Where is the joy?

Slammed by snow

I got five calls in two days after my sisters left town. Mom said she was in crisis, or didn't know where she lived, wanted me to come over. I am inadequate to the depth of her need -- it will never be filled. But this has happened before -- people come, she's the center of attention, and then they leave, and she falls into a hole.

The funny thing is, she didn't seem to be having an especially good time during Christmas. There was a lot of noise, a lot of people. She looked, as one sister said, like she had one foot in the grave -- gothic and frightening.

I wonder if joy is beyond her. Or, maybe the expression of joy. Her face rarely shows happiness, but, still, she could be happy.

I finally got there last night -- she was buoyant and her mind and mood were good. We had dinner, went through mail, did a couple of Christmas cards, She got tired and I left her with the aides and departed without trouble.

Another call today when I was at work. Was I coming over? No, I said. But young Ezra went tonight and took her to the New Year's Eve event at the place, and that was nice of him.

Then I got a call from a nurse saying she'd fallen this afternoon -- even before Ezra got there. Got out of bed, reached for her walker, and went down on her head. No sign of injury. It's become routine. I have half-promised to go tomorrow. I'm sure it'll be a long boring day there. But I'll wait till late afternoon so I don't get trapped.

So this is the not especially satisfying state of things. Hope everyone has a great 2016. You know where to find me.

A little reading from Kerouac on Niece K's birthday, Dec. 26.

A technological advancement

Hey! Video! It's not a great video -- just wanted to get that wine in there at the end -- but it actually does work, I think. Let me know, if not.

I'm enjoying a Sunday away from church, while Sisters S and K fill in.

For our three-day Christmas, Mom worked hard to stay engaged. For at least two days, she was at the rental house well past her normal bedtime. True to form, she was more attentive to who wasn't present than who was. Like when Ahna called, her first words were, "I'm so angry that you're not here." And when two members of the party had to fly off a day ahead of the others, it was "I'm so upset that they left."

It is easy to poke at her, but it's hard to be her. Something I should remind myself of more often.

Love that mac and cheese

The state of the church

Natal

72nd Street

Merry Christmas everybody!

We've got the whole fam damly here in town staying at a rental house. We ate meatballs and lefse last night, opened gifts and sang carols. Fun. Mom was a trooper, lasting till 7:30 before getting a lift back to her place. She'll be back later today, I think, after Christmas morning chapel.

Young E and I did the candlelight service at the big church last night, then went back to the rental for more drinks and chat.

Sad that Julie couldn't be with us -- she went to her mom's for a very quiet two-person event, with her  mom going to bed at 6:30. These mothers! I am hoping that there is some earthly pay-off for these mitigated experiences and that we don't  have to wait till heaven takes us. If there's a heaven.

But anyway.

We snuck to DC last weekend, two nights, to see Ahna and Blaise, getting back early Monday morning. Consequently -- or probably it would have been anyway -- it was a rough week at work, given the harridan nature of my boss, and my own lifelong inability to kowtow to authority. Retirement, I think, is wasted on the old, and I can't wait.

Have a great new year!

A and B

Ez and Chris on a background of salads

 

No good answer

A couple of fairly placid weeks till this week. 

I got a call Monday from a nurse saying that Mom had fallen and hit her head in the bathroom. Her private aide was there, in the room, and the nurse was livid that this had happened. Mom was OK, I guess -- no blood, and no sign of any problem. Mom called me shortly later to say she had had "a little fall and it was MY FAULT."

I called the aide's boss and reported this, and also reported a vague comment from Mom that the aide sometimes falls asleep in the chair when Mom's in bed. The boss said these were serious problems, and she called the aide, who reported that the fall had happened when Mom got out of bed "fast" and went for her walker and fell before she could do anything.

