head down into the pasture.

In the evening, Bud and I walked around the apple trees in the pasture looking for him. I called animal control and told him the porcupine was gone.

“He was my favorite porcupine,” Mary said, when I told her.

“Mine, too,” I said.

That’s what happens when you get to know somebody.

family · Life

Rescues

August 8, 2018 Sally5 Comments

I draw the line at worms. I don’t rescue worms in the driveway after it rains.

Mary does that.

One day this spring she went to my brother’s house to feed his puppies and take them out, and it took her much longer than usual.

“Was there a problem?” I asked, picturing some sort of puppy mischief.

“No,” she said, “I rescued a worm in his driveway. Then I saw another and another. I couldn’t stop.”

I rescue red efts when I see them.

They’re just so darn cute.

More often than not, though, I see eft fatalities (eftalities?) as I walk our road.

One day in May, Mary and I found a confused turtle on the lawn. It was heading up the hill, away from the river and the road, but it had a long way to go before it reached any shade.

I texted my brother. “Hey — would you like a turtle to take into the classroom?” He’s known as Mr. Science, and, in the spring, often brings nature-y things to school.

By the time he answered, though, the turtle was gone.

A few days later I saw what I think was the same turtle crossing the road.

“No!” I yelled to it, and turned to bring my groceries in the house. When I got back out, I was too late. The turtle had already been run over by a car.

Sadly, I picked up the poor turtle, its shell cracked and turtle blood oozing out, and carried it across the road to our compost heap. I nestled it down in a little shady spot, returning it to the earth — ashes to ashes, dust to dust, you know, but without a true grave.

The next day, when I brought compost over, the turtle was gone.

Honestly, I thought a predator ate it. Or maybe the crows who are always raiding the compost decided to have a little turtle meat with their moldy bread.

Fast forward to today. I was waiting to cross the road to get the mail while a steady stream of cars drove past in both directions. After the last car, I took one last look down the road to make sure the coast was clear.

A turtle was crossing.

I sprinted to save that turtle.

The crack starts by its head and arcs left to its front leg

How it had made it as far as it did with all those cars was a mystery to me. When I carefully picked it up to carry it across, I saw it had already been injured in the past.

Was it the same turtle? The cracks in the shell were exactly where I remembered them.

I brought it across to the compost heap. It’s a safe place.

I visited it later in the day. It was in a different spot and had fresh injuries.

I guess turtles are slow learners.

Or the world is a dangerous place.

Or both.

Lately we’ve had a new visitor to our yard. I promise not to help it cross the road.

family

Sweet Corn

August 6, 2018 Sally9 Comments

The other day I drove over to the local farmstead to buy some sweet corn for dinner. While I was selecting my ears and putting them in a bag, another man stopped to also buy corn.

He looked at me for a long moment and said, “Used to be a doctor on the River Road sold the best sweet corn around for a dollar a dozen.”

He looked familiar, but I couldn’t place him. He was a local man who obviously recognized me. He had the advantage there.

“I had forgotten all about that,” I said, and laughed at the pleasure of remembering. “You know why we stopped, don’t you?”

He shook his head, so I told him the story. Not many people know it.

When I was growing up, we used to sell sweet corn. I think it started as a way to give my sibling and me a little income and some responsibility.

Through the 70s, we all worked at it. Even after we were grown, it continued, although I’m not sure how.

These photos are from a vacation Bud and I took to Cooperstown in 1984.

At the time, my parents had a beautiful dog, a Briard named Natalie Bumpeaux.

Natalie had the goofy good looks of a sheepdog, but also the protective nature of a working dog. She loved my mom and tolerated the rest of the family.

In the early 90s, a woman stopped to get corn from the table, but there were no bags, so she walked up the driveway and onto the side porch. She looked around and found a bag. When she headed back to the corn table, Natalie ran up behind her and bit her in the calf.

My mother heard her yelling and came out to see what was happening. The woman told her that the dog had bitten her. My mother offered to take her to the hospital, or call, or make sure she was properly cared for. My mother was, after all, a nurse. The woman insisted she was fine and left.

Later that evening we were at the emergency room with one of our boys. We saw the woman who had been bitten — Bud recognized her because he had been out at the house when it happened — and she was in agony. She was limping around the waiting room and loudly complaining to anyone who would listen. She wouldn’t sit and put her leg up. She was on parade.

We called my parents and told them she was at the ER. They again offered to cover any bills.

Fast forward a month or two, the sheriff pulled up to the house.

“I’m really sorry,” he said, “but I have to give you this.”

It was a notice that my parents were being sued.

I have to remind myself that she wasn’t really a local. They had a local summer-house, but weren’t invested in the community. Neighbors just don’t do that.

My parents’ homeowner’s insurance took care of it, so I don’t know the exact outcome.

But it ended the corn business and left our family feeling gut-punched.

Natalie went to live on a farm that was more isolated than where my parents live, and with people who knew and understood Briards.

On the road of life, the incident was only a pothole.

And, honestly, it was nice to be recognized and kindly remembered by someone buying corn the other day.

family

Dan and Phil (or is it Phil and Dan?)

