Still Saving Seats in Old Age

FullSizeRender-28Big, burly Jack moved closer to the adjacent chair.  Jack was saving that seat in the activities’ room for Emma. But Emma was already gone.

With youthful-bobbed white hair, Emma had been a resident at Mom’s care home. Always upbeat, Emma never stopped smiling, could still stroll the path at the former Blue Ash airport, and waxed poetically about times when she was little.

Emma’s husband had passed away, prior to her entering Arden Courts. Rumor was, Emma also had a boyfriend named “Jack” before her family had admitted her to the care home. When Emma arrived at Arden, she was soon found seated in the westside parlor with another resident, Big Jack. The two could be seen finding humor in themselves (see Vignettes from a Care Home), gazing out the window, or interacting with visitors and staff.

The parlor faced the secure door. Oftentimes, upon my entry, I gravitated towards Emma and Jack first, before seeing my Mom, and offered a hug, a laugh, a where have you been sort of joke to turn the tables on their lives and mine. Their presence, an unusual lightness in their togetherness as Jack was always seated on the chair and Emma on the love seat, lifted and warmed me before I would learn what condition or mood I might find Mom in for the day.

It was as if the two had already shared lifetime together.

Both residents possessed moderate cognitive impairment. For caregivers and staff, who care for more difficult cases and love each person for who they are, residents like Emma and Jack were subtle reminders of the lives residents used to lead, the persons they used to be before they slipped out of those skins. Emma and Jack were also tokens of how sneaky and impactful love can be.

Their joy in each other’s company was evident, palpable, such that I often sat with Mom in their company to relish in that bliss. Theirs was the purest form of love.

Emma had found joy in someone who she didn’t know where he had worked. Jack had discovered delight without knowing how many children Emma had birthed. Neither had known where the other one lived or was born or what was important to them, though I suspect some topics might have risen to the surface and then soon were let go. The only thing each of them remembered was love.

One morning, I arrived to learn Emma’s son had moved her to another care home. That event occurred often, when the money ran out, when the siblings fought, when the individual progressed into a new phase of the disease.

There was never a guarantee that the first place or the best place would be the last place.

Now, I see Jack sitting behind his walker in his usual chair near the exit door, as if ready to depart. The caregivers informed me he is still saving a seat for Emma, yet his disposition is as corny as ever. “Dad” jokes come to mind. Jack still returns hugs when I offer my arms. When I say, “I’m off to go see my mom,” Jack responds, “Tell her I said hello, would ya?”

As for Emma, love had left her time and again. But she didn’t act like a person who would ever lose the capacity to love. Emma will offer and find love at her next place, of that I am certain.

Perhaps Emma’s time with the residents was to give just that, the ability to love again.

And the empty seat next to Jack? The ratio of women to men in memory care centers is 3:1. Sadly, plenty of women will arrive to take Emma’s place. But I hope Jack stands (or sits) his ground, and doesn’t relinquish that chair, as a reminder of how fleeting and precarious unions can be, and yet still be profound.

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A Mission Statement for Care

Five Steps in Creating One for A Loved One with Dementia

IMG_6275Providing long-term care for a loved one with dementia is much like running a non-profit. And every non-profit should begin with a mission statement.

Five years ago, I engaged in the duties of overseeing care for a mother experiencing significant cognitive decline. My unspoken mission had encompassed three simple words: Care for Mom.

I was ignorant of what actions those modest words involved, understanding nothing about my mother’s state and even less about dementia (Did she have Alzheimer’s or simply dementia? What stage was she in?). I also was naïve about the wild ride of caregiving and long-term care.

Care for Mom wasn’t much of a mission statement, nor was it visionary. Most care partners don’t realize they are directing a non-profit. They don’t have the time or energy to develop a mission statement. But, maybe they should.

Copying a generic template used by many organizations, the statement can incorporate humor or candor, but always clarity. Here are five simple steps to creating a statement with intention and compassion:

1. Note the history of the loved one. Who is the demographic represented in this “mission statement”? Write down important dates, milestones, and significant achievements. Write down what your loved one valued in his or her time before memory loss dictated needs.