Mom never gets out of bed fast. I thought it likely that the aide had fallen asleep. The room is eight by ten, and you can't be in there anywhere and not reach Mom in a couple of seconds. But the aide denied that she ever nods off. We pay extra for this aide. Her only job is Mom. So she is on notice. I'm a little pissed by all of this, and I think that Mom calling it her own fault is just a way of protecting the aide. I have debated seeking another worker, but Mom is attached to this woman, and, by the aide's reports, she does get her out of the room for exercise and activities, and Mom does recall most of the specific activities, when asked. One recent day, I think it was Tuesday, Mom didn't nap at all, according to the notes.

Meanwhile I have lined up the aide for extra work on Saturday and Sunday, when Julie and I will be visiting daughter and son-in-law in DC. But I canceled her for days around Christmas. 

Mom also has reported "fights" with the workers, and being "yelled at." I don't know what to make of it. When I ask her closely, it seems to be about her getting out of her chair, when I have seen them yell and come running. She persists in doing this -- she'll fall and break something else -- and says they treat her like she's in jail. I think the night staffing is thin -- just three workers, I'm pretty sure -- and some nights they're probably putting out several fires at once.

Sister L has suggested moving her to NYC, where there is more family to spread the visits, but to move her -- she's already confused about where she is right now without a move. And I have thought of bringing her to my house, but we're never home, and to get an aide for her when we're gone means there's just one person to interact with, not the many she has every day now. She's made friends, she would be deathly bored at the house, and I would go crazy. There's no good answer. 

The yin and yang of altruism

Medical students, who really don't sing so well.

A Christmas sing-along Wednesday, an aimless afternoon yesterday, and today a chapel service she seemed to pay little attention to. I followed along in the program with my finger, showing her where we were, but her head was always up, looking at the people, sometimes staring.

I'm not sure that it ever really was the content of a church service that engaged her so much as the hour of quietude, the music, the people, and the social hour. When we were kids, and even older than kids, she used to unwrap candies in the middle of a service -- inflicting the little crinkling of cellophane on, say, a moment of silence -- and pass them out, a sort of acknowledgement that church often lacks sufficient stimulation, and a little sugar, more than the Holy Ghost, will keep your spirit up.

Mom put on her glasses in the middle of the service today -- a spasm of "I should at least try to pay attention" -- and seemed unable to land the glasses on the bridge of her nose, so that when she was done, the center bar of the glasses was cocked over one eye. I hurriedly fixed it, but, just watching her, I felt bad that even this simple act seems almost too complex.

Yesterday we called one of her lifelong friends, and she's pretty good on the phone, something about it clicking for her. But when I tried to explain that I was going to meet Julie and a friend for lunch after church today, it was immediately mixed up with Christmas plans, where I'd sleep, where she'd sleep, where did I live, when were we leaving, how did I find her, who was the friend, how can she get some money, where was her checkbook, what time would I be back, and what would she do all afternoon.

It's that last one that kicks in my guilt. I had no idea what she'd do all afternoon, other than sit in the penalty box chatting confusedly with one of the aides, take a nap, eventually have dinner. All I really knew was that I didn't want to be there for it.

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. 

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.

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

Guest post

Update from Sister K, who is in town:

I arrived yesterday at 1pm and found Mom dozing in her bed. Two minutes later D and C showed up for a visit, and there was a steady stream of caregivers and guests all afternoon, including Al and An from upstairs. 

At 5 we went to dinner and ate near Pat and Grace, both 94 and 100% present, and the meal was silent but not unpleasant. Be arrived but in an unsociable mood due to leg pain so she sat alone in the private dining room. A mild-mannered married couple sat at their own private table next to the group table and spoke a mixture of English and German. 

This was part their conversation during the dinner of what was called "pork marsala":

M: Wiener schnitzel!

W: Well, it isn't advertised as such so it can't be held accountable for what it doesn't pretend to be.

M: There is recognition in the audience!

(Later)

W: The pork is good if you take off the breading and dip it in the sauce.

M: Well, mine is completely breaded -- it wouldn't be wiener schnitzel if it wasn't.

W: It isn't wiener schnitzel, breaded or not.

After dinner Mom had a thorough "bed bath" with wonderful aide Ay. Jon came and we all chatted for awhile and then Mom was ready to sleep and Jon and I went out for a drink.

