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.

Upbeat

In the gallery

I stopped in and woke Mom from a nap about 1:15 yesterday. She had a little bout of displacement: "How did you find me? All these places are just the same. All the buildings -- how did you find the right building?" I had biked and brought with me a new set of sheets -- she had torn one set -- and M, a great aid, said they had to be washed, and she would take care of it.

Mom bought me lunch in the Bistro -- a gyros and cooked carrots -- and we picked at it together and chatted. She was sharp and with it after she got going, and we spent a couple hours in the Bistro and up in her room. I read her the latest emails on Maureen's death -- such a sad thing -- and went through her papers.

Then we sat and talked. She pointed to a painting signed by Ellen R___, with the date " --41."  She said Ellen was her grandmother, who started painting in her 60s. Then she kind of rambled through her family history -- Ellen and her husband Hagbart (is that right?), a dentist. They lived in Thief River Falls, Minnesota, and their six or seven kids, all but one of them girls. I have a memory of a picture of these little blond girls with their hair all done, and the caption "five little angel heads."

One of them, O, was her mother. She married Melford, a big guy from college, who went to the seminary, and they moved from a parish in Groton, South Dakota (where Mom was born), to Red Wing, Minnesota, to Albert Lea, Minnesota. It was in Red Wing, which they left when she was 9 or 10, where she met Blanche -- "Hi for Blanche! Hi for Blanche!"

It was great, and she was on top of it, till she tired. A good visit.

And then today, to church. She wasn't ready by the door, as usual, and not in her room, and I finally found her doing the elliptical machine in the fitness center at 9:50 a.m. Church starts at 10, and I said,  "How about we skip it today," but she wanted to go, so I made her change her pants, and we got there about 20 minutes late, for her, and half-hour late for me after I found a place to park.

Brunch in the Bistro with Ms. Julie, then a quick stop in the room, and home. Again, she was pretty sharp. Maybe we have this med thing figured out.

The Oak Leaf Trail.
Therapy.

Twisted up

In the newsroom, what we talk about when we talk about writing

I left about 4 p.m., stopped at a bike store and bought two new tires. I thought maybe I'd get a ride in tonight -- or at least have an uninterrupted evening putting the bike to rights. I had bought  Chipotle to eat and was looking forward to it. When the phone rang, I didn't answer. But about 7, it rang again. It was Mom, talking about Maureen. She was twisted up and wondered what to do. "What should I do? What should I do?" She couldn't remember how she'd learned of it, and I said, "Remember? It was last night. It came on an email from Practicing Our Faith." I knew she'd talked to E about it, one of her best friends, but she said she hadn't been able to talk to reach her, hadn't been able to talk to anybody.

She asked when I was coming over, and I said, noncommittally, maybe tomorrow. But I have a meeting tomorrow evening -- my writing group. Julie had said she might stop in tomorrow after work. Or I could go in the morning before work, I suppose.  Damn it's hard.

I asked about her day. She said she'd exercised in the morning with one of the young guys who help her. And she had looked into the pool, but didn't swim. She had forgotten to go to the concert last night that everybody else had gone to -- D had raved. But, at 7 p.m., it had been too late for her anyway.

She's now getting her medication through a patch she wears, she said, but she didn't feel it was any different. But I thought, for an evening call, she made more sense, remembered more things than she normally does at that hour.

I said, "Remember, it's always more confusing at night, Mom. You'll be better in the morning."

I said, "Maybe I'll come tomorrow, but Saturday at least." She didn't  know when Saturday was, but it sounded OK to her. I think she just needed to talk.

A summit of the kids

Sister K, Sister L, Brother J, Sister S

It's been almost a week and I apologize. The sisters started arriving last Thursday and by Friday night the four of us kids all gathered at the greasy spoon, open 24 hours, where we hashed out more or less were we stood -- where Mom stood -- and discussed matters related to her far and wide. Sister S had arrived the day before and, guided by "The Conversation" -- you can find it online -- asked her what she wanted, what her goals were. 

