A Pleasing Thought

"After the publication of The Name of the Rose, the first movie director who proposed making a film out of it... told me, 'Your book seems conceived expressly for a movie script, since the dialogues are just the right length.'At first I did not understand why. Then I remembered that before I'd begun writing, I had drawn hundreds of labyrinths and plans of abbeys, so that I knew how long it would take two characters to go from one place to another, conversing as they went. Thus, the layout of my fictional world dictated the length of the dialogues."

--Umberto Eco, "Writing from Left to Right," in Confessions of a Young Novelist (2011) 

Monastery in Monreale, Sicily, ^ the town where my grandmother born (father's mother)

Turkey Tables

Happy Thanksgiving, Blogfriends!
I head off to work in half an hour, this Thanksgiving morning, to make toilet-paper-roll turkeys. 

You may recall, last week the residents and I, with the help of several 3-to-4 year olds from the childcare downstairs, made snowmen out of toilet paper rolls, like this one>

These snowmen have disappeared.

The idea had been to make Thanksgiving decorations for the dining room tables Downstairs, as requested by the concierge (truly this woman's job title) –– Downstairs, that is, where the regular grown-ups sit: the grown-ups whose brains still care about proper table centerpieces.

Our snowmen ended up looking demented (naturally) but adorable, so three residents and I took them Downstairs.

As we were placing them around the dining room tables, the new kitchen manager, whom I haven't met yet, came out of the kitchen. 

He stood there, nervously, staring at us. 

"Hi!" I said. "We've made decorations like the concierge asked us to."

"Oh!" he said, relieved, "you're watching over them."

The light dawned: he'd thought all four of us had escaped from Memory Care.

Obviously my plan to appear like Shirley Schmidt on Boston Legal has failed: I must at least get some less rumpled work clothes.

When I came into work two days later, the snowmen had disappeared.
Melted, I suppose...

So, my cunning plan is, this morning we shall make turkeys out of tp rolls to replace the snowmen. 

________________

[Btw, I microwave the rolls to sanitize them (for 1 minute, not 2, since I discovered cardboard catches fire), and wrap them in construction paper before anyone works on them.]

"I want to do it."

On the dining room floor at work, crumbled cornbread from lunch.

"Do you have a broom?" asked a resident walking by. "I'll sweep that up."

"Oh, great," I said, and went and got a broom and dustpan for her.

Her friend scolded her. "Don't do that, you've got a bad back."
[She doesn't, this was a figment of the friend's dementia.]

"Hush!" the woman scowled. "I want to do it!"

Wow--a resident said what she wanted to do!
The Big A (not all people with dementia have Alzheimer's, but a lot do) erodes people's ability to communicate clearly in words. Getting to know them is like playing a clue game, usually without words. 
But in this case--a free card!
Time for some more "therapeutic fibbing": I will get some popcorn or something and sprinkle it on the floor and see if it works a second time. There's no guarantee: the Big A is a cunning one.

Craft Tip No. 1

Here's what I learned this week:
Toilet-paper rolls?
Don't put them in the microwave for 2 minutes to sanitize them.

I tried it at work, and thankgod I didn't walk away because in about 80 seconds I got a whiff of burned cardboard; opened the microwave and half the rolls were singed.

I imagined a future job interview.
"Well, see, I lost my job doing activities with people with dementia because I set the kitchen on fire microwaving toilet-paper rolls."

Actually, I bet anyone who does crafts would recognize such a goof-up. (I never did crafts before, but I feel like I'm turning into a Pinterest board.)

The Lead Pin

It helps to be creative with language when you have the Big A.

Setting up the lightweight bowling pins for us to play at work, one woman told me insistently, "They have to be in a triangle. This, " waving a pin at me, "is the lead pin." 
The one that goes at the tip of the triangle, I guess she meant.

Later we made applesauce.

"If only my mother..." she said.

"Did your mother make applesauce?" I asked.

"Oh, and how! But she's dead."

"I'm sorry. My mother's dead too," I said. "I really miss her."

"I miss her! The mother is the lead pin."

10 minutes at 10ºF

Good morning!
I have ten minutes before I have to head out to catch a bus to work. 
I might've biked even in this cold, but it has yet to get warm enough to melt the sheets of ice on the bike path.

