Category Archives: arden courts

What is the Definition of “Meaning”?

This is the second in a three-part series after Mom’s fall.

Mom Headphones Outside“You gotta have heart to do this job,” Sieta said, while I spooned oatmeal through Mom’s pursed lips. Sieta was one of Mom’s caregivers and her long braids, like those of an African queen and topped off by a bun at the crown, swung in the air as she turned away to pour Mom a glass of juice.

On a low dose of pain medication, Mom chewed and swallowed through a bit of a fog. At the intersection of pain medication for comfort after a hip fracture versus a state of constant wakefulness and distress for my mother, I had turned to the drugs.

And now I wondered about the meaning of Mom’s life. How would I define of meaning? How would Mom? And how would the assembly of caregivers who surround Mom and fuss over her every need?

After Mom ate breakfast with syrup on everything, I wheeled her into the courtyard. The day was warm with rain just spittin’. In her other state, my mother would have been yelling at me. But now, Mom didn’t. I giggled a bit. I was getting away with something.

Having obtained my driver’s permit for her unwieldy wheelchair, I now steered Mom outside at all hours. I fed her breakfast in the dampness of morning. And lunched with nippy ants crawling over our arms and legs. Wherever Mom was, wherever she was going, I wanted her to have sunshine and fresh air for the journey.

Did that give meaning to Mom?

I returned to the quandary, the theories my husband and I had been batting about all week. Was Mom leading a meaningful life?

Would the honest answer be, “No. No, Mom was not?” But that didn’t mean Mom’s life wasn’t meaningful, I reasoned, as Sieta’s words about her heart floated back into my head.

In the days after Mom’s accident and subsequent confinement to a two-wheeler, I cried and hugged the caregivers every time I scurried in and out of Mom’s room, the kitchen, and the outdoors. I thanked each woman—and they were all women—for whatever they had done, for whatever they were about to do, especially as it related to Mom’s bathing and cleansing, self-care had been utmost to my mother.

I had always shied away from writing about Mom’s incontinence—out of respect for her. Over the years, Mom underwent several surgeries and owned a digestive tract that never cooperated with what she wanted to eat. And she always wanted to eat, except those days of the grapefruit diet.

But many of her early years with dementia were spent in shame after soiling her clothing. Her condition was the cause of much hardship for my father and sister, Jeanne, for Mom, and anyone else who cared for her. Mom and I often found ourselves twisted and tangled in a cramped bathroom stall of a Bob Evans or McDonald’s or even in my own home, trying to change her pants or socks or shoes, eventually transitioning to disposables when Mom no longer understood the changeover.

As Mom’s dementia worsened, so too her brain lost control of her digestive organs. If I could have taken one thing away from her in all this, it would have been that embarrassment. I would have chosen for Mom to keep her dignity. In the end, the dementia did offer that.

Yet, never once had any caregiver of Mom’s complained. They jumped or rushed to change her clothes to keep her comfortable. Not doing so would lead to UTI’s that led to seizures that led to…that led to…

Back in bed, Mom lay with legs curled, unwilling to extend them for fear of hip pain. I observed Janice and Angel as they bathed Mom’s ninety-year-old body. Her shower would come tomorrow with hospice help. For now, warm, worn washcloths tickled mom’s tummy and her short arms and the legs she kept pulled in to her core. It was most sacred what I was watching, as Janice ran the cloth along Mom’s legs, under her arms, beneath her single breast, and Mom opened herself up to this practice. Inside myself, I melted. To witness Mom be so vulnerable, surely these women of Arden Courts were angels.

A former boss of mine once said, “Never ask anyone to do a job you wouldn’t do yourself.” And that had been my mantra for Mom’s care. Yet there were legions of those who had performed the job nobody else would do.

Mom and Janice

Janice. With Mom as she ate Italian Love Cake for her 90th birthday party.

Like Janice, her face showing worry, who tells me to text her while she’s on vacation if anything changes with Mom.

Or Kre, who grins, her white teeth gleaming, and leans into Mom’s face. “Hello Mamma,” she says and Mom beams back.

Or Lakeisha, who was once a caregiver at Arden and now visits Mom as her hospice person. Mom lights up in Lakeisha’s presence and her sassy attitude.

And when Jayna and I last spoke, she was upset at not being able to change her charges quickly, yet there are those who lay about all day, soiled, in other care home settings.