Mom is an eighty-eight year old Italian beauty…

For her first eighty years, Mom worked, taught, birthed five children, cleaned grime, scrubbed socks, ironed shirts, led Sunday school, sang for funerals and fed a small army. Mom traveled to whatever far-flung child had the greatest desire for comfort and vegetable lasagna. Her mantra was to go wherever there was a need.

2. List the reasons for his or her altered path. The mission statement of a non-profit should contain the reason an organization or program exists. Writing out the rationale for care will reinforce to the care partner the current state of the loved one. This act will support others who might have concerns, or an inability to be present.

In the most recent eight years, Mom ventured down a new path, leading to the creation of Mom, Inc. that exists to:

Witness the individual course of the disease and the distinct disposition and personality traits (including smile and eating off others’ plates) of said loved one, herein referred to as “Mom”.

Utilize funds from Mom’s estate while playing keep away with the government. Accept Mom, Inc. will lose money. There should be no expectations for leftovers.

Reconcile the notion of dementia care with ignorant treatment by insurance companies or other experts, the sterile lights of hospitals and the warm arms of therapists.

Educate educators and everyone else on best practices for care of Mom, living with memory loss, and the self-care of care partner, herein referred to as a “daughter”, living with less of Mom.

3. Determine priorities, actions and responsibilities. The mission statement should specify guiding principles for decisions about priorities, actions, and responsibilities. Be reasonable. What can you accomplish? What do you need help with?

The guiding principles of Mom, Inc. will be:

To keep Mom fed and safe. Dessert first, bacon hopefully always. Includes, but is not limited to, four times a week visits, calls in the night for follow-up tests, emergency room runs, and forced Gatorade drinking to test for UTI’s.

To pay bills, argue with the insurance company, pen angry letters to hospitals about the types of treatment Mom (mostly the daughter) experienced.

To engage the services of a companion caregiver or friend in times when daughter is traveling or working. Daughter will develop deep, meaningful and respectful relationships with care home staff.

Duties of equal importance include procurement of Depends, closet and spring-cleaning, Italian cookie and powdered donut bringing, personal trainer to the “star” or army sergeant in a forced march outside in nice weather. Changing TV channels to find The Chew, tracking down lost (insert clothing item here).

Other obligations fall under the category of escorting Mom to football chili parties though she no longer follows football (mostly because she’s a Browns fan) and definitely should NOT be eating chili.

To ensure Mom has access to comfortable, attractive shoes and “cute” slippers that will support her toddling gait and will not shrivel in industrial washers and dryers.

4. Set your vision for the future. A mission statement should also contain a vision for the future. Recognize it will change. Often.

The vision for Mom, Inc. is:

To find comfort in Mom, who can be particularly ebullient, giggling at everything, including the blackbird splashing in the puddle, where a daughter only sees mosquitoes, and the mention of John James Audobon’s birthday listed in the Daily Chronicle.

To approach all care for Mom in earnest.

To learn when to laugh and when to turn away. The latter a more imperative lesson for the daughter to absorb.

To walk always in the present. Look for the hidden beauty and Mom’s baby doll in someone else’s closet. Embrace the unexpected.

5. Summarize your collective discoveries. Sometimes referred to as a tagline, after the creation of a mission and vision. Writers often reach an ah-ha moment when they realize the message carried inside their words. How will you explain your work – and it is work – to friends and family and curious bystanders.

In conclusion:

Breathing life into the woman who breathed life into me.

 

* For more information on workshops on memory loss or creating a mission statement of care, send an email to:
Annette Januzzi Wick

Somewhere Hearts are Light – Baseball at the Alois

It is time to talk baseball at the Alois Alzheimer Center today.  I wear my Cincinnati Reds gear, as proudly as any Cleveland convert.  It is a concession I make every Spring and Fall – to cheer for the home team.

