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fun in fours

Month: July 2021

To Poland 2021

Thursday 22 July 2021

It's been four years since we last did this. It's actually been more like six -- four years ago, we all went to Poland together. It was the 2015 trip that was split up. I wasn't even planning on going that summer, in fact. This year, just K and E are going, and that long long journey began this morning with a departure from the house at 2:15 to arrive before 4:00 to make it for the 6:00 flight from Charlotte to JFK. We usually go Charlotte-Munich-Krakow, but with covid restrictions and such, K wanted to fly directly to Poland, which meant leaving from JFK. She reasoned she stood less of a chance of having problems getting into Poland with an American passport and an expired Polish passport than into an EU state. When we did all this planning, Americans were still not admitted into Europe, I think. So we left ridiculously early to arrive the requisite 2 hours before departure.

You can see in K's expression just how excited she was. Even though the drive home would normally only be about an hour and twenty minutes, Google routed me a different way: 85 south was closed at some point for construction. We'd seen the backup forming (at 3:00 am), but I'd hoped it would have cleared up by the time I was heading back that way.

It was not, turning an hour-and-twenty-minute drive into a two-hour-twenty-minute drive. (I stopped just before getting on I77 to double-check, hence the two-hour-six-minute time.)

I got home to find Papa awake and needing assistance. By the time everything was squared away, it was 6:35. I set the alarm for 7:35 so I could get up to take L to volleyball conditioning, but of course I never really went to sleep. I was just dozing off as the alarm sounded. Back home at 8:00, I started Papa's morning routine, then left the rest to our wonderful CNA and headed out to the store to buy a few things. No point in lying down for an hour again, I figured.

In the meantime, K and E were having their own adventure, collecting their bags (not checked all the way through because the original plan had been to drive to NYC), finding their way to the terminal from which LOT departs -- all of which absolutely thrilled the Boy. In Munich the last time we were there, he was thrilled by all the moving walkways, all the planes visible from the terminal, and even the self-enclosed smoking pods. I'm sure it was just as thrilling in JFK.

"An airport is a paradise for a nine-year-old boy," I texted K. I always loved going to the airport for Papa's business trips: the hustle and bustle, the equipment, the planes.

But even then, a little one can get tired and frustrated when the layover is hours long. K had a secret weapon, though:

And of course, he knew what was waiting for him on the plane -- he'd been talking about it for the last two weeks:

The final text from K: we're on board but take-off is delayed thirty minutes. For once, that's not a problem: there's no connection to worry about. Waiting at the other end of the flight will be her brother, ready to bundle them off to Babcia's place.

I can only imagine Babcia's excitement after four years.

Volleyball End

Wednesday 21 July 2021

The Girl finished her summer volleyball season tonight by winning the grass championship for her age group. Her partner was a young lady she met while playing club ball this summer and with whom she immediately bonded. Birds of a feather and all that.

She was also my student last year, which made for some amusing situations.

"What are you doing, M?" I might ask when the team was taking a break between games.

"Studying for your test, Mr. Scott."

Family Badminton

Tuesday 20 July 2021

Helping

Monday 19 July 2021

The Boy likes to help, so much so that it sometimes can get in the way. But often it is really sweet how he pitches in. Tonight, for example, he insisted on getting Papa’s evening water prepared, thickened with some magical mystery white powder that turns water into a pudding-like goop that’s easier for Papa to swallow and less risky as well. In the meantime, K was preparping Papa’s dinner: warm blueberry cobbler and ice cream. Soft, easy to chew, tasty — a perfect dinner.

E then excitedly asked if he could help Papa eat.

“Of course,” we said. “Just make sure you go slowly: it’s difficult for him to swallow at times.” And so he stood patiently by Papa’s bed and helped him eat.

Nothing brings Papa back more completely than his grandchildren. Sometimes, when I walk in and greet him, I get no response. He’s off somewhere, seeing something, hearing something — but not there. Then E can walk in right behind me and say, “Hey, Papa,” and he perks right up: “Hey, little buddy.”

Once Papa is ready for his night’s sleep, I headed out to walk the dog while the Boy and K played cards. Last night, it was chess with me.

And L? She’s fourteen — just a little too cool to spend too much time with the family. Plus, she was at work today: she needed some down time.

Approaching?

Monday 19 July 2021

He takes a deep breath and then pauses. I watch his chest and wonder if this is it. I count — one, two, three. And his chest rises once again. It’s just like sitting with Bida two and a half years ago.

Searching for Normalcy

Sunday 18 July 2021

"Normal" is a fluid idea in our home these days with Papa's condition, but with two kids in the house, we also have to try to keep the old "normal" part of our new normal.

Yesterday, for example, I took the Boy swimming in the afternoon (the Girl was not interested in going just to float around with a bum ankle if she didn't have a friend with her, and it was too late to arrange all that), and afterward we went out for our favorite Boys'-Night-Out meal: Mexican. A taco and enchilada with beans and rice, all covered with sauces and queso?! Who wouldn't love that?

"The only problem with going out for Mexican," the Boy explained, "is that it's so easy to stuff yourself." That's certainly true.

In the afternoon today, I spent a lot of time with the dog, kicking the ball for her to retrieve. Again and again and again.

She came back in a slobbering, exhausted mess.

Moments

Saturday 17 July 2021

Papa's existence when the meds that keep him calm and sedated changes from moment to moment: There are lucid moments when he is just like the Papa we all know and love, there are moments enveloped in hallucinations, and there are moments that seem to fall somewhere in between.

