The Measure of a Mother’s Time

 

 

 

 

The Measure of a Mother’s Time
I pause outside of “Ruth’s” door. The sun is cutting through her window shades, engraving lines of lights across her already stern face.
“Ruth” sits in a wheelchair now. When I first met “Ruth” she had been walking, though with a wobble.  Then, she transitioned to a walker. And now, a wheelchair, and not the comfortable kind.
The condition of the residents here is how I measure my mother’s time.
The ones that have left. Rosemary, who passed way. Peyton with her dog, whose family transitioned her elsewhere.
Those still here whom I wish the universe would offer a little more grace and take swiftly.
Families that come and go. The families that never come at all. The loved ones that hardly ever leave.
This is how I count days with my mother at her care come, over these past three years.

My time slows once inside her residence, as I easily adapt to a different stride.  Between the gaps in activity, I observe how my mother’s hairline closely resembles mine. We share cowlicks and thinness.  I count the ways in which we are similar, ways in which I never would have admitted to, as a young woman in my twenties. But my mother’s old age, and mine, has given me this gift to declare.

I grasp at her hands and note her slender her fingers, long nails she used to shape and polish before her night out on Saturdays with my father. Her extremities are unlike mine. I add up the ways in which we differ, and there were so many I used to bragged about in our past.
There have been days of endless wondering about my mother’s condition and countless taunts from her about my hair or shoes. There have been multitudes of moments we celebrated (fresh peace juice dripping down her chin). There have been a sequence of small stuff that I sweated, waiting, for her, or me, to change.
I have whispered incalculable confessions: Mom, you were right. Wearing a V-neck shirt makes you appear thinner and taller.  Still water runs deep.  The best way to pick a husband is to watch how he treats his mother. And battled with her on a few other fronts. Mom, spit that out, its chicken grease.Mom, running track was not going to make my thighs thicker, they were going to be thicker anyhow.  See photos of your own mother for proof.  
I have heard my mother tell another resident, who had been cursed with an endless blank stare, “Now don’t you start that with me,” and have had to scurry Mom away in a another direction before the woman could pull at Mom’s finger. I have smiled at Mom’s simple acts of beauty, as she caresses the face of another resident with gray, tired eyes.
I have survived tornado and fire drills amidst 12 women plus caregivers, with obstacles such as wheelchairs and walkers squeezed in the laundry or shower rooms, explaining over and again why so many of us were crammed into a tiny space. “When you were younger in school, your school always had fire drills. This is like that.”  “Oh,” they sigh, with slight reminiscence. Then they ask, “why are we here,” once more.
I count the caregivers that have come and stayed. They have been the dedicated majority.  Each one adores Mom’s smile. She will casually smooth her hand across their brown or tanned arms and repeat back whatever phrase they have uttered to her.  “Jean, the Bean,” they say.  “Jean, the Bean,” she says back. It’s a melodic call and response.
I tally up how babies can make her day, either prodigy of visitors or residents, but especially Prince George and Princess Charlotte, who grace the cover of every other People magazine I carry in for Mom to read.  I tally up too, the other People magazine covers, as a way to measure time, Pope Francis, Leslie Gore, B.B. King, Omar Sharif.
I rely on the fact Mom still mentions the silver vent hood atop the roof, and stops to admire the pink and green beech tree.  She is want to point out each garden stone with pebbled glass missing, assigning the stone a number, then counts ones that are not present.
We have moved on from listening to strictly Sinatra. With so many music apps on my iPhone, I can mix up the playlist to include Nina Simone or Dean Martin, Bette littler or Louie Prima, and keep track of the names that cause her to respond.
Mom wants to be held more. She grabs on to me longer when we hug. I count her hugs, and the number of seconds in which they last – all day if I let them. She nestles her face into the crook of my neck, appreciating the sense of closeness. A feeling that is three years gone for her.  Sometimes, she still pats me on the back or backside, like she did when I was five.   
Recently, the nurse noted Mom needed an annual check-up with a doctor.  I decided to switch to the in-house doctor at that point, to reduce the challenge of moving Mom from point A to point B when seeing her original doctor, Dr. Graff.
The in-house doctor phoned one day to jot down Mom’s medical history.  “About how long ago did she develop dementia,” he inquired.
Her timeline eludes me. I used to recite actual dates and times for when I noticed the occurrences. When did I know? When she balked at changing clothes, taking a bath or listening.
I gave him a generic answer. “About five years ago.”

But I have relinquished any formal answer to Mom’s calendar, the one where she dutifully kept religions holidays, birthdays and anniversaries of loved ones living and deceased, hair and dental appointments for five kids. She didn’t need Google Calendar, then or now. Her life is no longer measured in time slots or a stretch of days, but in human interactions.

I have spent more time with her these past three years, than in some entire decades of my younger years. And yet, it’s hard to imagine, I still have days where I depart from Mom’s care home in tears, usually because our day together was near-magical, or that she wanted to hold tight and not let go.  She has been a near-perfect muse, and I have only gratitude for the immeasurable amount of words it has taken to capture her essence.
A week ago, I received a call from Mom’s care home. “Your mom had another seizure.”
“I’ll be right in.”
So, throughout the week, along with nurses and staff, I waited and counted and forced her to drink water or Gatorade or anything. She was also diagnosed with a UTI, and in the midst of X-rays due to complaints about her back, the radiologist discovered some arthritis in her back.
We managed to keep her out of the hospital, and she responded slowly, her gait unsteadied and present mind still obscured.
But her recent situation challenged me back into the space of unknowing. If death had slipped from the subtle grasp of life Mom held on to, I would have sent her off with my blessing. She was already filled with peace, nothing left to add.
Until today, when an arrow traveled through my heart as she pushed a strand of hair behind my ear while I hugged her.  Count one more day I wanted her back.

