Remembering my mother

It has been one long year since my mother died. On the first anniversary of her death, September 13, I am reposting the eulogy I wrote for her. In loving memory of Carlesta (Geisel) Gullion, the following was read at her memorial service on September 16, 2014.

CarlaheadshotWhen you’re deep in the trenches of caring for a parent who’s battling advanced dementia, it gets harder with each passing year to remember the heart, the core, of the person he or she used to be.

The mother who drove you to the pediatrician becomes a child who requires an ongoing series of medical appointments and countless trips to the hospital. The father who once provided wisdom and advice can no longer make decisions about his own finances or even choose a brand of toothpaste. The mother who once cooked and hosted holiday dinners can barely hold a fork to her own mouth.

So, you find yourself at war with your own conscience, fighting sadness, anger, pity, denial, fatigue, and frustration. And then you feel guilty for feeling all of those feelings — because you remember that your mom or dad would never in a million years want to send you on this part of the journey.

Of course, nobody is ever truly prepared for The Phone Call — the final phone call that carries the mixed blessing. The phone call that announces Mom or Dad is finally at peace or “at home” in a better place. Like everyone else who loses a parent and goes about the somber business of making funeral arrangements, I used the time between that phone call and this funeral to reflect on earlier memories of my mother.

Baby 4

And for the first time in a while, I forgot about my mother’s debilitating illness and remembered instead the beautiful heart and generous soul of Carlesta Gullion – the person my mother was before she lost herself and her memories to vascular dementia.

All at once, my feelings of sadness, guilt, and frustration gave way to a much larger emotion that has guided and comforted me throughout these past few days. That emotion is gratitude.

Looking through sepia-toned photographs of my mother as a young girl, I remembered many of the stories she shared with me about her difficult childhood.

Carlesta’s father had abandoned her own mother before she was born, and later on, her mother and stepfather both struggled with alcoholism. But there were happy times too, and Mom shared those stories just as freely. She wanted me to hear about her maternal grandparents, who took care of her during the Great Depression while her mother worked. In her teens, Carlesta reconciled with her father — and even grew close to her new stepmother.

Mom also loved to tell me about her loyal collie dog, Sonny, and the carefree times they spent playing in her grandparents’ Tudor house by a river in Indianapolis, her hometown. And she often shared stories of her beloved Irish grandfather — a watercolor artist and a great character whose creative talents she inherited.

Recalling the early challenges she had as a kid, I can’t help but feel incredibly grateful for the happy childhood my mother gave me. She was determined to create the stable home and family she’d never quite had – and I have always been proud of her for accomplishing that.

MomXmasAmong my earliest happy childhood memories are the times I sat next to Carlesta on the living room couch, or in bed, with a picture book propped in my lap. We’d read aloud and laugh through the sing-song stories of Dr. Seuss, who was a distant (Geisel) cousin of Mom’s. Thanks to my mother, I learned to read before I entered kindergarten, and literature became a guiding light throughout my youth.

I’m grateful that she chose to marry Bill Gullion, who was the dearest and most reliable father any child could hope for. My dad was born to a sturdy pair of Scottish immigrants, and they were the anchors of my mother’s new family in Detroit.

I like to think that the fine example set by my parents’ marriage – which lasted 42 happy years until my father died – has been a loving influence in my marriage to Doug La Ferle, the love of my life, and my rock.

Carlesta often told me she couldn’t have asked for a finer son-in-law than Doug. She was proud of Doug’s talents as an architect and artist, and she regarded him as her own son.

Likewise, Doug helped me care for her as if she were his own mother. During Carlesta’s long illness, there were many times in the hospital and in the nursing home when Doug gave her the comfort and reassurance she needed after I had lost patience as her caregiver. Surely there is a special place in the heart of heaven for spouses like Doug.

As an only child, my mother also had a close relationship with her sister-in-law, Chris Gullion, and the two of them took turns hosting many holiday dinners over the years.

Baby1Having come from such a small family, my mother frequently reminded me that good friends are “a family one chooses.” When I was growing up, she often advised me to choose my friends carefully. Teaching by example, Carlesta maintained many of her longtime friendships, some dating back to high school. She was also a member of a stock club, PEO, and the Starr House Guild.

I am deeply grateful for all the times my mother helped me become a mother after my son Nate was born. Carlesta loved her grandson more than the world, and I don’t think she ever said “no” when I asked her to babysit him. Just as she had done for me, my mother created many happy memories for Nate, and she couldn’t have been more proud of all his accomplishments.