This is a lucid moment.

He occasionally smiles while hallucinating, and it's such a mischievous little smile that I want to catch a photo of it. Tonight, he smiled that smile, a little kid's smile when he's gotten away with something and yet is still just nervous enough to realize that he might not have in fact gotten away with it. An "I know you know I did it, but please don't tell on me" smile. I didn't have a camera ready, though, so I went downstairs and got our good Nikon. I was telling Papa about that smile and how much I wanted to get a picture of that smile, so he smiled for me. It's not the smile I'd initially wanted, but it was a smile of intent, a smile of purpose, a smile to fulfill a request. A smile that said, "I know I'm having a lot of problems following instructions when you ask me to open my mouth or to roll over. Right now, though, I can do exactly what you asked me to even if I'm not sure why you want me to. I trust you and will do it because I trust you."

Those lucid moments are rare, and they are increasingly rare with each passing day. The hospice nurses all say that they have never seen anyone with Parkinson's progress this quickly. Every day is literally a new normal. Yesterday it became clear that he could no longer eat solid food because he didn't chew it. He kept it in his mouth sometimes, partially chewed it others, and every now and then chewed and swallowed, each motion of his jaw a supreme effort. Today we gave him only pureed food, and in the morning he did a good job with it, but in the evening, it was difficult to get him to open his mouth to eat. He no longer can draw liquid through a straw, and when he does get liquid in his mouth, he almost chokes on it, so we bought thickener and we spoon-feed him his thickened water to keep him hydrated. Today we also stopped giving him pills to swallow: they're all ground up own, sprinkled on spoons of yogurt. What tomorrow will bring is a complete mystery.

This is a hallucination.

He pulls threads out of thin air. He talks to people who over his bed, who sneak behind his bed and hide, who stand on either side of his bed. Strangers come to visit him as well as friends. Nana comes often. "Hey, babe! Don't you think it's about time we get out of here?"

This is the picture I hesitate to put on here, but this is the reality he's suffering now. This is the reality that leaves us shaking our heads wondering how much one poor man has to suffer. This is the reality that creates new habits: I walked out of the room today just as he started saying something. I paused for a moment, then realized he was talking to a hallucination. I didn't respond. I just continued out.

These are the moments when he seems most vulnerable, too. The hallucinations don't frighten him: he once said he saw a hangman standing by his bed with a noose, but other than that, the people who come to visit him seem relatively harmless. He's restless, though: he's always been a mannerly man, a gentleman, a problem solver, so he wants to respond to all the things he sees around him, deal with all the issues around him (the threads that hang endlessly over his bed, for instance). In the past (i.e., earlier this week), when he started talking to these hallucinations or pulling at the threads, we did as the nurses advised: we played along and asked the person he was talking to to leave or took that threads ourselves. "Don't worry," we'd then reassure him. "We asked him to leave. Did you hear? Did you see him leave? He just walked out the door." Now, he doesn't engage with us when we say those things. That change has come in the last 36 hours.

This is a mystery.

Not hallucinating, not engaging with us -- just there. Remembering? We don't know. This might disappear tomorrow because it only appeared a few days ago. The way things change, "normal" is a fluid concept that can change within one day.

This is the only thing that seems to help these days.

This is what I feel guilty about neglecting with Nana: I didn't realize how little time we had left with her once she came back from rehab. I didn't realize how quickly she could go. I didn't take the time simply to sit with her and to talk to her as much as I could have or should have. And now, so much that we say to Papa just goes unacknowledged. Perhaps because he didn't hear. Perhaps because he didn't understand. Perhaps because he was busy talking to someone else. But there's one thing he understands.

Polish Lots

Friday 16 July 2021

A gigantic home on a long, narrow lot…

“Only in Poland” my friend and I would laugh.

Night

Friday 16 July 2021

Night can be the most trying time with a Parkinson’s patient since the disease can throw all kinds of obstacles in the way of a simple night’s sleep. Of course, there are the hallucinations that plague one night and day without proper medication, and as the disease progresses, the dosage of that medicine needs to be constantly adjusted. With Papa and his lightning-fast deterioration, what was an adequate dose three or even two days ago no longer has the desired effect. So Papa can spend a lot of the night talking to his hallucinatory friends, reaching for hallucinated objects, and puzzling over imagined problems. It’s hard to go to sleep like that.

Parkinson’s also affects sleep: one of the 10 early symptoms of Parkinson’s is trouble sleeping.

And so some nights at eleven, when everyone should be in bed, Papa has been lying in bed for three hours yet he’s still talking to people who are not there, reaching for things not there, looking around the room at sights only in his mind, and in worst-case scenarios, trying to get out of bed — something that would be disastrous.

The frustration we all feel about this is ineffable.

Consolation

Thursday 15 July 2021

When Papa was in his late thirties or early forties (I can’t really remember), we had a family membership at the local YMCA, and he liked to play basketball. He didn’t like playing with men his age — too slow. He played with the twenty- and twenty-one-year-olds. It was hard and aggressive, and while I can’t really remember how good Papa was at basketball, I do remember how tenacious he was, how he never gave up.

One time he was breaking for the basket, forcing his way through a couple of defenders, when he leaped, shot, landed on his ankle at an angle, and fell in agony with a snap that everyone heard.

As Papa lay there on the floor, rolling about in agony, one of the other players leaned into the group huddled about him and said, “If it’s any consolation to you, sir, you made the basket.”

Tonight, L made a block that won the point but resulted in an ankle injury. A young lady on her team told her, “But L, you won the point.”