Tag Archives: alzheimer’s

In Theory, Practice, Life

In Theory

FullSizeRender (76)“My eighty-nine-year-old mother was shoving furniture around yesterday, using her superhuman strength.”

I was presenting to a group of docents at the Taft Museum, in training for Memories in the Museum, a joint program through the Greater Cincinnati Alzheimer’s Association and Cincinnati’s art institutions of Cincinnati Art Museum, Taft Museum and the Contemporary Arts Center. The series of four programs, each offered at the three museums, encouraged individuals with dementia and their caregivers to partake in art appreciation through specially-curated tours, discussion, refreshments and art.

“When Mom spotted me, she grumbled. ‘ C’mon, c’mon’. I knew to help her despite the rant.”

She continued on until the effort wore her down and – her chair hit a wall. An hour later, after slowing down our time together to an almost crawl of the hands around the large clock, Mom reached out for me and said, “I love you.”

The audience of docents quietly hummed.

The convener of the training, Lisa Morrisette, had recently attended a symposium on arts and Alzheimer’s in Denver called Art Access. Earlier, Lisa had reviewed concepts from the symposium, one being person-centered care or taking a person-centered approach. Anything person-centered had become a buzzword in arts and Alzheimer’s community settings.

In working with the local Alzheimer’s Association, I was in attendance at the Taft that day to discuss ideas on pairing painting and poetry for the Memories the Museum program. I continued with my talk.

“After hearing my mother’s soft, sweet voice say ‘I love you’, I would take Lisa’s words one step further and say, we need to take a human-centered approach.”

I facilitated my program and eaxmples, using a short poem about the Mona Lisa and a comparable writing subject of the Cobbler’s Apprentice.

Cobbler's apprenticeHis ears, large, elephant-like
for such a young boy
what else has he heard?

Eyebrows, umbrellas shading eyes
from deals after dark
what else has he seen?

Those berry-plump lips
which young miss
will he kiss next? – AJW

Panelists had also been seated at the head of the room. The group included two individuals in the Memories in the Museum program. Each had attended the series for a while. One female participant excitedly shared about the program. “It’s the highlight of my week.” Her caregiver husband admitted though, he was not “a museum person”. For C., a former art director now experiencing dementia, his words reverberated through the room. “Coming to the museum was like coming home.”

For several days, his comment literally stayed with me, scribbled on the back sheet of my agenda buried in my flimsy, black tote.

It was all the evidence I needed. When I think of ‘person’, I think of the physical container that is the body, the shape. But ‘human-centered’ allowed me to see failings, frailness, and fears, as well as the life experiences that shaped that person over time.

In Practice

Two days later, my work took me to Memories in the Making, a program distinct from the one above and operated by the local Alzheimer’s Association for over 15 years.

Participants arrive with their caregivers. The caregivers attend a support group and participants work with the Time Slips offering images designed to stimulate recollections and imagination without the pressure of total recall. Afterwards, their apt facilitator, Joan Hock, leads them in an art project, some quite complex. For some individuals, Joan had witnessed their decline in art before it was apparent in life.

Instead of the Time Slips program, my colleague, Pauletta Hansel, and I, facilitated our session with poetry and writing on the theme of cars. The caregivers rejoined later to hear our readback lines from participant’s writings and spoken thoughts.

Betsy shared, “I ended up flat in the mud….I’m still here, stuck in the mud”. She and her husband’s eyes widened as together they recognized Betsy’s words describing an event that happened long ago. The irony of those words was an appropriate account for someone experiencing dementia. The individuals were in essence, stuck in many ways. The art and words helped them out of the rut. (Read our group poem below).

In Life

I hustled from that class, raced home to care for the dog, and sped along the highway to visit with Mom. She and I had spent six of the past seven days together, as I had been concerned with her recovery from a seizure. I was also leaving for Oregon for five days and had racked up hours to make up for the difference in my absence.

Becky, the activities director, informed me how Mom had been in a glowing mood, which was better than glowering. I was not to find the same. Mom grabbed me by the hand to assist in raising herself from the chair. Soon, Mom shuffled around on sidewalks outside. In a wheelchair, another resident, John, chose to follow us. John had Parkinson’s but displayed less outward signs of dementia.