Mostly, my friends here in the sharing and writing circle, are or were Reds fans.  A few did not grow up here. One used to watch the Toledo Mud Hens, as he was originally from Findlay, Ohio. I want to ask him if he had ever been to Tony Packo’s (Klinger on MASH owned a restaurant there) but I would be pushing his memory over the cliff.

So we open with my interpretation of Casey at the Bat, written in the 1880’s.  It is not quite James Earl Jones, but I use a little Kentucky twang picked up after years of living near the border to snicker, “That ain’t my style!”, and the audience delights in the performance. I do too. I am getting lost in the game.

N., always first to raise her hand and offer her story, tells us how her grandfather, a state legislator, used to read and perform the poem to her and her brother.  She was amazed he would make time for her, given how busy he must have been.

F.  just wants to talk about the baseball going “whack” then “zoom”, and he motions like one who knew how to hit it out of the park.

As we continue our give and take moments, K. talks about being left on the sidelines, and she never knew why. Only that she and her brothers were always into “some monkey business when it came to playing baseball”, and they played until the street lamps came on, and even later.

R. begins to share, then holds back. I sense this was a common pattern in her life.  When its time to write, she refuses, while the rest of the group busies themselves with words on paper, or telling us their words so we can transcribe them.

When it comes time to read aloud our stories, we go from ML. to W. to P. and N. Then D.  tells us, “We had to decide what to wear and how much money to take.” And RU., whose mother was the only baseball fan in the house, writes,  “She was always in front of the television. She would move the chairs and wouldn’t pay any attention to us.”

Around the other side we move to hear L., R., F. and D. who was obsessed with winning, and finally back to R. I am fully prepared to skip her, though I do always ask, when she blurts out, “Baseball was my second life.”

What she had heard this day, about stadiums, home runs, hot dogs and listening to games on the radio were a barrage of images that penetrated the bunker of her memory. In that one instance, a hole had opened up, as if someone had pitched a fastball right through her hippocampus.  “Baseball was my second life.”

When she uttered that phrase, it was like we all, circle members, staff and myself, had hit one out of the ballpark. Because from that, she opened up and shared how she didn’t know anything else, other than days sitting around the radio, listening to baseball games.

While R.’s revelations were the highpoint of the morning, there was poignancy in B’s piece, who related what baseball meant to me, and the many legions who still hear the game called on the radio, attend the ballpark, and renew their hopes each Spring.

“My dad and I would talk about the ups and downs of the world’s oldest game,” B wrote, apologizing for her writing, saying it wasn’t deep. But I, and others, objected. The attraction to the game exists for that sole reason – because baseball parallels the ups and downs of the world’s other oldest game – life.

3/27/2012

Learnings in Winter – Reflections from the Alois

Today. Winter, as a theme, or memory. Not a reality, not yet, not until later tonight, when the meteorologists are predicting accumulation. But here, at the Alois,  memories and learnings amass not just for the residents of the Alois Alzheimer Center, but for those facilitators who occasionally walk the path with these kind-hearted souls.

When we first began offering this class, one student, now quite the stinker, refused to read her words.  Following the first class, which involved the prompt, “I am From”, based on the poem by George Ella Lyon, F. took it upon herself to toss out her words. She remained leery for weeks, “What are you going to do with that?” she would point to the paper where she had hardly scribbled a word. Her distrust was alarming, but also understanding.

Someone had betrayed her words, her voice, many years ago. We had no knowledge of who, or when, but we hadn’t named the program, Found Voices, for nothing.  Our work and F.’s continued presence would prove out, and over time, we would watch her laugh, joke, and even flirt with the farmer-resident.

In looking back, our first mistake had been to call this a “class.”  For the generation of 80-somethings, the word “class” brings back horrid memories. Teachers rapping rulers on knuckles, or the pressure of a deadline, or test, for material one didn’t know.  Certainly, each in this circle has a slight grasp on their condition, so the prospect of reciting poetry or recalling the dates of the Civil War was terrifying. And too, the proverbial red pen had once made its way to each of their papers.

Some of our participants, experiencing significant memory loss, often don’t comprehend they are in a “writing class”. They come for camaraderie, to hear a reading of Robert Frost, to share a memory or eat a donut. They might saunter in, without a care in the world. It is a benefit of their disease.

