The Vulnerability of These Thirty Days – A Wrap-up

1 12 2012

“We cannot live in this world if we are not willing…..” These are words from a poem written by Naomi Shihab Nye, used in one of my writing classes. The poem is titled “Shoulders.” I selected this poem – subconsciously – following shoulder surgery. But it is no coincidence to meditate on it now, as a wrap up to my original rant, “Are we ready for the dementia generation?”

Through thirty days, I have examined innovative programs related to dementia, staving it off, helping those who suffer. I have shared lessons from our friends at the Alois. Equally important, sharing the poetry painted a portrait of my mother while becoming a prayer on the path of healing from the loss of Mom as I knew her, and the physical passing of my father.

But through these various lenses, I discovered alternate ways to love my mother. To know her in this state she exists in now does not come without hard work nor without blessings. While some might find it difficult to grace the doors of an Alzheimer’s care center (and I still do), I do so now with more reverence, courage. In those moments I dare to cross the threshold, I am rewarded greatly with a glimpse of God’s purpose for humans on earth.

The Wizard of Oz bellows, “Pay no attention to the man behind the curtain.” I say, “Pull it back, and pay every attention to every man or woman you find behind the curtain of dementia.”

In the coming days, I feel a tide change in my work, as I do at the turn of each new year. These thirty days provided unfettered access to my heart’s true work.

As I ask myself the question again, “Are we ready for the dementia generation”, my honest answer is “no.” We should never be prepared to accept unequivocally a change in the human condition, for wherein would lie the struggle? In the struggle we take action, find answers. In the struggle, we become ready. Am I, or anyone who read this blog, more educated, than say, 30 days, ago? Yes. Are we more prepared? No.

Unknowingly, my mother has allowed me to see her, and others, in their most vulnerable state. Unwittingly, I too have arrived at a point in our relationship that is filled with vulnerability. Dr. Brene Brown, author, states that vulnerability requires we show up in our lives without a lot of guarantees. To my mother – my first reader, editor, audience, book reviewer, and now subject, I commit to show up at your doorstep, awaiting whatever surprise the day might bring.

2012-09-18 The Sacrament of Letting Go

I am standing over a fissure in the crusty earth.
Winds sweep through open arms.

I am trying to catch you,
not knowing which way you will fall.
I hop on one foot, then the other,
straddling, unable to sustain this act.
How long must I debate
the direction you will drop?

How will I catch you,
lightweight, barren,
no longer attached?

You look down in your free fall,
with slight smile,
see beauty in the microscopic,
the dance of an ant with its load.
Are you laughing, because that is me,
trying to catch
you who is no longer weight?





A Lesson Learned – Reflections from the Alois

30 11 2012

What I learned on my first day at “school”
Relfections from the Alois
9/6/12

This is our first Sharing Circle session at the Alois Alzheimer’s Center since we left off in May. We enter the Alois, leery of finding out who might have died while we were away. Sometimes, we enter awash in guilt. Today, I enter in curiosity after the events of the summer, my father passing away, moving Mom into another Alzheimer’s care center, one closer to my paths of work and home.

Mom survived three moves in two months, due to circumstances beyond her control and for that matter, beyond mine. She is at peace now, a little more sedate (not drugged) from the trauma of her loss. Mom sits comfortably in the out doors. We pretend we are in Florida, which is not difficult in these dog days. She evens extends her warmth to the resident dogs, which she didn’t used to.

I write those previous lines, having become an instant and reluctant student of care centers for those with memory impairment. This is not a review of any of those. I will save that for another blog. This is a reflection on where Mom is on her journey, and how I see the members of our Sharing Circle on their paths.

The topic today is school. Who doesn’t love that topic? Typically, kids still attending school. But today, we were able to pull out many memories, including one where R. said she would pit her meatloaf sandwiches against my mom’s any time. I would relish the challenge, if only it could be so. But we let them imagine here. We speak of futures. For that one moment, a purpose arose in R. that had not been apparent beforehand.

My attentions are focused on tasks at hand, reading Shel Silverstein, “I Cannot Go to School Today”, singing School Days, “you were my barefoot bashful beau” as W. plays air piano to the tune, and listening to M., a new member, proudly read his essay, which began with learning to play trumpet in school and concluded with pride, a sentence about his participation in the National Guard marching band.

Occasionally, I slip. I look at ML’s nails, and think, I must tend to Mom’s, which are long and the sparkle is wearing off. I see W.’s hair, perfectly coiffed and recall that beauty shop had not been able to fit Mom in this week. I hear M., born in Scotland, recollect her time at school as being very different from others. She spent her school days in the midst of air raids. She is one of our new members. In her, I sense belligerence, distrust, setting herself apart. I also recognize the signs, as they were once in my mother too. So I listen, I remain calm. I include. I validate her anger, her voice. Hell yeah, I’d be angry too, if I knew to be angry about losing my memory.

