Birdcage

   Monday afternoon my back was still hurting from sitting on an overinflated ball (long story) so I arrived at the nursing home a bit early for my usual visit and found Mom parked in her geri chair in the hallway, unaware she was waiting her turn for a shower.
   Her hospice aide was passing through, saw me headed to her and turned back from wherever she was headed to assure me that Mom was "next up" but we had "plenty of time: Don't rush."
   My glimpse of this aide, whom I hadn't met before because normally she bathes Mom in the morning, left an impression of capacity, approaching middle age, strong softness. A welcoming, reassuring, red-headed woman.
   But crouching beside Mom's geri chair in the hall is never comfortable, and this day, there was no way my back could let me; fortunately the home has several seating areas we could wheel into, including "the birds" — a cul-de-sac with chairs arrayed before a large acrylic finch aviary.
   I think that this bird terrarium (it's a wooden cabinet with clear windows and narrow doors that can admit a human body) represents the tip of a subcultural iceberg: Somebody at the home must be a fincher, infatuated with zebra finches. I think this because, while trying to find the proper term for the home's bird box-cage, I Googled around and almost at once fell down a rabbit hole of zebra finchery.
   Unobserved among us ordinary folk, aficionados of the zebra finch go pleasantly about their obsessions, documenting themselves for one another on sites like Finchworld, eFinch, Finch Niche. They are dimly noticeable to Muggles only when they own a certain sort of semi-public but protected space and set up an aviary in it — like the one in Mom's nursing home. I found a website where people had posted plans for several aviaries just like her home's, along with photos of people erecting them.
   Also, at Savers, I found a 25-cent book about raising zebra finches.
   So there you go: Proof.
   The population in the nursing home's aviary-box-cage thing waxed during the winter, rising to what looked like 11 of the orange-cheeky pipers. But on Monday, only two finches were visible, and they had tucked themselves into a straw nest behind a silk flower.
   Also, the box held a pair of mourning doves, one of whom regarded us disdainfully, rotating an orange eye socket.
   Mom and I perched there talking about what good teeth I have and whether or not I have a car and we could go to my house, when a 5-foot-9-inch janitor-looking fellow arrived and thumped a package of cedar chips atop the box. The impact created a literal flurry of alarm inside. Birds peeped and fluttered before settling, uneasily, on the dowel-rod swing. On a chair behind us, he set a bottle of window cleaner, a shop rag and some sprays of purple silk flowers.
   I moved Mom back from what I had incorrectly supposed were the sturdy glass walls of the box to get out of his way. And then we watched as he went rapidly about spraying down those wobbly acrylic windows and wiping them clear.
   I asked how often he does the bird maintenance, and he said something confusing: "This month I'm doing all this month on the second Monday every other week."
   Eventually he unclasped the door and ducked awkwardly inside the box. He had to turn and stoop to step sideways though the narrow door. Suddenly there were four zebra finches and the two doves frantically beating around his head. Imagine King Kong and the airplanes.
   This was different enough that Mom actually noticed.
   "He can't let them out," she said. "Let's go to your house."
   I know how tall he was because I asked him after he emerged.
   Also, he said, yes, it smells in there, but not too much.

Individuals

   One time when Mom was still teaching special ed and I was back at home during a college break, I sat down next to her at the dining table while she was doing paperwork. It was her least favorite part of teaching — IEP time. Notebooks were piled around her. She was filling out an IEP for a child whose only documentable skill was sticking out his tongue. 

   An Individualized Education Program was a formal requirement for which only certain phrasing was acceptable. It was a proof in writing that the teacher had plans for the child that considered his needs and his potential. It required her to articulate her goals for him. 

   I was on a self-improvement kick, determined to become the sort of girl who takes an interest in others, and so I asked, "Mom, why are you bothering to keep up this charade that you can teach a child like that anything? What goal can you possibly set for a student whose skill is sticking out his tongue?" 

   She said, without looking up and while writing, “Retracting his tongue.”

Persuasion

Today I met a (new to me) nursing home character, "MeMaw." She's a broad shouldered, white-haired woman. I was sitting beside Mom's bed, alternately showing her my knitting and gossiping with her roommate "Sunny," when MeMaw pulled herself into the doorway.
   She teetered sideways a bit, and fingered the wall for balance.
   Sunny fussed at her to go get her walker from the Bistro dining area. "You know you need your walker, MeMaw," she said. "Where is your walker?"
   People do what Sunny tells them to do. MeMaw tottered out of sight but soon came lumping back with a walker. Based on how quickly she obeyed, I expected she wouldn't be able to say much — the nursing home has many vague, wandering residents — but MeMaw parked herself at the foot of Mom's bed and proceeded to cajole and coax her to smile.

   "She always smiles for me," MeMaw informed us.

