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.

Fall after fall after fall

South side of the building,
where people who can walk live.

Wednesday, Thursday, Saturday, Sunday. I got one ride in, and not even an hour of writing. I don't know if it's really need, or my own compulsion that keeps me going there -- my desire to come through this and have no regrets, no wishes that I'd done more.

I reserve the right, though, to be cranky.

She's had three fairly mild falls in the last three or four days. She doesn't understand -- and who would -- that the way she gets places is by sitting, not standing and walking. So she stands and falls. When I push her in the chair and we stop for a moment, she moves as if to get up, and if there's a railing nearby, as in church, she pulls on it to stand.

Her efforts to get up, and her falls, have forced the aides to put her in the penalty box -- right out in the hall by the elevators where they can watch her. It's a more social venue anyway than in her room, more people passing and saying hi.

She was good yesterday and today, her color good, her mind working pretty well. I took her down to the bistro yesterday in an after-dinner visit, where we ate Dove bars. Mom spied a woman sitting alone, crooked her finger at her and gestured for her to come over -- ordered it, almost -- but the woman declined, and Mom went back to her Dove bar. It's interesting that, even in her dire state, she doesn't really mope, but seeks connection. Any random stranger will do.

So I went back to take her to chapel today. (Going to the regular church, which necessitates a drive, is just too complicated.) I love the services in the chapel. Religion works best in times and places of trying circumstance, and Mom's time and place fits the definition.

Today there were maybe three dozen people, and only about about three-quarters of them could stand. The hymns are sung with gusto and affirmation, the prayers, oh dear, the prayers, are beyond touching. They start with calling on blessings for the world, then the country, the state, the city and right on down to the place and the congregation.

Then the reader names those with birthdays this week, and then those, invariably absent, who have asked for intercession -- "Georgie, Ted, Fred, Maureen, Bob, Marie Christina," 12 or 15 names -- and the reader says, "and those we name, either silently or aloud," and quiet calls rise up from the pews, "Sister Ann, Roger, Jim." The first time I heard it, I cried.

*

Julie and I and Mom made a post-church visit to Mom's room, and coming back, an older, shaking woman named Judy got on the elevator. She said, "Well, M___. Do you remember, the first day you came here, the very first day, you were down by the entry and you said, 'Can you sit with me? Can you talk to me?' So I sat down and we talked."

She was confused that day, scared, in a whole new place. I'm only sorry I wasn't there myself.

*

Young son E, on his way to making something of himself, has published a piece on the trendy website N+1, about growing up next door to Scott Walker. It's a lotta fun. Check it out here. 

Night ride

A changing landscape

Calatrava in full flight

It's hard to know what to think. I saw her Wednesday for dinner and she looked awful -- pale and cadaverous. After we ate she wanted to lie down, so we went to the room and she got in bed, then wanted her nightie on, so we got her up, but before we finished that, she said she had to go to the bathroom, and in the middle of that two aides came and said it was time for her shower. She was exhausted and wanted to beg off, but they went ahead, which I thought was good, and I left.

Then yesterday I went in the morning, and she was great. Having breakfast with G and B. Good energy, talked -- a nice morning. Everybody confirmed that both days she had gotten therapy, which the first week, only thanks to Sister K, did it happen at all.

So today I went again, and again, she struggled in the afternoon. Julie had been there midday and was told by an aide that she had hardly slept all night. So when I got there, she didn't know where she was, where she lived, where I lived, where she ate, did she have to pay, and on and on. Even after little sleep, she'd had a big day -- watched Al's Run, which comes right by the front door, and, when I found her, had just finished a snack while an opera singer entertained.

She was exhausted, and I took her to her room, tried to get her into bed, but she complained as to method and final arrangement, so I called in an aide, who did it just right. And finally I left, promising to take her to chapel tomorrow.

This move to rehab has been an upheaval for her, and she complains more than usual about her loneliness, though between Sister K (last week) and Julie and I, she's been visited at least once a day.  Next week, there'll be a staff meeting on her situation, and then on Thursday, she and I will meet with a social worker about getting her regular visits with a private aide -- three hours of companionship, basically, on weekday afternoons.

She never has been able to entertain herself, and now, unless someone puts something in front of her, she just lays there.

The time, the care, the effort, and the push-pull with the staff has just about doubled in the week since she returned from the hospital.

TosaFest
You know, it's not such a bad look. 

What if one of us wasn't there?

Kites on the lakefront

Sister K has been here all weekend, working virtually 24/7 on settling Mom in to the rehab wing. It's been hard to get Mom the care she needs from the aides, who seem indolent, and to get her to her therapy sessions. It's not clear even if she's supposed to be brought to therapy, or if the therapist is supposed to come and get her.

Time and again, when K shows up, Mom hasn't been tended to in one way or another, or in several ways. She's not been dressed, or not been brought to breakfast, or not been taken to therapy, or she has to go to the bathroom, or she tries to stand when she shouldn't. Today at breakfast, K said, Mom stood and her wheelchair rolled away from her. It stopped at a nearby wall, but there might not always be a wall there.

K asked an aide, Why not put the brake on? "Because that would be a restraint, and we're not allowed to restrain them."

Such crap. It really makes me angry. If you're not going to put the brake on, YOU GOTTA BE THERE WHEN SHE STANDS.

Julie had a friend who said Mom's elderly housing place is great -- until you get to rehab. And that's where we're at right now.

Still, I've seen Mom walk since her surgery -- with a walker, with someone holding her firmly -- and it is cheering. But it doesn't solve any real problem. She'll always be unsteady on her feet; she'll still freeze and jitter in place. She'll need a wheelchair for most movement, and that means she'll need a pusher. Kari's taken her out several times -- to Walgreens and around -- but that won't happen if the aides are all she has. I'll take her out when I can, but I'm not there all the time, and she'll spend a lot of time alone, in bed.

K says she's begun to fret when she's alone; she's full of anxiety. After all the attention at the hospital, the reality of her situation has hit home.

K thinks we should hire private help -- somebody to come in the afternoons, make sure she gets therapy, stays up and about, and provides company. So K and I will look into that.

I think Mom's decline is kind of like global warming. You have a cold day and you think, no, it's not really happening. But it doesn't change the science. Mom has a good day and you think, maybe she's improving. But it doesn't change the science.

The Fellowship of the Strings
TosaFest