The only thing that works

Tilted like the rest of us.
Downtown Milwaukee

Went to see Mom yesterday, a job, lately, I never look forward to. I found her in the penalty box, staring straight head. I touched her shoulder and she whirled around, her eyes wild with boredom and said, "I gotta get outta here." I said, "You mean, this corner?" hoping she didn't mean the building. She said, "Let's go to my room."

So we went to her room, and I cast about for things to say, like I always do. I suggested devotions, which she likes, and I read her several, including a reflection on Zacchaeus the tax collector. We talked about it a little bit, getting straight who Zacchaeus was, and then I asked her if she remembered all the people she used to have to dinner.

We listed them off: Mr. Cook, Kenny, Greta, Ole -- these were the standards, some combination of them there every night, besides us four kids, often one with a friend -- and then there was a list of irregulars, brief visitors and long-stayers: George M, who bicycled everywhere he went; Paul the deaf boy who stayed with us and locked me out of the house; the wife of the Vietnam soldier who wrote her husband every day and did a lot of ironing; the pregnant girl Lois; two pilots from South Vietnam, Reza from Iran; a man who answered the phone one day when I called home from college and said he was "Jonathan from Namibia"; Bruno from Brazil (the best of our long-stayers); and even a guy I picked up hitchhiking one day. And I know there were others.

And then there were friends of her children, who didn't always stay for dinner, but would stay and talk to Mom in the afternoon even if the kid they wanted to see wasn't home. Bruce is the shining example, but there were others. She'd put them to work folding clothes or setting the table and chat with them, get the goods, the straight dope, and, I don't know, but maybe even counsel them in a kind of invisible way.

People were her priority, the thing she did, and this is in contrast to my own visits to friends' houses, when, if I encountered the parents, they were like furniture -- a brief hello and they were off.

She was, I think, socially fearless. We might be having friends to dinner -- say, relatives from Minnesota, or maybe the N family of six? eight? -- and some motley assemblage of the others would show up unannounced and uninvited -- a combination of people and interests that just should not work. It always filled me with fear, like the world was about to blow up, but she would just say how wonderful it was that they had come, pull out the card table chairs, set more plates, come up with some leftovers, and everybody would eat and talk and have a good time.

Talking with her about this yesterday, she was amazed at all the names, and that she had done these things. She was completely absorbed, her eyes bright, her questions pretty much on point, and I felt like I should do this every night. Just to save her more time of endless waiting. 

I did go back today. She slept in church, hardly touched the food I got her in the Bistro, but, in the half-hour in her room before lunch, I read her poetry and we almost got there.

Guest post from Sister K

Halloween bowling

Here's a guest post from Sister K:

Hi All-
Having a nice time here in sunny Milwaukee. Got in the pool twice and mom gets very chatty while doing laps. She is trying to figure out why no one told her dad died, why Jon is her father, and why her friend E was singing in a choir concert the other day and didn't say hi to her. (E called yesterday and they sorted it out.) It must be a kind of agony to have these seeming truths in her head and not be able to understand them. Generally, she seems pretty ok, though. She often seems to think she's busy doing important things, like volunteer work, and I think that kind of confusion is a sort of blessing. 

Jessie's been doing a lot of activities this weekend, and I left Mom at spooky story hour last night and met J&J for dinner. Saw their beautiful apt - so nice!

She's snoring away now so we'll see if we make it to church or not. I leave early tmoro morning.

Disease

Prospect Avenue

Saw Mom a couple times in recent days. She seems fearful and unhappy. She brings up Dad now and then. This week she said, "Say, Jon. I want to ask you about something. I think more often than I did that our daddy has died."

I said, he did, in Ann Arbor.

"I have no memory of that at all." She said she wanted to go to a doctor that was "really good" to fix her memory.

This was Thursday. I took her downstairs to a volunteer appreciation reception. There was a big crowd. I got her a glass of wine, and crushed up a little sweet pastry so she could eat it. Then I steered us back toward the elevator, but she said she wanted to go back to see the people. So we moseyed back through the thick of the crowd, and a dozen people greeted her, like the reception was for her. I heard one man say to a friend, "She used to be so ... " but I didn't hear the rest.

Her therapist said she'd done what she could about Mom's swallowing problem, and she was requiring that her meat dishes be pureed. I saw her pureed turkey -- a white paste that looked like baby food. The therapist said she hated to do it, because a lot of people won't eat it.

I thought: This is my fate, too.

About five years ago I was diagnosed with myotonic dystrophy -- muscular dystrophy that affects the extremities. So my ankles have weakened -- unless I'm careful, I wobble when I walk; I can't open a pop bottle with my fingers; and swallowing can be an unpleasant adventure. I've lost weight, and while I like to think it's exercise and diet, it's one of the things the doctors track.

The reception

Me and JV both

Still dreaming

Been there, done that

Still dreaming of my bike trip.

But it was Mom yesterday and today.

She had a lot of attention when Son E and Sister S were in town. Was delighted with the boy: "He's so nice!" And he is.

