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