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.

Our friend Buddy

Buddy
(Julie pic)

Julie got us a bird-sitting job, and, after rejecting my suggestion, that we teach the bird to say, "I can't say that!" (too "meta"), we are teaching him to say, "Jon is great! Jon is great!" It's kind of gratifying to hear my wife saying that over and over and over again.

Took Mom to the eye doc today -- a two-block wheelchair ride fraught with tension. The central issue for me was would she have to go the bathroom before we returned. She held out. Her eyes were fine.

Jon is great!

Everybody has something wrong with them

Night ride

Had dinner with Mom last night -- chicken tenders and asparagus. A couple came in and sat at a separate table, and I couldn't figure out what was wrong with them. They seemed put-together, and were well-dressed, elegant, even. But everybody there has something wrong with them, and it became clear that she was in charge, and he was asking questions about what to eat next. I rooted for him, and when he insisted on the strawberry shortcake dessert when she was saying no to it, I wanted to give him five.

For Mom and me it was one of those nights when we had nothing to say to each other. She started to introduce me to the couple, but then didn't pursue it, thankfully. By not talking, I wondered, Why am I here? But just sitting with her is part of it.

Over at the other end of the room, the tall man with the impish, beautiful face wasn't eating dinner, or had eaten little. The aides talked among themselves reassuringly. "He ate a good breakfast and lunch," one said.

He wanted out, but, in his wheelchair, was trapped by the wheel of a woman's chair at the next table. He asked for help, but the aides, eating dinner themselves, weren't ready. "We'll be done in a minute here, Jim. Then we'll get you out." He was OK with that, lowered his head, gave his big smile. I thought there seemed to be nothing wrong with him, except his body.

Then a woman at the table next to his took an interest. "Can you walk?" she asked him. And, louder, getting up and walking close to him, "Can you walk? ARE YOU ABLE TO WALK??"

He couldn't have missed it, but he didn't want to say he couldn't walk. He wouldn't look at her, just focused on the aides, as if to tell the woman, if I want your help, I'll ask for it. 

Then she went at the aides: "YOU'RE NOT GIVING HIM ANYTHING TO DRINK."

"He doesn't want anything to drink," said an aide.

"LIKE MILK!" the woman said.

When we finally left, they'd reached a stalemate.

We went to Mom's room and went through the mail. Bills, solicitations. I think it's taking bill-paying off her hands she's most grateful for. "I'm so happy for you," she said.

We wandered out to the hall, thinking we'd go up to Cranberry, but the elevator was out, and then her aide caught up with her and said it was her shower night. We killed a little more time, Mom wondering where she'd sleep, where I would sleep, who she would have to pay. I had her lie down in her room till it was time, pressed my nose to hers, flicked it side to side, and then it was time, and I left.

Sister L and Julie
in the remodeled basement

Therapy

Physical therapy -- "tennis"
Photo by Sister L

With a full audience last night -- me, Sister L and Julie -- Mom was in good form. She was in bed, looking almost asleep, but held a great conversation with L about the day's physical therapy session,  how the PT and OT women "really pushed me. It's good for me." It had lasted two hours, L said, with the OT woman working on what seemed to be household tasks, and the PT woman working on walking, weight bearing, arm strength, and getting around. It's all paying off in more strength, but, alas, not a lot more agility, as, with a walker, she still freezes up -- can't take that next step without a little urging.

It made me wonder about all the napping. She'd have been asleep if we weren't there, but she really didn't show much fatigue at all for quite a while. Even when we finally had to go, she seemed only a little drowsy, not gratefully embracing sleep the way she does. I think it's boredom that makes her sleep. And for her, the cure for boredom is people, and the surest cure is us, her kids. It always involves another person, and, in a way, it's a lot to ask.

But it's true, most of us have somebody around a lot of the time. Some of us with somebody around crave to be alone for part of every day. I wonder if she ever felt this. Maybe when she was a young mother. We have a trove of letters she wrote to her parents -- deep reflections, observations of the kids, what was going on. Reading them, you get the sense she was relishing the time she had -- alone -- to write those letters.

OT
Sister L again

Why can't the care be better?

Bomb scare up the block
August, Wauwatosa Now

One of my better news pictures. Anybody see "The Hurt Locker"? The robot at left planted a small explosive on the site (surrounded by the orange sand bags). They detonated it remotely, and while the small explosive went off, nothing else. It was a just an empty piece of pipe with caps on both ends. It might have cost $100,000 just to find out everything was fine.

I got today off -- no Mom -- thanks to a visit from Sister L. The sisters have been steady visitors, and even more frequently since the broken hip. Much appreciated.

Just a quick update, I guess.

She continues to fall, trying all the time to stand and walk. If she breaks another hip, that, I think, would be the end. They keep her in the penalty box when she's at large, and I went the other day about 6:30 p.m. and found her there, by the lounge near the elevators. She was quaking with fatigue, her face stretched and her eyes half-closed. I asked the aide why she was there, why she hadn't been taken to bed, and the aide said she was alone -- watching two others -- and that the other girls were dealing with a new resident and it took both of them to lift him.

Then the tall burly aide -- one of the few men -- came by, and Mom said, "He can help, he can help," and the guy says "No no no! It's my dinner time!" and sallies off. The asshole. Anyway, I was there and I took her to her room. She complained that they hadn't let her go to the bathroom, and so I got her on the toilet and found her disposable underpants totally soaked.

Is it so hard, really, to afford these people a little dignity?

I cleaned her up, and an aide came to help get her changed and into bed. I took the elevator to the first floor, and then, seething, went right back up and told the aides (there were three there now) that it was unacceptable just to keep her waiting there when she was so plainly exhausted, and when she hadn't gone to the bathroom in way too long, having to go right there where she sat. The aides said, they were tied up with the new resident, the one had to watch the three residents watching TV, and so on.

"She's paying for care. I'm just very disappointed," I said. She was so much better off up in Cranberry.

This prompted Julie and me to discuss moving her somewhere closer by, where the full-care wing is thought to be better. There's a place just a block away, and if she were there, it would easy to visit almost daily. I didn't want her that close when this started -- back then, she'd have been walking over to our house all the time. It would have been awful. It's different now. But then, I think, to move her, when already her sense of place is so confused? And she does have friends where she is. There are no easy answers. Nothing about this is easy.

We have hired a private aide to come three times a week and spend the afternoon with her. She is Deb. The first two days she came, we had her scheduled from noon to three. So, she would eat with Mom, then Mom would take a nap and she'd watch her sleep. So we're changing it to 1:30 to 4:30, so the nap would be over. She'll still nap, but maybe not so much.

Napping, napping, napping. It is a way of checking out. My dad, near the end, took long naps, and slept long, long nights. It seemed like it was the only time he was fully himself. Sleeping is sleeping, I'm pretty sure, whether your mind is sound or not.