 

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“Don’t let them put Mom in skilled care!”

Transitioning Loved Ones Experiencing Dementia
Emails downloaded while my legs wobbled. I had just climbed a mountain – and descended one.  A 14,000 ft. mountain, Mt. Kinabalu, in Kota Kinabalu.  We returned to our hotel, and a spate of emails and texts dinged during our first brush back with the Internets and reality.
The first email I read was from my sister, Beth. I had tasked her with overseeing Mom’s care. She was also the executor of my estate, should anything happen to me, in particular, while I would have been, say, climbing a mountain.
Before leaving, I had snapped a photo of my office closet, where I kept family files, and sent the pictures to her. “Here is where Mom’s files are,” I wrote in one text caption.  “These are my personal files.” I wrote for another.
She laughed at the time. I did too, recalling how she had toted my purple folder with all my father’s medical information, the last time I traveled overseas to Ireland. My father had never recovered from a nasty winter tumble, and spent his June and July in and out of the hospital and rehab. Thus, when I had left for Ireland, he was out. While I was in Cliffs of Mohr, he had gone back in.
The irony of me leaving again had not been lost on either of us.
May 23, 11:07 p.m. Cincinnati time, May 24 11 a.m. Malaysia time was the date stamp. It was now six hours later than when Beth’s email was sent.
“Hi all. Hope you’re having a good weekend. Just wanted to take a moment to update you on a few things.”
“Mom had a seizure and is at ER.  This JUST happened so details are sketchy.  I am on my way to XX Hospital and can provide more of an update once I know more.”  
I panicked and desperately wrote back, not knowing how far behind the time (or ahead of it) I was.
Oh wow. Just now reading this. As we were on a mountain climb for a few days.”
“Is Mom OK? I can’t believe this happened while I was gone.” 
I thought back to the mountain climb earlier that morning. I had been awake since 2 a.m., trudging up sheared rocks by 3 a.m., near to the peak at five a.m.  I was whispering to the wind at that time, while also cussing at my daughter, Shannon, for getting us into this, and at my husband, who moved nimbly ahead of me, then would sit to wait. Move, then wait, instead of climbing lockstep with his beloved side by side. I quickly learned who was my parnter in the race to the sunrise. 
Beneath my scant breath had been a prayer to return to Mom.  Sure, she was 87. But that didn’t mean I wouldn’t have wanted to spend any last days with her. It is a constant fear I have now. That I’ll miss her passing away from me, two travelers on opposite bound trains.
Emails and replies went back and forth throughout the week, until I received this one. “Mom is fine, just fighting a fever now.”
I had been battling against wanting to flee back to the states, when I learned my sister was fighting another battle.
“Mom is fine, almost ready to go, but the hospital wants her to go to rehab.”
What? No. They can’t. They can’t do that. Don’t let them.  I was spewing words before even typing them. Didn’t they know, someone with dementia cannot just be moved around like pieces on a chessboard?
No, they didn’t.
“Who is they?”
“The doctors and social worker.”
I was baffled and aggravated by doctors and social workers who, employed by a hospital directly across the street from two long term care homes specializing in memory care, didn’t understand the consequences of moving Mom to rehab before returning her to her care home if it was unnecessary.  The hospital was always willing to take in elderly patients, most likely to pay for their new wing, but not willing to expend the time, energy and money to train staff properly, on the challenges of transitioning someone with dementia.
While sometimes, the decision to transition a patient to skilled nursing/rehab is logical, in particular when a physical disability, such a broken bone is in play, there is no excuse for social workers and doctors who deny the rights and wishes of not only the patient and family, but in this case, the staff from Mom’s care home.  How brazen, how arrogant, how utterly ridiculous, to protect the hospital’s readmission rate, they simply shuffled patients like a deck of cards, and moved them to the next pile. A magical disappearing act.
We should be way ahead of this curve by now, with all we know about dementia. Hospitals treating the elderly should have passed this curve years ago, and if not, then they shouldn’t be receiving reimbursements for Medicare.
Families should take heed to fight like hell, enlist the help of the care home staff, to keep a loved one in their most recent environment after a hospital stay. My mom, I was told, was crabby at times, fending off PT.  She had strangers telling her what to eat and when, peeking under her dressing gown.  I would have been crabby too.
Eventually, the hospital relented, but only after constant intervention by the staff at Mom’s care home. I was so grateful Beth had the strength to battle in the same vein I would have, with mettle and might. And I was grateful Arden Courts had lobbied on Mom’s behalf, for her to return where she was known and loved.
I returned to the states safely. Mom returned to Arden Courts safely.  Both of us on the same day, technically, depending on time zones.
I committed to visiting Mom every day for a week, to gauge her recovery, to remind myself of what I had almost missed. Mom returned home on a Tuesday, and I found her Wednesday morning, sleepy, but smiling.  I sat, and played a few Sinatra songs for her, her eyes opening and closing whenever the beat was too loud or when she knew the refrain.
The resident supervisor came into the room and together we sat on Mom’s bed, got her to drink a little Gatorade and discussed Mom’s condition, and her new meds. 
“I went over there after I got off work, and told them, they should return your Mom to Arden.”
Even the activities director later confessed, “I was insistent your mom come back to her home.”
The compassionate, wise staff of Mom’s care home were all in, why wasn’t the hospital?
For each day onwards, caregivers continued to track me down, telling me how delighted they were to have Mom back, how relieved that she hadn’t been placed in skilled nursing care.
And each day, she moved and wobbled and ate, until finally, she was initiating movement into the courtyard to soak up the sun.  At day’s end, I would share with my husband, “Mom is so good. Either she is getting some great meds, or she is just happy to be home.”
I did research the new medication Mom had been prescribed, and discovered in some instances, the drug actually slowed down dementia or Alzheimer’s disease.
But her recovery had come so quickly, more so in being surrounded by familiar faces and objects, recognizable words posted on signs, “Pull door until alarm sounds.” and “Mechanical” and “Arden Courts News Center.”
One day, Mom and I performed our standard routine, when helping her out of a chair. “Mom, let’s get up, ready? Uno, due, tre.”
We repeated together, “Uno, due, tre.”
She rose up, unsteady, then gradually fell into my arms.  I held her for so long, this little woman of so much strength and resilience. She buried her face in my neck and patted my back, as if, as if we had been young again, both of us.
When I finally pulled back, tears pooled in my eyes. “I thought I was going to lose you, Mom.”
She looked at me strange, ran her hand along my cheek, swiped my tears onto her black, polyester pants, and said, “I love you, too.”
Mom heard only what she wanted to hear. She was back.