Last Spring, I had hoped to bring Mom to one of these sessions. At the time, she literally lived around the corner. It would have been no effort to pick her up. But Dad had begun his decline. I was constantly being called by staff for one small incident after the other. And that day, the one I had planned, I chose to take a break from my parents.

As I hear our circle members complain about Math, their least favorite subject, and recall taking naps in school, that one day comes back to me. The one day I could not muster up energy for my mother, but I could for everyone else’s mother and father who were residents of the Alois.

Our circle closed with recollections of art class, E.’s favorite, going home from school to play with friends, and cookies and juice. As the residents returned to their couches, their naps and other activities, one stuck around. It was M. In conversation with him, I wasn’t certain his disposition qualified him to be a resident.

“M. Thanks for coming, did you enjoy this?” I recalled the skepticism on his face earlier, and the snickers that he and F. traded, the only two males, while they read the poetry aloud to each other before the circle began.

“I sure did.” I offered him a shoulder hug. Personal touch remains of utmost importance to their self-esteem.

I began to turn away from M., when he stammered, “Boy, you are sure good with old people.”

I laughed because I thought he was half-flirting. And because I didn’t believe he was old. Later he told me he was 74.

Then how blessed was I to have had my dad ten years beyond 74, his mind intact before he died. How blessed was I to have had Mom for 80 plus years, before the dementia settled in.

“Thanks, M. Well, I’ve had a lot of experience!”

Thanks M. For reminding me of Jesus’ well-worn words from Matthew 25, “Whatever you do for the least of my people, you do for me.” Today, whatever I was doing for M., for ML, for the residents of the Alois, I was doing for my mother.

10/23/2012

Yesterday and Today and Yesterday.

This dream I was having –
you were in short
floral print pajamas, laughing.
Maybe my age, middle of the
long journey of life.
A swath of L’Oréal painted
across your lips.

Your children sat
on redwood picnic tables,
long benches tipping
whenever one rose.
In the chaos, a neighbor,
whose face matched my neighbor now,
was mowing in circles,
around his house and yours.
You chin turned slightly
towards the Viewfinder of my mind.

An alarm nudges me awake.
I leash the dog
to keep from scaring the scarecrow.
Slurp weak coffee, rush to shower.
And only after pulling on pants,

last night’s dream flickers
in the glow of the moon,
gleaming through watery dawn.

I relive the aching,
the touch of a you
that remembers me.





A Space of Non-Asking – Alternate Realities

29 11 2012

In our work at the Alois, we spend time creating an atmosphere in which to immerse our students. We are in essence, creating for them, an alternate reality, a safe space for them to live, to be, for the short time we are together.

We didn’t know we were doing this at first. Actually, we weren’t doing it, until we learned how to expand the sharing effort to encompass multiple senses – sight, hearing, even touch comes in play, as we have trucked in play sand to help our members feel the sea.

While caregivers and family members are encouraged, while interacting with their loved one suffering from dementia, to meet them where they live, I also believe it is possible to move the meeting, to an alternate mental space.

Below is a reflection on our theme of the zoo. While not perfect, the end result for one member was worth it.

There are many references one can find on the Internet, as it relates to alternate realities or inner worlds of those with dementia. Many days, I too, want to join in that alternate reality, and in those moments, I consider what a blessing it is for my mother and how happy she is in her inner world.

Behind the Curtain
At the Alois Sharing Circle
10/12/2012

“We went to the zoo today,” P. smiled and shared. One might think this was a response coming from a pre-schooler. But it was a response shared by one of the sharing Circle members at the Alois Alzheimer Center.

After forty-some circles we had facilitated at the Alois, we had oftentimes duplicated themes, but varied the poem or prompts. There were days though when I was up for trying a new topic.

The book, “Put Me in the Zoo” by Robert Lopshire, had struck a chord with me while reading it years ago to my son, while re-reading it now. I could not say precisely why I was drawn to the topic, only that animals are a popular subject matter, as are experiences from when our members were youngsters.

The premise of the book was that an indiscernible bear has spots that he performs tricks with. The bear’s spots are the source of much amusement for a pair of zoo-goers, on their own field trip.

I don’t believe our circle members took in too much from this story, but we built on the subject by showing them enlarged photos of tigers and giraffes to elicit conversation.

