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.

Estate planning

Who are we after we bury our mothers?

Do we attain serenity, finally?
Is it a big-step metabolic passage to equal the revolutions of adolescence, marriage and parenthood?
Does all of our hair fall out overnight?

Do we break into bloom once our dear mothers are gone? Do we "come into our own"?

Or is this the crisis when orphaned older ladies kick over the traces and run off with Habitat for Humanity or Peace Corps?
No, wait. That's what happens after the spouse dies.

There aren't two categories under Bildungsroman. There aren't also coming of age novels devoted to Life After Mom.
No, because we think we know what comes next, and nobody likes to look at it: definite old age. Not just "that age used to be considered old" or "I can't tell how old she is" but, for sure, "that's an old person, right there. That person is too old to have a mother alive on this earth."

That old person is in charge now?
That old person must know some answers?

Or, that old person will soon be a drag on society. Stand up, you clod, and help that old person take a seat on the bus. Get out of the way everybody, old lady coming through. Stand clear of the cane, please.

That old person is regretting the remains of the day. Sad.
Or, he's yearning for love and lurking about the schoolyard. Icky. Or, getting it on like the geezers in The Best Exotic Marigold Hotel or Terms of Endearment. Cute.

Are these the only options — cute, sad, icky, wise?

What about the stylish figure in black stepping lightly to the lip of a cliff, daring and afraid? Here we stand next in line at the edge, uh, woo-hoo?!
What will the world look like above that precipitate drop? Beautiful, wild? Oblivious, distant?

Is the edge of the cliff where we will finally get perspective on how we have spent our little lives so far and all the choices we have made along the way?

Will we finally be able to see exactly who we have been all along?

A Better Place

   When my mother first entered the nursing home and was so obviously dying, my sister and I went to see her every day. For about six months I put an extra 350-500 miles a week on the car, rushing from work to the nursing home, sometimes twice a day, not getting home until after dark every day. 

What Mom sees when she's lying in bed

   Michael felt helpless and lonely, and everything was just hell. I'd wake up weeping, go to sleep weeping, start weeping as soon as I turned off JFK and headed toward Dark Hollow. By Justin Matthews I'd get myself back in hand, by thinking about public safety.
    Never assume the people driving the other cars aren't weeping.

The Pilgrims are on the wall to her right

   
   Since her condition stabilized in March (thank you, palliative care), I visit her just three times a week ... most weeks. Some weeks I only make it twice. Every so often, Michael fills in. My sister or her husband is supposedly coming three other days a week, but they broke down in the stress of everything being hell and started getting respiratory infections. That seems to be clearing up now.
   And my nieces and nephew visit when they can work out transportation. 

   If all these people have anything in common (besides everything we have in common as relatives), it's that none of us wants to visit Mom. We talk about this. Once we get there, she's so cute, we're glad we went. But there's a dread that builds as visiting day rolls around, again and again. Is she going to remember me? Will there be some problem with her clothes — like, will she need more clothes? Is she going to keep asking to go home with us? Will she say only one sentence over and over for an hour or more? Are we going to have to come up with cheery things to say while we crouch in the hallway beside her chair? Will we need to brush her teeth? If we do, will it make her choke?

Loves George but foggy on Abe

   Monday she was asleep in bed with her mouth open, which typically means she won't wake up. But I didn't want to walk in and walk out, so I sat down to knit while she slept. Nobody was around, so also I sang at her quietly. I like sad ballads. She likes "How Much Is That Doggy in the Window." She surfaced during the second verse of "Doggy" and lay there looking pleased and calm, blinking at the ceiling.

 
   "How Much Is That Doggy" was the No. 1 pop tune in the nation the year she met my dad. 

   She didn't seem aware that I was there. But I went on singing and knitting, just enjoying being nearby.
   When the aides came in with the lift to move her from bed to her geri chair for supper, a blonde with  pixie-cut hair and sparkly earrings almost shouted, "Mrs. Loyall?" loudly, gleefully. 
    My immobile mother practically lifted off the bed and exclaimed with delight. "Oh helloooo! Are you married yet?" 
   The aide said no, but her wedding was coming up fast. She went on in a bantering tone about her dress and flowers, and Mom talked back and forth with her a little.