Revenge at the Hair Salon

Where is revenge best served, when it involves your mother, and she has dementia?

At the hair salon.

For years, my mother visited the beauty salon in Amherst to “get her hair done.”  Occasionally, she even toted five kids when tired of giving the home perm or snip of the bangs.
Mom, like every woman, had always been concerned about her hair. She hadn’t inherited the long, flowing black locks of many Italian beauties. Her hair was brown, I think.  Her strands were thin and straight, I think.  She pursued salon treatments and home solutions so often, I don’t have an exact recollection of her official hair color and style.
Many times, she descended to the bathroom in the basement, where wafts of coloring dye and perm solution rose up from the steps.  She appeared hours later, her hair sporting a color different or shape from when she had descended.
If Mom arrived home from the salon, and one of us gave her a compliment, she was quick to note, “Oh, the curls are too tight.” Or, “Its too dark a shade of brown.”  If the weather was rainy, Mom covered her head in a black or red or gray nylon scarf and asked my father to drop her at the door.  Dad complained, but always obliged.
When I hear, “Oh, my hair,” I can still conjure up Mom’s voice in my head.
Hair was a consistent topic of conversation in our household, in particular when there were four girls fighting over the bathroom mirror.  In our second family home, the kid’s bath was strategically designed for two mirrors, hence cutting in half the time the bathroom would be occupied by a girl. The intent was solid. The strategy failed.  However, my mother did succeed in keeping us out of her bathroom and away from her mirror.
Mom’s hair gradually turned towards lighter shades of gray, interspersed with threads of white.  When dementia finally took charge of her mind, she no longer took charge of her hair. Days went by before she washed her hair. Or, her hair remained matted in place with Adorn hairspray, which I thought had no longer been manufactured, but perhaps my father had found a stash on the back shelves of Drug Mart.