This morning we ate breakfast with Be, who was in a much better mood, and the gracious Grace. They reminisced about time spent in NYC. Mom could not really follow but her comments were somehow melded in and she seemed to feel a part of things. The social time wore her out and she zonked for about a half hour. 

At 10 she was taken to PT in the basement for an hour and 15 minutes! When I left her there she was doing an arm workout like pedaling. She can walk with her walker for short distances and with lots of support. Tomorrow I'm going to stay and watch the whole thing so I have a better sense of what they do with her.

She took a huge nap after PT and then I dropped her off for a late lunch at 12:30 (everyone was still there and a bevy of student nurses were chatting them up). I went for a run and returned at 2 to find her asking after me. 

She couldn't really sleep much in the afternoon so at about 4:30 I took her upstairs where we visited her old room and sat in on trivia for a little while. None of it seemed to stir her memory too much, but she happily greeted the staff members and they hugged her. Julie came by for dinner and we ate with Ja and Be. Mom was exhausted after dinner and went to bed before 7. 

Mom is pretty confused about what's what and where she is and where she's been and what's happened to her. When she visited Mom, An kept saying "Mary, I'm soooo sorry about what's happened!" Finally Mom said, "I'm getting pretty sorry about it too the more I hear about it!" She has no memory of her hospital stay or the surgery, or that she used to live upstairs.

That's the news. I'm sitting near the bistro as I write this since I have no wifi in the guest room. During her naptimes I'm keeping busy with my homework since classes have started.

Full credit

Mom with her walker,
surveying Julie's garden in early August.

It has all happened so fast, this decline. She fell a third time last night, after the ambulance had brought her back to the elderly housing place. She has been moved to the skilled nursing unit -- nurses always present -- and in trying to get out of a wheelchair, she fell down on her knees. No injury, but what is skilled care about except for preventing falls like this? Any transition from bed to wheelchair to table or whatever MUST BE ASSISTED. 

Her new room is small, I would say less than half the size of her room upstairs. It's got a single bed, not the queen she had before, a small closet, a dresser, a TV, and a bathroom. We are slowly moving clothes, toiletries and everything she needs down from the assisted living room. They're holding it for her for now, but she may not move back. 

She has lived through a lot of upheaval in the last year and a half -- moving to a new place in a new city, moving from independent living to assisted living, breaking her hip, spending days in the hospital, and now moving to a whole new room on a whole new floor. All of this, of course, after my dad died, after her heart surgery, after falling and breaking her elbow, after breaking her kneecap, and after Parkinson's set in. I don't know that I could have lived through any of that without falling into despair, but she has handled it with a kind of grace and sense of acceptance that is remarkable. I give her full credit. 

We've made visits daily since this happened, Julie making as many as I have. The church sent flowers Sunday, and she's had a couple of visits from the pastors. She naps often and thinks that anything that happened before the most recent nap happened yesterday, which I've stopped trying to talk her out of. 

I talked to a nurse yesterday, and will meet with a social worker maybe this week, to plan ahead in case there are decisions to be made that she may not be able to make at some point in the future. It was sobering.

I didn't think this would be this hard.

Humbug

Door County

Mom's going to be in the hospital another day or two, getting out maybe tomorrow or maybe Monday. 

I saw her today and she looked pale and wan and wanted to leave. I felt bad for her. It's dull there when they're not tending to her, and she doesn't read or watch TV or do anything to entertain herself. I read her her mail -- Dot, MM -- and she liked that, and we discussed her junk mail piece by piece and threw it all out. It was something to do. 

I stopped at her place and met the rehab nurse and went upstairs and checked Mom's email. That room will stay hers until they know what's what. 

I think, soon, she'll need constant care. I can't see her bouncing back from this very well. The nurses say she'll get her strength back with therapy, but she didn't walk well before she fell, and to risk the other hip? It's not worth it. 

This property for sale -- seriously!

