Where we stand today

It's been a pretty stable week here in Old-Folk's Land. We had a sedate Thanksgiving dinner at the nice restaurant in Mom's Place, with me, Julie, Niece S, Ezra and Mom-in-law. We stuck to well-worn conversational topics, got Mom organized in her room, and Ms V and I made it to the 1 p.m. showing of "Spotlight," a very good movie. Ez and S drove Mom-in-law home -- thank heaven for helpful kids.

I was with Mom again yesterday for a couple of hours. We played balloon badminton in the basement, and she did some pacing back and forth on the two-rail walkway. She does that very well, she's got strength in her legs, but I felt sad that this tantalizing taste of independent mobility will never lead anywhere for her, as, without rails, she will fall and break another bone. Today at church I had to push her back down in the chair a couple times when she tried to stand, as I do almost every time I'm with her.

We had a snack after church at a table that accumulated about a half-dozen people and had good conversation for a while, Mom mostly quiet and pleased to be listening, though she talked to one kind woman. I could tell from the woman's perfected nods and unmoving smile that Mom wasn't always making sense, but that's not so unusual at the place. I've long since stopped trying to cover for her, which is just as bad as the nonsense.

Getting her the private aid for weekday mornings has really improved her life. Loneliness is the enemy.

Today, if I had to give a report, I'd say tracking and logic are down, but so is unhappiness, which I'll take.  

Energy

With Ezra in the therapy room

Went yesterday afternoon with young Ezra and found Mom in the penalty box looking a little wild-eyed. She'd had a two-hour nap after lunch and had a lot of spunk. She led us downstairs to the therapy room and got us playing three-way "tennis" with rackets and balloons. There's a walkway down there with a rail on either side and we got her up and she walked back and forth a dozen times very deliberately, with long steps, counting each one. She said it was how the therapists had taught her.

It was a revelation to me, that I could actually take her down there. I've been doing this almost two years and haven't figured half of it out.

Her medicare-paid therapy has ended, as the therapists determined she was not making "sufficient progress." To me this sounds like a decision based on money, not on her actual needs. Whether or not she's making progress, she likes and needs the exercise, and if she didn't so something, she'd lose the ability to do anything.

This is why Debbie, her private aide, is important. We have her coming now five mornings a week, and she takes her down there, or to the gym, and has her ride the "sit/bike" and play ball. It makes all the difference. She comes M-F, and when she didn't come yesterday, Saturday, Mom called to ask me where she was. It's the weekends that feel long.

I took her to chapel today, and to brunch in the Bistro. She doesn't say so, but I know she would like to sit at the big 10-person table, where the high-functioning conversationalists hold forth. I'm more on the, um, antisocial side, and would just as soon eat alone, so we sat near the big table, at a little two-person table by ourselves. Later, Julie joined us, which drew us closer to a respectable gathering.

"I feel like a don't fit in," she said. And when we were done, she made me wheel her around to random people to greet them and introduce me, for the umpty-umpth time.

Leaving her early in the day, close to 1 p.m., is always tough. We brought her to the upstairs dining room, where her friends were, but she said she wanted to lay down, which raised the specter of sitting with her till she was asleep, lest she get up and try to walk  -- and we saw how well that worked last time. But Rose, the greatest nurse in Milwaukee, said she'd take care of it, and we left unruffled.



 

A different set of eyes

The Tosa Skatepark

Well, three uneventful visits since the drama of last weekend. I don't know if she remembers it, but neither one of us has brought it up -- no doubt the wisest thing. She continues to cling at the end of a visit, but Wednesday I came in the middle of dinner, and then it was bedtime. Yesterday I went at 2:30 or 3, and by 4 she needed a nap, and dinner would be at 5, so time wouldn't have hung heavy. And today, Julie and I left her at the lunch table, where her friends Bev and Grace were still sitting, and though she quietly complained, it wasn't too bad.

Somewhere there's probably a data-driven study on this, but I take it for granted that a child -- a son, let's say (a purely random example) -- isn't going to be an entirely objective observer of his mom. So here's some notes from a private aide we've hired, who spends three mornings a week with Mom:

Day A:

Mary eating breakfast. After breakfast took her down to gym to work out. We had a full morning. She did a half-hour on sit/bike, threw a ball back and forth for half-hour. As we were walking back upstairs, in the craft room they were making pirate hats. We stopped and Mary made a hat and decorated it. She had a lot of fun hat-making. Took her to lunch. Mary had a great day and lots of fun. 

Day B:

Met Mary in hallway meeting area. She was very sad and crying. I asked her why she was so sad and she said she was lonely. I took her to the lobby to look at all the quilts (a hanging display). I asked her which was her favorite. She said they were all so beautiful she could not  make a choice. We went and sat in the Bistro for a while. A gentleman from her floor came and sat with us and he seemed to cheer her up. Mary wanted to sleep. Woke Mary up to take her to lunch.

Day C:

Picked up Mary from breakfast. She seemed tired but I wanted her to do a little exercise. Put her on sit/bike for 20 minutes. At least five people came to talk to her, including D (her first friend). Mary is very loved here. Taking Mary back to room, she was very sleepy. Let her rest. Took Mary to lunch.

My presence distorts the picture. This is a more accurate view, I think.

Hart Park

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.