Mom, in her dementia, still makes comments about hair. Only now, they are directed at my coif and me. Mom’s statements are usually derisive, but she is only returning the favor of oh so long ago, when one of her children taunted about her changing hair color and style to match the times and her moods.
In Mom’s care home, a wonderful woman named Carol arrives twice weekly, to wash, cut, color, curl the thinning, fading hair of the residents, mostly women.  However, Carol’s challenge is somewhat different than her former days as a stylist. Her clients now abhor the water.  When once, women might have tilted their hair and sighed at the rush of warm water running through their scalps, now these residents fear water, as a baby might, forgetful, or unknowing of its power to cleanse and heal.
Once a month, I ask caregivers to ensure Mom “gets her hair done.”  I usually call in my request on a Monday or Tuesday, after visiting with Mom on a Sunday and noting her needs.  Last Sunday, I was out of town. So, I visited with Mom on Tuesday, and asked for the favor.  The caregiver on duty said Carol would fit Mom in that day.
Mom and I decided to stroll the corridors and check out what was happening in the community room. We came upon Carol waiting outside of her salon with her list of appointments.  She suggested taking Mom then.  Heavy sigh.  I had hoped to skip that portion of my visit with full knowledge of Mom’s distaste for the exercise she once considered a luxury.
I directed Mom into the salon chair with assistance from another staff member.  When we attempted to release the chair back, Mom’s shrieking began. 
“No, don’t do that to me!”
“Its Ok, Mom, just hold my hand.”  But she yanked her hand away from mine.
“Now, just wait a minute,” she kept screaming. 
At once, caregivers from down the hall came running to the salon.  “I knew it was our Jeanie Beanie,” a few of them noted, using one of her many nicknames given to her lovingly.
I sat back as caregiver after staff member encouraged Mom to lean back in the chair.
Mom repeatedly shifted from happy to frustrated state, calling out, “No. You’re not going to the do that to me.” And pointed her finger, her mighty, mighty index finger at – me. Yes, this was once again my fault.
Mom yelled like a little child with water dripping down her eyes, as if Johnson’s Baby Shampoo had never invented the slogan, No more tears. 
Carol stood in the background. “I’m sure happy you’re here today, she usually gets mad at me.”
And I was thinking, This is the last place I want to be.
Carol and I eventually gave up on the notion of running water through Mom’s hair. Carol would have to perform her duties the old-fashioned way, by hand. We raised the chair back up and Mom appeared content.
I reached out to hold her hand. “Well, Mom, this is revenge for when you scrubbed our scalp and held our heads over the stationary sink, you know, pouring hot water from the measuring cup.” 
Plus, I always thought Mom had over-applied Tame conditioner to my hair, but I left the past in the past.
Mom began to laugh, a high-pitched laugh and the remaining staff and caregivers moved on. Soon, H., another resident came along. H. loved Etta James. Carol and I both encouraged H. to sing At Last, which in turn, motivated Mom to sing.
We all began listening to a little Frank Sinatra, Carol amazed by how his voice, the words calmed Mom. 
Mom sat patient, while the stylist and I had frank discussions around music and how more of it should be brought into the lives of the residents. She listened along, adding her two cents. “That’s right.” Or “How bout that?” 
Mom belted out a few phrases, always completing the last lines of the song. I glanced away from Carol and back to Mom, imagining her as a thirty-year-old Italian beauty, dancing in Cedar Point’s Grand Ballroom, waiting to meet a man while Tommy Dorsey’s band played.
Carol put the finishing touches on Mom’s hair using a little aerosol hairspray – for old times sake.  Mom squealed again and grabbed a towel to hold over her eyes, smashing the front portion of her styled locks.
The activities director offered to take a photo but Mom was restless as my dog when it came to pictures. She never liked having her photo taken.
“Oh, what are you doing with that damn thing,” she stated, grabbing at my smartphone.
“Remembering how beautiful you are,” I said, smiling.

She pushed me aside and walked on.

Ah, Mom could still exact revenge over me, any day.

Baby Doll

“Hello, baby,” Mom said, with a broad smile and wide eyes that had surprisingly become part of her character as of late.
The words, the phrasing, the inflection all reminded me of Mom’s sweet tone she used while cooing to the grandchildren when they were little.  How she would scoop them up into her arms, toned from years of ravioli rolling, and nestle them into the crook between her collarbone and cheek.
When our son Davis was born, Mom, or “Nanna,” rocked him to sleep many afternoons, as he was somewhat of a fussy baby.  He eventually grew to sleep even in cars, when not behind the wheel. Observing Mom as I entered into her living space, I recalled how she used to call Davis, her little snuggler (Sorry, Davis).
Standing over her now, I realized, she wasn’t talking to me. She was speaking to the baby doll resting in her arms. A plastic baby doll. No, her behavior was not bizarre. In fact, it was quite normal.
“Put something meaningful in the person’s hands,” wrote the authors of You Say Goodbye, We Say Hello. TheMontesorri Method for Positive Dementia Care, Tom and Karen Brenner.
About a year ago, a companion caregiver who visited Mom regularly, and treated Mom like her own, hit upon the idea to gift Mom the doll.  The doll was wearing more clothes then than she had on now. But the doll’s frilly pink dress and blue eyes enticed Mom, who, every once in while even slept with the doll.
Occasionally, I brought in People magazines for us to read, because of their large print. But also, the cover sometimes featured a celebrity who had given birth, along with the new baby. “Oh, there, that one. Isn’t he something,” Mom said about Prince George.  
Recently, there had been a cover picturing Christine Aguilera, with her daughter Summer Rain. While Mom was not pleased with the name, she adored the baby wearing a tight pink hat and sporting startling blue eyes.
Sometimes, with my iPad and Mom seated at my side, I search Google Images, using the term baby. Mom is so taken by the plethora of images, she is overwhelmed and speechless.  She giggles and can’t seem to settle on which one was her favorite.
But, when I heard Mom say, “Hello, baby,” for a split second, I thought she was directing her helloat me.  Instead, she was swinging the baby doll back and forth, as she rocked in the “maternity rocker,” and peering into the doll’s eyes, saying, “Hello, baby.”
Often, when the baby doll is in her arms, other residents stop and ask, “Boy or girl?”  “Can I hold her?”  “What’s his or her name?”  They tower over Mom with jealousy and wistfulness.
Mom doesn’t typically respond, but I do. “It’s a girl.”  Or, “About three months.” Or “Would you like to hold her?”
“How lucky,” Mary Lou responds.  “Isn’t that something,” Big Jim says.
The doll didn’t come with tag stating her name. I’m not certain a name would have stuck. Her name is Baby Doll, and that works for Mom. Occasionally, Baby Doll has gone missing.  Meaning, one of the other residents has taken off with the doll.  Sometimes, the staff has to put out an APB for Mom’s doll.
Put something meaningful in a person’s hands, I harken back to. Sometimes its coffee, or a snack, which is how I learned to not complain about Mom’s eating, unless it’s the whole hunk of brie she once tried to consume at Christmas. Eating is a meaningful act.
In their stories, the authors included other meaningful items, such as baseballs, violins, trains, pipes and wrenches (for a former plumber). When Mom visits my house, I put a wooden spoon in her hand. She still loves to stir a good pot of sauce. And despite the lack of babies in our family (no rush, kids), she still loves good hugs. If no one else is around, the baby doll is a fair substitute as her little snuggler.
A mother never forgets how to love. And she never forgets how to love a baby, even when the baby is a forty-nine year old daughter resting on her shoulder, asking the big questions about life.
She will wrap her free hand around my cheek. “Well, there. Its there,” she’ll respond, and hold up her baby doll.
You Say Goodbye, We Say Hello. The Montesorri Method for Positive Dementia Care, Tom and Karen Brenner.  Read more here….