When the time came for idea generating, and they were prompted, “what comes to mind when you think about the zoo…” only a few could connect to the pictures laid out in front of them. M., from Scotland, mentioned animals that she used to see in South Africa, precisely the ones we see on our American zoos. M., able to sit without anxiety, spoke about sharing our world with other beings. Later, he would write, using the word “inhabitant.

Some mentioned fear of the animals. Other mentioned policy and rules surrounding behavior at the zoo. Still others remained silent, a silence to which we had grown accustomed.

Looking back on the success of the theme, the zoo concept in its present form, was not the zoo concept of the past. Many of our members had not visited a zoo until taking their own children there. In which case, their recollections could not be as in depth or reach as far back as we originally thought.

At any rate, we munched noisily on animal crackers. In closing the circle, each member seemed excited to just be together in community. After members were escorted back to their respective wings, our activities director mentioned P., and how she believed she had just visited the zoo.

That week, I had been reading Victoria Sweet’s God’s Hotel. In it, she wrote a vignette (p. 40) about visiting a patient with another doctor. The patient, admitted with the diagnosis of old age, remained quietly in her bed, while Dr. Sweet and Dr. Fintner stood over her in silence. When finally Dr. Fintner broke the silence and asked where she had been, the patient responded, “I was at my high school prom…The boys were so handsome. And girls were so pretty!”

Dr. Sweet referred to this occurrence as a peek behind the curtain. These patients were not dead, but some times lived in an inner world – with a similar amount of excitement and aggravation that existed in the everyday outer world. It was a retreat for those patients, to be in a “space of non-asking, non-answering, non-doing,” Dr. Sweet wrote. Healing was occurring in a way no one wound could indicate.

I became convinced this is what happened with our circle members.

Each session we begin with a poem and physical props, then move to music, touch, idea sharing and writing on a theme, such that the participants are immersed in this “other” world we have created for them, if only for that time.

P. had gone behind the curtain, to the sights and sounds of the zoo. She had exchanged the bars her mind had created to freely roam the zoo, soak up its atmosphere, smell the animal manure, hear the roars. Thirty minutes later, P. was carrying that excitement into her day.

8/28/2012

Unmoored

She sits on a raft, watching lifeboats pass
unmoored from her beginnings as young girl
from livelihood as mother
from connection to husband –

released from any sort of vessel of love.
Her head bobs up and down,
sometimes she is nodding off.

Her anchor gone, the buoy marking safety disappeared.
Endlessly afloat, she spends her days
a survivor from the shipwreck of her disease.

Storms surge around – hurricanes, tornados –
she has endured regardless of whether she wants to.

What is keeping her there?
Is it the calm seas of her own mind,
imagining breezes tickling
the fine hairs on her skin?





Validation

28 11 2012

Time is not linear for a person with dementia. Their reality is also random, living in the past, then future, then present. There are many ways of looking at this conundrum when dealing with a person who has dementia.

Today, I am addressing Validation.

Validation, as defined by Naomi Fell, is “Validation is a method of communicating with and helping disoriented very old people. It is a practical way of working that helps reduce stress, enhance dignity and increase happiness. Validation is built on an empathetic attitude and a holistic view of individuals. When one can “step into the shoes” of another human being and “see through their eyes,” one can step into the world of disoriented very old people and understand the meaning of their sometimes bizarre behavior. “

Specifically, the theory is built around the notion that those with dementia, in their later stages, are still humans, trying to resolve their final life issues. And this resolution takes on many forms, but also involves the work of caregivers to employ a respectful, empathetic approach when encountering someone with dementia. It also encompasses the fact that there is reason behind each behavior – they may be as simple as wanting to be heard and the need for nurturing, or more complex is the desire for recognition, status, identity.

Here is a link to more information on the Validation Therapy. While some have admirably made their life’s work out of this theory, the ordinary reader will understand that ultimately, listening, keying in, are keys to unlocking one’s self-worth, where it has been hidden in the tangles of their memory.

Tangled

When I was shown the diagram of the brain, of its three parts,
the cerebrum was brimming – full of apple pies made from backyard trees,
her mother’s broad Italian hips, love for six children and life, I saw how
the littlest cells did all the work, neurons populating that forest – mother, food, home, children.

These signals of life would bounce off steadfast tree trunks and hard rocky floors, creating echoes of laughter in the forest, and when the bouncing stops and echoes cease, forgetting sets in, an interloper disrupting the travel of its denizens.

Suddenly, over night, or perhaps it happened over many years, the forest shrinks, invaders move in, chip away at children’s faces, reverence for the Eucharist, the warmth of the marital bed. New growth shrivels, washed out by non-stop storms.