The broken hip

Hospital room view

Mom fell in her room Tuesday afternoon and broke her hip. Scraped her arm and knee pretty good, and said she waited "an hour" for the aides to find her writhing on the floor. But 10 minutes to Mom feels like an hour, and it might not have even been 10 minutes.

She had surgery Wednesday evening, and it helped moderate her pain, but if she walks again, I will be surprised. She fell using her walker, and before and after her fall of a week and half ago, she has had regular near-falls with her walker, and has gotten less and less steady on her feet.

It's been a difficult week, trying to finish my work, running to the hospital and back, sitting with her, she and I both bored, and waiting in the waiting room, me just as bored. Her thoughts and speech have been jumbled, and today when the case manager at the hospital called and said that, "because of her confusion," they would invoke my power of attorney in her move back to her place (to the rehab unit there), it shocked me a little. Not that I haven't been doing that work, taking that responsibility, right along -- but to hear from an outside professional what we privately observe as her wild state of mind threw into stark terms the depth of her decline.

Laying in bed, she has rambled intricately and impossibly between her old home, her summer place, the hospital, her elderly care place, and between people present and gone, bringing up her mother, her childhood, me, my dad, her children, somehow confusing them with Julie. When the nurses ask her a question, she'll answer in a reasonable tone, and with proper head-nods of emphasis, such a pastiche of utter nonsense that they are forced to answer "OK, OK," and look to me for an answer.

If I'm there.

I'm not going today. It took a broken hip to get her the constant care and attention she so craves, and she is well occupied. When they leave the room, she gets somebody to call me and when I answer she complains to me bitterly that the hospital staff is "not doing anything. I'm just lying here and they're not doing anything." It makes me want to scream.

The care, the need, the time she requires will only grow when she leaves the hospital -- likely tomorrow -- and settles into some unsatisfactory new state of life.

My friend Tom, and others I know, have said their elderly parents never recovered from a broken hip, and some died right there at the hospital. I don't wish for that -- and yet she is leaving bit by bit.

That same orchid

Birthday, ambulance

MOM'S BIRTHDAY
(If I'm not going to write very often, I might as well use a lot of pictures.)

We took over the dining room Thursday last week and celebrated Mom's 82nd birthday. We brought fudge-lined chocolate cake with white frosting, wine, a giant orchid, dark-chocolate-covered almonds, and high-end peanut butter cups. We sang  "Happy Birthday" four times, as Mrs A., who has no memory, kept saying "Aren't we going to sing 'Happy Birthday'?" So we sang it again and again. And even the grumpy woman, who never smiles, wheeled her chair over and tugged on Mom's shoulder to wish her a happy birthday. Mom, of course, didn't notice, but it was touching nonetheless.

"This is the best birthday I've ever had," Mom said, but I doubt she can remember any of her other birthdays.

Still, we had fun.

So, Julie and I are up north now, a five-day escape. It does seem like we get away a lot, but what we're doing is making the most of my three weeks of vacation. And boy am I ready to retire.

So wouldn't you know, on Monday night, a day after we got up here, I get a call from the nurse. Mom has fallen, and while nothing is broken, she won't stand again, even with help. She had been using her walker, but it didn't keep her on her feet. One of the aides said she had been outside with her earlier, and she nearly fell then, and I noticed, on Sunday, that her legs shook more than ever as she took her little stutter-steps, and she would sometimes just freeze in place, unable to move.

The nurse wanted her to go to the ER, which I thought extreme, but I said OK, and she went. Then I wondered, should I drive down, three or four hours? It might all be over by the time I got there -- or maybe she'd be there all night, afraid and full of worry. I held tight, and finally got a call from the ER. She had an infection, and was wearing one too many medical patches, which exacerbated things. She was home by 10:30.

I called her in the morning.

"Mom, I'm sorry I couldn't get there to help out."

"Oh, that's OK. There were a lot of people."

The nurse relayed this: As mom got into the ambulance, she looked at the attendants and said, "My,  aren't they handsome."

Who knows what goes on in her head.

Up North

Up North