My mother was best at mothering and the women here—Jayna, Kre, Lakeisha, Janice, Becky, Cleo, Valerie, Suzy, Sieta, Angel, Tiffany (and so many other givers of care in charge of one woman’s body and mind) —had been like daughters to her. I so desperately wanted them to know another Mom – a different one – yet they had been content to love and care for the one in front of them. While we as family or loved ones might have felt as if Mom’s humanness had been diminished, her caregivers still saw her growing as a human being.

Janice plated the meal for lunch, ladled gravy over the potatoes, knew who wanted cereal for lunch instead of chicken, who needed ketchup or Diet Coke, who still required sleep and who just needed to see her serene face.

“Here you are my friend,” Janice said with somewhat of a southern accent on friend. She set the plate on the table. Mom gazed up at her with the adoration of a second-grader taking communion. Mom used to echo, “friend,” back. She will again.

Janice was truly a beautiful person and the first word that came to mind was duty, but her actions more described devotion. And while I bragged Mom was one of her favorites, Janice lavished on the residents the same love and attention anyone would wish for when turning 84, 92 or 103.

And there was one other dutiful one.

On Mother’s Day, I woke to a touching email from Becky, the activities director at Arden Courts. She was one of Mom’s many. Over our chats, Becky and I had determined that she arrived to work at Arden two months after Mom. She had also witnessed my struggle to cope with Mom’s recent captivity.

Happy Mother’s Day. I am thinking of you today and standing with you in spirit. I read the blog today. I don’t know what your particular spiritual beliefs are, but my experience as a witness to many last years of living is that, far beyond the time people are able to communicate, they are able to love and accept love. Your mother has been absolutely blessed by the fierce, unwavering, unconditional love you have given her in the time I have known you both. Please know you are not alone. Lean on those people you trust. Take care of yourself. I’ll be there- Janice will be there- for your mom through the end. 

The email was proof of the commitment of the women at Arden. Proof that we were all capable of loving from a place with no genetic strings attached.

So what was the definition of meaning? Something intangible that knew no bounds?

Mom clamped her lips tight. Lunch was over. I handed in Mom’s plate like a kid in a junior high cafeteria and reported on her consumption.

Was Mom leading a life with meaning?

In 2004, when Mom underwent hip replacement surgery, she cooked her meals and froze them before surgery. Now, in her weakened state, she required more care than ever before.

If this end is not what I wanted for Mom, then the best I could hope for was Mom had been welcomed, raised, and loved by the women of Arden. Her life had given others work filled with meaning, and a heart filled with love.

 

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In Her (Virtual) Shoes

IMG-5963Rubbing hands in the drafty Roh’s Café, my fellow writers scribbled across blank pages, responding to a prompt related to Connor Oberst’s Desert Island Questionnaire song.

I wrote down shoes.

My answer is always shoes. A byproduct of the trade, leftover from the family’s days in the business.

I would abscond with the perfect pair of sensible, but fashionable shoes. Flip flops I could sew out of animal skins. Boots, too. But those fuchsia suede ankle booties? I would escape with them.

A new writer to our circle offered a vastly different response. Russell wrote, “I’ve been thinking about VR in geriatric care…..how you experience reality….how deep can someone be immersed.”

And there we sat, awed by the magical nature of writing prompts. Magical in that his words didn’t surprise me. I too had been thinking about virtual reality, in particular, Mom’s, after observing her earlier in the day. Stranded as she was on another shore, I imagine Mom would carry only memories to a deserted isle.

I had been researching VR in the dementia field for a while, ordering Google Cardboard goggles to play around with the notion. In digging around through various site visits, I discovered the way back. Actually, The Wayback.

In the dementia field, social workers believe triggering memories of joy in one’s life can translate to a sense of peace in the present moment. Many care homes and family members already use various props and pictures to do so. Virtual reality extends that practice.

According to The Wayback website, the project’s mission “will be a series of virtual reality films that faithfully recreate popular, positive moments from our collective past – taking the viewer back to a familiar time and immersing them fully for a few minutes using Virtual Reality.”

Based in England, where most dementia work has been breaking ground, the first Wayback film was developed around the Queen’s coronation in 1953. Exact scenes have been recreated and a viewer can explore the entire experience, complete with graphics and sounds, from various angles using VR technology.

Any viewer can watch this film via Youtube on a mobile phone, or through the use of Google Cardboard goggles.