Yesterday she seemed lovely and energetic compared to some of her bedraggled companions. The caregivers often put a little tasteful makeup on her and choose earrings that match her outfit -- a nice touch. We went downstairs and got her mail from the front desk and sat in the Bistro and went over it over coffee. It's all pretty much bills and junk, but she likes to hear my general explanations before concurring with me that we can throw most of it out.

I was startled yesterday, though, when she suddenly said, "Jon. It's just coming to me that your dad died."

"Yeah, Mom. He died four years ago."

She looked at me with big eyes. "I don't remember anything about it. I wasn't there."

"You were there, Mom. All the time."

She thought a bit. "I wonder if I was in Norway with the St. Olaf Choir when Dad died."

"No, you were there. In Ann Arbor. Do you remember him in the bedroom?"

"I was there?"

"You were there."

*

Today, church. We had a substitute preacher, a distinguished man with a rich beard wearing a huge kimono-like robe. He explicated a confounding parable and I liked it.

Mom can't quite follow a hymn lately, unless it's an old familiar one. She gets the Lord's Prayer pretty well.  We did communion, and then, at the end of the service, she shook the pastor's hand and said "Happy Easter."

Manitowoc

Days away

Kohler-Andrae State Park, Sheboygan 

We were up in Door County last week, and Friday to Sunday I biked home, 190 miles in three days. It was tough, much of it, as I am in no kind of shape. But fun. Sister L was here on the weekend, and I went over to St. John’s on Labor Day for the outdoor picnic with Son E, and Wednesday for Move and Groove. Mom seems more expressionless than ever, and it’s hard to tell what she’s taking in. At the picnic, she said, “I just feel lost,” and at Move and Groove, when it was taking a while to get everybody corralled, she said, “Let’s get going” and hitched forward and tried to start it herself. E has been making  daily visits — even Thursday’s singalong, the whole of it — which is a big help.

I’ve been sick and bedridden for two days, sleeping most of the time. Sore throat, plugged face. I’m staying away from SJ today so I don’t kill anybody. Julie will bring some flowers from the farmer’s market this afternoon. Tomorrow I’ll see about church. Julie’s mom and cousin Paulie are coming for church and brunch, and I’ll just wait and see about that, too.  

I think this month I will be moving to half-time at work. There’s a lot of change and upheaval there — people leaving, new software, new paper configurations, designers in Des Moines — and the extent to which it was fun is much diminished. But, in any case, this is something I’ve been hoping for and it will get me back to doing more of what I like to do.

Still life with food bag and helmet

Nylon coffin

Good and bad

We are in Door County -- third day here. A year ago when we were here, I got a call that Mom had fallen, and I contemplated driving down to sit with her in the ER. I didn't go, thank goodness. Those days, I hope, are behind me.

She seems improved. She has more energy than she has had, and will choose to stay up and commune with her friends in the penalty box after church, when before she would have sought the refuge of bed. She chats, tries to engage people, often not making much sense. But the tone is right. What's sad is the state of her friends. A couple of them have sunk to non-verbal states and sit with pasted-on smiles.

We celebrated her birthday Aug. 20 -- on the actual day. Mom has always been a big one for her birthday -- keeping track, making sure it's not just noted, but celebrated. So I brought flowers, chocolate cake, an outfit Julie had picked out, and dark-chocolate-covered almonds. It was enough. She got flowers and calls from a lot of the people she knows.

Her eating has become a problem. She puts food in her mouth, chews, but doesn't swallow. I urge her to drink water, but it's really hard to help. I asked her doctor a few months ago, "What does it mean to say someone dies of Parkinson's?" He said, "They can't eat."

Mom and the one-mile trip

Well, I'm loath to show Mom online. So here is me, with a corner of Mom. She'd been begging me for weeks to see the new condo, and I kept delaying, hoping she'd forget. Mom doesn't travel well -- though this was only a mile -- and I am, well, just plain not good at taking her out.

But today, after chapel, she seemed pretty chipper, and I loaded a backpack with extra diapers and cleaning materials, wrestled her out of the wheelchair and into the car, drove the mile, wrestled her out of the car and into the wheelchair, working up a hearty flop sweat. Down in the garage, she said, "I've never been here before."

We spent about 10 minutes in the condo, and there were no accidents. I showed her all the views, the kitchen, the dining room, the living room, the study, the bedrooms, and all the wonderful closets. She said, "It's nice. It's beautiful." And I have to admit that, for a moment, I made a little involuntary transition from doing a favor for my mom to being really happy, really satisfied that she had seen it -- for my ownself. Your mom should know where you live.

*

That was a good moment. In other ways, at other times, her place, and this job, are really getting to me. It's not that I resent the time it costs me -- though of course I do -- it's the way it brings me down. I took Mom to "Move and Groove" Wednesday, and there were, I think, seven residents there -- seven residents and seven kinds of misery. Joy was sobbing uncontrollably, John was agitated and wondered if he should be there, Joanne was staring unhappily at the floor, and B -- good old B -- has lost so much in recent weeks that she's only barely present. I thought I'd scream. Instead I left early, feeling bad that I'd abandoned Lauren, the leader, alone in room full of hurt.

The Island Revisited
Homage to Jimmy