More George Washington

   In the bustle I slipped away, stopping just long enough to give Mom a peck on the forehead.
   
   My heart was so light on the drive home through Dark Hollow. It felt good to remember how eagerly she greeted that pretty young aide.

   She might know her caregivers better than she knows her children now. Maybe she has an easier time remembering them and their details. The aides are with her all day, every day. And they seem to like her, and they obviously like it when she talks to them. 

   She has buddies. 

Brain in a box

   One

   Last week the inflater in Mom's air mattress malfunctioned and blew up so high that she slipped out of bed. 

   Aides found her propped on the floor beside the bed, an upright burrito in her sheets. She kept saying, "I'm so happy. I'm so happy." 

   No new skin tears, no bruises.

   But now she has a different mattress, and one of the aides has crammed a pillow between the bed's half-railing and her mattress, walling her off from the room on her left. 

   She can't see over it when the bed is cranked flat.

   Two

   

   A roving band of church ladies came through, leaving behind a lap-size, overstuffed pillow on Mom's knees. It's a vibrant floral pattern, and the filling is crunchy. It is just fat enough she can't see over it to the room beyond her feet.

   Three

   She was asleep with her mouth open when I arrived Thursday. Roommate Sunny rolled her chair slowly from the restroom, stopping just beyond where I stood frowning down at Mom. I decided to sit down a while, gossip with Sunny.

  Our murmurs rose and fell, and Mom slowly emerged from the depths. I watched her blink at the dim white ceiling, her face otherwise immobile. 

   I spoke her full name. 
   Mom bit her lip. Her forehead wrinkled. 

   I said, "Hi, Mom. It's Celia." 

   She cocked her head, puzzled but thinking. "Celia?" Where was I? What was this place? A box with voices.

   Four

      Someone has painted Mom's nails a Goth midnight blue. 
      She touched the pillow. She poked it. 
      She said, "Hello?"  

Fresh and wholesome

   Judy was facing three-quarters away and leaning into the boxed mushrooms and the bags of greens, so I hesitated to say hello. What if she turned to face me as a total stranger? What then? But Kroger has white lights in its produce department and, whoever the woman was, they were icing the halo of her hair. I thought, "Live a little," and I called out what I hoped really was her name.

   She was exactly who I'd thought, and she remembered me, too, because she'd been a group mentor for the Artist Inc. program I was lucky enough to attend in 2014 — and unlucky enough to be attending in the early weeks after my mother collapsed. Mom appeared to be dying — she was dying, every day. And I was soldiering courageously on.

   We chatted during Artist Inc., but I wasn't in her small group, and the lighting in the building where we met wasn't of the caliber that sells produce. I'd never seen her eyes in good light before. Imagine the Arkansas River after a week of heavy rain. She calls them "brown," but to this potter, they are Salt Celadon Liner in its river-water mood.

   I was enjoying the novelty of looking right into those eyes when she mentioned these blog posts and Facebook and touched my sleeve. She said the words, "My mother ..." and I stiffened all over — but without registering that I had.
   Then came unexpected syntax. I forget the word-for-word, but she wanted to tell me about the difficulties of having a mother who is 91, independent and well — an eccentric person, but not demented.
   Feeling my neck and shoulders suddenly relax, I realized how I'd tensed myself, bracing.

   Almost never do I hear talk about healthy old people any more. Most all the time, when someone touches me on the arm and starts into "My mom" or "My dad," what follows is so heartfelt that I want to console them, to share their pain. Because this is not a joyous situation, having the demented parents. These good caregivers deserve to be comforted; and, yes, there probably is a lot of comfort to be had from being part of a group with a common problem.

  But I wanted to hug Judy to thank her for not being just like me. It was such a relief to be reminded that old people also can be healthy.

   Statistically, most old people are not demented. According to a 2015 report by the Alzheimer's Association, (see https://www.alz.org/facts/downloads/facts_figures_2015.pdf) one-third of Americans older than 85 have Alzheimer's disease.
   That means two-thirds DON'T.
 
   Most old people do not have dementia.

   Also, besides hugging her, I should apologize to her for not hearing the story she wanted to share about the problems of caring about an elder who is still independent. My self-awareness of relief got in the way of being able to listen to what, for me, seemed a novel concern but what in reality is more like what's reality for most people.