The order of the forest is lost, disintegration rampant. The waxwing from his pine top perch, denied its food by the forest, flies away from entangled limbs. Does anyone remember walking through that same forest, late night, in love, wanting to stay where everything made sense?

4/11/11





Anticipatory Grief

27 11 2012

Not until my mother moved near me did I come to understand the term anticipatory grief. Yes, I had previous experience with grief, but because we were so busy treating my first husband’s cancer, there was no time to reflect on what might happen in the future.

Time with my mother often brought forth tears, and sadness and a understanding that though she could still stand in the kitchen, she could no longer execute the extraordinary feats that once defined her. She could hold me while I mourned my father’s death, but could not comprehend the loss herself. The depression that often pours forth from my bones as I come to terms with her condition is often met with the question, “Will I ever NOT cry when I leave Mom at her care home?”

A writer friend of mine, schooled in grief processes, shared that this phenomenon was called anticipatory grief. I have written an absurd number of poems during this time, and through this blog and my lists now see those poems as an outpouring of grief, the anticipatory kind. Only I call it the “slow holding on.” And while I grieved, my father remained in denial, always expecting Mom to remember what she could no longer. He was the smart one in the end. Denial hurts a lot less.

If you or a friend or loved one is experiencing this grief help them to validate their emotions, support them in finding an outlet.

Read more about anticipatory grief.
Call your local Alzheimer’s chapter, they will have programs and groups available.

In the end too, anticipatory grief is like any other form. You never get over it, you just go through it.

They call it slow grief –
like molasses dripping down
the side of the jar,
moving at an elephant’s pace,
finally landing on the countertop,
leaving a stain behind that will take
months
to rebuff back to shine.

4/17/2012





Interactions – with Technology and Self

26 11 2012

Technology has proven to not only break down barriers, but to re-establish connections in our world. Earlier I showcased a program called Alive Inside, a doc film about one man’s quest to provide music to individuals with dementia, through individual music players.

I recently acquired an iPad, and one the great functions is that it has allowed me to download movies/musicals that would intrigue Mom, and we watch them together on the iPad. This works in particular, in care centers, where large TVS are usually in activity rooms, and smaller TVs are in family style rooms where the volume cannot always be turned up. The technology also allows us to be in each other’s presence, without me expecting certain behaviors from Mom, with her not feeling the pressure to perform to my expectations.

We have watched My Fair Lady, and mimicked Eliza Doolittle’s “Rain in Spain falls mainly in on the plain” together. We have watched Julie Andrews climb to the top of the mountain, singing about the hills.

Other uses for the Ipad has consisted of loading various digital “photo albums”, and presenting Mom with a slide show to update her on activities of children and grandchildren. She may not always recognize a name and a face, but maybe a house, or smile, or a certain set of eyes.

As I am always on the lookout for other, I have been testing out a few apps that Mom has found intriguing. One is Line Art, which allows her to draw, watch lines light up, without the hassle of locating her to the activity room and getting out the paints. I would agree it does not beat the real thing, but it beats out nothing.

Another is Tongue Twisters, with its cartoon like interface, and large fonts. Mom is especially fond of this, when she is not distracted by others walking by.

There are apps for relaxation, apps for music. So many apps are applicable because of the range of vision between person and iPad. And the notion that any process initiated and interacted with, is done so with limited engagement, due to the nature of the device itself.

Celtic harp allows the user to play, as one moves their fingers across the screen. Also, there is much to love about the color bursts in Sky Doodle.

The main point is providing entertainment, interaction and stimulation for the person with dementia. The added bonus is that caregiver or family member is left feeling the same.

Today’s poem was a award-winner in a recent Ohio Poetry Day contest.

Making the Bed with God

4/16/2012
AJW

Doors bang open,
pairs of feet – shoes off in the garage –
run rampant towards
powder room and cookie drawer.

Books are lobbed onto counters
There is shouting out,
but no one answers.

She is upstairs, creasing corners
of the bed in the yellow room
folding over Life-saver candy sheets
flat-handed, crisp and precise.

As she stuffs pillows into cases,
she shares
a cup of tea with God.

What should I make for dinner?
God answers, Meatloaf.
Will it rain tomorrow? Buckets.
What will my youngest grow up to be?

With a snap of the wrist,
she shakes out the bedspread.
Had God traded places
He would have lain down
with countenance covering
a cherry candy image,
exhausted
from questions she is asking.

She is in training to save souls,
including her own.
But not today.

Today, she chats with God –
phone calls, baking Easter bread,
too many damn tomatoes to can.
Books and torments are still being
tossed around downstairs.

