Friday, October 31, 2014


This photo I took at work yesterday gives me pangs of joy.

Bowling with a lightweight ball & pins was a big hit on 2nd floor---both men and women liked it, which is rare. (So far, mostly I can't get the men interested in the activities I offer.)
I moved the pins closer or farther from each person, and all but the most disabled were able to launch the ball and knock a few down. Very satisfying! and people cheered for one another too.

I can't post most photos I take at work because they clearly show people's faces, but this is my favorite anyway. I did blur the features a little for privacy; it still works, I hope. 

I could imagine doing a photo essay showing a side of life with dementia that isn't normally shown: 
people being themselves, not just losing parts of themselves... 
So much non-verbal stuff remains in play, even as the analytical part of the brain fails.

Thursday, October 30, 2014


My laptop is telling me it doesn't support me anymore, and wants me to update its browser, but the new browsers won't load. It works fine otherwise, and it bugs me that five years old is considered old for this technology. 

I'm grumbling because I wanted to show you pictures of the hot pads the people on 2nd floor and I made yesterday, and my computer won't load pictures. (Truth is, it hasn't been right since I spilled coffee on it three years ago.)
 You can imagine the hot pads--maybe they're what you yourself might make if you didn't follow a pattern, which I didn't. 

I didn't take the time to measure the cloth carefully for the people to cut, not because they can't cut straight: 
if they can still manage scissors, most of them are quite handy at such things. It's the "what comes next" hurdle where they freeze. I can't mark one piece and then instruct them "do the same thing with the next piece". Most people need direction for every single step, every time.

It makes me realize that what we consider simple common sense is anything but simple---I guess about a zillion connections have to be in linked up in our brains for us to take the next step in a process.

The hot pads are also crooked because I sewed them on the machine, the one a daughter donated, and I don't know what I'm doing, and also I can't concentrate at the machine uninterrupted, I have to get up or speak up regularly to help people sitting at the activities table.

I don't care if the hot pads are crooked, and the residents don't either, most of them. (One woman is actually focused on things that don't line up right---I'll have to make a perfectly square one to show her.) 

I hope that their family members don't care either, but I worry they might see them not as a triumph, which believe me, they are, but as another sign of loss. 

Some of the family members don't seem to have calibrated their expectations to the new reality. (When I speak of this, I'm not criticizing--I can't imagine how hard it is to accept and adapt to your partner or parent changing this way.) 

Yesterday I was trying to praise a woman's cloth-handling abilities to her husband, and he kept telling me about the complex crafts used to do.
I get that, his need to talk about the loss of his reality.* 
But at some point, if he can't adjust, that seems to stand in the way of his ability to support and even to enjoy her as she is. She doesn't have the abilities she used to have, not at all, and that's a killer. 
But she is the only one at the table who can mark her own cloth and cut it perfectly.

[* UPDATE: I realized later that this husband was more likely trying to emphasize his wife's former skills to me, so I would appreciate her as someone with a history. 
But other family members do act as if their person has just disappeared, which isn't wholly true.]

Friday, October 24, 2014

What Works

I. Cut the Cloth

I'm coming to see that it's important I help the people I work with to work, i.e., to be useful, and not just to do things that are merely, only, fun.

My favorite dementia educator, Teepa Snow, says living in a care center can be like being trapped on a cruise ship: being entertained all the time and never doing anything useful gets old fast.

I had a glimmer of that listless feeling from being out of work for too long---and now I feel the relief of having good work to do. I'm energized by this new job. The other morning as I was biking to work, I realized I was excited to get there! That was the day I was going to start the quilting project.

As it turned out, most people obviously most enjoyed simply folding the fabric:
cutting out quilt squares was too precise for all but a few of them, and I had to do a lot of the work or closely direct every single step, which with one of me and maybe eight of them, I can't manage.

Me (center) quilting with a couple of the most adept crafters

I'm going to keep the quilt project going anyway, because besides engaging the residents, I think it's important to help their families and friends too, and when we produce tangible results, like quilt pieces, I can see that the families are reassured and even thrilled.

That matters. In my 12 days at work, I can already see how emotionally taxed some visitors are. Their faces are like a slide-show of grief, dismay, fear, and––when they see their person doing something they can relate to––relief and gratitude. 

The daughter of one woman even donated her sewing machine to the project, when she heard me saying the kids one I got at the Thrift Store really wasn't adequate.  The residents won't be able to operate this powerful machine, but I hope they will enjoy watching me sew the pieces together while they sit at the table and continue to work on sorting and folding the fabric.