According to one expert, Dr. David Shearer, an expert on Dementia Care Matters and host of a TV series, Dementiaville,”We are all made up of our emotional memories. As we experience dementia our world seems to shrink – holding on to who we were is a way to hold on to who we are now. Anything that offers the opportunity to connect and be reached is strongly welcomed.”

The overall aim of the project is to create a series of films from various decades that speak to the lifetimes of those experiencing dementia.

When Russell read his words in the café, my world of shoes and his of VR collided across the community table. Long after our writing circle departed for our warmer cars, I reached out to Russell and shared with him about The Wayback.

Russell responded, “WOW. That article encapsulates a lot of my curiosities and hopes about VR. The idea of reliving something to jog memories, etc. I have a more morbid fascination with it too — this idea of losing oneself in VR…what weird psychological issues could arise if someone who is wheelchair-bound or something spent 12 hours completely mobile in VR, then had to come back to their not-so-spry body in reality? Would it be overall beneficial for end of life care? Or would it be depressing to have the option of VR but with the requirement of coming back to your real body?”

In my head, I too often shuffled through other sensational salves for dementia, such as The Wayback or Russell’s notions of losing oneself.

Through the Youtube app, I had watched the Wayback film and a few frolicking dolphin clips all with the Google Cardboard. I grasped the fascination. And I struck upon an idea that expanded on the vision of The Wayback.

When my husband and I toured Havana, Cuba, our itinerary included a social program visit to the Art and Film Institute. We learned how a stop-motion film was made. It was a dreary, but pointed, film about domestic abuse and the film won several awards. A stop-motion film is created via the building of a set comprised of objects and characters, animating the objects and characters one frame at time, and moving and filming them again. It is a long, pain-staking process.

That process tied into The Wayback. And to Mom.

Could I reconstruct a life from scraps of my mother’s belongings? I possessed Mom’s Dumas cashmere coat and her black purse with gold clasp, some old broaches and Christmas tree earrings, several of her Christmas decorations. I also retained her crème ceramic bowl in which she mixed her cookie dough, her flour sifter that still has a speck of flour from 2010 on it, and her cook book collection that ranged from the Joy of Cooking to The New Zucchini Cookbook (she had two). To that end, in my pantry, I stored several of her metal cake molds. Who doesn’t remember Mom’s bunny cakes? She baked shaped cakes for all of us, mine without the coconut fur. She baked a cake every year for Davis, in shapes ranging from Scooby Doo to Bob the Tomato and Larry the Cucumber (Veggie Tales).

With Mom’s personal pictures and objects, could I recreate an hour out of a day in 1975, when my mother would relish the quiet while all were at school and she turned out cookies by the dozen?

Or a significant Christmas, one in which Dad engineered his trains to run beneath the ping pong table or hung the Christmas lights in a straight line, or all Mom’s kids were at her home, having schlepped their bags from the far corners of Ohio or Oregon. Or an evening with all the grandchildren present and superimposed.

Could I reconstruct the two-story colonial home on Lincoln Street, the home that filled Mom with pride? Would she wilt under the weight of the expectation of having to clean it? Through graphics, could I rebuild the ranch on Ridgeland Drive complete with flooded basement, where Mom always proclaimed, as a family, we were happier because we were closer together if happiness meant three girls housed in one bedroom? Would she wait at the back door with Swiss Miss hot chocolate, after we sledded down the hills of the sanitarium?

Through the charmed viewfinder, Mom would be encapsulated in the life she lived. Would she find comfort there? Could she return from that moment to the one right in front of her, where she does not recognize those around her, and still find joy? How long would that joy last? And what would three minutes of stop-motion animation be worth?

Playing that line of thinking out to its bitter end, would the project travel back further in time before Mom chose Dad, or chose marriage over work. Would she have chosen otherwise? Would this leave her with a pang of regret to transport into the present? Would that be considered mind manipulation and who then becomes the POA for a mother’s memory?

Imagine an app where I could view that film of Mom’s time, as personal as a pair of worn shoes, form fitting, evidence of her life and style choices, maybe a chipped heel in a nod to journeys taken. A film that responded to a memory Mom would have carried to a desert isle, more precious than a pair of shoes.

