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.

"Hi Jon!"

Singalong

Had a good visit with Mom last night. She actually sang the songs in Singalong, and had no trouble finding the right pages or going back to the chorus after the verse. She looked good, too -- her color healthy, her expression not contorted like it sometimes is.

That blue thing around her shoulders in the picture is actually a weight, filled with sand or something. It's got a little heft to it, and it's a reminder to stay in her seat. They have a lot of trouble with her trying to stand and walk, which inevitably ends in a fall. I'd like to think this is her spirited nature -- you can't keep a good woman down! -- but in actual fact I think it's just forgetfulness.

Sometimes when I arrive during Singalong, she gives me a curt glance, as if irritated by my greeting -- an unwelcome distraction. Sometimes she says, "Oh, Jon," like I've been gone for years. When I arrive, Mary, the Singalong leader, always says, "Look! Jon's here! Look Mary, Jon's here! Hi Jon!" And everybody says hi.

I would prefer a less heralded entry.

Sometimes Mom is happy, and I wonder about this just as much as I wonder about her less happy days. It's not all related to her health or loneliness or the place she lives. It's a separate factor inside her that sometimes connects to those things, but sometimes moves independently. Visiting on a happy day pays you back. On the less happy days, well, it's more like a job.

All messed up

Biking buddy

To church today. Mom looked ashen and exhausted from the moment I got there, like she hadn't slept all night. She sat slumped sideways in her chair during the service, and I finally took her out after 45 minutes. We got a brownie and went upstairs, and she ate hungrily. I held my face an inch from hers and she whispered, "I love you." These face-to-faces are the best connections we have lately.

I coaxed her into bed and she fell asleep almost immediately and I left.

At the church service, a passage in the liturgy said, "His are the times and ages. To him be glory and dominion through all ages of eternity," and I felt like everything was all messed up.

Signs of decline

Under the Brise Soleil
On the lakefront. 

She sits slumped in her chair, speaking softly sometimes, but never able to complete a thought. She can't say when she needs to go to the bathroom, so you guess, or smell, or constantly offer. In church today she roused herself only for a few bits of The Lord's Prayer. Our Sunday tradition of sweet-roll pieces soaked in coffee has declined to, most often, me giving her small forkfuls.

Up in her room today, after church, the Bistro visit and a messy bathroom session helped out by an aide, she sat in her chair in the middle of the room, gesturing, saying, "I want ... I want ... I want." I guessed again and again. Your warmer shirt? A drink of water? A kleenex? To go out? Should I read? It turned out to be the small colorful pillow she likes to keep on her lap.

I cling to moments that are better than bad. I made her laugh Thursday by rubbing noses with her and making a wild-eyed grimacing face. And this week, a nurse got her walking in the hallway, held by a strap around her back, with an aide pushing the wheelchair behind her in case she needed to sit.

It is unspeakably sad. I have trouble getting myself to go. JV went for me yesterday, and I took a long, therapeutic bike ride.

Our Sunday routine