Brother B

Ready to go

We stopped in at Mom's on our way out of town for a week up north. She was coming from the fitness room with D with a big grin on her face. D chatting chatting chatting. Another good morning.

We went down to the Bistro for coffee and came upon Brother B inching along in his wheelchair. It's funny how you see things, but don't see them. I finally asked, "Can I give you a push somewhere?" He mumbled "yes, yes," so I got behind and pushed. He pointed to the door to the first floor wing,  pressed the automatic door and we went in. Mom tagged along.

Brother B had been upstairs in my mom's unit but was one of those who had suddenly disappeared. He seemed much worse off than when I'd first met him, when we'd talked about the boats on the harbor, watching for the big ferry as it came and went. I had asked him about the monastery, what it was like there, and how he'd become a monk. He said he'd had a wife and kids, worked as a nurse, and then, somewhere in his 40s, had felt called to a monastic life. I had to wonder what his wife and kids felt about that, but some things you just don't ask.

His right hand was shaking uncontrollably, his watch or ring rattling like a drum roll against the metal arm of the chair. I tried to go slowly enough so Mom could keep up, and we went to the end of what had to be one of the longest hallways in the whole building, turned right, and went to the end of another hallway just as long. His room was the one at the end, about as far from the entry a resident could be.

He was still shaking and quite distraught, and gave me a piece of paper that said "Mother Hilary," with a phone number. So I called the number and gave him the phone. In his hand, it shook against his ear and jaw. He got an answering machine, and didn't know what to do. Finally he said into the phone, "I had a bad night last night. I'd like to talk to Mother Hilary...."  He paused, frustrated. "I had a bad night, that's all I can say." He hung up.

I said, "Do you want to move to the bed, or the chair?" His eyes were watering, he was almost crying. He said, "No, no thank you." Mom offered him a blanket or a pillow -- Mom, in need herself, offering to help -- but he declined, and thanked us, as if we should go. So we went.

*

After we left my mom's, Julie and I drove through the UP, stopping at the Dreamland restaurant in Gulliver for a great home-cooked meal, then on to St. Ignace where we stayed overnight. Across the bridge in the morning to FF, where we've been working and playing in about equal measure.

Cycle and recycle

The Ozaukee Interurban Trail

Hard to figure out the cycles of my mom. She was dressed up tonight, nice white blouse over a green top, a little makeup on, big silver earrings. She seemed stiff and frozen in her way, but her mind was pretty good.

I noticed that the table that had been covered with flowers and plants on Sunday, Mother's Day, now just held one arrangement. Through stops and starts, she said she'd brought the big hibiscus I'd given her out to the common lounge and set it on a side table so others could enjoy it, too, but somehow it had disappeared. She thought it had been stolen. She was quite upset. I talked to BTY, the worker, and she said they'd gone room to room, and it was nowhere, and that the administrator, JG, had even written a note about it. BTY just shrugged. "We don't know what happened."

I was kind of miffed about this. Not at the loss of the plant, but that someone would take it. Mom leaves her door unlocked around the clock -- half the time it's yawning open. She should close it -- I close it when I come -- but if there's a geriatric crime spree and she had to lock it and unlock it, it would add a quantum leap of complexity to her life: not being able to work the lock, a key she'd be losing, locking herself out by accident. A nightmare.

We went out to eat at Beans & Barley. She got a strawberry smoothie -- but didn't like it and only drank a little. (I had more!) She got tunafish on toast, and I got the fishcake sandwich. The order took about, oh, 15, maybe 20 minutes to arrive, and about halfway into that, she said, "Boy, they're really slow here," and made periodic followup complaints. Imagine a long car ride. I don't know if time passes more slowly for her, or what it is. Probably I'm boring company -- but this has happened even with the walking party of D, her erstwhile best friend.

But all in all, a civil outing.

I had dreaded coming because of the strange horrors at the end of Sunday's visit, and her followup calls. After "Where are you, where am I supposed to be," she'd called again, completely bereft, like she was drowning. The carpet, the table and chairs, the room, the very air unrecognizable.

She called later that same night. "It's better now," she said. "I was real, real quiet. I didn't talk to anybody the rest of the day." She said she did a puzzle with another person or two, but even then didn't talk -- as though not talking was a way of holding onto a reserve of sanity. "I think I can handle it," she said.