When my own mother was progressing into a new phase of dementia, she passed through anger and frustration, and into more light. Worries had been wiped off her face, a face which in the past had sported pursed lips and creased brows.  Of course, she still worries about who is coming down the hall, and “where is your father,” but her general trust in people around her is evident.

This condition, while beneficial, and a relief oftentimes for loved ones, is also cause for regret. For often, the person with memory loss cannot connect to other emotional aspects of their life, this including worries.  And while all their thoughts, or their daily take on life, are upbeat, there is sometimes a hollowness, as if they are trying to fill a cup that keeps leaking, and they can’t quite tap into how to plug the leak.

On the rare occasion, the hole gets plugged, their cup will fill up, and they will tap into their reserves, and produce something akin to a fine wine.

Today, we readied the community room for the group. Our regular assistant was absent, so we waited on the staff to bring the residents to us. When they did, we ushered one group of residents that enter through the side door of the room. This I take it be the non-wanderers, or those that have been around longer, and therefore have stayed in the older wing.  I don’t ask many details about the residents’ lives, preferring to let them surprise me, let them show me their story, instead of someone else telling it for them.  First rule of writing. Show, don’t tell.

As this group of regulars, our long-time participants, were filing in, holding the hand of the person in front of them, one was missing.  The assistant mentioned N. would be right back. She was using the restroom.  We situated each as they entered the room, securing name tags, moving chairs, relocating walkers.

When I finally got around to saying Hello to N., she had removed her hearing aids, which drove me crazy. We would have to speak louder or move closer to her, but it was her prerogative.  She wanted to tell me something else though.

N. began, in her halting voice,  “I didn’t bring a pen.”  To which I replied, “That’s OK. N.   We have plenty.”  Then, she mentioned, “I didn’t know where I was going today.  I was worried this would be a class like school.”

She went on, “but then I learned I don’t have to worry.”

I don’t have to worry. What beautiful lines, what a mantra to speak over and again, as the flipping of the calendar sets fire to a hurried pace.  Here, in our circle, N. does not have to worry.

When N. began coming to class, some of the prompts at that time dealt with love and family. N. had been adopted, her memories on those themes were painful. Now, she shares writing that is honest, hopeful, devout.  After her last reading, I felt as I had been absolved of my sins for the week.

Her writings now are more light-hearted, more faith-filled. This could be due to her slipping into the next phase of her dementia, or a change in medication, or working with prompts that don’t touch on touchy subjects.

Or quite possibly, due to the safety N. feels in our circle, and that Winter cannot impact her inside, she no longer worries.

Never Give Up – In Memory of D.