   Sunny wasn't annoyed by her presence in the room, so I decided that it could be useful to encourage this lady to want to come in more often, talk at Mom more frequently.
   So I got Mom to show off how well she wiggles her nose.

   Mom's proud of her nose wiggling, which is an adorable sight, it truly is, and she has always known that it is. She used to know that it makes people like her, and I think she still does know it. She can wiggle it with her mouth open, so it looks like only the tip of the nose moves.
   Right away, MeMaw began urging Mom to wiggle her nose again, and Mom of course wiggled her nose.
   The three of us were very proud of our manipulations.
   I glimpsed Sunny's expression out of the corner of my eye. She was looking at us like we were idiots.

   Sunny is my age. What must it be like to live in a nursing home when you are 30 years younger than the rest of the residents?
   Today she told me about someone who had been taken away to a hospital, but then came back, and about a person who had pneumonia and had been dragged out of bed for dinner by an aide who didn't know she was sick. Also, someone has a UTI, which is bad. "He's sinking," Sunny said.
   I replied that it was interesting how people decline, and she said, "I sit by myself at dinner now that Gladys can't feed herself anymore."
   "Jean," Sunny's closest friend, lives across the hall, wheelchair bound but still in possession of her mind. Jean's roommate has dementia, and the other day she tried to get into her wheelchair alone and fell on her face. She looks like someone took a bat to her. But she's no more dazed than normal and can scoot her wheelchair up and down the hall.
   Sunny and Jean commiserate about their demented roommates. Jean's roommate wakes up in the night and wants to go to the store. They agree that my mom is a much better roommate because she's immobile. She just lies in bed staring at the ceiling. If she does talk to herself in the night, Sunny can turn up the white noise machine I gave her, say, "Julia, listen to the rain," and Mom obediently closes her eyes and pretends to sleep.

Contaminated

   Staring at old photos of Mom's childhood has heightened my awareness of how much time has passed already, how quickly it is always passing, to the point that at our nephew's christening party potluck on Easter, my mind framed up future old family photos when I looked at other people's kids.

Cousin Junie (?), Aunt Kip (?), Mom (?)

Snap!
   Here's little Katie wearing something on her head: Someday, she will be an old woman.
   Here's little older brother Kevin teetering sideways on one heel while antique ladies inexplicably give him a hard time over asking for an apple: Someday, he will look at this old photo and not recognize himself.

   I am not fit to observe reality any more. There is too much determination in me to make sense of mom's dementia. I am looking for explanations where no explanations are.

 ...

   Mom greeted me yesterday with a brave question: "Are we getting married?"
   One of the nursing home aides is getting married in June, and Mom has become a bit obsessed with her. I didn't know whether she meant "we" as in she and I or we as in me. It might have been either. She's fluid.
   But I went with me as in I and answered, "I'm already married, to Michael Storey."

   She was agog. "You are?!" But then Mom thanked me.
"I learned something I did not know," she said. "So you're married to Michael."

   We had a lovely conversation for more than an hour during which she repeatedly learned that I am married to Michael and was repeatedly grateful to have learned something she had not already known. Michael called my cellphone, and she listened and grinned while he and I were witty back and forth on speaker, as we do, to the exhaustion of everyone around us. And she even read his name aloud off the phone, many times: "Michael Storey." But I am sure she did not gather that the voice joking through the phone was the Michael I had told her I am married to or that I am her daughter.

   She had no idea who I was — and she knew how to behave. She behaved very well. I was talking to a smart little girl.

   If her child self is still contained within her and so well preserved that it reappears now, is child me still inside me someplace? Underneath all the oldness and the duty and the getting by, is young brat me still in here?
  I have put a great deal of effort into outgrowing young brat me. I wonder if Mom put that much effort into outgrowing Little Julie the smart student?

   I know she put a great deal of effort into it, because one of its consequences, pride of intellect, blew up her first marriage — or so she told me a few years ago. But being always a student was a virtue in her, it made her an outward-looking person, resilient during hard times, resourceful, a good problem solver and a most tactful teacher.
   If Mom really has forgotten not wanting to be Smart Little Julie and if that's who she is now, then Smart Little Julie wasn't such a bad little girl. Because today she is sweet. She is polite and sweet.

Selfie

   When I lean over my mom's face, she looks back with such simple readiness to be happy that it hurts to look in her eyes. Are they gray or are they blue, I don't know, because I am backpedaling out of there, unlocking from that gaze as quickly as I can, and telling jokes at her so I can escape before the unfairness of our situation becomes too much. And I don't want to be an adult.

   I want to get out of there, go someplace else, someplace before, some place where I can't see her eyes and so can imagine that she is still my heart's first home.

   Or I can stand there and kid myself that she still is. She might even tell me, "I love you. So. Much." I might even know that she does, until the aides come in and she tells them the same damn thing.