Buon Compleanno Vincenzella

Today, my mother, Vincenzella Jean Giuliani Januzzi, turns 87. She no longer lives at home, though I call where she lives her “care home”, but the blessings of these past years, when she has lived in a state of forgetting (who doesn’t), are countless.

She will dance and sing to Hey Mambo, Mambo Italiano with the best of Italian accents. She no longer speaks from her mind, but from her heart. She forgets how to be sad, though sometimes she can become VERY angry, mostly at someone telling her what to do. She hugs more, and shrugs less. And has yet to meet a cookie she hasn’t devoured.

As of late, for whatever reason, even the center’s chaplain has noticed a lightness in Mom’s demeanor.  He asked me one day, What did I attribute her change to?  And all I can imagine is that, in the midst of all her letting go’s, she is becoming closer to the perfect state of being, that is, of being human.

To be in her presence during these times is an awe-inspiring event, such that I am often brought to tears for no particular reason. She and I exist in this state between my grief, and her pulling towards home.

My mother was named after her birth father, Vincenzo, who lost a battle to meningitis before he met his little girl.  Some of Mom’s official documents note that her birth name was Vincenzella, and not Vincenza, as originally thought.  This came to light a few times over the decades, as she pursued a passport for our trip to Italy.  As I went back and read through many of her personal papers, including high school reunion programs, I immediately sympathized with her, and the fact society continued to rebrand her first and last name constantly.  Misspellings abound.

Ironically, when I call her Vincenzella, she repeats the name so fluently, it is like song coming from her heart.

 

And so I return to the chaplain’s comments, and my conclusion. Perhaps Mom is arriving closer to her birth name of Vincenzella, and thus, nearer to her state of perfect being.

A Scuffle with My Mother – And a Poem

A Scuffle with My Mother

Yesterday, I got into a fight with my eighty-six year old mother.  You ask how is this possible and I say, its completely so.

I had an hour between meetings near her care home and the sun was a glorious golden orange for the afternoon. My mother loves the sun, and in my heart, I know it helps lighten her attitude.

I found her exiting her room, following lunch and a clothing change by one of the caregivers.  As she approached me, we exchanged hello’s, she with faint recognition of me. Since she was already making forward progress, and she gets easily distracted, I immediately coaxed her towards the door to the courtyard.
“Let’s go outside, Mom.”
“Why?”
“Why? To get some sun?”
“But I don’t want to get sun.”
“But you love the sun.”
“No, I don’t.”
Exasperated, but determined, I knew her time in the sun was waning, as colder weather approached and she tended not to venture outdoors at the slightest chill, not understanding she simply needed a coat or sweater.
She grabbed my pinky finger and began to twist it around. Her face curled up in snarl.
“Ow. Mom that hurt.”  I scolded her.
“Well. Well,” she replied with little knowledge of the pain she had inflicted – and why.
“Oh, Mom. I know you hate me telling you what to do, but just trust me.”
And suddenly, her eyes brightened.  “Yes,” she answered. She followed me obediently towards the door, though it wasn’t clear which she was responding yes to, my bossiness towards her or her trust in me.
I maneuvered around her body, as she still had my hand in a death grip, to lead her to a chair in the sunshine. She no sooner sat down, relieved, closed her eyes and muttered, “Oh. That sun today is something else.”
Yes, it was something else. She was something else. For between those moments of loving each other, we both fought for control, we were both something else.
An hour later, I left her seated on the chair, snoozing with glass of strawberry Gatorade in hand, wondering if she would spill it on herself when she woke.  I didn’t care. I will lose this war with her dementia, but at least for the day, I won a small skirmish. She, in the glorious sun, won a little battle too.
This piece was inspired by the declining number of days in which I know Mom will be able to sit outside at peace.
Opus Dei
Her head drops
amidst the blue screen of sky,
as if her crown has landed
on a white pillow of down.
Eyelids closed,
she is the picture of infant innocence
even past eighty-six.
God has painted her as art today,
a stained glass creation.
Close up, diamonds of skin
are flushed in flesh.
Her lips have been brushed with a faint rose.
Her ears softly fold over pixie-cut
gray hair. Brown lashes and brows –
near invisible lines –
He has deftly touched
to define what she can still see.
Occasionally, His masterpiece
wakes to the chirp of a bird
then returns to slumber in sun,
his final touches glazed in bronze.
She will never be more beautiful
than in this
moment of mastery,
subject of the maker’s brush.

Alive Inside: The Movie and My Mother

Musis is…truth (Kerouac), magic (Rowling), the existence of God (Vonnegut), the food of love (Shakespeare).  Music is the self still alive, as evidenced in the documentary Alive InsideAlive Inside is the story of a social worker, Dan, who uses music via personal music players, to awaken the inner lives of those afflicted with dementia or other diseases whose existence is limited to a nursing home or long-term care.