“You’re the POA for your mother, right? My brother is mine. And I want to go to Charleston.” John had spoken long and longingly about Charleston in the same way I spoke of Oregon.“But my brother and sister say I can’t. I need more help. I don’t have much money left but I have some. Do you know the name of lawyer? The doctors say I only have six months to live.”

His words came out rapid fire, as if John were afraid he might lose his life if they were not dislodged from his brain at that moment.

John had been residing at Arden Courts for less than a year. We had chatted about Charleston after I shared that one of our daughter’s lived there. We had talked shop about photography. He once wheeled away and whizzed around the hallways to track me down and proudly show me a Shutterfly book comprised of his most recent photos before the disease took over.

John had been somewhat mobile upon entering Arden Courts, but soon enough, his body began whirring through the stages of his Parkinson’s. He had experienced a few falls because he wanted to get up and out. John was now limited to a wheelchair, but strong enough to wheel himself around and up over the humps of the threshold to the outdoors.

John trailed us and tried to explain his situation with Mom and I. Mom, who could not hear well, let loose a torrent of nonsense, frustrated because of her impaired hearing and comprehension. She was also prone to possessiveness, but I had no way to prove it.

Finally, Mom tired out. She zeroed in on a chair to my left. I guided her to a seat. In an instant, John rolled alongside. He wanted to hold Mom’s hand. That was just a very John thing to do, to try to calm Mom down and speak to her.

He peppered me with more questions while explaining his last wish was to travel to Charleston. Due to his arresting speech patterns and Mom’s interruptions, I was fuzzy on the details. Did he wish to stay in the South throughout the duration of his life, or did he simply want one more visit?

With tired eyes, I stared into his lint grey-blue eyes, eyes that once ran deep as the ocean when I first met him and he asked me out for lunch. I didn’t know his family, though I had cursed them under my breath for no reason. He possessed a computer and wanted his speech recognition software to function. He insisted that his brother was working on it, but I didn’t know what to believe.

John panted, desperate to tell his story before his story stayed buried in the sea of memory. He wanted to be with his son, who had been at the Citadel. However, if my memory served me correct, his son had been transferred to Oklahoma or Texas. But that was my memory…

I encouraged John to talk to the staff about the lawyer. If he had the means, and if his family was holding him back, I wanted him to have the chance.

His story stuck to me like a wet leaf leftover from a rainy day. I researched “make a wish for old people”, though Jim wasn’t old. And there was a program that existed, the Dream Foundation, “giving life to final dreams.”

IMG_3575In 24 hours time, I would be standing in my “last wish” place. The place I want someone to drive me to, and seriously just leave me there. It would be the last and only item on my bucket list. If I accomplished nothing else in this life, it would be that.

However, my mother’s last wish was unknown. I often thought hard about that. She was mostly if not always about her children, her food, and a little peace and quiet. Last wishes always seemed tinged with regret. But Mom wasn’t a regretful person. Her last wish would most likely be a final dinner prepared with her five children surrounding her, no fighting, no arguing, everyone arriving on time.

IMG_3695I can’t make John’s last wish come true, but I’ll keep asking. Maybe, I’ll conjure up a time for Mom when she could expect her children to act like “normal human beings”.

Human beings who want a life that is relevant and remembered, the comfort of family and food, and a place of rest that perpetually reflects who they were before a disease ravaged their person.

 


From our Memories in the Making session:

Our Cars: Memories in the Making

I.
Metallic green on green Chevy Nova.
A turquoise ‘56 Ford.
Six of us in the station wagon—
a not so fancy car.
The ladies got to ride in my rumble seat.
That’s what it’s for.
I rumbled all night.
I had a Chevrolet. It broke.
My favorite car was any that worked.
I married a mechanic, you see.
I never rode in a car when I was younger.
I paid for my own first car
and never wrecked it.
It was a pretty small car,
the smallest Ford I could get.
I had to have a convertible.
I think that’s why we got married—
my husband wanted a Ford Mustang
and he couldn’t afford it without both of us.
I went to Theis Motors in Reading
to buy my Chevrolet.
Remember the Twin Drive-in in Bond Hill?
It was a requirement to sneak in.
Who knew how much it cost.
We had more in that rumble seat
than you can imagine.
There was always room in one of those cars.