Say that you were stranded on a desert island…

Shoes would still be my answer only because I’d name the VR app InMyShoes. But I would skip the fuchsia booties, maybe kill a rabbit or snake and sew myself a pair of sandals. And replay over and over Mom’s memories stowed away on that sandy shore.

 

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What Makes for a Good Day?

(https://findyouinthesun.com/2017/11/17/what-makes-for-a-good-day)

 

Mom CatchlightI hovered behind Mom’s chair while she sat at a four-top kitchen table branded with grape juice fingerprints. She pleated a white nylon napkin and the napkin refused to hold its crease. Over and over, Mom dragged the side of her palm across the napkin as she had done for many years with tatted pillowcases and Dad’s dress shirts.

Is this what the famed surgeon, Dr. Atule Gawande, had in mind, when he asked, “What does a good day look like?”

Dr. Gwande had written a New York Times best seller, Being Mortal: Medicine and What Matters in the End. I never read his book. I had lost a loved one out of chronological order and already knew what mattered.

But the doctor had returned as guest on an On Being podcast, and the question, What does a good day look like, a question that transformed his practice, now played like an earworm worse than my mother’s Sinatra tunes cycling through my brain.

Thanksgiving was nearing in Mom’s care home and leftover lunch scents of turkey and gravy wafted up toward the ceiling.

I swung my body around to peer into Mom’s field of vision, a field rapidly diminishing. This summer, Mom began to point her nose down, most often as she walked. I thought her back was giving her fits, or, at 4’ foot 7”, Mom had shrunk again. But in dementia, loss of peripheral vision was common. Her perspective had been altered not by choice but by disease.

“Hi,” I said and closed in on Mom’s face.

The caregiver had just given my mother a shower and notes of lavender and almond oil emanated from Mom’s skin.

Staring at another resident or the inaccessible, frosty outdoors, Mom pinched a portion of stuffing and dropped a blob on the floor.

“Hi,” I uttered again. As I spread my feet apart to lower my face to hers, my boots slid across gravy puddling on the floor. “Ewwww.”

My outburst cut through her fog.

“Hi.” Mom’s tone was flat.

I leaned over and enveloped Mom in my fleece jacket.

She pushed my arm away and my purse slipped off my shoulder—into the stuffing.

“What do you want with that? Oh go on. Don’t do that. You should when you…” Mom’s loud rant caused heads to turn.

To the average person, Mom’s utterances made no sense. To me, her gibberish translated to, “Don’t hug me. I’m not in the mood.”

Mom’s outburst continued. “No, I mean that one.” She jabbed a finger into the air, judging another resident who had knocked a plastic puzzle piece on the floor and shattered the silence that was more jarring during meals. Mom always reproached other residents for looking, speaking, eating, or living.

I had rushed to visit Mom between meetings and a car appointment, plotting my route to include a stop to see her. Now, I stepped back to take in the whole of the scene playing out before me.

Dr. Gawande informed the interviewer how people in the end stages of their life possessed priorities beyond just surviving. He recounted a story of a woman who would die 48 hours later. She had asked if she could take her grandchildren to Disney World. But it was too late. The medical community had missed her wish by planning for what the doctor could fix and not implementing other notions to support her well-being.

Dr. Gawande defined well-being as: the reasons one wishes to be alive.

I had overseen my mother’s care for five years and longer, if I counted the years she had hidden behind the haze of dementia. Over the course of windy blog posts, pealing laughter, and unstoppable tears, I pondered what were the reasons Mom wished to be alive – other than to torture me.

On occasion, I entered Mom’s memory care home and was forewarned by staff about Mom’s mood, only to find her in a lighthearted disposition and joking about playing kickball inside while another resident screamed out, “Kickball is an outside game.”

Other times, in the exact same setting, my hopes were dashed by my mother’s moods, which, like a Ferrari, went from stillness to growling in ninety seconds.

And so, my mother was mortal, but she was not dying in the traditional terminal sense. It was more difficult to answer the question, “What does a good day look like?”

Taking her grandchildren one last time to Disney World, which could be accomplished only through the feat of virtual reality?

Reading one last book of Erma Bombeck’s or watching How Green is My Valley or Cat on a Hot Tin Roof with Paul Newman one more time?

Rolling out her revered ravioli to the precise thinness to not explode when slipped gingerly into the water, pushed ever so slightly under the roil, and lifted out with slotted spoon and coddled with homemade sauce?

Those events would happen at a conscious level for which Mom would have no grasp of the joy or meaning they might carry.