From our earliest beginnings, scientists have discovered patterns in a baby’s cries which mimic those of a mother’s voice. The power to imitate, to repeat, to be moved. That is music.

I have spent hours with my mother, seated at her side in her care home, where the strains of Tommy Dorsey, Billy Holliday, and her beloved Frank Sinatra float between us. I can say with certainty, a surreal recognition glides over her face, whether she is at rest, in the sun, or in bed, recognition far more powerful than recognition of my face, or that of my father in their wedding picture. It is a recognition of self. 
When Dan interviews one of his clients and asks, “What is it you don’t remember, or would like to remember,” she replies, “Who I was, after I was a young girl.” Dementia, Alzheimer’s, old age takes many back to the far reaches of youth’s shore, but there are lost years that cannot be accessed by a photograph, a spoken memory, even a daughter.
As outsiders, we don’t know which years are the lost ones. But we can rule some out, speculate about others, and use music to zero in on a few.
Were I to develop some kind of dementia, and my spouse or children planned to place a music player to my ears, they for certain would know to play The Boss, right?
But would they know to play ZZ Top, who I saw in concert in college, with my ultra-conservative roommate Janice, and we played air guitars to Sharp-Dressed Man, or would they play Robert Palmer, for when my sister and I dressed as the Palmer girls one Halloween during my first year living in Cincinnati?  Would they select Joshua Kadison’s Beautiful in My Eyes, from my first wedding, The Servant Song, from my second?  Would they know, when Seger’s Against the Wind plays, the song conjures up memories of high school track, and from then on, every life challenge I ever met and surmounted?
Or would they play Sinatra, as homage to my mother, and the times she and I journeyed together and separate, seated in the sunshine on worn wooden benches, each of us lost in a world our minds created?
Dan, the social worker has a worthy goal for his Music and Memory program, placing personal music players inside 16,000 nursing homes across the U.S.  I don’t know if this goal also includes long-term care centers such as my mother’s. And there are plenty of logistical challenges to this, yet centers across the U.S. are implementing this program every week.
A few weeks ago, I told the activities director at Arden Courts, Becky, and the corporate nursing director, Jesse, about Alive Inside.  I had been an early Kickstarter funder for the movie, despite receiving no scrolling credits at the end.  But I invested because I believed in its mission. I had witnessed it firsthand.  I cheered when the movie was accepted at Sundance, and said, “Of course,” when Alive Inside won the Audience Award.  I badgered the producers, When will you come to Cincinnati,because the movie had been out since July and only now, has it appeared in a local theatre. Columbus got the screening before Cincinnati did.
Becky is now looking closely at the program, seeking funding and discerning training methods.  Offering to assist in these efforts, I have spurred her on. After all, Becky is the person who approached me, about bringing Matt Snow, Cincinnati’s Sinatra, to Arden Courts for my mother’s birthday, while throwing a Spaghetti Dinner party for residents.
I am a bit young, by demographics, to be the daughter of a woman of near 87.  Many family visitors are ten to fifteen years older, and have not been exposed to technology that can make an impact in the life of someone with dementia.
Even if Becky does not succeed in implementing the program, the next generation of family caregivers, those in my age bracket who can maximize technology and whose parents are approaching the age in which they might not access music on their own, will stimulate continued development of programs like Music and Memory.
In ten years, Dan’s personal work will still continue to inspire the likes of me, as I sit, grounded with my mother, and select just the right song for her.  She has a CD player at her bedside, and one of my favorite past times, when she doesn’t feel like rising from bed, is to play Louis Prima because he tosses Italian phrases into his music that she repeats, and understands. Another unrealized benefit to music is that music in a foreign language reawakens another part of the mind, in particular for my mother when her parents spoke Italian. I’ll also play a little Mario Lanza, just to throw her a curve. She laughs when I sway at her bedside, and some days, she will join me. It is the sweetest of times.  
I have specific playlists for Mom, and make unwise use of Pandora, which is why I have more data usage than the rest of the family. I load up YouTube videos showing Frank actually singing with the Rat Pack, or with just Dean Martin, and a drink in hand. When Mom visits our home, Mark cues up Sinatra on our sound system so that “Frank” is playing before she walks in the door, and she knows is she in a home that embraces who she is.
I can’t make my mother’s life perfect, and despite her best efforts to do so when we were younger, it never was.  Sometimes, I neglect to make an appointment for her haircut.  She has gone without matching socks for a few weeks, because I forget until I arrive, then am too tired when I leave to go shopping and return.  She doesn’t drink purple Gatorade, “tastes funny,” but I show up with wrong color anyhow.
But the days we dance and sing and she nods to strains of Sinatra are the best days, when I leave weeping and beaming. Tears because I am so desperate to know that person in her lost years. Smiles because in some small way my mother has found, or recognized, herself as being whole in those moments of music.
When the movie was over, I walked out, and the only words out of my mouth were, “Well, at least I didn’t cry for all 78 minutes.” 
The stories were heartwarming and heartbreaking, but I cried only with joy. The one small gift I can my mother over and over, is the gift of song, when my mother’s physical welfare takes a back seat to the well-being of her soul.

The Longest Day – Why Not Be Idle?