II.
Are we there yet?
Cumberland Falls. Virginia. Wichita, Kansas.
Driving through the storm in the basin of California.
Where I grew up was flat,
the Red River where it flows
into the Mississippi—
the rivers and the swirling highways
is the most of mountains I got.
We went to my mother’s family in Virginia once—
after that, we said, come to us.
The car was the only place
my dad didn’t know how to hit me.
I was one of those kids.
In the car I was safe.

III.
Driving through the mountains,
the windows open,
listening to the wind.
Sitting around a nice fire
watching the night sky—the stars
and only the sound of the animals.
Once we went camping
and he said, when we get married
you’ve got to make me do this.
And we never did it again.
My wife drives more than me.
She drives me crazy.
My husband taught me to drive.
He’d always park me on the hill,
and I’d panic when it would roll back.
I never was good on the cars—
how many I drove into!
Once I ended up flat in the mud—
my son and all his friends went quiet.
That was my introduction to Cincinnati.
I’m still here—stuck in the mud.

IV.
So many road trips I’d still like to take.
I loved driving in the car.
I still do.
I just like going, driving—
it’s a form of meditation.
Now we are moving on
to children and grandchildren
and lots of memories.

From participants in Memories in the Making with Annette Januzzi Wick, Pauletta Hansel, and Joan Hock of The Alzheimer’s Association of Greater Cincinnati, September 14, 2017. (Composed by Pauletta Hansel)

 

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Writing as Daughters, Healing as Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

IMG_7217Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.

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Filed under alzheimer's, dementia, healing, Uncategorized, writing

Writing and Healing as Daughters and Writers

Pauletta Hansel and I sat as facilitators, at the front of the conference room in the Cincinnati’s offices of the Alzheimer’s Association, facing participants for a workshop titled, Writing Our Lives as Caregivers. Both of us were grown daughters of mothers experiencing dementia.

But Pauletta and I had first known each other from a different life. One grounded in writing. I was new to writing then. And new to an organization called Women Writing for (a) Change. I was also new to grief. And single motherhood. And the arts, as my previous training had originated from a technical background and multiple cancer floors.

But I needed something to sink my teeth (or pen into) and found how much I not only relished the writing process, but speaking and sharing with others about writing brought about healing for myself.

It was by some surprise then, that I found myself nominated for the board at WWfaC, with Pauletta at the helm. I was even more surprised that she nominated me as an “energetic volunteer of the arts”, profiled in the newspaper. I felt rewarded, not necessarily for something I did, but for something I felt.

Years later, she and I were grounded by our mothers. But we were still writers. In fact, Pauletta as the Poet Laureate of Cincinnati. And I, a blogger on the topic of dementia, with a few smaller publishing feats under my belt.

In recent years, our individual work had evolved. The work was from us, but not always about us. However, as we began plotting out our circle, Pauletta had suggested we use our own writing as prompts to move participants towards their inside words. I was surprised. I had never used any of my work as a model for others to emulate. But I knew, as a writer, we must know when to show the way.

What was the best way to demonstrate writing about loved ones with dementia, instead of telling them? Yes, showing them.

Thus two of our poems acted as the impetus for many, many words in that workshop. Ironically, my best writing that summer day originated from one of Pauletta’s poems.

In the best of Mom’s moments now, she smiles. A broad, I know you because I have loved you, smile. It is that smile I always carry with me, for those “other” days, of which there are plenty.

I don’t recall her smile so much when I was younger. In the grainy photographs of Mom, images have melted back into the ink. A regular utterance on any family vacation was, “Ette, do you have the camera?” Or “Ette, did you get a picture of that?”

While she demanded my father carry the camera, change the film, and snap the picture, she never wanted to be the subject of his frame. She would duck away from the lens or out of sight.

If she became the subject, her smile often appeared forced, painted on like lipstick. Those were my memories of her in black and white, and Polaroids.

Ironic now, a shift in media has brought more vivid colors, more clarity as I capture her. In tandem, she smiles more. She has let go of a certain consciousness about her appearance – her hair, her nails, her style of dress. Mom’s smile now comes from a place deep within. When she first sees me, she lights up, even if in the next moment, she begins to yell again.