Sister S: 

I asked her to think about priorities in her life; what she would really like to do before she becomes "too sick". She said she would like to be surrounded by family. 

Me again. That phrase, "she would like to be surrounded by family," may be innocuous enough, but it makes me shudder. That's all she can think of -- all she has thought of her entire life -- and it is suffocating. 

But she was happy all weekend -- her three girls in her face, and me making guest appearances. She got her meds back on Friday, and that perked her up, and then sheer family adrenaline powered her through, making her more energetic and more determined to engage than she has been in a while. By sheer force of will, she stayed up till about 9 Saturday night listening to us talk, talking a little herself, and worked hard to stay with it on Sunday afternoon when she had a friend from out of town -- talk, dinner out, more talk -- before Sister K spent an hour putting her to bed. 

The sisters left one by one, and I can't but think that after K left, Monday morning, she started to sink. 

Tonight, at dinner, she was pale, her face rumpled, and her eyes looked dead. She really can't keep up with the conversation at dinner, so I pull myself away from it every so often and translate for her in her ear, or make some observation.

We did our rituals, and found an email that said her friend, Maureen, had died just this morning. She had had cancer. Mom was frantic to know more, so we called her friend Sj, and she hadn't heard about it, and seemed, herself, surprised. Sj promised to call her back tomorrow. 

*

When the sisters come, they do so much with her. They took her on a walk, had lunch at a coffee shop, ate out -- so many things that it makes me feel like I'm just going through the motions. I have to tell myself: I'm here all the time. It's not special. It's day-to-day. If I were to put in the energy all the time that they bring to a three-day visit, I think my mom and I would drive each other mad. That, or I would just collapse. 

Signs of decline

The Bike Expo

I spent the evening at the Bike Expo at State Fair Park. One of my favorite events. Spent a mere $80 on gizmos and doodads, and nice new biking shirt. Someday I'll model it for you.

Been a tough week -- momwise and otherwise. Work ate me alive, and there are lots of little errors in my papers. And I got into it with a photo editor who said my photo requests didn't fit into the schedule, meaning, essentially, my two papers next week would be gray ladies. I said what I said, and he said what he said, and it escalated somewhat, and today we had a peace powwow with the managerial women, and hopefully it's at least temporarily behind us. Nothing like a little seething, unexpressed rage to exhaust you. 

Mom, though. Mom, Mom, Mom. She called me Tuesday to say she was being kicked out of Cranberry because she wasn't good enough any more. She knew this because when she passes people in the hall, or goes past their rooms, they all ask, "How are you?" 

I thought she might actually have been asked to move to a higher-care section. So I called the nurse, and she said no, no discussion of that had taken place. I said, how do you decide? "Well, she walks, she can go to the bathroom by herself, she doesn't need help getting dressed, except for her bras, and she doesn't need help eating."

I asked the nurse if she had a longterm prognosis for my mom -- like how long it might be until she was moved. She said it was too hard to say.

She said Mom had been to the Parkinson's doc, and he was taking her off her Parkinson's meds for a couple days, and then would restore them, but have her take them at different times of the day. So maybe part of this recent decline is the drugs, or lack of drugs?

I went there last night and we ate with the group. We discussed the Tuesday election, the Supreme Court seat filled by the liberal incumbent. Mom seemed to listen, talked quietly with A, on her right, mostly about the food, a circular discussion that had them assenting to comments they hadn't heard, and saying things in response that weren't heard. The workers were all new, and the food delivery was slow, and it was at least a half an hour till A, sweet old A, got an acceptable grilled-cheese sandwich, having rejected one that was burned, and insisting this time on white bread, which had to be retrieved from some distant place. 

We went to Mom's room, did some of the rituals, but she was agitated, and wouldn't sit, and couldn't focus. She showed me old mail she's showed me many times before. 