Don't look at yourself

    Last week I took a vacation. NCECA — the National Council on Education for the Ceramic Arts — convened in Kansas City, Mo. More than 6,000 clay teachers, artists, gallery owners and tool sellers and reps from universities and craft schools were there. I roomed with a friend from California.
    Being so surrounded by working clay folks was a total change of setting — landscape and portrait — because (next to exercise, which I pretty much don't do anymore) the daily activity Mom's situation has curtailed most is my clay work. But NCECA leaves no time to mope: the agenda is a cornucopia of overlapping opportunity, and while the crowds are strangers, they feel familiar. They like to chat.
    Friday morning, while trying to decide between a panel on porcelain so fluxed it's translucent at cone 04 or running back to the hotel for ibuprofen so I wouldn't limp in the galleries that night, I joked to a stranger that it would be great to clone myself.

    Later, much later, in the wee hours, I woke up from a dream in which I'd done just that.
    Even for this wordy blog, expecting you to read my entire dream narrative is a bit much. Just know that tiny Celia clones crawled out of my right ear, landed in the sink and grew up at an accelerated rate. And then I hurriedly handed them my spare clothing.
 
    The first revelation of this dream was unexpected: Having the power "to see oursels as ithers see us" is not so fun as finding your least homely angles in a mirror. It was terrible to observe full frame how cute I could be — if only, how like a retired kindergarten teacher, and how much smaller some parts of me are than I imagine and how much larger others are. Also, how obvious my self-absorption is. I did not like it.
    If all of us could see ourselves as others do, progress would grind to a halt.

    But "rise above" is the right motto, and so I diligently attempted to learn something from my clones as they interrupted one another and ostentatiously Did Good Deeds. When one clone bustled out of the room, I followed her.
    How she annoyed me was ... she went around the NCECA convention crowd and buttonholed any kind-eyed women that didn't slip away fast enough. She maneuvered them through a sort of conversational serpentine ramp (like in a slaughterhouse) until the point arrived where she could tell them about her mother.
 
    But her mother was not my mother, the famous dementia victim. Her mother was my mother before I was born, my mother as a little girl.
    Clone me blathered about how she misses that little girl she never met, the baby Julie.

    That's where I was in the dream when I woke up.

   So who was baby Julie?
   I do not know. But thanks to my cousins Sheila McCoy, Ed Walsh Jr. and Dan Lynch, to Mom's writings as an old lady and to things she told me at StoryCorps, I have a vision that goes like this:

My little Mom on Harrison Avenue in Newport, RI, in the 1920s.

 
    Julia Frances Lynch was named for her paternal grandmother, Julia (Clifford) Lynch.
    My mother was 15 months old in August 1925 when her father John Michael, an Irish immigrant naturalized in 1910, was hit and dragged by a Chrysler driven by one Roger B. DiPesa of Brookline, Mass., well into his cups. DiPesa was charged with manslaughter and operating an automobile while intoxicated. John F. Kennedy's uncle Fred was a passenger in that car. There was public outrage for the slaughter of "Johnny" Lynch, a member of the representative council.
    The Newport Mercury reported: "Mr. Lynch had been employed as a collector for the John Hancock Insurance Company for about four years, having been a gardener on the estate of Governor Beeckman previous to that time. He is well known and was very popular throughout the city. He is survived by a widow and four children, as well as by several brothers and sisters."

    Julie Lynch was the youngest of the four. Granny's sister and brother-in-law moved her and her kids into their second floor and attic, and there they lived for 12 years, while Julie played and pouted, developed an affection for hyphens and worked hard on her penmanship.
    Granny did laundry and ironing to support them. Julie was the inconvenient baby, tended by grudging older sisters, her aunt and uncle and nuns in the convent three doors down.

First communion

    Years later, Mom tried to understand Granny in much the way I am trying to understand her now. I found a short story Mom worked on for an old-folks' memoir class (at Shepherd's Center) in which she writes about feeling unwanted and inadequate. She writes about struggling to keep up with her silent mother on the sidewalk, and how fast Granny walked.
     She writes about being envious of other girls whose parents gave them curfews.
     "Children should be seen and not heard," was the rule, but Julie was the cheery littlest baby, and people doted on her. Kind women down the street gave her fancy dolls. Mom was born happy and learned to walk before her family's tragedy: She found it impossible not to look for the bright side.
     But she took any reprimand to heart. She was a fan of not getting into trouble.

     She was not like me. "Little pitchers have big ears" was her cue to leave the room, and she did. She did not listen when she was not supposed to listen.
    Instead, she made good grades.
    In her little-girl diaries, she carefully paid attention to international news. She carefully expressed opinions that matched her teachers' and her elders' opinions.

    Because my niece Song as a baby resembled Mom's baby pictures, I believe my mother was a giggly cutie with a piping voice and musical laugh who became a favorite of the adults because she was just so determined to measure up.
    I believe little Julie was adorable. Even if she wasn't, it's my story to tell now, and I say: She was.