Such was her love for her only grandchild, in fact, that she became a Notre Dame football fan while he was a student at the University of Notre Dame. Mom wasn’t remotely interested in sports before then – so this was a testimony of their relationship. Going through Carlesta’s papers recently, I found dozens of cards and letters from Nate, which she had lovingly saved, in just about every drawer in the house.

My mother worked as a freelance color artist for several photography studios — including Royal Oak’s Bill Williams — throughout my childhood and teen years. She was among the first “work-at-home” moms in the late 1950s and ‘60s, setting up a home studio in our family room.

-35Later on, when I began my own career as a freelancer writer, I had my mother to thank for teaching me how to strike a balance between work and family. What a role model I had! I remember coming home from school as a kid and finding my mother at work at her easel, leaning over her photographs and mixing her oil paints. She always had time to listen as I shared the highlights or low points of my days at school.

I am forever grateful for that too.

As I type these thoughts, it occurs to me that what defined my mother more than anything was her reverence for home.

Though it’s a small word with just four letters, “home” meant everything to Carlesta. Home was a refuge and a sanctuary. To her, the word encompassed the people inside its walls – both family and friends – as well as its gardens and furnishings. Inspired by our family’s many road trips to historic Williamsburg, Virginia, and New England, she collected antiques and decorated every room in the house with treasures from our trips.

With her gift for hospitality, she entertained with style and care. She brought beauty to everything she crafted, whether it was a birthday party for a large group or a planter on the front porch. Making a home was an art form.

Once dementia had incapacitated her, moving Mom out of her beloved Royal Oak condo and into a nursing home was, by far, the hardest and most heartbreaking thing I’ve ever had to do.

All said and done, of all the gifts my mother has given me – including the gift of life itself – I’m most grateful for that abiding love of home.

This occurred to me not long after I learned that she had died. At the time, Doug and I were on the last day of our vacation. As soon as we got the call (at 5:45 on Saturday morning) we packed everything as quickly as we could and headed down the dark highway back to Royal Oak. It was the longest drive I’ve ever taken, though I don’t think the reality of my mother’s passing had really taken hold in my mind.

But finally, as we turned down Vinsetta Boulevard and our own house came into view like a mother with arms opened wide, the tears came and I felt embraced by something I can only describe as boundless gratitude for my home, my family, and this community – the roots of which my mother had planted inside me years ago.

My father, who passed away in 1992, had always found comfort in the Bible passage (John 14:2), “My father’s house has many dwelling places.”  It was read at his own mother’s funeral. When Dad died, I asked a pastor to read that verse in the eulogy I wrote for him.

And so, with a full and thankful heart, I hope my parents have found their place together in the “house with many dwelling places,” and that they are, finally, at peace and at home.

After this eulogy was read by pastor John Miller, my son Nate La Ferle read my favorite poem by Celtic poet David Whyte, “The House of Belonging.” Please click here to read it. 

Carlesta Gullion’s obituary is posted here.

Broken-heart signals

At midlife, our hearts and bodies often become increasingly sensitive to things that no longer serve us.” — Christiane Northrup, M.D.

venusLong before the weird heart palpitations started, my first warning was a never-ending series of medical appointments on my day planner.

Not one of those appointments was for me.

Three years ago, I’d purchased a new day planner to keep track of my widowed mother’s care management. While transferring dates and phone numbers from my previous planner, I noticed I’d driven Mom to nearly 50 medical appointments in less than a year — yet I’d neglected to schedule an annual physical for myself.

Unable to drive due to her progressing vascular dementia, Mom lived alone in her condo then, relying solely on me to help maintain her “independence.” Between regular trips to Mom’s cardiologist, urologist, audiologist, primary care physician, pacemaker clinic, and various surgeons, I was lucky if I could book a free morning to get my teeth cleaned.

Friends told me I was looking tired, but I ignored them (and thought they were being cruel). Months of worry and caregiving were starting to take their toll — yet I was too frantic to notice.

The beat goes on and on

Since March of this year, Mom has fallen twice, first fracturing her back and later shattering her ankle. (By this time, we’d finally made the difficult decision to move her, totally against her wishes, to a skilled nursing care facility.) These episodes required three extended hospital stays and two surgeries — plus weeks of physical therapy.

Meanwhile, I endured two minor surgeries of my own, but ended up spending my recovery time overseeing my mother’s care at the hospital. I would try to care for myself later, I promised.