I spent all day yesterday shrink-wrapping every leaky window in this old house (for those of you who don't live in arctic conditions, this plastic sheeting stuff is like saran wrap, specially made for indoor windows), and now I don't wake up to a film of ice on the inside of the windows.

So, today is Toddler Day and I'm actually sort of looking forward to seeing the little thugs. 

Did I tell you they took my bike chain  off?

A few weeks ago I'd locked my bike to the railings around the outside play area, and when I came out, I was mystified as to how the chain had come off.

Later a janitor told me, "Don't lock your bike there. There were five toddlers running around with bike grease all over their hands."

For their troubles, the grown-ups and I will make them play-dough today---colored & scented with Kool-Aid... I hear this works.

Anyway, while in general I prefer the old folks, I have to admit that the toddlers' brains have their charms, including that they are expanding not diminishing, and as a biological being, I find that attractive. 
Life! It's nice.

And the old folks have plenty of life in them too, and I'm learning more and more what brings that out. 
The other day we played balloon toss for half an hour (a long time to hold their attention)---they batted and kicked balloons to one another, and I was the retriever. I actually worked up a sweat.

"This is fun!" someone said, and a couple other people echoed that.

Success!

Something of Mine

The past few days, I've been squirrely for something of my own to do. This is a good sign:
After a month of working full-time researching, reading, writing, thinking, and experimenting with activities and dementia (more , if you count the time my brain keeps humming), (and only paid for half that time), I've finally felt that everything at work is going well enough that I could take a break. Actually, everything was going well enough from day 1, but I didn't trust it. 

 This work would absorb everything I could give it, and more. 

Marz said, "You could make a book called Mine; Get Your Own." 

Perfect. I spent the evening water coloring --I set up water colors every day at work, but I never get to sit down and use them for more than a minute.

So, here is my painting of my string of marshmallows in hell prayer beads from a friend of my parents I called Uncle Yaman--he'd brought them from his home in Turkey when I was little. 

I just looked up the amber and it seems it is either butterscotch amber from the Baltic or a kind of vintage Bakelite called faturan used in Turkey before the 1940s to make prayer beads. 
They are soft and clicky---very satisfying and soothing to finger, and I handle them a lot.

(This is like a continuation of the Three Things prompt--draw/write/whatever three of your things that are very "you.") 

And now I leave for work. I biked on the Greenway bike path yesterday after a day of icey snow (too early!)----it was too dicey--I almost fell on ice twice, and I was tense the rest of the time. 
So it's the bus for me until the sun comes out and melts the pathway.

Oh, no! I was wrong about the stripes...

After I wrote that last post, I went to take a shower, and just as I soaped up my head with Silverette Shampoo (or some-such named bluey gooey stuff for gray hair), I realized,
I WAS WRONG ABOUT THE STRIPES!

I'd written that one woman had asked me repeatedly to count the stripes on the flag she was painting. 
I kept reassuring her, "That's right---there are thirteen."

Then I'd go help someone else, and she'd demand I come and count again, saying they didn't look right.

I thought she was just being confused. She does have dementia, after all.

But now I realize she was right:
I'd been counting the red stripes, and there were thirteen. 
But there aren't thirteen red stripes on the flag. 
There are seven. Seven red and six white stripes total thirteen.

Ha! So much for me and my neuronormative brain.

"The Free Things"

For Veterans Day at work today, I xeroxed an American flag on the color copier at work (this is a great resource) and invited the residents to paint their own flags with watercolors.

Some people need a painting prompt––if I don't provide one, they ask, "what are we painting?" and if I say stuff like, "whatever you want," they just won't paint anything. 

Others always do their own thing no matter what. Some people find it very satisfying to paint straight lines, and they especially got into painting the red stripes. One woman repeatedly asked me to count her thirteen stripes to make sure she had the right number.

While they were painting, I asked, "What do we love about America?"

Only a couple people can respond to open-ended questions like that, but once in a while I like to throw one out.

"We have a lot of . . . the free things."

[coupons? sales? social welfare programs?]

"Oh," I said, "freedom?"

"Yes! Freedom!" 

