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