IMG_7217I experience my mother as joyful (not happy, that emotion seems fleeting). Her pudginess gives way to the youthfulness of a four- or five-year-old. This is how and when I remember to love.

As we closed the writing circle that day, more tears had been put to paper and more joy had replaced the tears. The workshop also brought a demand for more workshops like it.

In the interim, each participant was asked to contribute two lines to a group poem. Gifted with an ability to see patterns in others’ words, Pauletta crafted this touching group poem.

 

For As Long As We Can: Writing our Lives as Caregivers

There is much more hurting than healing
in our lives right now.
An incredible sadness.
Robbed of all this time,
many years, with my mother.
I let go of the colorful gal I once knew;
now her words cut through me like a machete,
leave a hemorrhage like no other.
All this before I even sit down.

I want so desperately to believe
God has a miracle for my dad,
for my beautiful Gina, in beautiful Bermuda—
how I would love to take her again,
away from the tiny world she knows
—and the bitterness of that impossibility.

I hold to every word, to every syllable,
to every streak of black
remaining in Mom’s soft white hair.
I know I am still her baby girl.
I cling to my old memories.
I don’t want it to change, but it does.

But then, a conversation—mother and daughter.
Mom hunched her shoulders
and walked in a silly way, making me laugh.
She doesn’t need that jacket on,
but she’ll wear it anyway,
singing “76 Trombones” and I join in.
It takes her a moment to connect
my place in her room
with my place in her life.
I know she is in there.
She looked in my eyes; I let her love me.
Mom was back,
but not for long.

The touch of your hand—unnerving,
unbounded by time.
At Mirror Lake in Eden Park
the air had cleared,
the colors of sunset filled the western sky.
Tiny blue gills swirled alone in lazy Van Gogh circles.
Heads together, giggling like conspirators
and wishing for more.
I am still comforted by your touch.

Moments—come and gone—
that would not have been
had we not been present.
Engulfing moments unborn, unknown by us.
A salve to put on the wounds part—
the baggage of the day
and my beat-up body,
the parts that broke,
under the pressure of loneliness.
I breathe deep until the next time;
I sink into the car
and think about doing it again tomorrow.

The contrast—the leaving,
the spent memories so different,
so contrary, so final.
Or maybe not final,
maybe this too will change.
I hold her strength, yet I cannot find her.
The joy we had, the hope
and promise of things to come.
I want to believe.
I cling to these prayerful words:
Relax, you are safe.
I will be here for you—not forever,
but for as long as I can.

 

I have high hopes the Alzheimer’s Association, and other organizations, will continue to sponsor similar programs that use writing as a tool to mend. As a society, we don’t need more pills, just a few more pens and poets who can lead the way through the heart, even if the mind has already let go.

I can’t speak for Pauletta, but in that workshop, we sent the participants off on their day not as spouses, or siblings, or adult children. Not even as caregivers. We sent them off as writers, in hopes they could mine with their words what the mind could not grasp.

2016 From Memories to Moments-FINAL-3-page-001Send an email to Annette Januzzi Wick for more information on writing workshops for caregivers, individuals experiencing dementia and other related topics. Information on her upcoming workshop held in September – From Moments to Memories can be found at Women Writing for a Change.

Visit Pauletta Hansel for more information on Cincinnati’s 2016 Poet Laureate.

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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 Respite from the Mind

FullSizeRender-21“Where’s your mother?” Dad would mutter as he wandered inside from the shoe store business or traipsed upstairs from his shaving room in the basement.

“Out there,” one kid with a mouth full of cookies would respond.

“Where’s Mom?” another kid might inevitably ask, when he or she wanted to stay out past curfew, take Mom’s Chevy Caprice or be driven to a sleepover.

Whatever kid was still in the house would answer. “Out there.”

“Out there” meant in the sun. My most vivid memories of Mom are as she was seated outside in the wash of warmth.

Summer days in Amherst, Mom often shooed us all out of the house and my siblings and I would ride our bikes to Maude Neiding pool. If one kid wanted to stay home, Mom demanded to know why. She wasn’t really worried if we were sick or had fought with a friend who also might appear at the pool.