Then Monday, with a more confident voice, "I'm better now." She said she had talked to the nurse, and to a social worker, and went for a swim. She missed a pill, "and they were furious at me." Now the residents were involved in a game -- usually it's a sort of high-minded trivia -- with Brennan, the college kid who volunteers, who everybody loves.

But tonight, Wednesday night, all that confusion, just gone.

*

Julie and I head to Michigan for a week on Saturday. Sister L will come for a few days next week, and I'll have a week and a half without Mom. She'll have a tough weekend, I think, but I can't meet every need, every day, every minute.

Just how bad I am

The Oak Leaf Trail

I woke up this morning chafing at this Mom Enterprise. The irritation and time it costs me, the precious little payback, the way I'm not getting anything done remotely related to my "goals," such as they are. I am, obviously, selfish, and always have been. But I need to cut back. She could do without the Wednesday visits, I think. With her memory so spotty, when I show up on Wednesday she sometimes seems surprised to see me; to her a weekday is a weekday is a weekday. Saturday and Sunday, she knows, I think, as there's so little to do, unless I provide it -- which is to say, church.

We did that today, went to church. She was not in tip-top form. She mistook the elevator door for the women's room, and was generally scattered. She used to kind of dress up for church, but today she was in a T-shirt, a purple shirt over it, and one of her innumerable pairs of three-quarter length pants, which are really awful. I am not going to fuss about her clothes -- I'm not going to start dressing her -- but among the casual elegance of the church people, she looked a little bag-ladyish. We sat in the pew and sang and listened and I found her place in the program at every juncture, and then, when it's finally over, she spies the quarterback.

"I'm going to go talk to him," she said.

"Mom, don't bother him. You have nothing to say to each other."

But she pushed right by me and bulled her way over to present herself.

He is a serious man, imperious, with little sense of humor, and not much of what you'd call the milk of human kindness. He intimidates me, for god's sake. He once tried to call Julie at work, reached a colleague of Julie's, and threw a fit when she couldn't come directly to the phone. "Why, I am [Name] [Name]!"

But he greeted Mom kindly, asked how she was doing. She answered somehow, and at this point I arrived at her elbow. I steered the conversation to his recent trip to Cuba, on a church mission, and he was interested in talking about this -- the strange distribution of wealth, the crushing poverty -- "you wouldn't want to live there" -- and how it's different from other Caribbean islands, "although I've only been to a few."''

A few.

We talk for maybe 3 or 4 minutes, and I step back and try to steer Mom away, and she pulls her arm free, steps even closer to him and says, "What about your wife?"

He looks a little startled, says, "She went, too. In fact, I gotta find her now." He starts to move off, and finally I get Mom detached.

And then coffee hour. She is like flypaper, moving through the crowd, plucking at shoulders as they pass, introducing herself, saying, "This is my son Jon" and "I'm M___ O___" and asking their names. Every week I get a kind of acid flashback to Zion when I was a kid -- church was bad enough, but then there was her gabbing gabbing gabbing at the coffee hour, really completely insensitive to the fact that her four children were HUNGRY and CRABBY and had BEEN THERE TOO LONG.

Gad.

I'm sure I'll regret this outburst.

But I feel better now.

Julie and I are going away next week, and it's just about time.

Maybe, in the future, I'll take Mom to the service in the chapel at her place.

I did, by the way, bring her a Mother's Day plant and a card.

My wife, of course, bought the plant.

*

Later:

Mom called.

"Where are you?" she asked.

"I'm home."

"Where am I then?"

"You're in your room, aren't you?"

"Where am I supposed to be?" she said. "I feel kind of lost. I don't understand where I'm supposed to be."

My heart breaks.

Roof work

$8,000 plus.

I hope they're well paid

The hope here is that repairing the roof will allow us to repair cracks and flaking paint in the interior without them immediately reappearing. The larger view is that making this house more habitable will make it more pleasant to live here and we will want to stay (me), or make it marketable so we can move (Julie). How will this work out? You have one guess.

I saw Mom Wednesday and had coffee with her while she ate dinner. I didn't want to eat until later, when Julie and I were to meet our friends J and B for dinner at Bavaria -- but to Mom this seemed an affront and threw her into a funk. She is a food pusher in any case -- a "plate sharer," as my lovely daughter puts it -- and offering her food to others has become a kind of aggressive charity that is just plain bad manners. Wednesday, I hoped taking a bite of her veggie burger would suffice, but it did not, we went back and forth until she finally pushed the whole plate across the table at me, and pointed and wagged her finger over it, and then right at my mouth. I told her firmly I didn't want it and pushed the plate back toward her, and she said she didn't want it and pushed it halfway back. Finally, at a stalemate, we left the table and the nearly full plate of food behind us.