Trying to engage the residents provides a real workout for my memory: I also dredged up all the songs about America I'd ever learned in grade school, such as "Home on the Range," "This Land Is Your Land," "Grand Old Flag", "God Bless America," and the "Star-Spangled Banner." 

The residents and I knew most of the words to these songs, etched in  our brains long ago, though we did mangle the national anthem's lyrics. Everybody does that, right? 
["o'er the ramparts we watched were so gallantly streaming..."?]

The Seventy-Five-Dollar Hot Pad

< The first completed hot pad made by the Sewing Group on the Memory Care unit, led by me.

The group of about six ladies sorted, folded, and cut the fabric; 
I sewed the pieces together on the sewing machine.

You can't clearly see that the pattern on the brown cloth is owls. You also can't clearly see here how crooked the seams are. My auntie taught me how to sew on a machine forty years ago, and I haven't done it since. Plus I didn't have pins so I sewed it up freehand. *

But here's the thing: as a sewing project, this may be a disaster, but as something people with dementia made, it's a triumph, and I'm really, really pleased and proud of the group (including me).

They don't seem to care about the finished product––it's too removed in time, too many steps away from the beginning, and when I showed them, they said polite things like, "That's so cute!"

I hear this response to all sorts of things, some entirely not cute.
In fact, I gather our brains store such polite murmurings in the same part that stores swear words and racial slurs, separate from other verbal communication, and Alzheimer's doesn't kill off these automatic responses until very late in the game.

I am curious––and a little worried––what family members will think. Some of the group could have made a perfect hot pad in five minutes, a few years ago. 
Will their families see this out-of-whack object as a sad sign of decline?
Or, as I hope, will they see it as a hopeful sign of ongoing engagement with life, of "a wholehearted participation in the present"?  * *

I took the hot pad home to photograph it, and on the way out of the building I showed it to the receptionist. 

"I love it!" she said. "You should sell them as a fundraiser."

"Thanks," I said, " I thought about that, but this one took two weeks to make..."

"Oh, yeah," she said, ". . . so it's a seventy-five dollar hot pad."

Exactly.

I'll get faster, and I'll get pins, and the next ones will be better. Maybe I can get the price down to twenty-five dollars.
In the meantime, the group can give crooked hot pads to their families, starting with the daughter who gave us her sewing machine.
________
* Full disclosure: I didn't even use a pattern, I just made it up as we went along. Also, the owl fabric is polyester that I think might very well melt if you picked up something hot with it. 
This item is strictly "for decorative use only."

But! I just found a very simple pattern I will follow starting this coming week: Quick & Easy Hot Pad Tutorial.
_______________________ 
* * " a wholehearted participation in the present"

Does it seem like I'm insisting the family members stop grieving? I hope not: that's not at all how I feel! 
I hate suggestions to "just celebrate what your loved one can do."
No! I'm all for raging and screaming against this horror.
And sadness is an honorable emotion with a noble pedigree that modern Americans seem to want to wipe out. Bad idea.

But I do hope the activities I lead will bring relief, not cruel reminders. I hope the hot pad project may represent people enjoying handling fabric (over and over and over again)--experiencing the colors, the textures, the scent even, of cloth. 

When I say, as I have before, that the enjoyment of the moment (over and over and over again) looks to me like a Zen state, I'm very aware I'm talking as an outsider. These aren't people I knew before, so I don't know or feel personal loss over how they've changed.  

I was glad to read a similar observation from an insider, therefore, in Rebecca Solnit's essay "Mirrors" about her mother's dementia (in The Faraway Nearby, Viking, 2013, p. 224). 

Solnit and her mother had had a contentious relationship:

"Finally, the war ended. She [Solnit's mother] forgot the stories that fueled her wrath, and when they were gone, everything was different. ...When I was in my thirties and things with her were at their worst, I'd considered never seeing her again.... ...In this late era, well down the road labeled Alzheimer's, my mother lit up at the sight of me.
... It wasn't just that she was more pleasant for me to be around; she seemed to be more pleasant for herself. She had achieved something of the state people strive for through spiritual practice: a lack of attachment to the past and future and a wholehearted participation in the present. It had come as part of a catastrophic terminal illness, not a devotional pursuit, but it came."