No, Mom wanted us out.

Mom herself had little interest in sunning at the pool. I had once thought her attitude had to do with her modesty, but now I imagine her approach had everything to do with kicking us out of Ridgeland Drive and shipping us off so she could have time in the sun to herself. There, Mom could pull out a frayed vinyl folding chair and dangle her feet in our plastic kiddie pool which sloped in the backyard just enough to create a “deep end” for grass floaters and her toes.

As we grew up and our family moved to Lincoln Street, Mom could still be found outside when the weather warmed and even when it didn’t. When we moved, we had brought a few old folding chairs with vinyl straps shredded to near destruction. Mom took one of those chairs and moved it from the front porches to the back patio like a sundial.

When the sun pushed up the morning in the front of the house, Mom could be found seated in the front yard, presumably telling my father he had planted the geraniums too close together, or that there was a shred of mulch or white rock out of place.

When the sun gradually faded to afternoon, Mom followed the path of its rays and moved the chair to the back of the house, where the truckers driving by on Route 2 would honk and wave. At that point, she wasn’t wearing any sort of bathing suit, just her everyday clothes, but truckers beeped nonetheless.

About five years ago, when Mom came under my care, she and Dad lived at The Lodge apartments in Loveland on the third floor. The balcony overlooked a wooded area which padded the view from a busy Montgomery Road, but the sun always poked through, even if in splinters.

The first afternoon I viewed that apartment, I had thought to myself, “How perfect.” The sun would slice right through for Mom onto the small deck and into an even smaller living space.

So a second set of plastic chairs was transported 210 miles and placed on the deck of their abode at The Lodge.

Later, as I arrived to visit Mom and Dad at The Lodge, and attempted to coax Mom onto that deck, I discovered she had become afraid of heights. That, after her dementia had cozied up alongside her life. And that the plastic chairs hadn’t been used since the transition from Lincoln Street.

Those were the saddest days with my mother. Mom’s new living space had kept her prisoner from relishing in the out of doors in the manner in which she always had. I committed extra visiting hours just to escort Mom to the ground floor outdoor spaces where she could soak up her sun but not wander off.

While Mom had lost her ability to scale new heights, she never wavered in her desire to follow the sun. So when I took to writing and exploring my circuitous journey with Mom and her dementia, Mom’s fervor for warmth and summer came to mind.

When naming my blog, I first started using, Lost to the Summer Wind. Being that I am a purported expert in writing about loss, according to my husband, the name was apropos.

But time elapsed. Mom changed in her disease and so did my outlook. I wanted to write from the vantage point of loving and learning. A viewpoint that really represented our relationship. A perspective that offered a brief interlude from her disease.

Countless lines from Mom’s Sinatra songs had been woven into our partnership, but none stuck in my head more so than these:

I’ll find you in the morning sun / And when the night is new / I’ll be looking at the moon / But I’ll be seeing you.

When the month of March finally arrived and Mom had persevered through another winter, one where she didn’t have to drive or shovel or go outside at all, I knew it would only be a matter of time before I discovered Mom relentlessly pushing on the arm of the secure doors of her care home, being called to go outside.

For a time, the doors remained locked. The cold temperatures still seeped in, snow occasionally fluttered around, and the rains of April and May had turned all the flowers soggy.

But now, when I enter my mother’s care home, I knowingly ask, “Where’s Mom?”

I am met with a familiar nod of the head towards the out of doors, towards the sun. Or, if Mom hasn’t made her way to her personal solar system, then I coax her from inside.

During my last visit, she used a few choice words on me, for no apparent reason (which is typical) yet finally, I led her outside. When she and I approached a bench in the sun, she just sat down and uttered, “Oh there it is.”

Sun has always been a respite for Mom. And now, more so, as a hiatus from her disease. In the sun,  Mom can pretend she has shooed those aggravating kids away and dangle her feet in a pool of summer scents. And relish in this reprieve from her mind.

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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

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Hugs Not Hikes

Every year, I say, “I’m not gonna do it.”

Register for another walk, another march to “end” a disease. Another two-mile jaunt with balloons, strollers, drawn-out faces or heavy breaths. Another fundraiser where one can secure a FAST PASS, meant for the elders perhaps, to the front of the registration line or be handed a bag of goodies for sponsors or items not needed.