Social media has been abuzz with The Longest Day Campaign, sponsored by the Alzherimer Association, in conjunction with June’s National Alzheimer’s Awareness Month.
“On The Longest Day, teams around the world come together to honor the strength, passion and endurance of those facing Alzheimer’s with a day of activity. Held on the summer solstice, June 21, 2014, this event calls on participants to raise funds and awareness to advance the efforts of the Alzheimer’s Association.” – Alz website.
One participates by selecting a hobby or activity that one loves, or the hobby of someone who suffers from dementia or Alzheimer’s and encourage others to join in the fundraising. Then to celebrate at day’s end.
One of the concepts of The Longest Day stems from the notion that when you are with someone with dementia, an hour can feel like the longest day. When you are caring for them, feeding them, or simply sitting side by side with that person, time slows to a crawl.
And while the day promotes a day of activity to honor the endurance of those with the disease, I advocate a time of sitting still.
My mother suffers from dementia. When I visit her, I often refer to my time as an “A day” or “B day.” The term comes from my son’s high school schedule. His best days were often “B days,” shorter, more creative classes and teachers, more breaks. The “A days” were longer, with more grueling courses.
So if Mom is having an A day, it is a time filled with anger, angst, anxiety, aggravation, and anything in between.  If she is having a B day, she is boisterous, beguiling and beautiful.
I tell this to my friend T, whose sister suffered from a stroke and dementia. “You never know what you’re gonna get, when you show up to visit,” she agrees.
“Its true. You don’t know when you set foot in the door, if its an A day or B day.  And they sometimes alternate within the duration of one visit.”
On the days when I say to Mom, “Lets go for a walk,” she will ask, “Why?” and refuse. Then, I might suggest the same minutes later and she will rise.
But many times, she doesn’t want me telling her what to do. She has caregivers for that, and they actually leave her alone more often than I do. She wants me to sit. To hold her hand. To look her in the eye.
And to do so takes not a day’s worth of activity, but a moment of intention. Of setting aside the phones and emails, and what you think your mother needs. A moment of stillness.
Recently, in our conscious feminine leadership gathering, we discussed the notion of idleness, and one participant Phebe noted she often acted as if she were talking to her dog, when she reminded herself to be still. “Phebe, sit,” she would mutter to herself.
Idleness is not a sport we as a culture excel in. It is also something that we cannot raise funds for.  But it is a key aspect when raising awareness about dementia/Alzheimer’s.  Because when we are idle, we see the little moments. We see around the edges of the person in front of us. We see all of them, not the person they used to be.
I recently brought my mother to visit at my new house. After lunch and some time in the courtyard, I escorted her to the car, so I could drive her back to her care home.
As we sat at a red light, beyond the intersection rose a billboard for Three Olives Vodka, with a photo of Clive Owen as pitchman.  It was a long light, and as I turned to check on Mom, she was smiling back at the photograph.
“Mom, what is it you’re smiling about?  What are you seeing?”
 “He has a lot of light around him,” she said, pointing to rugged face emanating from off the billboard.
“Light? What?”  I didn’t get it, but she kept grinning ear to ear.  I just wasn’t sure what she meant by it. Even as I turned the car in the opposite direction, she craned her neck to get one last glimpse of Clive.
Now, I too, find Clive attractive in a British sort of way. But he in no way resembles any of those blue eyed handsome devils that Mom is famous for stalking, whether she knows that person or not.  He doesn’t even have blue eyes. His eyes are green, which might be somewhat difficult to distinguish in the billboard.
While I saw only dimness in the ad, she saw the light around the edges of his face.
The moment passed, and Mom began reading green highway signs once more. But my mother still saw light in something as simple as an advertisement, and I need to be mindful enough to honor that.
I will probably visit my mom tomorrow.  I will probably give her a few instructions that she may or may not have wanted to hear. I might comb over her hair and cause her some aggravation. I might hug her, and ask if she will hug me back.
But the best awareness I can raise is through my own consciousness.  Afterall, a wise boater once told me, and reminds me often, “Idle moves the boat forward.”  And in the slippery waters of dementia, that seems like the best course of action.
Author’s note: Remember Alzheimer’s is just one form of dementia and not the other way around.  View this page and you will see from a marketing standpoint, that dementia and Alzheimer’s are used interchangeably, mostly for the benefit of convenience or branding. http://act.alz.org/site/TR?fr_id=5860&pg=informational&sid=18343. Of course, this is another issue for another time.