Reflections from the Alois –

Thanksgiving, we told the circle, was just a week away. Without any concept of time, each one shook their head in acknowledgement, but was unable to connect blue skies and sunshine with the typical rainy Ohio Thanksgiving in their
past.
We laughed about how many turkeys Americans might consume on this day, could it really be close to 250 million? And oh, the pounds of cranberries, and not just the kind that come in the can.
F. marched in with a new autumn orange sweater on, to match that of Leigh’s. I too had dressed up, and felt the occasion was a worthy one.
Per our usual routine, R., the assistant at the Alois, rounded up the residents who would be participating in the sharing circle. Looking back on notes from our first class, only ML. and W. and F. had been in continuous attendance. And too, B., whose had fallen off. She wore a trench coat inside now, where there was no threat of rain.
And J. ,when asked about, I was told, “She is too confused anymore to sit through a class.” J. who first wrote, “I am fun. I love to make silly jokes.” In recent times, she had simply sat to listen to our voices, and give hugs when requested. She would no longer be in attendance though she would always be part of any circle that we remembered. Our favorite remembrance of J. would be, as we discussed food, and she motioned, “those little crunchy things you pour milk over.” “Cereal,” we shouted in unison. Her description is still a catchphrase for us, when we are at a loss for words.
As R. made her rounds, I asked about another one of our originals, as we like to call them. “Where is D.?” She hadn’t been in attendance all Fall. Rinda replied, “D. passed away last week.” This I was told before beginning our circle, and thus, my interaction with each resident took on new meaning, for I didn’t know when it might be the last.
I locked eyes longer, made more jokes at my own expense, and really listened, sometimes prodding them for more information than they might have first offered, producing a treasure chest full of sentiments.
After class, M., the activities director extraordinaire, spoke again about D., “We held the memorial service here, and her family then took her to be buried in Pittsburgh.” He explained how crowded the service had been, and that he was sorry he didn’t think to invite us.
I shook that off, as we acknowledged how residents come to feel like family here. “The staff really took an interest in D. She was a mess when she came, but everybody worked with her, to get her in the right meds, get her walking. They never gave up.”
They never gave up.
These words echoed in my head throughout the day, as I reflected on Mom’s condition. Lately, I have been hit with an onslaught of peers moving their parent to a secure facility. I tell them nothing compares to the Alois, the staff, the treatment of the residents, how they support outside activities, how they push each resident.
When one enters the Alois, it is not with the intention that this is the end. It is with the goal of starting over, correcting mistakes by other medical or non-medical staff not as educated in the field of dementia, helping the resident re-establish a healthy routine which they might have fallen out due to lack of oversight, as is the case with my mother and when she finally stopped cooking or bathing.
I push my mom. It drives her crazy. Sometimes, she will throw an air punch at me and say, “Why don’t you just leave me alone?” I have answers for her, a play on my own fears, but even deeper, a resolve to never give up on Mom.
I see much of her in the women at the Alois- the reflection is in their eyes, their laugh, their singing. But mostly, I see Mom in their sheer effort to be awake in the moment, despite their physical and mental challenges – encroaching blindness, crippling hands, weakening minds.
Today, the circle, average age 80-something, gave thanks for their “good health”, having eyes and ears to still see and hear, for God and “Gospel friends”, family and “being included.” Today, I give thanks for D. and the rest of the circle, for Mom, for never giving up.

Observing Freedom at the Alois

Last week, we had the honor of facilitating our sharing circle at the Alois, with the focus on America and freedom. What began as a concept to ask the participants to write it means when they see the American flag went deeper than imagined.
We began with Emma Lazarus, her beautiful sonnet “The New Colossus” engraved on the Statue of Liberty. I had visited the Statue of Liberty a few summers ago, but somehow the meaning had more impact as I read her words. “Imprisoned lightening”, “Mother of exiles”, “sea-washed sunset gates”, all these phrases and concepts are missing from our everyday jargon that reference the Statue of Liberty. These stronger images are the ones that touched me most deeply.
As participants were asked, what the pictures in front of them meant, each was able to articulate a time when the war took life away from them.
N. mentioned herself, as a young wife, waiting for the return of her husband. She still waits today, though her husband has passed away.
R. mentioned, “I cant share.” I took this to mean she didn’t want to participate, but when gently nudged, I realized it was the pain she was bearing keeping her from sharing her words. “All those boys that died needlessly,” she finally uttered, with a sense of relief, but almost as if it were shameful to address death, or question our country’s motives for war.
R. was charged with ferrying the Japanese POWs to camps. We knew this about him, but he too was reluctant to share. Just opposite R. sat M., who bears scars of a bomb dropping in her hometown in Japan.
L. always with something upbeat to share, mentioned “I served in Korea from 52-54, but I didn’t do anything extraordinary. I don’t want to brag. I wasn’t special because I served. And those who did not serve should not be ashamed either.”
A different R, who, when presented with a picture of men in uniform across the war and ages, noted how many wars our country had fought. When prompted, the picture meant more than just men in uniform. “I was a young nurse. I was behind the lines, taking care of these men.”
And finally, F., always the quick-witted one. When shown pictures, she didn’t connect to any of them. But when asked to write, she shared, ”My brother went off to war. I remember my mother crying all the time.”
We closed our time that day with a rousing rendition of God Bless America. I was grateful for our work that day. I felt like the woman Emma described in her poem, “a mighty woman with a torch…from her beacon-hand glows world-wide welcome.” For liberating the words of our participants from some depth inside them, that we only touch for seconds. And while the words only last on paper, and their minds often travel elsewhere, their sense of freedom has lasted a lifetime.