My mother’s condition was never diagnosed as Alzheimer’s, based on scientific testing, hers was of the slow-slide dementia variety. But there is no “walk for dementia awareness”, so naturally most efforts fall under the Alzheimer’s category, because its an identifiable name.

FullSizeRender copy 10“I’m not gonna walk, to end Alzheimer’s,” I say, as I sit with Mom these days, and wonder how she is still here, when her present lasts only seconds and her past does not exist. Then she glances at me, and smiles. Mom’s is a child-like smile, unlike any witnessed in younger, more somber photos of her, as if not wanting to participate in the ritual.

Mom’s smile causes me to gasp, especially when she says goodbye to my son, off to college. He won’t see her until Christmas. She is seated in the sunshine on a worn wooden bench in full view of the burnt orange mums recently planted, and the fountain which will be turned off soon, its gurgling gone away. My son leans his lithe body into her and gives one last squeeze. Mom receives the squeeze with grace.

She reaches up, beaming. “Goodbye, sweetie,” she says, brushing his cheeks with her still soft hands, as if years of Jergen’s lotion really did the job. I am near tears, remembering how she used to cradle a five-pounder in her arms. Nana’s little snuggler.

“I’m not gonna walk this year,” I think, noting her stature has shrunk now, following two seizures, which impacted her posture. She has a permanent “lean in” which would make Cheryl Sandberg jealous. As we stand and I try to straighten her, l lift her arms past the shoulders and tell her we are practicing sun salutations. Mom would kill me if she knew this was yoga.

She wobbles to keep her balance while I support her arms overhead. Then, she really leans in – to me – and nestles into the crook between my head and heart. She has become the snuggler now. Clutching, grasping, patting my back.

“I’m not gonna walk this year,” I tell myself, then encounter the brave caregivers who stroll corridors with or chase down Mom and respond to her every need. Or I am met with the real, live bodies of other residents in mother’s care home. With Jim and Ella, I am discussing the pope. “Well, I haven’t seen him in a while,” Jim says. And Ella says, “I really haven’t been watching television,” despite my last visit when Ella was in the room while we were watching news about the pope’s upcoming visit.

“I’m not gonna walk,” I say. Then Matty smiles at me while eating a late lunch or early dinner, as I spy her through the window of her dining space. She rarely is without grasping the arms of a male, whatever male is in her reach, to lead, coax, sit with or share. I wonder what her marriage must have been like.

Then I sit at lunch with Madge, and she says, “Everybody get out of my house.” And  I’m ready to high tail it out of there, given her mood shifts. But I don’t.

Or I place a red cowboy hat on Sue Ann’s head, for “cowboy day,” knowing she used to listen to Johnny Cash and Dolly Parton. She giggles and hums.

“I’m not gonna walk, “I say. Then, I’ll lead Mom around her hallways, occasionally attempting to move her outside because it’s warm. She is reluctant because if the sun is not out, she doesn’t consider the temperature warm.

To exit, we have to dance around Gerry, the caregiver, and another resident, Karen. Karen’s young life at age 60 was once full. It still is, only now her days are spent walking, walking, walking. She never sits long, not even to eat. She is thin, worrisome on her best day, agitated on her worst.

“I’m not gonna walk,” I think. Then Karen’s eyes light up when she spots me. I hold her in a long embrace. Karen has a grip on me and I am OK with that, despite Mom’s impatience. “C’mon, c’mon,” she chides, moving me out of her way.

I wish this walk wouldn’t use such an impractical phrase as, “Walk to End Alzheimer’s.” The writer in me believes the slogan feels more like a gimmick than goal. But what I really want is for walks to be replaced by hugs. Hugs to raise money. Hugs to end our fears. Hugs to “lean in” to the nakedness and vulnerability we have all felt at times. Hugs to remember the humans inside each of these creatures that look, sound and yes, even act like the rest of us.

Regardless, this year, I’ll walk.

But next year, I’m gonna hug my way through the day, knowing that fierce hugs ignite a brain in a way medicine and marches cannot.

 

 

 

*All names, with the exception of Mom’s, have been changed.

 

 

 

 

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