Distressingly superficial

Skin is thin skinned and easily offended.

Two weeks ago at work, my cell phone rang. I do not know how I know to wince when the nursing home calls, but I do. I pull the phone out of my purse and, yes, there's the dreaded ID: "Sandy at Home." (The first nursing home employee whose name I absorbed in October 2014 was Sandy. She almost never is the one calling, but I haven't changed the contact record.) Sandy at Home, whoever she may be, never gives me happy news.
The nurse on the other end said, "She does not have a bedsore. She just has some excoriation, a few little places, and we will treat them with (ointment)."

Excoriation! It's not merely a synonym for harsh criticism. How did I not realize this? I have used the word for decades. It comes from Latin, ex meaning off and corium meaning skin. Excoriation is not just the act of abrading and degrading someone's spirit through blistering criticism as though the spirit were skin, it is also the act of abrading and wearing off actual skin.

Everyone has thin skin, not just my bedridden mother. We have the epidermis, which is thin. Below it lies the dermis, which in a young person is thick, a supportive pad of collagen and elastin; but with age that gradually thins.
My mom's dermis must be just about gone. Her bones are visible all over.

I once got to see down below skin's layers. Son Ben slashed his thigh open on a license plate bolt while playing basketball in the yard. In the emergency room treatment bay, I sat on a chair next to his gurney bed and peered at the wound until he begged the doctor to cover it up so I would stop looking. There was a blue-gray sheath over the thigh muscle, a bubbly yellow thickness, like living styrofoam, then the weepy, rose-colored dermis topped by the pale veneer of external Ben.

Another time I saw a black child right after he'd crashed his bicycle. The sidewalk had scraped some skin off his dark brown shoulder, and the wound was a bubblegum-pink hole. Ben's anatomy was interesting, but that poor child's wound was disturbing. I wish I could unsee it.

A few weeks before my mother-in-law Norma died, I was trying to haul her off her wheelchair to the bathroom when her leg dragged and the aluminum footrest drew an L-shaped cut on her lower shin. I wish I could unsee that as well. And un-do it.
The skin that slit freed was like onionskin. It wept until the day she died.
I used to imagine that when I gave her a glass of water, the leg would weep faster, as though she was a leaky jug. It didn't, but I imagined it did.

The day after we took my mother to the emergency room, Sept. 28, 2014, the intensive care unit nurses asked us how long she'd had her bedsore. Bedsore? My poor sister, who had been Mom's main caregiver, was startled. Living with Beth in her own home, Mom had only just taken to her bed for about a week  (exhausted by atrial fibrillation and water pills). So it didn't seem likely that she could have given herself a bedsore.
But a week is plenty of time to do that.

She might even have developed the sore because we got her an adjustable bed. When someone immobile is lying down and the head of the bed is mechanically elevated, his body might slide down the bed, with his skin dragging on the sheet. Here's a description from Mayo Clinic: "As the tailbone moves down, the skin over the bone may stay in place — essentially pulling in the opposite direction." Shearing force separates skin layers, making the place more susceptible to the damage caused by sustained pressure — the pressure of underlying bone on the skin that flattens capillaries and blocks fluids that bring oxygen and nutrients to skin cells. Eventually they die, creating first a red spot, then a blister, then a lesion, then a deep ulcer.

Months of nursing home care cleared up her bedsore, but the skin remained so fragile it tore open after it had healed.
When the hospice team took over, they put her on an inflating and deflating mattress. I saw one of those in action when we cared for Norma during her last summer, and so I was reassured by that mattress. And for most of 2015, her skin was good. Every so often she'd get a new little tear on a leg or ankle or arm, but Mom heals.
Then last month the mattress controller went nuts, overinflated the bed and ejected her out and onto the floor.
No harm done. But that air mattress went away.
Turns out there is a downside hazard to the inflating mattress. In its place came a foam block with a depression in the middle — like a foam nest.

But then she developed these excoriations.

All that to say this: At our quarterly care team meeting this week, the nurse reported the excoriations are clearing up. The foam pad appears to be working out. But as Mom decays, we should not be surprised if excoriations reoccur.

Just as with the metaphoric, spiritual kind, physical excoriation is not hard to inflict.
A girl in my high school once took the skin off the back of her hand in 20 seconds using a pencil eraser. I don't know whether she was crying out for help, curious or both. Surely it was painful, but yet she did it easily.

Mom isn't doing anything on purpose to excoriate her skin. But that very non-act of not doing anything is precisely how she is doing it. The weight of her body is crushing her skin so that any time she is moved, it abrades.

Ironically, the best way to protect our thin and fragile skin is to roll around on it, to make it move and stretch and knock about. When we lie down on it to die, it dies before we do.