What have I done?

Today, in the middle of the afternoon, I had a moment of overwhelming regret. I am not the right guy for this job.

You don't have to like her

Cyclocross in Estabrook Park

I arrived today to find her out in the hallway in the penalty box. She was delighted to see me, as if she hadn't seen me in years, when I'd just been there yesterday and told her I'd be coming. "Well, Jon!" She clapped her hands.

I asked her if she wanted to go to chapel, and she said yes, but bathroom first. When we got there, I found she'd already gone. It was in her pants, down her legs, on her socks and shoes. Getting her out of her pants and underwear, it got all over the floor, and I threw up in the sink. It was on my sweater before a minute had passed, and I worked for half an hour to clean her up, clean the floor, the toilet, the sink. I used half a roll of paper towel, and it overflowed the trash basket. Her whole room stank.

"Didn't you feel that you had to go?" I asked.

"No."

I got her into clean clothes, she called me a "champ," and we were late to chapel, but it calmed me down.

Then to the Bistro for brunch. A lady joined us and I chatted with her, Mom listening but not talking. Julie came. Mom ate just a couple bites of her two pancakes, and when we were done, I told her I'd take her to her room, and then I would be going. "You mean this is over? Your being here is over?" I said I'd take her to her room, and then it would be over.

We got there and got her into bed. She was exhausted but too anxious to sleep. "I don't have any credit cards. Where will I sleep tonight? Are we going home tomorrow?" When Julie said she was leaving (we'd taken separate cars, just to burn more fossil fuels), she challenged Julie on what she had to do, what she was going to do, where she was going to go. Julie finally left. I said I'd stay for a while, and turned on the Packers game. She laid back but never closed her eyes, and sat up every couple minutes asking crazy crazy questions, and saying I couldn't go, what was she going to do if I was gone when she woke up? When would we be leaving for home? Would I bring her with me? I dodged and evaded and finally ignored her incessant questions and tried to watch the game.

After a while I went to the bathroom, mostly to escape her. It had been cleaned up and was smelling normal thanks to the aides. Mom and I had gone around and around for 40 minutes, and I sat there feeling my life tick away. She called to me and said one more time that she didn't think she could handle this or that, and I really lost it. "I can't stay here all the time with you!" I yelled at her.  "I can't just stay here! I have to go."

"What will you do?"

"I have to pay my bills and do errands. I have a life!"

I should have said, "pay your bills," but that wouldn't matter to her.

She was stony-faced, but still pleading. I gave her a perfunctory kiss, and left. I seethed all the way home.

I should feel bad, but I don't. It is a lifelong theme -- dependence on us. It wasn't fair when we were young, and it isn't any fairer now that she's losing her mind.

I hope, I really hope, that this ends while I can still conjure good feelings about her.

As Uncle M sagely put it, "You probably have to love your mother, but you don't have to like her."

Her window

Guest post

Brookfield

Here's a guest post from Julie:

I stopped in at St. John’s yesterday over lunch.  It was gorgeous weather and so I took your mom up to Cranberry to see if I could take her out on the deck up there that is just off the dining room.  She was just finishing what she described as “delicious” apple pie and ice cream (and it did really look good) and when I asked her if she’d like to get outside a bit, she was all for it.  As always, she wondered how I found her.  I think, because she doesn’t know quite where she is, she is amazed when someone pops in.  

Anyway, we saw a few familiar faces up at Cranberry and everyone wanted to stop us and say a warm “Hi Mary!” and your Mom went through the dining room like a visiting dignitary with aides and old friends waving, patting her leg, shaking her hand.  We then went on the porch which was actually a little breezy and cool.  After just a few minutes in the crisp air, and after studying the view and some potted geraniums which were still at peak color, we went back in and your Mom became interested in a nap.  

Because of the new rule about someone staying in your Mom’s room until she’s fully asleep, I had to get back to work, so the aide said to just have her grab some coffee in the dining room nearest her room and have her sit there until they could get her into bed.  

There was a chatty gentleman who was sitting at a table and he welcomed your Mom to join his table as the man he had been conversing with was now fully asleep in his wheelchair.  Your Mom joked that the sleeper was getting a jump on nap time and by the time I left she was having a conversation of sorts with the chatty man still awake at the table.  She seemed quite happy and, for the first time in a while, I didn’t feel the vague depression I usually feel upon saying goodbye to her.  

Anyway, that’s my update.

All Saints

Chapel 

Sunday.

I arrived at a little after 9 to take Mom to chapel. An aide in the hall told me she'd had a rough night and they'd given her Xanax at 5:45 a.m. and she was still zonked out. I found her that way in her room, but she woke shortly and I helped her to the toilet. She was parched and incoherent and not entirely awake. She said that the people were coming, and there was a meeting about her, and she wondered when it would start. All morning she kept coming back to the meeting "about where I'm going to be."

She was agitated at breakfast, eating scrambled eggs and toast, but we went to church anyway, halfway through, and it was something she knew and could lock onto and she grew calmer. Then off to the bistro for a sweet roll and coffee.

I asked what had kept her awake, and she said she was "wanting to go to bed, but they wouldn't let me," and "one of the ladies just hates me," and, finally, "I was waiting for you."

I felt awful. I'd stayed away Saturday and left her in free-fall. She'd been through something, or imagined she'd been through something, and there was no telling what it was.