I wriggled Mom’s chair out from beneath the table.

She squeezed my hand and gritted her teeth. A grrrr rose out of her vocal cords.

Like a mechanic jacking up a car, I lifted her up through carefully placed shoulder anchors and footholds.

Slowly, Mom straightened. One foot followed another until she was erect and on her way. Her legs picked up speed.

We traversed a third of a mile that afternoon.

What does a good day look like? For eight hours with one caregiver, the day appears maddening. For another set of eight hours with a different caregiver, the time is filled with joy. But what does a good day look like for a family member with an overwhelming responsibility to figure out what a good day is for someone else?

I wasn’t around in the years when I should have been asking those questions. I wasn’t the kid chatting about boyfriends with Mom over the phone. I was the kid who challenged my mother’s beliefs or reported for duty, and left.

My time with Mom ended an hour and a half later. I often berated myself for leaving when I had time available, but ninety minutes was heroic for those that didn’t actually work in the dementia field. It took pots of patience for me to cook up ways for Mom and I to interact in that stretch around the clock.

Mom reached for my purse as a handle and I stumbled backwards. “Here. Here,” she warned as I nearly backed into a fake streetlamp.” Translation: look out.

Finally, I nudged her back. We were caught in tug of war.

I was her gravitational pull as she scooted towards a bench and shot more invectives my way.

She plunked down on the tufted cushion where the afternoon sun shone low through the thinning oaks and maples.

I propped up Mom’s arms with two fringed, elephant pillows. Her feet, shod in black Velcro shoes, swung off the ground.

I kneeled in front of her, slowed her feet to standstill, and placed my hands in her lap. “Mom, I’ll see you later.”

“What’s that sweetie?” She tapped the tip of my nose with her index finger.

Did she really mean sweetie? And was the 90 minutes of haranguing worth one moment of this adoration?

Well, Dr. Gawande, it was.

 

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Cheering on Lives

68718I entered Arden Courts, arms loaded with a box of cookies. High-pitched vocals echoed through the hallways and I cringed.

From down the hall, a familiar voice rang out. “Your mom’s down here.” It was Becky, the activities director.

I nodded her direction. “Ok. I’ll just put the cookies away (meaning out of sight of lurking cookie monsters) and come find Mom.” I shuddered to shake off the shrill, but pleasing, notes drifting alongside me as I coursed through the hallways.

I let one of the caregivers know about the cookies’ whereabouts and sauntered towards the community center. As I closed in, the singing voices sounded more like, well, cheerleaders. Wasn’t it way too early in the day and my coffee intake for cheerleading?

I approached the doorway, glancing around the room for signs of Mom. At first, my eyes skipped over my own mother because she was squirming in a wheelchair. Probably to move her more effectively for the music show.

I entered the room from the rear. Blood pulsed through my ears as they were again struck by the voices of the woman crooning and carousing with the crowd of residents who merengued with shakers and tambourines to the tunes. A chorus of residents hollered, “You’ve got the cutest little, baby face.”

For a spell, I watched this spectacle and Mom from back of the room. Like the bouncing ball over top of old songs on TV, Mom’s eyes followed the bopping women around a room cramped with wheelchairs and restless residents.

Finally, the two blonde-haired women and their accompanist, one female singer and one male, stopped to catch their breath.

“Hi, Mom,” I whispered in her ear. I kneeled down and lifted her hands to help shake the plastic maracas she held. I couldn’t tell Mom to do so, because, well, she wouldn’t.

Hints of Me and My Gal floated around the room. I couldn’t move, mesmerized by the women and their accompanists with such chipper manners and the thinnest layer of makeup to enhance the joy they exuded and extracted. The two lead singers’ faces gleamed while they danced around in blacks tights and a purple sleeveless athletic shirt. They also wore something else. Contagious smiles.

Becky leaned in to me. “They’re former Ben-Gals. Priscilla, and Julie helped, started this group and they’ll be coming the next few weeks.”

Another resident wandered off and a chair opened up next to Mom. Settled into an oversized- transport chair, Mom wasn’t likely to meander. Each time Julie or Priscilla patted Mom’s arm or passed her by while dancing to Ain’t She Sweet, Mom’s hazel eyes grew brighter. She lifted her eyebrows as if in disbelief.