She fussed about a haircut she'd scheduled twice and forgotten both times. We found a note that they were going to try again tomorrow (that is, today), at 9:30, and I went out and told the workers and asked them to make sure she got there. Mom said, "It's so disappointing when you disappoint yourself like that."

"We all forget things, Mom."

"But it's starting to happen constantly."

I tried to get her to lay down, and finally I just laid down on the bed, and she sat on the other side. Shortly, the phone rang, and it was her old friend, M, from home. Mom perked up, said she was doing OK, and held up her end of the conversation just like she would have two years ago. Her social skills are still there somewhere, when she's motivated, at least for a five-minute call. M talked about her recent travels with her husband -- to Norway -- and it seemed deeply unfair that some can travel and run and learn and go on and on and on at my mother's age, while her time is ending. 

The whole visit brought me down, and finally I had to leave. We hugged and she thanked me for coming. She said as I left, "I'm so glad you're my brother."

Sister S is here for the weekend, with Sister K and Sister L coming tomorrow. Thank god. 

S texted me tonight: "Mom is very quiet, confused, weak, fragile. Very sad."

The Bike Expo. What could be more soothing?

A mood swing

Eight-feet tall, on River Road

She was good today. Bright and unafraid. We did Easter church -- "Big Church," as she said -- and she followed well. Put her on the right page and she knows from a long life of church-going what the heck is going on. She complained about the length of the sermon -- she was right to -- and at the end she didn't want to brave the huge coffee hour. "I want to go home," she said.

They had quiche in the Bistro -- it needed ketchup -- and cut-up asparagus topped with shredded mozzarella cheese. Mom told one of the cooks it was awful, and tried to give it to me. "I got my own," I said.

She said, musingly, "It'd be nice if you and I could get organized and take a swim class together."

I said, without saying so, it wouldn't really be that nice.

We shared a piece of French silk pie for dessert -- lots of chocolate, topped with cream, with more chocolate drizzled over the top. Mom dug in. "That's like too many sermons," she said. Too much of a good thing.

Where will I go?

River Road

Sunday morning. We'll go to Easter Church later, just me and Mom. Julie and Niece S left for Appleton a few minutes ago. Julie's mom actually said on the phone she was looking forward to Easter with them -- a startling  admission after having insisted that Julie not come. She sits alone all day reading books, eating fruit and having Rice Krispies for dinner, so I've heard.

We took Mom to Simple for brunch yesterday, after searching for her for half an hour. She had forgotten we were coming, I guess, and one of the young pleasant interns, E, had taken her down to the activity room for a painting session. She painted a church that looked vaguely like her parents' old log cabin.

She ordered a half sandwich and hardly touched it. She talked gamely, but the place was loud and her voice soft, so we had lean close to hear. She was glad to have S and Julie there, as she and I are so often just doing things ourselves. She even laughed at how ridiculous it is. But she fretted when we were finishing up. I asked her if she was OK.

"Where do I sleep tonight?" she asked. "Do I go home with you?"

I said she would sleep at her place.

"Where will I be tomorrow?"

"We'll go to church. It's Easter."

"Then where will I go?" She meant, again, where will she go to sleep, to live, I think.

"We'll go to brunch, like we usually do. Then I'll go home, and you'll stay at your place."

She sat staring. "It's this disease. I get so confused."

When we got back, Julie and S dropped us off, and I went up to her room. It was unchanged, despite her confusion when she'd called the night before. We did our rituals. She went to the bathroom twice in about 20 minutes. She said she'd been up in the night every two hours to go the bathroom.

I gave her a hug. She said several times, "I really feel lost. I really feel lost." She seemed desperate, near tears, in deep emotional pain. I lingered a bit, till she was ready to lay down. I said I'd be back at 9 in the morning for church.