We spent a little time in her room, but the food incident had left a -- OK, I'll say it -- bad taste in our mouths. I didn't linger.

I went back this morning hoping for a better outcome. I got there before 8 -- before her breakfast -- and we went to Simple and had identical omelets -- cheese, onion and bacon -- and lots of coffee. She was great. Forgetful, as always, but actually could process conversation. She pointed delightedly at a furious little red-headed boy, maybe 3, who was just not going to be happy, and later we noted that he had crayons and was coloring intensely. We talked about our names -- JNO, how I'd changed the middle name from Steven -- and hers, MH_ _, the H after her aunt.

When we got back, we perused Facebook for family pictures, got an email from Sister S laying out Mom's summer schedule, and ceremoniously plotted the dates on Mom's calendar. I showed her pictures of the roof project, and of the fire department showing up at work the other day, after we complained of a burning smell (a heating unit that malfunctioned).

We wrote a couple checks.

And then she just froze.

I said, "Are you tired?"

She said she was.

"You know, I'm failing," she said.

I said she was doing OK, she'd had a great morning.

I said I'd be back tomorrow for church. Every day is mother's day, but tomorrow is Mother's Day, and I suppose I should get some flowers.

Fire scare

Comme ci comme ca

Wauwatosa, in its wisdom

Found Mom yesterday about 11:30. She'd just finished a swim session, after having worked out on the machines before that. She glowed; her mind was sharp; she said she felt so good. Morning is her time.

We had lunch with the group. C and I talked about "Wolf Hall," and she thanked me as Mom and I left like she hadn't talked in a month. Mom, though, faded rapidly, her exercise catching up with her. Her face expresses her state -- from a near-normal range of expression when she's on top of it to a frozen mask when she tires out, as if she can't even muster the energy to brighten her eyes. It is Parkinson's, of course. As if growing old and feeble without disease isn't cruel enough, the fates must have their fun by raining this horror upon you.

*

Took her to church today. An hour and a half, and she followed pretty well. Though she did ask, in the middle of the first hymn, if I saw the football player and his wife. (They were not in evidence.)  It was an ordination service, with a sermon by a guest preacher on how you can't escape God, especially when you're a pastor; everybody is super-polite to you and you'd like to just run. (I think, in my case, I'd be tempted to throttle somebody. Not sure how redemption would play in that situation.)

Then I took her to the room and we spent a good long time looking for her checkbook. I could see myself having to figure out what we'd paid and what not, and then cancel her checks and get a whole new set -- something I've done before and what a hassle. But, miracle of miracles, she found them in her underwear drawer, where I swear I had already looked. So, as a preventive measure, and, tacitly, to my way of thinking, as a punishment, I took them and said I'd keep them at home. Because, for sure, I won't lose them.

Insanity

Near Oostburg

I have no time.

I went to get her for church Sunday and found her leaving an elevator, having come from the gym. She'd forgotten, again, that church is at 10, not 11, as at her old church back home. She said she'd exercised a little, not much, and she looked wan.

"Do you want to go to church or skip today?" I said.

We went back and forth a little bit, feeling each other out.  I wanted her to make the decision, but I think she wanted me to make the decision, absolving her of the responsibility. Missing church is not a practical decision for her, it's a moral one -- but at last she gave in and said, "I'd just as soon skip today."

We walked slowly to her room, and I thought she looked almost sick, and I said, "Are you OK, do you feel well? Are you in pain?"

"I -- I just don't know how to live here," she said. And in the room, as if still working it out in her mind, she said, "It's OK, I can skip once in a while."

So I went alone. Somehow an hour of worship, God and the devil seemed simpler than an hour with my mother.

But I did come back, woke her from a dead sleep, and after a few minutes of confusion, she was better. We had lunch in the bistro. Mom got the personal-size pizza, loaded with pepperoni, mushrooms, onions, and lots of cheese, and exclaimed with every bite how good it was.

Then I brought her up to her room, said I had to go, and gave her a hug. "I love you," I said.

"I love you, too, and I'm so glad you're so good to me."