Over the course of an hour, the women met Mom’s gaze or that of the other residents with an intensity I cannot replicate. One ran her hands along the sleeve of Mom’s bejeweled shirt and Mom caressed the performer’s glistening cheek in return.

During the next song, Priscilla stood before Mom, holding and swinging hands. She was the true founder of Cheering for Charity. Priscilla’s mother passed away in 2008 from Alzheimer’s complications and Priscilla founded the organization shortly thereafter, to bring more life into the world of those with dementia or living in other care homes.

Still locking arms with Mom, Priscilla spoke her words to me. “I see my mom everywhere.”

I nodded. Her work had become about her mother’s life. That mantra I understood.

The pianist played a few notes, prodding the audience towards the next tune. “Shine on, Harvest Moon,” she serenaded the residents and the velvety tones covered the room in warmth. Then, I Want A Girl (Just Like The Girl That Married Dear Old Dad) followed.

Peggy, a petite and ebullient resident, stood from her chair and tugged at Julie’s sleeve. “Do you want to see the gal that married dear old dad?” Her hands shook. From between two tattered cards carried in her purse (many women carried purses), she pulled out an old-fashioned, airbrushed photo of her mother.

“She’s beautiful. She looks just like you,” Julie directed back.

Peggy beamed. “Everyone says that.”

I bent over the photo. “What was your mother’s name?”

“Margaret. Just like me.” Her chubby cheeks grew round.

After the close of the event, Leah, the pianist, handed me a business card. Later, I sent the group an email in appreciation for their gift of goodwill: My mother is not one to follow directions, so she won’t shake a tambourine for instance, if you tell her to, but I discerned, from her smile, that she found your presence a light in the midst of her sometimes dark mind.

I meant it. Theirs had been the rare entertainment with exuberant voices, a hop in their steps, glowing smiles, and a compassionate touch.

Only an hour earlier, I had sat in the parking lot, hands glued to the my steering wheel, debating whether or not to listen to the president’s press conference about the mass shooting in Las Vegas. My heart clamped down to prevent the flow of news. I exited the car and trudged into Arden Courts.

When I departed 90 minutes later, I faced the bleakness again, this time with more strength. There had been a catharsis in those moments with the cheerleaders. I used that term with the utmost respect.

I had given up cheerleading in ninth grade to tryout for volleyball (it was a win-win for many folks). Throughout the morning performance of Cheering for Charity, I had maneuvered my thoughts away from Las Vegas and towards my junior high cheerleading days. Getting stuck grabbing a basketball net while another cheerleader walked out from beneath me, and our seventh grade history teacher who tried to helped me down. Skirts flipped up by the boys seated behind me in Spanish class. The fact I could never do the splits, not all the way.

Many ah-ha moments often washed over me whenever I left my mother. Pressing the ignition button with my index finger, I hummed to myself. “I’ll be loving you, always. Always.” I tried to mimic Julie’s sweet tone. The memory of the glow circling my mother’s face lit up the interior of my car.

That particular day, the women had not only cheered on Mom to find a way back to the youthful lightness of her days. The group had cheered on the ever-so-small movements in the midst of a horrific maelstrom occurring 2,000 miles away. For forty-five minutes, I too had forgotten my despondence and joined in the chorus of cheering on lives.

AJW, 10/3/17

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Swipe Left and Right

IMG_0446I swiped left and right between the photos.

No, this was not on Tinder. This was in real life. Mine and hers.

Mood swings were at the top of my most despised moments with Mom. I didn’t hate my mother in that moment. I hated myself because I’ve yet to learn how to adjust to her fluctuations.

But in between those moments, was everything that was life and death.

When Mom was cranky or ornery, my first reaction was always UTI. Bladder infections were common occurrences in individuals experiencing dementia. The infections created moderate to severe changes in disposition. Thus, when Mom’s mood swerved and curved like an Indy race car driver, my first thought was UTI.

True confession. My very first thought is Mom is dehydrated. Then, UTI. And because a UTI left undiagnosed for too long could lead to complications, panic sets in. I track down the nurse, or a caregiver informs me the staff has already told the nurse. Then, we wait on a person whose incontinent. It’s really not an exciting time. One of the caregivers will take Mom to the toilet and turn on the running water, to encourage output, so to speak.

My mother would be horrified if she knew I wrote about and shared those challenges. But, I reasoned, she and Dad could have named any of their children POA. They chose the writer.