The Drop

Thursday is flower day on the second floor: 
a nearby grocery store donates their past week's flowers before the fresh lot arrives for the weekend. Sometimes it's just a few buckets. This week we got a grocery cart full of bouquets. 

I spread the flowers out on the long activities table and invited everyone around to help cut off the cellophane sleeves.

Rob [not his real name] is a quiet man who spends most of his time doing puzzles, alone but at a table in the public area. (Some people stay alone in their rooms.) 
When I ask him if he want to do something, mostly he just shrugs. I haven't been sure if he's hard of hearing, doesn't fully comprehend me, or truly doesn't care one way or another. He shrugged at the flowers, but got up and walked over to the table.

I'm trying to be calmer at work, but with all these flowers, and lots of people needing advice, I was in a bit of a flurry. I took the flowers Rob had freed and shoved them in a vase. The florists usually sheath the floppy stems of gerbera daisies in a green plastic straw, but they'd missed one.

"Oh, look at this one," I said to Rob, holding up a daisy that was flopped-over in half. 
"We'll have to..." I paused, distracted.

". . . put it in the middle," Rob finished.

"Oh," I said, "right. Yes, I'll put it in the middle where the other ones will support it." 

In fact, I had been going to say "throw it out."
______________________________
One of these days I'm going to do some of my own art again, but in the meanwhile, here's this nifty watercolor by blogger Elizabeth Merriman:

FINE Art Day

I've been at a corporate training the last two days---designed to be so boring, it seems, as to make workers eager to get back to work. I am, anyway, after sitting through hours of power points...

Also I'm eager to see what the paid expert does, she who is coming for the first time to lead the "intergen" group (kids & grown-ups).
She observed last week, and when one of the aides asked, "Are you coming to do crafts?" she said,
"Oh, no! We do fine art."

I do see the difference--I've mentioned the difference between making hot pads or baking, which is work guided toward an outcome, and water coloring, which is free expression, but I bristled at her seemingly snotty distinction---especially toward an aide who was only being friendly and welcoming. 
(If nothing else, it's not in your self-interest to annoy the aides who help you as well as the residents.)

My main activity today will be trying out the exercise balls for seated exercise. I found a good guide here online. 
And, off I go.

All Souls' Day

Today is All Souls' Day, the beginning of the month of the dead in the Catholic calendar. 

My mother is my favorite soul. Here she is, below, wearing sunglasses at my brother's wedding because she'd doped herself up to her eyeballs in order to attend. She spent most of her time in her hotel room, ordering pancakes from room service. 

I'm on the far right. I hadn't wanted to come either. I'd asked my brother if attendance was optional.
He'd said no. (Lesson: don't ask.)

L to R: sister, brother, mother, me, at my brother's wedding 
(1996? –97? God, I don't even remember.)
All these people are not dead, to be remembered on All Souls' Day. Only my mother. 

I had this photo up for years. bink took it, and I think she caught some of the Monty Pythonesqueness of Family: everyone engaged with someone off camera but not with one another... It could cause pain, but mostly I just feel affection.
Also, I like my hair.

The ceremony was in southern CA, where the bride is from, "by the ocean": basically in a parking lot (for boats). The grass was some plant that grows green spikes under adverse conditions. 

It was the first time we'd come together in 20ish years, kids and parents, and it would be the last time until my mother's funeral some five years later, if that counts.

I don't imagine we'll get together again. I certainly wasn't willing to try again when my sister got married in San Francisco a few years ago. I know she was displeased, but I didn't ask for permission.

When I meet family of people with dementia at work, and I see they haven't made the switch to the new reality, I can relate. My mother didn't have dementia, but she did slowly disintegrate (the sunglasses didn't fool anybody), and none of us could really get in synch with that. 

I'm meeting friends at the basilica where I used to go, to go out for breakfast after Mass. There's a Book of the Dead set up for the month; I'll write my mother's name in.

Your Way

Watercolors by Georgia O'Keeffe and a resident whose idea it was to paint in a book her husband had given her. 
This gives me the idea to use art reproductions as painting prompts instead of setting up still lives.

People's personalities are obvious in their painting styles. I put Frank Sinatra on while we painted, and when he started singing "My Way", she started singing along.

"This is your song," I said to her.

"Yes, it is," she said.