With or Without Caffeine

I am almost tiptoeing down Mom’s hallway this morning, the silence overwhelming.  Is everyone napping?  In their rooms?  In activities, though the room looked empty upon first inspection.
I come upon Mom, seated in her regular vinyl chair, in the far corner of the TV room.  Six other women are present in the room, some snoozing, others watching The Andy Griffiths show, one whistling along.
“There she is,” my mother greets me. This is her standard phrase when she first notices me coming towards her.
“Well, hi Mom, how are you?”
She repeats after me a lot.  “How are you?” then quickly segues to her, “well its right there.”  She points to the vacant magazine rack, no running commentary, she simply wants me to know it exists, and that she has questions about why it sits empty.
We nuzzle for hugs, and she tugs at my fleece.  “Hey, I like that.”  I tell her she has the exact same fleece, only in pink, and she questions me, “Where?”
“In your room?”
“Where is that?”
Her room is right around the corner from where we are located, but I let this drop.
She is giggling now, at the sight of me. Her eyes, which I expect to be sleepy, are wide open, I can almost see inside her mind. If only.
“Hey, let me see that,” she reaches over to take hold of my short coffee cup, filled with a vanilla latte.  Normally, I would have ordered decaf at this point in the morning, but I was feeling risky and went with a regular.
She sips on the coffee, licks her lips, while we discuss the rain. “Look at you, you have water on you.”
“Its pouring, outside.” I emphasize pouring, for the remaining audience.  Many heads shake.  “Oh no,” one whispers while D., who is typically nonresponsive, perks up and mumbles in our direction. What I don’t know, but I am surprised by the mere fact she is attempting to speak.
Dominiki strolls by. She loves Mom.  She sits with us for a few moments, while Mom keeps asking, “Hey, what’s this,” referring to Dominiki’s tattoo on her arm.
Suddenly, Mom is giggling.  Then, out and out laughing.
“Mom, you have the giggles today.”
“Oh, I do?  Well, I guess I do.”  She bursts out in laughter some more.
On a dismal morning such as today, I would have expected her to be fast asleep, a little Sinatra or Glenn Miller turned up in her room.
Instead, she is moving constantly, like a character in an arcade game. I cannot keep track of her.  She proceeds to sit in the chair in the kitchen, the only chair.  I call it the Chairman of the Board chair. She can oversee the food preparation, the medication dispensation, the parade of residents marching up and down the hall to meals or activities, the entrance to the Tub and Shower Rooms, and the dining area.
She lords over the kitchen as a famed chef might, but from a seated position.
I hop on over to follow her, asking her to get up, because there is nowhere for me to sit.
“Do you want to walk?”
“No,” she responds plainly. The nurse, caregiver and other residents laugh.  I laugh.  Mom out and out falls out of her seat she is laughing so mightily.
When she is finished with the giggles, she does however stand up.  I guide her down the hallway, as she reads out the names on the doorways.  “E. Swiss helm,” she stumbles, attempting to pronounce the last name.  “Now what is that?”
First, I try to articulate the name. “Its Swisshelm, like you know the head of the Swiss.”
She looks at me like I am that one who has lost her mind.
“What is that?”  and she yanks on my arm until I can properly explain the last name.
One more shot at humor. “Its an elm. Like a tree.  Only its Swiss.”  This explanation she believes and then starts to laugh, this time holding her stomach.
She still hasn’t stopped chuckling, as we stroll down the hall, and towards Coffee Hour.  She enters the room, and makes her entrance grand, by reading whatever is written in the board, “Participating in Meaningful Programming Moments at Arden Courts.”  I have heard this before, about a thousand times.  I am going to suggest an LED sign in its place, so the wording can be modified daily. I am always making suggestions for improvement, given the time I spend with Mom at Arden, and the lack of diversions while there.
The table of residents stop to listen to Mom read, then immediately continues with their parallel conversations, unimpressed.
Mom reaches for my arm again, “C’mon, let’s go down here.”
We make our way to the far end of the room, where she can observe the Black-eyed Susan garden that has yet to sprout.  I pray they planted other flowers in there too this season, just to mix up my view, not necessarily hers.
She turns from the rain riddled window.  The male residents in the room, all four of them, are positioned at this end.  She motions towards E., a decidedly younger male with round eye glasses and curly hair. “Hey, look at that one.”
“That one, Mom, what are you talking about?”
She has never spoken of an interest in any men, other than B.’s grandson who often appears in suit and tie, carrying a bag of Burger King French fries. And he she notices, mainly because she wants some of his fries.
“You know, that one.”
Not only is Mom showing interest in a male, but she is continuing with a line of thought, despite distractions all around.
“Yeah?”
Mom nudges me with her elbow, and raises her almost nonexistent eyebrows, “Yeah.”
We chuckle together, and a roomful of eyes cast their sights upon us, hurt to be left out of a joke they wouldn’t understand.
I situate Mom in chair near that end then tell her I have to leave. She no longer laughs, curses at me instead.  I walk out with my head held high, despite the reprimand just received.

Amazing moments still transpire in Mom’s life, with or without caffeine. Amidst the backdrop of an ordinary routine, I sometimes miss these singular moments.  But they are there, however fleeting. 

3/19/2014

Remember-A-Wish

Remember-A-Wish
Yesterday, I sat with Betty.
More factually, she sat with me.
Just plopped down
in her fuzzy pink housecoat –
large eyes, large breasts, large curls.
She wanted to talk to me
about something at the home
that she felt just wasn’t right.
So I listened, in between
my mother making her own
comments on my sweater’s stripes.
Hey. Where’d get that?
Mother asked.
And while I told her,
I was also nodding my head
at Betty, who swears she was right.
I know I saw her working
somewhere else, she said.
And then went on to repeat
her sworn testimony
interspersed with stories
of a mother with Alzheimer’s
and a father with dementia,
how she was raised on horses
and always had cats,
was now owner of “Itsy” –
a Chihuahua in miniature.
Hey, I like that sweater.
Mother tried to join in.
Your mom repeats a lot.
Betty replied but didn’t pause.
What I mostly wanted to keep
was my horse, Randy.
And here, I couldn’t tell
if the name was tongue in cheek
or named after an old beau.
But I nodded my head
as she spoke fervently about
caring for the horse.
And I wondered later
if there wasn’t some way
to make her wish come true.
But if it happened,
wouldn’t her wish just disappear?
My family asked.
And I agreed, It would dissipate,
go unremembered.
But the universe would not forget.
11/23/13