Back over Easter, I was leading Mom to the Easter egg hunt when we encountered the Easter Bunny. The bunny stopped long enough to hug Mom, but didn’t speak. Did the Easter bunny ever speak? Mom should have at least recalled that, I presumed. But alas, some memories did not cross the span of time and neurons.

The Easter Bunny’s muteness was NOT acceptable to Mom. Several times she yelled out, “C’mon. C’mon.”

Anyone could read those words on her lips, and in between the lines of her furrowed brow.

Eventually, the Easter Bunny disengaged its fingers from Mom’s, while I slid my fingers into the crusher’s hands. We traipsed down the hallway towards Easter Brunch.

The brunch passed without incident, mainly because I maintained strict oversight in allowing Mom access to the orange juice and extra chocolates. Confined to a corner near the window because of our tardiness and Mom’s desire for light, Mom spent much of her time watching the youngsters anxiously waiting for the hunt to start. One little guy told us all about being in second grade while boasting of towering over my five-foot frame. Mom muddled through with the occasional angry outburst because she couldn’t follow all the conversations.

When a seat opened up in the main room, I guided Mom to an open table where she had a better view of the children processing in and out, and out and in. Then, I grabbed the bunny ears and ladybug antennae and fiddled with each, placing one on Mom’s head (this is where I apologize to Mom), and one on my own head (this is where I apologize to my children).

And Mom lips parted, first in a slight grin, then like the Red Sea, ready to swallow up all the jellybeans and life before her. In the span of a half hour, she was content again.

I lived a thousand lives in between a good moment and a bad. Her voice, when at optimal yelling capacity, reminded me of days she didn’t separate far from her rubber spatula when discipline was needed.

Copy of DSCN1093 - softHer voice, when saying hello to new faces sprinkled with sunshine, rang through to my heart, resounding of ten days spent in Italy, when I took my parents twelve years ago. I had never seen my mother more radiant than in those moments in the square in Siena, mangiare al fresco, called out by a carabaniere, or holding court tableside with a carafe of vino della casa in Fiesole, above Firenze, with her Italian-American daughters at her beck and call.

In celebrating Eastertime with Mom, I experienced the rising and dying and rising again of Mom to beat another infection or crush a daughter’s disposition.

Lately, at Mom’s care home, several residents had died due to falls or the natural cycle. Despite having spent countless hours in this setting, I never knew how often one could contemplate the shaky nature of our existence.

We are all one fall away from the precipice, or one flight away from opening the skies. We are one moment away from sheer joy or complete madness.

I swiped left and right, and prayed we wouldn’t have to do this again until Santa Claus arrived AND that Mom would here to scold him too.

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If My Mother Was My Boss…

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The holidays had brought forth what felt like the Twelve Days of Mom.

In that approximate time, Mom experienced two ER runs, one in which I drove her, the other in which I didn’t dare. She was diagnosed with three infections, multiple scab wounds, pain and discomfort from shingles, a disease for which most folks are given chicken pox vaccinations, or don’t live long enough to experience the adult onset of chicken pox. And a week of the runs caused another ER run.

And this was AFTER Mom’s trifecta of seizures, soap swallowing and sun exposure earlier in the year. (See soap blog, part 1 and part 2).

By the end of the year, I was tired. I pondered a change.

Back in my corporate days, New Year’s had signaled job change. Or at least, looking for a new one. The rush of the holidays always led to a significant energy drain. Like any good employee, I directly attributed the drain to my job or boss, but never myself.

As 2017 approached, I had found myself in the same mode. Tired. The kind of tiredness that comes from knowing what comes next in my mother’s moment, and also, not knowing.

At month’s end, when I spoke to her house doctor, he flipped through her bulging chart. After five minutes or so, he looked up at me. “She’s one tough lady and you have one tough boss.”

Yes, in what job could I be employed by a boss who forgot all the good years I had put in, for the sake of one awful moment in which I accidentally bumped Mom while trying to hold down her arm so the nurse could get the blood pressure cuff around her triceps long enough for Mom to yell, “Oh, no, oh wait a minute, wait a minute, wait a minute?”

In what job could I work for a boss who voices a long stretch of No’s when she doesn’t like something? Remember what Ralphie said about his dad in A Christmas Story? “In the heat of battle my father wove a tapestry of obscenities that as far as we know is still hanging in space over Lake Michigan.” If Mom were still in northern Ohio, she would have blanketed all five Great Lakes with her words.