Laughter as Salve

Laughter as Salve 04-07-2011 Reflections from the Alois Sharing Circle

“I think this is a little crazy. What are we going to do with this? This “Jabberywocky” is crazy. What is “brillig” and a slithy tove?” F. could read well enough, but she was always leery of materials Leigh and I would bring to the Sharing Circle. Our day of silliness was no exception.

We had planned to make the participants laugh. Perhaps we wanted to laugh, more so than they. So, we opened the class with the explanation about laughing. I told the residents to close their eyes and just listen to the “Jabberywocky” poem. Even if the words were made up, the rhythm still existed to help create a story. And there were enough standard nouns and verbs, they could piece together a story, regardless of whether it made sense.

But so much in their world does not make sense. Their caregivers become strangers. Their homes become deserted islands with unrecognizable inhabitants. Names for their favorite food slips away on the dirty dishes.

While I tried with a tour de force to read Jabberwocky well enough for the circle to imagine a story, my reading may have fallen a little flat. Not to be discouraged, we had planned for a second poem to read, “The Owl and the Pussycat.” They found this poem much more to their liking, apparently an owl marrying a pussycat, with a turkey as priest, and a pig as a pawn shop king with a ring to peddle, are an easier sell to this crowd. Words, real words, not made up ones, still mattered to them.

The laughs were coming about, one by one. So we continued on with our next exercise, a podcast playing of Who’s on First, with Abbott and Costello. Thought the repartee was quick, the podcast also had a laugh track in the background. Now, some people might find those offensive, as if a studio executive is telling us what is funny. But the laugh track served it purpose that day, to remind the circle that this was funny, the notion of Who’s and What being a proper noun.

The goal was to get them in the mindset of considering what makes them laugh. Made up words, made up stories, mixed up stories. So, we threw in a mad-lib, despite Leigh’s last minute anxiety over whether this was an exercise that might create undue pressure on them to retrieve words or recall them. Over the phone that morning, we revised the plan to only include one mad lib, that being a nursery rhyme of Little Miss Moffett.

We began by brainstorming, asking them to give words for fruit – apple, banana and W. produced strawberry after much prodding of naming red berries. Then, we moved on to words that rhymed with “day”, so we got gay and bay, and when we ask J. to produce a word, we offered a few that others had mentioned, and after this she arrived at her own, way.

The final group of words to collect were animals, and just like that, out of the chute, D. said, “Jackass”. The entire circle began laughing, before they understood how we would use that word. Then we collected dog, and from J., who speaks to us mostly with her eyes, we retrieved the word giraffe. At first, as she was describing an animal with her hands, I asked, does it have four legs?”, s J. answered, “yes”. “Is it a horse,” I asked. “No,” J. shook her head. J. continued to make a large motion, so I asked, “elephant?, horse?” and then finally, because a new little giraffe had been born at the zoo the other day, “A giraffe”, and she shook her head, “Yes.”

With that in mind, Leigh produced a poster board with the original Miss Moffett rhyme on it, which we all recited. Then, we picked out one word from each category, and used those words in place of others, within a new rhyme.

“Little Miss Moffett, sat on her apple” (Laugh, laugh, laugh)

“Eating her curds and gay” (Laugh, laugh, laugh)

Along came a jackass who sat down beside her

And here the laughing was loud enough to cause us to wait to complete the rhyme.

And frightened Miss Moffett away.

Now, we put them on center stage, by asking them to write, “Who or what do you think is funny?” Amazingly so, with the prolific writers we have had, no one produced a body of work longer than a sentence with the exception of G. This surprised us, until we later determined that we need to lead the circle down a narrow path when asking them to write, offering something more specifics, such as “The person in my family who is funny… or “A clown is funny because…”

We closed our circle as usual, with the naming of “how the circle felt today” and many stated that it felt good. Afterwards, we discussed who in the room was ticklish. As I asked each in turn, every resident had a smile on his or her face, and L. offered, “Well, I don’t really know if I am, but I might like to find out.” Even P. who sits stoically through class, though that is more disease than disposition, cracked a smile at the thought of her feet being tickled.