II. Smell the Cinnamon

Thursday is my one full day, so I have time to lead a baking group in the afternoon. Yesterday we were baking apple-carrot cupcakes with cream cheese frosting. Another visiting daughter ran to get her mother, who, she told me, always loved to bake.

Well . . . not anymore she doesn't.

The mother sat there and shook her head. I could feel the daughter's frustration, and, I'm sure, so could her mother.

The thing was, the daughter was using words alone to communicate with her mother, and her mother's disease is pretty well progressed, so words don't convey much. But emotions do, and the daughter was radiating concern. Loving concern, I could tell, but the feeling of it was jangley.

Based on the mother's reaction, I don't think she heard, Come do something fun.

The way she was glowering and leaning away, I think she felt something like... mmmm... maybe like the fear I felt when my father tried to convince toddler-me to get into a grown-up-size swimming pool. My fear was so acute, I still recall it clearly, though nothing else about the day remains.

The four other bakers and I were putting together the dry ingredients, and when we got to the cinnamon, I passed the bottle around for everyone to smell. Then I asked one of the baking group to hand it to the mother.

She sniffed it, and she smiled.

She never did join in the work of baking, but she did relax and continue to smile when I did things such as getting her daughter (!) to beat the eggs, and she sat with everyone who gathered afterward for tea and cupcakes.

At this tea time, I asked my fellow bakers if they had enjoyed baking.

Each one of them let me know it was only OK.

I was a little surprised. They'd certainly joined in willingly enough.

"But if we don't bake," I said, "we don't get to throw a tea party."
They all agreed with that.

Instead of dropping baking, which I thought about for a moment, next time I'm going to emphasize more that we're baking to feed other people, for a party.
Maybe it's not the most fun thing, but it's good work.


Remember the pine cone decorations we'd made?

They all disappeared. I figured they'd been thrown out or something, and I put that activity down as a loser.

Yesterday I went into someone's room, something I rarely have cause to do, to get her sweater. There, lined up on the windowsill, were about half the pine cones! This woman is a rather sparse person, not a hoarder; she must have taken them because she liked them.

My little heart swelled.

Tuesday, October 21, 2014

Those bloody toddlers...

Hi, kids, today we're going to make a sea of blood!

No, we're not. Even though child-fearing me is desperate for stuff to do with the toddlers when they come visit the old folks twice a week, I am NOT going to make the Ten Plagues of Egypt with them, though I found plenty of ideas on home schooling pinterest pages. 

Really, you can make a sea of blood in your bathtub that would have given me a terror of baths when I was little.
And here, Plague of Flies cupcakes!

This is the hardest part of my job--coming up with toddler activities. The old people love them but aren't able to initiate stuff with them, and I just don't know what kids that age can do.

I turn to the Internet, and have decided that instead of making a plague of frogs out of construction paper (tempting though that one is), damned atheist that I am, we are going to sing "Clap Your Hands" with Pete Seeger, and read a Toot & Puddle book, You Are My Sunshine, and then make a rays-of-sunshine mobile out of construction paper

Saturday, October 18, 2014

Zen Fibbing & Sewing

I found a kids' battery-operated sewing machine at the Thrift Store yesterday, so now we can do safe and simple and slow sewing projects at work.

We have a lot of donated scraps of fabric, perfect for quilting. When I suggested to the residents that we could make a collective quilt, one woman said we should make a crazy quilt. 
Yes, how perfect: a demented quilt!

I brought up a big pile of scraps to fold, which people really enjoyed. I relate to the enjoyment of sorting and folding that people with Alzheimer's commonly have.

Here we are. Except for mine, I blurred the faces for privacy, but you get the feel, and you can see the little white and pink sewing machine in the center of the table.

When the fabric was mostly folded, I took the pieces into the hall, shook them out, and brought them back in to be folded again. 

"Therapeutic fibbing," that trick is called. It feels a little weird at first, but it so obviously facilitates ongoing comfort and satisfaction, like facilitating a Zen state---all enjoyment of the process, with no concern for the outcome. 

I'm a little surprised to find that being around the residents is rather restful (though being in charge is a lot of work). When I leave work and see the rest of us racing around, engaged in getting and spending, really, I do rather wonder who is wasting their powers...

NOT to romanticize dementia: the people I work with are in a Zen-like state––sometimes––not by choice but because their brains are dying. 

Friday, October 17, 2014

I don't have TB, and other good news.


Finally, I'm not tired!I slept eleven hours last night––really slept, didn't just lie there worrying about my new job. I woke up at 6:30 AM, refreshed.