She glances at the mirror,
sees herself, not her imperfections.
Her life has not been by accident,
but by creation –
a making of the bed.





Art or Life?

25 11 2012

“The self-conscious aim of Life is to find expression, and that Art offers it certain beautiful forms through which it may realise that energy.” – Oscar Wilde

9/5/2011 – Alois – I Am From….Ready

At times, life meets us unexpectedly in grand fashion, dressed in tuxedo and tie, waltzing down the street. Other times, we stumble across life in the spaces we create.

As I begin again facilitating writing circles – sharing circles – at a care community for individuals with Alzheimer’s, I am conscious of the intersection of the life we live and the art we make. At that crossroads, I have found the blue-grey eyes of J., who loves the music and cadence of our voices and poems but stumbles upon the uttering of a simplest hello, I have observed and been the recipient of the caring nature of M., and the utter blessedness L. professes when in company together.

The circle opened as any other, but months had passed since we had last occupied the same mental and physical space as our “friends” at the center. Summer had been long, possibly passed so unconsciously that I wondered if it had happened at all. A daughter’s graduation, a sister’ move to Florida, 50th wedding anniversaries, finally learning to dock the boat, the plump purple tomato my garden fostered, my father’s physical fall down the steps, mother continued tumbling into the abyss of forgetting. Through it all, the time to travel to my own destination of desk, writing, and teaching could not arrive soon enough.

Labor Day, my son’s birthday, memorializing his father’s death. September loomed large as the Rockies and true to form. As I stood at the foothills of Fall, my climb had just begun, as mom and dad’s descent down the mountain of their lives was beginning too. Thus, my writing life had begun to converge with my other life.

A week prior to the start of class, I had watched public TV show about the Alois care center, and the executive director mentioned two topics, neither related to medicine or a cure. She spoke of their support of individuals coping with memory loss as an effort for these folks to live out loud, help them find new ways of expressing their older selves. Their experiences still existed. They lived on in their heart, their emotions, and their sense of worth. These individuals were able to participate in many external events and activities, including the writing circle, which brought them closer to their core.

When I first conceived of the writing/sharing circle three years ago, I had sought names for the program – something clever, catchy, something marketers might latch on to: Memory Sticks, Memory Matters, Mind Matters. I was working with imagery and alliteration trying to attach the meaning of this program to me, to the participants. I finally landed upon Found Voices.

Oftentimes, when our friends at the center express themselves, they are surprised by what appears on paper or what they say when to speak, as if finding a long-lost trinket in between cushions of the couch.

I was met this week with two realities –NJ was still waiting for her husband to fix her hearing aid, which would be physically and metaphysically impossible. And J. handsome tall without hair said, “I love it here, but I can’t wait to go back home.”

I found my parents, on the cusp of their move, in these statements. My father wishing for his own home, paid for in cash some 40 years ago, where he made gardens delight and geraniums dance. My mother – always looking around for my father – he often disappearing into her dementia.

I hear L. reach back and use perfect enunciation when asked, “L. how did it feel to be in the writing circle today?” And he answers, “Well, lucky I guess. Lucky to be alive. Lucky to be here.” And M. who said, “Thank you for the opportunity to talk about myself I don’t get the chance to do that.”

We had used an “I am from” template as our prompt that day, M. ending her writing about caring and protecting, as older sibling and nurse, with the line: “I am from… fulfilled”

There is a saying “when the student is ready, the teacher will appear.”

I am learning from these friends how to be present for my parents, in their move, their health. I am going to school on the staff here, the ones who gave ME the opportunity to align my passions with their mission. I take in how they phrase a question, how they elicit a response. I am learning to celebrate the small victories across a finish line that keeps moving.

I am from…ready.

2011-11-15

Bed in a Bag

The bag is labeled
“Gift from Mom and Dad Januzzi
– from Italy” – 1950 something
a turquoise embellished bedspread
rests inside, having survived two moves,
from honeymoon to family roost
now to empty nest

we almost left it in the closet
thought it was one
of Dad’s garage sale finds

blankets were once scattered about the home
one with quotes about grandpas
one with grandsons’ photos –
before girls came along
one crocheted by a neighbor
one gifted as a boss

we always slept
with blankets as refuge
when love wasn’t enough

here, in their newly condensed nest
we are still opening boxes
unpacking life

I stare in disbelief
I thought this bound for auction
but there it lies, beneath tatted tablecloths
and Mom’s holiday napkins
in a box marked “miscellaneous “

Lets put this on your bed, I suggest to them
they follow me rampantly
as if I will tear apart one more thing in their life
Mother surprises me, stretches the quilt
across the years of their marriage,
smooths out the corners, as she taught us to do.