Laughter is a complex emotion and what we find funny is subjective, and also unnamable. While we admitted to ourselves having some disappointment in the output of writing that day, there could be no doubt as to the output of fun we had.

If laughter was the salve to even one cell where pain or sadness dwelled, then this work brought healing into their day.

Luck or Healing?

2011-03-30 Luck or Healing?
Reflections on the Alois sharing circle.

Leigh and I sit in a coffee shop every few weeks, contemplating our next sessions for our sharing circle at the Alois Alzheimer Center. While we first began calling these sessions writing circles, we changed course, so as not to cause undue pressure on the participants to perform.

Sharing circle seemed appropriate in ways that date back to indigenous cultures who use the “sharing circle” to resolve issues for or amongst its members. These issues can often be contentious, emotional. The circle helps in healing by encouraging the opening of the heart, telling the small truths or the big secrets, unburdening themselves. Everyone is allowed to speak, with no particular time limit and no interruptions are permitted.

The elders hold the space, while souls spill out their deepest troubles. Men and women alike take part. Throughout the time of the circle, prayers are continuously offered up for the sufferer, to find relief from their emotional or physical pain.

This image comes to mind when we facilitate the sharing circle at the Alois. While roles are reversed, and we, the younger, take on the role of elders in the indigenous tradition, we recognized that we are not always the wiser.

Our most recent circle fell on St. Patrick’s Day, so we created a circle around this theme. The activities director directed the room be decorated with green balloons and a cake with a shamrock on it. I carried in a potted shamrock plant, which enthralled each participant, as they held it in their hands, said their name, then passed the “luck” on to the next person.

The poem for the day was The Shamrock, by Andre Cherry, written in the late 1700’s. How fun it was to read this poem to them with my fake Irish brogue. Several times I had to stop myself from slipping into an English accent instead. If I sang some of the words, the brogue flowed much more smoothly. My daughter Shannon, a petite red-hair, accompanied us that day. Dressed in green, she captivated the participants who commented routinely, “Boy she sure looks Irish.”

Following the reading of the poem, we always have a musical component. Sometimes, the residents sing along. Other times, they nod their heads in enjoyment. Danny Boy and Galway Girl streamed forth from my music player. For whatever reason, “I’m looking over a four leaf clover” did not make the transfer to my player. We warbled the words instead.

Then came our writing time. We offer a line or thought and ask them to write on that idea. We are somewhat specific, even not leading, as this helps them to focus. The residents are like me when I shop, less options make my life simpler.

The first prompt was, “I feel lucky because…” And many wrote to this beautifully.

The second prompt, devised after a few emails back and forth with Leigh, were, “At the end of the rainbow, I hope to find…” T. wrote, “my wife”, others included “my family” and yet another write, “peace and quiet.” While we had considered this an open-ended question, many of the writers had not. They were able to complete the sentence and put down their pens, with not too much thought associated with it.

I couldn’t help but wonder, how would they have responded, if I had utilized the other prompt we considered, “I feel unlucky because…” Leigh and I often joke that she likes to keep things positive. And she is the most uplifting person I know to be around. On the other hand, I like to dive deep, to push for more.

What words did the residents leave on the table that day because we didn’t use the “I feel unlucky” prompt?

I go back to the primal sharing circles. Members were encouraged to bring their deepest troubles, so that their hearts might shatter open and then heal. One of our regular “contributors” did not share that day. She pushed the paper away and kept repeating, “Its personal.” Would she have written, had she been asked to consider if she felt unlucky? Would she have found healing?

Brainstorming on Love

Valentine’s at the Alois

There is a suspended moment in time from when we instruct participants in our writing circle on the activity that we are about to embark upon, to the time in which they take the pen to paper and begin to write. Even those that cannot physically write will attempt to compose a line that might correlate to what has been offered as a prompt. Some writers call that moment inspiration. Others call it breath or soul. As observer, as well as facilitator, one might also call it love.