*

So I saw her again tonight, biking over after work. We sat between D and C at our beef stroganoff dinner, and I thought that, really, one of the saddest things that's happened to her here is the loss of D as her "best friend."

They used to do things like call me up to order frozen lefse for them from a website -- a plot they concocted like two schoolgirls to get me to come over. Or, another time, Mom, D, and C started comparing wedding rings, and the other two thought Mom's was the best -- the diamond in a deep divot, with sharp peaks guarding it -- and they had me take pictures of it and print them out, because they said they were going to order their own just like it.

But Mom has slipped, and as D and C have moved on to feverishly finding their ancestries online -- even paying to have their DNA analyzed -- Mom has been left out and feels acutely that D and C are now the best friends and she is alone.

We finished dinner before the others and went to her room for our rituals. We discussed her finances in a kind of circuitous manner, then made phone calls to line up a summer week away for her with her daughters. It's probably ill-advised -- she travels badly and I don't know that she can really be happy anywhere -- but I'll take a break if it's offered.

After the calls, she hit a wall of fatigue. She talked of D and C -- "is this where they live, too? How did they get these buildings to be so far away from each other and be so perfect?" She went on about the rooms, how could they be so much the same. "These buildings -- it seems like magic to me." It occurred to me that she'd never lived in an apartment before -- didn't really know what it was like.  She seemed for a few sentences to think she was in Michigan, at her summer home, and said, "Are you going to leave me now, leave me all alone for all these days?" Then she wondered if she could have the car keys, since I was going by bike, and how could she leave without the car. She jumped between topics, expressing thoughts she didn't really have language or logic for. And I thought, really, I might lose my own mind.

At last she went to the bathroom, leaving the water trickling in the sink, like a little girl -- the sound she wanted to make. When she was done, I tried to get her to lay down, but she was full of weird adrenaline. I told her a dozen times that I would be back on Saturday, which she kept thinking was tomorrow and I kept saying was the day after tomorrow.  And then, somehow, it was OK that I was leaving and she was staying, and I left quickly before that window closed.

Blah.

Mom's window? Same structure, anyway.

I missed my Wednesday visit, spending a night in Madison on the county dime, as Julie had a seminar there. But I saw Mom last night, and again tonight.

I don't think I've had a more useless visit than on Thursday. We ate with the group, and the braying of Mrs. AT -- her sailing prowess, her laaarrrge family -- was so macho and repetitive that you wanted to throw something at her. And then L had somehow thought it OK not to wear her hearing aid, and so was shouting, "WHAT? WHO? WHAT CANADIAN?" And to correct her, well, it was more work than it was worth.

It's bad to make fun of these people -- I'll likely die before I'm their age -- but sometimes maintaining your sanity is a cruel business.

Mom and I went to her room, and, really, it was like we couldn't think of anything to do. She pried into my doings of the night before, the trip to Madison, which I couldn't bring myself to tell her was an overnight, but made it sound like just dinner with friends.

But still: "What friends? How do you know them?"

A mutter sufficed for my reply. I think that she doesn't really care who or what, but remembers that this is how you talk. Anyway.

She was just as bored with me as I was with her, and even said I didn't have to come today, Friday, as I said I would. But I did.

And it was better. Her mind stays with her longer in the afternoon lately, and we can actually converse, calculate, figure, if our moods are right. We had dinner, and the mix at the table was better, and I talked with Ca -- her 78th birthday was yesterday -- and D, Mom's closest friend there, who was in an up-cycle, and John the former photographer, who told about a dinner of retired colleagues he'd been to the night before. Mom listened intently, refused dessert -- very unusual for her -- and we finally went back to her room.

We made a call to V, in Michigan, one of her buddies. Mom got a little mixed up on who she'd called, but still wrestled benefit from the conversation. Then we called P&L, in Minnesota. They are going to the big college reunion that Mom wants to go to, and I explored it a little bit with L.

Mom, from saying firmly a few days go that she wanted to go, said now she now she would like to go but didn't think she was up to it. It's a five-hour drive one way, two nights in a dorm -- two nights in a dorm with my mother -- and a five-hour drive home. She's impatient, mixed-up and anxiety-ridden when we drive 10 minutes to the drugstore, and five hours would about undo us. And I really don't think, in a crowded roomful of old friends, she would get much take-away. A day or two with one person or two -- that  would work much better.

Tomorrow I'll get to bike. Unless it's cold and raining, like it is right now.