Sister L says it all

Picture by Sister L

Check out Sister L's recent post at Habits of an Artist.

It's the little things

The feet that won't stay put

Yet another Sunday morning with Mom. I figured that today she's been here almost three and a half years. Not forever, I guess, but sometimes it feels that way.

For most of that time, I and the aides have been fighting a battle to keep her feet on the platforms of her wheelchair. Today I stopped to put them on at least three times, and every time, within a few steps, she was dragging them on the floor again, making it hard to push. Sometimes she even pushes back, wanting to go a different direction, but never sure where.

After church we went to the Bistro, got some cookies, and I even ordered a scrambler, and she leans over just as we're settling in, "I have to go to the bathroom really bad." I left the table set and buzzed her back upstairs. She'd already done it in her pants by the time we'd reached the toilet, and I called in reinforcements.

We returned to the Bistro, finished our snacks, and I brought her back upstairs. She was, I think, just as glad to see me go as I was to leave.

The balm of the harbor

We are all in need

Dad's burial
May 2013

Found Mom asleep in her room last night at 7 p.m. Singalong had ended early and, downstairs, an ensemble of the Milwaukee Symphony was playing in the chapel. When she was healthy, she might have gone to that. Now -- just like my dad, when he was deep into Alzheimer's -- she finds her truest self, her most complete self, when she's asleep.

She looks haggard some days, and other days pretty good. Her food has improved -- they no longer puree the main dish, just chop it into small pieces -- and so has her eating. But she is tiny now compared to her middle-aged self. She was always worried about her weight, but she was never huge, and it's ridiculous in hindsight.

I had my third "counseling" session yesterday. These are conducted by a young woman, T. I asked her how old she was yesterday, and she said 31. She might as well have said 13. She has some book learning, and has done a lot of these sessions with all kinds of people, so, while she's a little bit "young" in her analysis, she's useful when I ask her if what I'm feeling is normal. Mostly, she just lets me talk.

Yesterday I went on about how I felt about my mom at different times. Her narrow morality, the humility she stressed and imposed on us -- and, on the flip side, her welcoming of all kinds into our home, and her relative lack of judgment of almost any individual person she got to know. She was selfish, I think, when we would visit with young kids and would have to leave a couple hours early because, say, a snowstorm was predicted -- she would pout and it would ruin for her the whole three-day visit. She lacked, in that way, empathy or imagination -- just could not see our real concern, the fear that we and our kids might actually, for example, die.

She's so feeble now, so completely dependent, so very different. The thing that continues to bring me up is that she thanks me for coming. Did I ever thank her for picking me up at school? I don't think so.

Big sky in Dodge County

Car couture

Loose ends

Charles' cousin Braden

After our West Coast Sojourn we went to a graduation at Oberlin, last weekend, and I saw Mom last night for only the second time in about two weeks. She was sleeping when I got there, and I sat in the room till she woke. She was confused and a little groggy and, to get her going, I showed her pictures from our trip.  When I took her to dinner, she sat staring, a terribly sad expression on her face, as if she wondered how it all had come to this. I thought she might cry, and there was nothing, really, to be said.

I lost my job a couple weeks ago -- one of many layoffs Gannett, in its infinite wisdom, has made -- and I am a little at loose ends. I am going to an interview later today, and I'm not even sure what the job is. Just a part-time job would work -- a library or a coffee shop, somewhere I can bike to, a place to go when I have to get out of the house.

I really don't have enough bad things to say about Gannett. Our local daily looks like USA Today, and it's an embarrassment. The company is run not to inform the public but to save money. It should be running a bank.

Kaia and Madeline, the graduate

Jon, Julie, Kari, Siri, Kaia, Madeline, Lydie, Charles, Rae and Robert

Pounding the skins

Julie and two sisters at Charles' Chinese Banquet

K and M

West Coast Sojourn

Tying down the kayak

We got away last week and spent 10 days on the West Coast. Had some fun. This is a pictorial log.

THE MUSEUM OF FLIGHT 

Boeing's West Campus

with Jimmy

Seattle

SpaceShuttle Trainer

The Great Gallery

M-21 Blackbird
One of the world's fastest aircraft
and the last of its kind

Not sure what this one is!

A MORNING WITH THE KAYAK GURU 

Seattle

Peter Kaupat, the kayak-maker, in his shop.
"Or, anyway, you just paddle anyway you can."

The shop

Old-style

ON THE WATER 

Lake Washington

Jimmy and Mimi
Gene Coulon Park
Lake Washington

JV, Jimmy

A little light exercise

OLYMPIA, HOME OF THE GODS

Mount Rainier, from Mark and Jan's backyard.
"One of the most dangerous volcanoes in the world," says Wikipedia.

Molly and Dexter

Down to the Sound

Lake view

PORTLANDIA

Flo and Steve

Ubiquitous yard sign

At Salvador Molly's

Salvador Molly herself

A kitchen that works at Flo and Steve's

Flo, JV, Steve

MEDFORD

Jack and Emily

Dinner!

Emily at 2 Hawk Winery

The vineyard

Yet more wine

ON THE ROAD

Mount Shasta

The Golden Gate

PALO ALTO

Ezra

Ez and JV

Rodin at Stanford
Student life

("The Burghers of Calais" rearranged?)

In the "Oval"

LOS ANGELES

Ingo, et al

Ingo at CalArts' graduation

Chris

"How Jon organizes his clothes," a commentary by JV

Tina at work. 

(Those look like -- could they be? -- my feet?)

Celebratory pedicures all around

With Amy (dark hair) at her house

With Lydie

THE END

Guest post from Sister L

Got to my regular church today

Yesterday, when I arrived, Mom was (surprisingly!) at the Natural History Museum, a four-hour outing. The group traveled in a van equipped for wheelchairs. She enjoyed the butterflies, said volunteer Rebecca, giving me an update.

Mom then managed to stay awake through dinner, during the after-dinner sing-a-long, and for the first half of a concert in the chapel.

Then anxiety set in. 

“We need to go next,” she said, trying to stand up from her chair, as the audience clapped for a very talented 17-year-old cellist. By now it was 7:15 PM after, granted, a long day.

“No Mom, we’re here to listen, not participate.”

But I knew what she was thinking.

“I’m scared. I haven’t practiced,” she said.

Sure enough, she was a pianist again, waiting her turn to play at a recital, or thought she should accompany the young musicians, perhaps, like she used to? 

Whatever she was thinking, the situation made her anxious. I wondered if she was about to re-enact the panic attack she experienced before a piano recital that sent her home from college.

We escaped between the violinist and the string trio played by the homeschooled siblings. As I rolled her back upstairs, she tried to grip the railings that run along the hallway to pull her wheelchair back to the chapel. 

“Come on,” she said. “At least we should say something to them!” She was strong and determined!

I quickly settled her in bed.

This morning (Saturday morningI found her in the “penalty box,” calmly leafing through a newspaper like old days at the kitchen table if you squinted. I was pleased to see she could point to, and read, a headline or two, as well as individual words in big font, and even respond to the meaning of certain words and phrases. 

“Shall we swim?” I said.

“We might as well do something.”

Swimming takes no time at all compared to the chore of getting our swimsuits on. I decided to skip our so-called laps and go straight to the hot tub. In the hot water, her grimacing Parkinson’s lines softened. I rubbed her feet until her face fully relaxed, and her eyes closed, like a kid tucked into a warm, rocking subway car.

Then the long locker room routine in reverse.

I parked her at the table just in time for lunch and dashed off for an hour of time alone.