The theme for this February morning is Valentine’s Day. Most participants, suffering from a broad range of memory loss symptoms, do not know Valentines’ Day is four calendar days away. When escorted into the activity room, surprised residents catch glimpses of red and purple balloons, a pink tablecloth and boxed candies on the table.

We greet each in turn, with a smile and a nametag, for us to remember. We too are memory challenged, and the roster often changes just enough to throw us off. Brief discussions occurred – “J: It’s cold in here”, “M: Don’t those balloons look fancy.” L: “What is the topic today?”

Poetry and Valentines. We are careful not to refer to this hour as a writing class, for writing brings up memories of crass teachers rapping knuckles with rulers or marking up one’s life story or belabored poem with a red pen. We are also sensitive when using the word “Love.” There is so much emotion in that word, which we want to encourage, but not inflict pain.

When L. is informed we will be reading Anne Bradstreet, Elizabeth Barrett Browning and Edgar A. Guest, he responds with enthusiasm in his radio voice, “I know Edgar Guest. He was a poet from Detroit, had his own show for a while, colleagues didn’t like him too well.” L. is also aware he may be asked about love. The theme is evident to some. He speaks aloud, “I wonder if I am an emotional man. You know, I enjoy learning, but I don’t know if I exhibit a lot of emotions.” But L. will stay because of Edgar. Only minutes later, when L is asked to share with the group about Edgar Guest, L. will draw a blank. We capture in the moment what we can.

We open the circle with a candle, asking each participant to say his or her name. Some are prankish. F. calls herself Pete. P. states her full name. J. struggles to speak her name so we name her into the circle. We begin reciting the poetry, first Anne, then Elizabeth, then Edgar, selecting works that represent not only spousal love but universal love and friendship.

Next, we begin brainstorming about people to whom they might like to write a Valentine. Brainstorm when written out seems an ironic word choice as during the past months or years of the participants’ lives, they have experienced their own brain storms when memories are trapped in the tangles of their mind. Their only hope is staying rooted in the present and being supported by those who will weather the storm with them. Ideas begin to flow and extend from grandmother, teacher and brother, to the obligatory spouse or children. We write these down for all to see.

Then, the real brainstorm occurs. We instruct participants to begin writing at the top of their homemade Valentine, Dear _______. “Let’s write a letter to this person. Tell them what you loved them for, why you are thankful for them.”

In this instant we hold our breath, and dive into the waters of memory with them. Some begin immediately. Some look confused. We sit and review and write with each contributor who needs us. We prompt, we cajole. We mourn and celebrate. Twenty minutes pass.

We step away from the tables and turn down the volume on Louis Armstrong singing, “I can’t give you anything but love.” Whether through our transcribing or their own movement of pen across paper, in front of each participant lies a body of work.

Each contributor is asked to read his or her Valentine aloud. Those who cannot read will entrust their words to us to share. When the circle makes its way to L., he is not too proud to ask, “Well, I would like someone to read this for me.” His eyes are pooling with a tear or two, so one of us lifts his Valentine to read, careful to breathe before giving a voice to his words.

“Dear Grandma,

Thanks for all the love that you expressed to me when I was just a small boy growing up in the grocery.”

There is more from others:

“Dear R. – You have a smile that cannot be forgotten.”

“Dear T. – I love your quietness at times.”

“Dear Mom – Thank you for encouraging me to be a nurse.”

“Dear D. – The best son and helper that anyone can be.”

“Dear T. & K. – I wish you lived closer.”

There is never a full narrative elicited from these writings, only the fascinating fragments of the participants’ stories that come to life on paper.

We have incorporated various themes in our (not a) writing circle, including The Secret of the Sea, I’ll Fly Away, What I Would Dress as for Halloween, all producing smiles, sighs and admiration. But only love could let loose these fragments that float in the space between idea and paper, in a way no other subject could.