I'm starting to trust that things are going well at work.

Yesterday we water colored pictures of pumpkins.  This one here was the only round and orange one. It's cheeriness, I think, is accidental, but I like it a lot. 

[Me (to resident who usually wears pants): You look lovely--you're wearing a skirt today.
She: It was an accident. ]

The woman who painted the cheery pumpkin paints like a careful child. She's the most well-intentioned of the people on second floor--always offering to help me do the dishes or move furniture.

"It's better than sitting around doing nothing," she told me.


Boredom is a real problem, I see: it's as if people with Alzheimer's have lost their start switch. If someone else (me) starts a project, they get going, many of them; otherwise they are often lightly agitated but inactive, like moored boats.

Already coworkers, family members, and the residents themselves have let me know they're very happy, even relieved, I'm there. 
One coworkers told me that the activities assistant before me didn't do anything, which is weird, because when people can't rely on words, communication becomes all about actions, including simple touching and looking.

I try to start and end each of our activities by gently touching each person's arm (if it seems welcome), looking them in the eye, and saying I'm glad they're there.
Though, in fact, activities don't usually have discrete beginnings and endings--one thing flows into another, so I have to remember to tuck that acknowledgement in, here and there.

Like finding a nurse to give me the Mantoux test for TB--they are here and there, out and about on the floors, but finally I coordinated with one, got injected, and the result is negative, which relieved me.

The nurse seemed surprised I would be worried about it.
"Do you live with someone infected who coughs on you?"

"No," I said, "but I live in a crowded neighborhood with lots of people from other countries, and I ride the city bus, and that feels like a big Petri dish."

She laughed and agreed.


At the end of my shift yesterday, my boss mentioned that one family member (f.m.) complains to her that when f.m. calls her mother from across the country, her mother tells her she's done nothing all day. 

The f.m. doesn't factor in that her mother forgets what she's done five minutes after she's done it. 

It just so happens I'd taken a photo of her mother and me, out on a walk in yesterday's weirdly warm weather. I sent it to my boss to forward to the daughter--maybe it'll comfort her.
Here it is, cropped for privacy. >
The full-size shows her grinning mother holding up autumn leaves.


Other good news--my sanitation book is getting great reviews, which makes me happy. One blogger wrote, "It’s like a lite version of a Mary Roach book!
(I haven't read any, but Roach writes popular science books, such as Gulp: Adventures on the Alimentary Canal.

It makes me happy partly because my brain is far away from words in my new work. Once I'm not so wiped out by it, I'd like to write more in depth about what I'm seeing. Or not. I could just keep jotting impressions down here.

Wednesday, October 15, 2014

The People on Second Floor

So tired...
I am loving my new job---it is meaningful, and interesting, and, often, fun... and exhausting, physically and emotionally. 

After too many years sitting at the computer, my body feels like a silted up riverbed---heavy with accumulations of many, many tiny little heavy things...

So, I'm going to drink some white wine (muscle relaxant!), watch some Boston Legal (Alzheimer's on a television show!), and then go to bed.

But first I want to show you all the water colors the People on Second Floor (Mad Cow Floor) did today. 

I'd taken scissors to the plantings outside the building this morning and gathered a bouquet of fall flowers as a subject to paint.
I love seeing how entirely differently people interpreted the painting prompt. 
It took hardly any time at all once I'd started this work for me to stop seeing the residents as "people with Alzheimer's" and to start seeing them as "X, whose precision reminds me of electrical engineering diagrams", and so forth.

Tuesday, October 14, 2014

That Which Remains

Scene from the Memory Care Floor

Me: It's your birthday today!

Craig: [baffled] It is? 

Me: Would you like to join the others and watch a Shirley Temple movie?

Craig: Shirley Temple? Oh God, no!

Sawing Sticks at 7 AM

My finger is bleeding.

In my quest to engage the men with dementia with more in this, my 2nd week as an activities ass't, I got up at 7 AM and trimmed the sharp ends off these sticks using a coping saw whose blade kept twisting around––finally nicking my finger.

I'm bringing in sand paper so we can smooth the rough edges, and eventually we'll make mobiles by hanging pine cones and wood beads  and something shiny (what?) from the sticks.

I'm hoping the women will like this project too...
The active ones seem to like most anything I offer: the stretch exercises, the water coloring, the baking, but mostly the men are unmoved––literally, I can't even get them to walk over and join us. Or if they do, they don't seem to enjoy themselves at all.

