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

 

Uneasy

Mom was disquietingly unresponsive today, sitting with her head down and to the side, saying almost nothing through church, in the Bistro, upstairs. I bought us coffee and a roll, and she had a sip of the coffee under my urging, but didn't touch the bits of roll I had cut up and soaked in coffee on her plate,  which normally she goes right at. Finally I fed her with my fork, and she ate it and seemed to like it, taking whatever I offered.

We went out to the penalty box, where aides and a few residents were gathered. Joe, over by the TV, was shouting "Hello! Hello! Hello!" which he does almost every time he's at large, and Bev, near us, was in a state, berating the staff and complaining "Why does nobody want to do any work? Doesn't anybody want to do any work?" When sweet old Vickie, sitting next to her, made a mild objection, Bev swatted her with her newspaper. Then Joe piped up, "Hello!" and Bev screamed, "Well hello yourself and who are you?"

An aide tried to take Bev down the hall but she wouldn't have it, so we all moved away.

I took Mom to the lunch table early and we sat there, just waiting, every moment like death. The one cogent thing she said to me all morning was "I want you to stay and have lunch with me," a reasonable enough request, but I'd been there two and a half hours and could not stand another minute.

Here's a story that spoke to me: https://www.theatlantic.com/magazine/archive/2010/04/letting-go-of-my-father/308001/

Keeping up appearances

This is just a little appreciation for the aides, who every day get her dressed, comb her hair, choose and put on earrings, a necklace, doing more than the minimum. She always looks nice -- even dressier, I think, than when she was middle-aged, schlepping kids and keeping the house running.

Church was uneventful, though we didn't stay long, and brought our roll and coffee up to the dining room near her room, where we could bail in a hurry if we had to.

Guilt and more guilt

I bought this bike last week at the Madison bike show during a two-day visit with Ms. V. It cost way too much, and I know that my good friend B will excoriate me for going to carbon fiber, but, as I say, I wanna keep up with my friends. On B's behalf, I have to acknowledge that it does feel a little worryingly like a toy. For the long camping trips, I still have my steel bike, still in fighting trim.

I had anguished about this for years. It's not just the cost, but the morality of it, the guilt that accompanies it. Do I need it? No. Am I happy with what I have? Yes. Am I a spoiled, entitled American with no perspective on what's really important? Yes. But do I want it? Yes. 

I found Mom last night slumping sideways in a gaggle of her colleagues in the penalty box. She was fresh from a hair-washing and was nicely dressed, but, in her face and eyes, she did not look good. I took her down the hall to her room, and we sat looking at pictures and videos on my iPad (guilt guilt guilt). We made a birthday call to young E -- he's 25 -- and she managed to put a few appropriate sentences together, which was encouraging. Then I brought her back to the corner, where Jessie was reading a story, and said I'd be back on Saturday.

Maybe because I'm there so often, mom's place has given my name to a University of Minnesota researcher who is testing a thing called the Residential Care Transition Module. It's for people like me who have a family member in a care setting. If I'm not in the "control" group, I'll get six counseling sessions with a "trained transition coach" over a four-month period, and at the end of it they will study the efficacy of their program. I said yes mainly because they promised me $25 at the end of it.

No, really, I could use a little counseling. I never thought I'd be here, and I'm up for anything.

Here's a full, rather technical explanation: https://clinicaltrials.gov/ct2/show/NCT02915939

The marina