I'd biked there, and I rode 60 miles, up to Cedarburg and back. It was cathartic. Her desire to go to the 60th reunion ate at me. She'd gotten a card from a friend who said she'd seen Mom's childhood friend, Blanche. In small town Minnesota, when she was 9 or 10, she would stand outside Blanche's window and call, "Hi for Blanche! Hi for Blanche!" letting her know she was out there, ready to play.  Just thinking of it made me cry.

I feel unequipped, uninformed about her life, unable to fully measure what seeing old friends means to her. It's been her whole life, job, career -- forging durable friendships, lifelong friendships -- and to deny her access to her friends is like stealing from her or locking her up.

But her whole existence now depends on care. She gets help showering, dressing, undressing, keeping her room neat, doing her laundry, and her complicated meds are given to her when she has to have them. To take her away from there, to be responsible for her every minute -- I just don't think I could handle it.

Moods, states of mind, pleasure and pain

Behind Venturi's, one block away.

Ms. V and I pushed work and mothers aside Wednesday, ate at an Irish restaurant downtown, went to Turner's for the Maria Bamford comedy show, and stayed the night at Aloft, the trendy hotel nearby. I even brought flowers! It's the best we could do for our 30th anniversary -- which actually isn't until Monday, but hey, we thought we'd last five more days.

So I owed Mom the Wednesday visit I'd missed, and paid it back Thursday morning. It was her best time of day, mid-morning, and she was even waiting for me, having remembered our arrangement.  Not a small achievement, considering. We made calls, looked over her papers, I snatched up some bills. She's getting mail from old college classmates, hoping to see her at their 60th reunion, coming up soon, and she said she wanted to go.

I could see it so clearly.

"I just don't think I can get you there, Mom," I said.

I felt like an ass, but her ambition is greater than her ability. Six hours in the car feels, to her, like a day and half. She'd be asking if we were lost, saying I didn't know where I was going, insisting we had to stop and ask, and constantly saying how long the ride was. She'd say, "Work with me, now, Nels," and call me her brother. She'd try to open the door while we were moving. It would be not just difficult, but dangerous.

And even if we got there and spent, say, two days at the reunion, it would be two days at her elbow as she introduced me again and again. "This is my son Jon." "This is my son Jon." "This is my son Jon." She'd gawk at the people, talk nonsensically, introduce me twice to the same people, and be tired in an hour and a half. Mostly, I don't think she'd have any fun. I'm sure I wouldn't have any fun, not that that should matter. Though, of course, it does.

She just looked at me for a minute, realizing, I think, her powerlessness.

*

This afternoon, she called me at work and left a message.

"Hi Jon. This is Mom. Just calling from my place here. Just lonesome for you, I guess. Call me if you can. I'm home here now at my place. OK, bye-bye" -- trailing off.

It made my heart stop for a moment. Such bald need. Such pitiful pleading. I want to help, I want to help, I want to help. She wants me there, she wants one of her children with her at all times. But I can't, can't, can't spend my life with my face constantly in front of her. I want to be able to ride my bike, I want to be able to go to Maria Bamford, I want to eat Irish food, I want to spend a few nights at hotels with my wife.

Finally, tonight I called her back. 6:15 p.m.

"How are things?" I ask.

"I keep moving, and I moved into the other room, and all my stuff is there -- it's just like the other room, and everybody says it's my home."

I think maybe they've moved her. "Are you still in the same room?"

She doesn't know.

"Are you in the room with the bathroom in the center?"

She says words, but no answer. She sounds exhausted.

"You're tired, Mom. You should lie down."

"I need to sleep," she says. But she wants to sort out the problem.

"Mom, just lay down, take a nap. I'll come tomorrow and we'll sort it out, OK?"


*

Niece S is here, and we went to Good Friday church, with Julie in the choir. It was depressing, as, I guess, Good Friday church should be. We'll have brunch with Mom tomorrow, I'll ride, and in the eve we'll watch the Badgers in the Final Four. Then, Sunday, Julie and S will go to Appleton to the mother there, and I'll spend Easter here, in the pew with Mom.

Moms, Moms, Moms.