Visiting Mom at the hospital, I could feel my blood pressure rising every time she insisted she was “perfectly capable” of caring for herself at home. Deluded by the insidious fog of dementia, she refused to believe she’d broken her ankle and was unable to walk — even when we pointed to the cast on her leg.

Over and over, she’d ask: Why are you keeping me here, there is nothing wrong with me … Why can’t I go home now?… When are you taking me home?

museBy August, I’d developed some alarming new symptoms of my very own — including heart palpitations — and a wretched case of insomnia. My heart would pound for no reason — even while I was relaxing in front of the TV.

It scared the hell out of me, unpredictably, several times a day.

I was terrified enough to finally schedule an appointment with Dr. Paul Ehrmann, my family doctor, who ordered several tests. As Dr. Paul explained it, I’d been living on adrenaline fumes after functioning on “high alert” for the past couple of years.

Taking versus giving

More than one-third of caregivers who provide continuing care for a spouse or another family member are doing so “while suffering poor health themselves,” notes a study cited by the Family Caregiver Alliance (www.caregiver.org). Not surprisingly, middle-aged and older female caregivers are more susceptible to heart disease, hypertension, and depression than those with no caregiving duties. The stats are sobering, so I won’t go on here.

“In many midlife women, heart palpitations are primarily caused by increasing heart energy trying to get in and be embodied in a woman’s life,” explains Christiane Northrup, M.D., author of The Wisdom of Menopause. “My experience has been that our bodies speak to us only when we can’t seem to ‘hear’ them any other way. When issues of love, issues of the soul, or issues of a woman’s unmet passions cry out for attention, they often take the form of heart palpitations.”

Dr. Northrup challenges women to ask what could be weighing heavily on our hearts — including our key relationships. Are friends and loved ones “investing” as much in our emotional bank as we’re investing in theirs? If not, why do we hang on to unbalanced alliances?

Of course, some relationships — family, especially — are not dispensable. I have no choice but to show up for my mother and to manage all aspects of her life, from finances to healthcare. But when others make silly or unfair demands on my time — or ignore my emotional needs — I have every right to question those relationships. My heart depends on it.

“When issues of love, issues of the soul, or issues of a woman’s unmet passions cry out for attention, they often take the form of heart palpitations.” — Christiane Northrup, M.D.

Reading Dr. Northrup’s advice, I also realized I’d been putting everyone else’s needs ahead my own for the past two decades. Starting in early motherhood, I’d completely redesigned my career goals around the schedules of my husband and son. As soon as my son left for college, my widowed mother’s health began failing, throwing me unexpectedly into the role of full-time caregiver again.

Hearing the heart sounds

Once we “listen” to what our hearts are telling us, Dr. Northrup says, our symptoms begin to fade — though it’s always best to have them checked by a physician, as I did.

Even though Mom has been in a nursing home for several months, I have to remind myself that I needn’t worry about her 24/7.  Professional caregivers are being paid to tend to her needs.

I’ve also learned that it’s best to avoid visiting her when I’m feeling especially depressed or exhausted.  Mom still begs me to take her “home” — which inevitably leads to more heartbreak and frustration for both of us. The social worker at the nursing home has suggested “redirecting” our conversations to focus on happier memories — which rarely works for anxious dementia patients like my mother, but I keep trying.

Though it might seem otherwise, this post isn’t a pity party. I fully accept the privilege of being part of a family — which often includes caring for a chronically ill (or incredibly difficult) elderly parent. I hope it serves as a warning for anyone fulfilling the role of caregiver while navigating her own middle years — years that inevitably present health challenges and other turning points she might ignore at her peril.

It’s time to listen up. Listen to your heart.

The artwork in this essay — “Cycles of the Muse,” by Cindy La Ferle —  is featured in The Rust Belt Almanac, a new anthology of art, fiction, and poetry about growth, change and loss in America’s Rust Belt. Copies available for purchase on Amazon.com.

The mom I used to have

 Caregivers are forced to let go of a loved one little by little, again and again, sometimes over a span of many years.” — Leeza Gibbons, Take Your Oxygen First

Crafted from fine cotton yarn, the black cardigan sweater became a staple in my spring wardrobe after my mother bought it for me 10 years ago. Rediscovering it in the back of my closet last week, I suddenly recalled a happier memory of Mom – a time when I wasn’t overwhelmed by what social workers describe as “caregiver burnout.”

closet2

And then came an unexpected flood of tears.