July 31, 2018 Sally2 Comments

I vaguely remember several months ago Mary telling me about this thing. It was some YouTube people or something. But it was in Schenectady.

“Go ahead and get some tickets,” I told her, “and we’ll figure it out when it gets closer.”

It got closer.

And closer.

I forgot all about it.

About a week before, Mary said, “Remember that thing?”

I didn’t.

She reminded me.

“I don’t know how we can do it,” I said. “Could you try to sell the tickets?”

The morning of she came to me with the saddest of sad faces. Don’t misunderstand — she didn’t beg. I could see that this was important to her so I came up with a plan. It turns out we’ll-figure-it-out-when-it-gets-closer means that I drive her.

“What is this thing we’re going to?” I asked while driving that night. Mary tried to explain, but I am NOT of the YouTube generation. I don’t understand it. At all.

We arrived in Schenectady, parked the car, and Mary said, “I think we should just follow all the teenage girls.”

So we did.

Truthfully, I still don’t know what it was I went to. Screaming girls? Two guys on stage? The closest analogy I could come up with is Rowan and Martin’s Laugh-In.

I feel asleep during the show. At one point I think they showed a picture of the most disinterested parent, and I was surprised that it wasn’t a picture of me.

But I tried.

And I rewrote “The Things We Do For Love” in honor of that night.

“Hey, Mom, remember when I bought a couple tickets
To hear some YouTube guys putting on a show?
You said that I could go, so I bought two.”
(The things we do for love, the things we do for love)

“Hey, Mom, I need someone to drive me to the show now.
Remember? YouTube guys? Their names are Dan and Phil.”
I looked at Mary’s face and knew this was
A thing I’d do for love (the things we do for love)

Like driving to a show, when you know
It’s a long way to go
And your eyes are drooping ‘cause you’re pretty tired
But you love the teenage girl that’s by your side
At the Proctor girls are squealing
And I get a sinking feeling

Whooo are Phil and Da-an?
How do I stay awake?
Ooh — I’m feeling groggy. Must not doze.

Like driving to a show, when you know
It’s a long way to go
And your eyes are drooping ‘cause you’re pretty tired
But you love the teenage girl that’s by your side —
At the Proctor girls are squealing
And I get a sinking feeling

Ooh — I love my daughter
Ooh — but Dan and Phil?
Ooh — I couldn’t tell you which was which

And so I fell asleep while Dan and Phil were on-stage.
I saw the paint balls and the guy strapped to the wheel,
But I can’t tell you much about the show –
‘twas a thing I did for love (a thing I did for love)

In case you’re not familiar with the original song —

Cooperstown

Free Parking (again)

July 30, 2018July 31, 2018 Sally3 Comments

Yes, we did it again this year.

Free parking for the Baseball Hall of Fame Induction Ceremony.

I’ve been feeling old.

And grim.

A day at a spa might have been nice, I suppose, if I was a day-at-the-spa kind of person. Honestly, today I’d be happy with a haircut, but even to get away for that is hard. If I have a spare hour, I choose to go to the gym for the endorphin rush of cardio and weights, not the hair salon.

As it turns out, a day of free parking is better than a day at the spa.

The crowd estimate yesterday was 53,000. That’s quite a few, given Cooperstown’s population is around 2,000.

Parking lots were springing up everywhere. Lawns. Driveways. Fields.

My brother mowed a patch in the field in front of his house and attached the “Free Parking” sign to his mailbox.

Cars slowed while the drivers read the sign. Some then zoomed on past, while others rolled down their windows.

“What’s the story here?” they’d ask.

Sometimes I told them the story — We used to live in town down the road from the induction site and gave away parking on our lawn. When we moved, my brother took up the charge at his house outside of town. It’s a fun thing to do. We love Cooperstown, and we want visitors to have a great time here.

Sometimes I answer, “It’s free parking.”

Yesterday a car pulled up and the driver asked about it. I told them it was free.

“What about the shuttle?” he asked.

“That’s free, too,” I said. “We drive you in our vehicle.”

“What about the $30 parking with a shuttle?” they asked.

“That’s a mile down the road on the left,” I said.

“Okay, thanks. That’s the one we want.” And off they went.

Later on the proprietor of the other parking lot drove up and asked my husband, “Why are you doing this?”

“Because it’s fun,” he answered.

It’s life-giving — to us.

The best part comes when they sit with us after the ceremony in the shade of our trees, drink a soda (free) and eat a hot dog (also free), and tell us a little about themselves.

The mother-son duo from Detroit was my favorite yesterday. She was 80-something, and full of spit and vinegar.

“Park behind Ohio,” I had told them when they pulled in, referring to car with Ohio license plates.

“That’s Michigan always. Behind Ohio,” the woman complained.

Later, she told us about her son that almost made the big leagues.

“Not me,” her son had quickly interjected.

“The scout told me,” she continued, “‘If I was looking for a pitcher today, I would sign him, but I’m looking for a big hitter.’ Then he signed that Charlie.”

She rolled her eyes, remembering the day, while her son rolled his eyes, having heard the story a million times.

I laughed.

And smiled.

And felt life renewed within me.

It is more blessed to give than receive.

It is also better than a day at the spa.