So I'm going to plunk sand paper and a stick in front of them and see if that interests them... or if they hit me with it.
Only one man has gotten angry--when I tried to stop him going into someone's room, he yelled at me.

Turns out, he goes from room to room every afternoon, harmlessly. (It sure would help if I'd known this--say, if gotten more than one day of orientation before being tossed into this world on my own.)

"What are you looking for?" I asked him.
"Everybody!" he roared.

The other project I'm bringing in later is a kid's bike: as luck would have it, this weekend the apt. building where I'm house siting was clearing abandoned bikes out of the basement, and I asked if I could have this one for my work.

Isn't it cool?
I coveted these stingray bikes with banana seats when I was little. 

I imagine lots of the people I work with assembled  bikes for their kids' birthdays... and I'm hoping they get into washing this dirty bike and taking its wheels off and on and cleaning the chain.
Then we could donate it to a kids bike charity and get another one and do it again.
Or they won't be interested at all... 
I have no idea. This is all an experiment. 

Sunday, October 12, 2014

The Fishing Net and the Wiffle Ball

A couple people wondered if my new job working with people with Alzheimer's might be like working with toddlers.

Before I started, I wasn't sure how to respond: 
I didn't think it would be, and I also hoped it wouldn't be since I've never been particularly interested in toddlers.

After one week, I can report that they are profoundly different. 

One of the first activities I led was making pumpkin cookies from scratch with the residents. I suppose making the cookies was somewhat like it would be with toddlers––lots of me shrieking, "No! Don't put that spoon back in the bowl" because the person who was supposed to be stirring the batter had instead started to eat it. 

But on the other hand, one of the most silent women quietly and competently used two spoons to form the cookies––one spoon to scoop up a ball of batter, and the back of the other spoon to push it onto the cookie sheet. 

Though only four people had agreed to come help make the cookies, once they were out of the oven, smelling of cinnamon and nutmet,  six other people instantly materialized. 
I felt like the Little Red Hen, except instead of refusing to share with the same people who wouldn't help bake, we all sat at a table drinking tea and eating the cookies. It was nice.

Out of the blue, one woman said, "My husband died."

The woman next to her looked stricken. "Oh," she replied, "that's like . . . [ pause ] That's like . . . cutting off your [ pause, search for word ] . . . hand."

So, no. Not like toddlers. 

I don't know about the neurology, but I picture toddler brains as fishing nets, trawling for any and all information and hauling it up to be safely stored.

And the brain of someone with Alzheimer's is, as a character on Boston Legal says, like a wiffle ball. There are disconcerting gaps in it, but some of the material is still connected. 

Ah-ha. Here, yes, I found a chart. Toddler's brains---they're voracious. We start trawling before we're even born.

Thursday, October 9, 2014

Demented Pine Cones

Does this photo suggest I am just a little over-revved, not to say demented, at my new job?

I'm holding a tray of table decorations we made: pine cones glued onto circles of felt.

They were supposed to be owls, with eyes glued on the cones, but I have learned that the people I work with do not wait for nor follow instructions---they just start glueing stuff on! The results tend to be more interesting than cookie-cutter crafts. 

 Thursday is my one full day, and by mid-afternoon, one of the residents told me, 
"Sit down and take a break. They will run you ragged."

She's very with-it, obviously, and I thanked her for seeing that I was going full tilt the whole time, which is not sustainable.
It's odd to see the various stages of dementia--this resident was so right about me, but when we talked more later, she couldn't tell me where she used to live.

I try not to put people on the spot by asking such specific questions---it just highlights the deficits in their memory--but I let her emotional insight mislead me. 
I will learn to let people show me who they are. 
And I will learn to pace myself.

But right now I am so tired, I'm going right to bed. 
At 6:30 PM, yes. 

Wednesday, October 8, 2014


I had a great day at work today, my second day. First we did stretching exercises to Frank Sinatra.
"Frankie!" one woman said. "I love him."

Later I set out real apples and gave everyone little cups of red, blue, yellow, and green tempera paints. 
From such simple elements, people did wildly different paintings.

Here are two of them:

Then I accompanied three people to a church service on a different floor. I asked one of them if I could sit next to her, and she said, "Of course! I love you and I'd love you to sit next to me."

"I love you too," I said.

I feel it already--the heartbreak that attends this kind of work.

Also, the exhaustion. I was on my feet the whole time, always trying to attend to several different people with different needs. 
But all in all, it was a fun day and I'm really happy with this work.

Tuesday, October 7, 2014

"I'm Schmidt."