"You see, I want to be my own master, but the minute I get into that room, I'm not allowed to do anything," she said. "They get so panicked when I touch the floor ... I can't make any decision about myself."

It's true, and anybody would hate it. But they are petrified of her falling -- she's done it so often -- and don't leave her alone unless she's asleep. A dozen times during the trip to down chapel and back, and even in her room, she tried to stand, and every time I had to gently pull her back down.

She was tired, and, with Julie now, we took her back to her room. A nurse came and checked her vitals and gave her some pills. The aides asked us to stay with her till she slept, and finally she did. Julie set the bed alarm, and we left.

*

At chapel, it was All-Saints Day, and they read the names of the residents who had died in the last year.

Jane, Jack, Mario, Flora, Verena, Helen -- it went on and on. Thirty-three names. It's a church under siege.

On the phone, in the room. 

Selfish is as selfish does

Three shades of hair

We made the scene in Appleton Sunday afternoon for mother-in-law's 90th birthday. There were never more than six of us, eating carrots and celery sticks, with, generally, more gaps than talk. Mother-in-law herself said almost nothing. We left the house and went to dinner at -- and now I forget the name of it, but it was good.

Had a better time at the hotel with brother-in-law and sister-in-law, where much talk of parents, which are a kind of epidemic.

My mom calls me most days lately, in the early afternoon, saying "I'm in my room now," or "I'm back in my room." She wants me to come over, and to bring my sisters, and asks in so many ways, "Where is everybody?" Like, why aren't they here?

I say I can't come now, and my sisters don't live here, and I feel deeply conflicted. I want to rush to her side, and at the same time, I am quietly fuming at her selfishness. It's not fair, I know. It's not fair, it's not fair, it's not fair. She's sick, and she's old, and her dementia visits more and more often.

She was always, I think, when it comes to her children, selfish. She would pout when we would go to visit  her -- when she was in good health -- when we would have to say we would have to be leaving a couple hours earlier than we'd planned because a blizzard was on its way. It would cost her an hour, or two, of our presence, and it would ruin the whole visit for her -- every minute of every day that we'd been there. She would rather us risk the blizzard with two young children than deprive her of 60 minutes of our presence.

I wonder if, when you're pressed to the edge like she is now, you don't actually become more of what you were -- your whole self distilled to its essence. She doesn't think as well as she did most of her life, true. She doesn't remember or talk as well, true. But the need inside her -- the what she wants -- is purer, brighter and more intense than it was ever was.

Selfish? Probably it runs in the family.

What's left

Part of what's left

Saw mom yesterday and I asked her how she was.

"I'm having a breakdown, actually."

"Why's that?"

"I'm starting to realize this is my home."

She was near tears, her eyes deep, wet pools. She looked beaten-down and deathly worried.

I'd been upstairs in her old room loading a cart and taking stuff down to the car. This is the third major downsizing since we shut down her AA condo a year and a half ago. It's work, work, work. We have two storage units now full at U-Haul, and someday we'll have to sort that out and get rid of more. As it was, I left a whole bunch of stuff for the place to sort out, throw away, give away or sell.

I got help last weekend from Sister S and Brother J -- we spent almost a full day moving the big stuff out with a rented truck, and still there was a lot. Some of the choices were easy -- save the coats, the framed family pictures, some of the dishes and glassware, which can go to FF. But what about the teak elephants? The fancy decorative bowls? The beautiful vases? I couldn't take it all. Saving it, storing it, moving it just pushes it down to the next generation. So sorry, kids.

I wish you could live on two planes, parallel tracks, where time given to certain things came out of some reserve, so that you didn't lose any on the main line. But that's feeling sorry for myself.

Church today, then up to A-town, for Julie's mom's 90th birthday. To call it a "party" is to misunderstand my mother-in-law.

Drawing a line

Packer Sunday in the Bistro
"Lambeau South"

I had probably my worst ever visit with my Mom Sunday. I had a cold and had to flee church three times with coughing fits, the old ladies in the back trying to say kind things as I raced by, manfully  suppressing an urge to strangle them as I passed.  When at last Mom and I left the chapel we found ourselves staring at each other in her room, and then staring at each other in the Bistro over food she wouldn't eat, and finally, back in her room, she had to lay down and that was fine with both of us.

But Julie went later and had a delightful time. She wrote to my sisters, though my visit was "kind of a bust, the good news is that when I stopped by later in the afternoon that same day, your Mom had no memory of Jon's visit or going to church with him!" When Julie pointed out to my mom that it wasn't fair that I don't get credit, "she smiled and chuckled."

Funny!

St. John's has decided she'll stay in Stratford -- skilled nursing -- and has asked us to clean out her Cranberry room. So I took today off to collect boxes, rent a second storage unit, and reserve a van to move the bed, the couch and the dresser, among a slew of errands in her service.

About 1 pm., on my way to Target to buy her a couple of puzzles, she called. "I'm in my room now. What's your day look like?"

My day looked like, well, it looked like an afternoon in Maui, drinking Mai Tais on the beach. And, sure, I'd love to visit.

Not so much.

I told her bluntly I wasn't going to make it there today.

"Oh," she said, sounding hurt.

Which made me think -- damn it all -- Should I go? I'd been there last night, even, and Sister S and Brother J are coming tomorrow, and so is the private aide.

So I just drew a hard heartless line and said, again, I wasn't going to make it.