Where else could I find work where I will never get a promotion? In fact, I’m not sure I would want a promotion, because that would mean the woman I worked for is no longer in need of me. In essence, downsizing of the most tragic kind.

Where else could I be chastised by the boss for what I was wearing, as if there was a dress code for visitors at the care home? “What the hell are those things on your feet?” “Umm, boots?”

In what job could I endure my boss’s harassment for which there is no name? Its not ageist, nor sexist. The closest approximation I can come is reverse genetic harassment, in that my boss only harasses those to whom she gave birth to and is directly related.

Where else could I work where there is no strategic planning by the boss? When I plan to visit for the Christmas show, my boss takes a snooze. When I hope to bring the boss home, my boss bawls loudly and sometimes growls.

Where else could I sit at a job, thinking about all the other things I could be doing while my boss is fast asleep, but holding me in place by the death grip? If she couldn’t leave, neither could I.

In the end, the calendar turned over. My tiredness waned.

Lucky for Mom – and me – she was not my boss. But if the years with Mom taught me anything, my most important job was to sit in her quiet space and make room to meet her where she was, ER or not, furniture mover and all, and hope to one day receive a raise in hugs.

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Do Caregivers Experience Sympathy Pains?

IMG_7456Couvade syndrome. Sympathy Pains. It’s not just for pregnancy anymore.

My mother recently was hospitalized for a soap-swallowing incident. Ironically, as I observed and helped her to recover normal swallowing functions, I began to experience swallowing challenges of my own.

When she has had what I perceive to be, but she cannot share, hip pain on her right side, suddenly, I throw the right side of my back out, reaching in for a load of laundry.

When she aches. I do. When she smiles. I do.

Our pain is so intrinsically connected, that where her pain starts and ends, I cannot detect.

Couvade syndrome, also called sympathetic pregnancy, is a proposed condition in which a partner experiences some of the same symptoms and behavior of an expectant mother. These most often include minor weight gain, altered hormone levels, morning nausea, and disturbed sleep patterns. In more extreme cases, symptoms can include labor pains, postpartum depression, and nosebleeds. The labor pain symptom is commonly known as sympathy pain.
Couvade syndrome is not recognized as a real syndrome by many medical professionals. Its source is a matter of debate. Some believe it to be a psychosomatic condition, while others believe it may have biological causes relating to hormone changes.

I am convinced the same sympathy pains present in pregnancy, of which there is no medical evidence, are transmutable to those who are caregivers, those who are in a constant state of worry, obsession and love.

As such, I find myself wondering how connected am I to her brain health? What is the state of my own? Will I experience the same sort of memory loss that so devastates me at times? What would I want to tell my children, my husband, who ever is left holding the bag full of tricks to make me tick?

A cousin of mine, Debbie Wick Herd, recently posted a quote related to a similar theme of If I get dementia.  The prompt floated around in my head for days as I considered what would really be important for my loved ones to remember.

I wanted to write how I have coerced my husband to sign an agreement that he would pluck my white chin hairs and for my kids to make certain that I was served bacon at each meal.

But I went with authenticity instead of the truth.

 

If I Get Dementia

I want you to steady a pen
in my hands that ache to be of use,
roll out the paper in front of me
or flip on a computer
if I am still adept
at that
which I think I will be –
but may forget.

I want to still write
to feel the pulse of waiting
endlessly for the muse to strike
heartbeat bursting through my chest.
For her to paint a picture
– with words
which rush to ink the thin wood
– with words as broader strokes
this time, because though the mind
has shut down
the heart has opened to a
wider landscape
than I might have guessed.

I want you to edit my words,
craft them as you would sculpt
a bust of my being.
You will know what they mean.
Readers have always known better
than writers
what their words really
say.

Do not fret for an agent
or whether or not to publish.
The words will find their way
in the world.
They always have.
They are like worms digging through
the refuse of human tragedy
or wiggling to the top
of human triumph.

If I get dementia,
read me stories.
You will find my most treasured tomes
tattered and scattered throughout
my life.
Then read me something fresh.
Not news, but a crisp voice,
with a new throated call
to keep the niggles at bay.

And last, read me my own words
so I may recognize them still
and say goodbye
to some of the world
I am leaving behind.

 

Annette Januzzi Wick

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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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