Home again from my first day at work, unharmed by child or adult!
In fact, as I hoped, the toddlers were pretty cute.
I wish I'd taken a photo of our hand-print leaves: they were indeed misshapen blobs.
Exchange of the day:

ME, apologizing to a resident for getting us a little lost going to the elevator: I'm sorry--this is my first day and I'm a little confused.

HER, laughing: That's OK--we're all confused here all the time!

Anyway, I'm definitely the Adult in Charge, and tomorrow I will be on my own while my boss works on other floors. 
If I feel wobbly, I will channel my hero Shirley Schmidt (Candice Bergen), the unshakeable senior partner on Boston Legal

I want to start dressing like her too, since I have to dress up a little for work. Marz says the first step is to make sure my clothes aren't inside-out or stained. OK, so I have a ways to go...

 The main characters in Boston Legal are all at least over forty, and Schmidt is the best thing about the show. She is direct and entirely unapologetic about being powerful and smart, and she's funny and affectionate too. What other woman on American TV is like that? 
I am a total fangirl for her.

Year Seven, Day One

Today is l'astronave's seventh birthday and my first day of my new job: 
I leave in an hour to go lead activities with seniors ...and toddlers.


No one told me in the interview that I'd be responsible for activities when the little kids from the on-site daycare visit the "grandfriends" on the memory care floor where I'll be working with people with Alzheimer's and other dementias. 

But I am.

("Memory Care." Ugh. There's no way to name this, I suppose, that doesn't mean to be kind but sound condescending. 
I like instead how Denny Crane, the old lawyer in Boston Legal whose mind is losing its edge, goes around saying he has Mad Cow. 
Maybe it could be the Mad Cow floor? Same initials.) 

The thing is, little kids frighten me: 
tiny sociopaths with high-powered motors and minds like vacuum cleaners that suck up and remember everything.

See > > >
Advertisers know.

The other things is, my new boss e-mailed me yesterday to ask if I had an activity we could do with the kids today.

She had told me she'd handle the first couple toddler meetings, but I guess she's too busy--she doesn't have any assistants until I start.  She didn't say that, but then, she didn't tell me I'd be doing it in the first place either. 

Have I mentioned she is very young?

I think I see the lay of the land here.

At first I was annoyed:
I don't even know what supplies we have, how can I plan an activity?
But then I decided to suck it up and ask instead,  
How Can I Help?

I may only be paid to be the lackey, but in truth, I do kind of want and am capable of handing the power and self-direction of a boss. Ridiculous though it is, I'd prefer to plan activities even before my first day than to walk into a tightly planned unit I have to conform to.

And also, I may feel uncomfortable being in charge right away, but I do have a lot of life experience . . . and the Internet!
I can think up Mad Cow activities myself, but I don't know what little kids can do.

I googled "toddler activities with leaves" and a few thousands ideas popped up. 
Today, we'll trace hands onto construction paper (there must be construction paper around, right?), cut them out, and staple their stems together to made a leaf chain we can hang up.

This sort of thing, but you know no child or Mad Cow made such a tidy item. >

I can do this.
I think I'm going through a Mid Life thing: feeling like a beginner but really being the old hand.
Mad Cows or Miniature Sociopaths, Bosses or Minions---we all have more or less the same hand shapes.

So, off I go!

Monday, October 6, 2014

Gilgamesh/Enkidu meet Kirk/Spock

Orange Crate Art pointed me toward the Mesopotamian Epic of Gilgamesh [links to text] from c. 4,000 years ago––the ur-bromance, one might say. The hero Gilgamesh has a dream, which his goddess mother interprets as foretelling the coming of a friend, Enkidu, whom he will love "like a wife"
... but only after they fight, kiss, and make up. 

Naturally I thought of the "Amok Time" episode of Star Trek, where Spock in a fit of madness battles Kirk and kills him, or so he thinks. This leads to his expression of love, when he finds the captain is alive after all.

So I put together a fast & dirty little mashup of lines from the Epic of Gilgamesh and Star Trek's "Amok Time" for your pleasure and for my distraction the night before I start MY NEW JOB...!

* * *

Wednesday, October 1, 2014

Kirk/McCoy: "Someone to Watch Over Me"

2:09 minute fanvid by Margaret (Marz) of The Captain's Pajamas 
about Kirk & the good doctor (from TOS––the original series––Star Trek)

"Kirk/McCoy - Someone to Watch Over Me" from Milkweedy on Vimeo.

Song: "Someone to Watch Over Me" by George Gershwin, sung by Ella Fitzgerald