It’s not like me to fall apart over a sweater while I’m reorganizing my closet. Usually, I welcome the chance to shove my winter-weary woolens back into storage and replace them with the lighter fabrics of spring.

But then again, my mother hasn’t been herself for several seasons, either.

Things began to unravel after my son left for college — just when my husband and I earned the freedom of our newly emptied nest.

First, we noticed Mom was repeating her favorite stories more often than usual. Then her friends would call to report that she’d forgotten to show up for club meetings and lunch dates. She’d drive herself to the ER during her panic attacks, which started occurring with alarming frequency. Not long afterward, her doctors told me to confiscate her car keys.

Mom was 79 and had been widowed for 16 years when she was officially diagnosed with vascular dementia in 2009. She was also battling heart disease and severe hearing loss.

Her only child, I was handed full responsibility of her medical care along with a checklist outlining her worrisome diagnosis.

“Start researching senior housing with memory care – now — so you’ll have choices,” her primary care physician advised. The doctor also asked if I had durable power of attorney (which I did) and reminded me to get all the legal documents in order.

At the time, Mom lived alone in a condo near my house. She refused to consider any type of senior housing, regardless of the fact that she’d been in and out of William Beaumont Hospital half a dozen times, and averaged 45 medical visits annually for countless illnesses, real and imaginary. (I took her to every single one.)

Facing the reality

More than anything, I wish my mother would have helped map the course of her own future. But no matter how tactfully I approached the topic of assisted living — and offered to schedule tours of the best facilities — she’d look at me as if I’d asked her to move to the Outer Hebrides with nothing but a toothbrush.

Regardless, I researched several senior housing options on my own. And just as the doctors had predicted, the decision was made for us — after yet another trip to the ER with Mom in December of 2011.

The research I’d done earlier made our next step a little easier. While my mother recovered from heart surgery at the hospital, my husband and I put a deposit on a studio apartment at an assisted living residence near our home. We moved her there the day she was released from rehab.

By this time, Mom’s dementia had progressed to the point where she couldn’t remember that she’d had surgery and spent weeks in the hospital. I tried to preserve her dignity while sugar-coating the progressive dementia issue. I reminded her that her health and safety were our biggest concerns. Through it all,  she insisted she was “perfectly capable” of caring for herself at home.

And how could I blame her for denying reality?  Lately, I wish I could rewrite the whole scenario, too.

The grieving process 

Momand me1Saddest of all, dementia robbed Mom’s interest in almost everything she once enjoyed — Early American history, needlework, reading, lunch with friends. And clothes shopping.

In her prime, Mom had elevated bargain shopping to an art form, taking pleasure in scouting for gifts for people she loved. Even when I reached middle age, she’d insist on purchasing a new item of clothing for me whenever the seasons changed.

Which brings me back to the black sweater I mentioned at the start.

Ten years ago, Mom knew I’d been hunting for such a sweater — a classic black cardigan that would bridge the seasons. I’d shopped at several stores in two malls — but with no luck. I’d nearly given up when I discovered a T. J. Maxx shopping bag hanging from the side door of my house one afternoon. In it was the perfect black cotton sweater, which Mom had found on sale at one of her favorite haunts.

When I rediscovered it last month, my unexpected tears released a tsunami of mixed emotions.

Until then, I’d been raging inwardly at the dementia that had devoured my mother’s mind and rendered her incapable of making her own decisions. I hadn’t fully realized that I was grieving the loss of my “real” mother — the woman who had shared her wisdom and recipes, encouraged my career, babysat my son, and took delight in buying me new clothes.

Facing the unfixable

The ongoing nightmare of dementia is hard to explain to others who haven’t walked through this dark tunnel with a parent or a spouse. Whether you’re talking about Alzheimer’s disease or vascular dementia, helping a loved one with a memory loss disorder isn’t the same as nursing a heart condition or a broken limb.

“With memory loss disorders, there is no comfort to be found in hoping for future recovery or improvement,” writes Leeza Gibbons in Take Your Oxygen First, an excellent guide to caring for a loved one with memory loss.

“If we don’t grieve for what we have lost, we can’t experience what we have now,” Gibbons goes on to explain. “In the end, life isn’t about choosing what happens to us; we only get to choose how to respond to it.”

As I write this, Mom is in a nursing rehab facility after fracturing her back at her assisted living residence last month. Her team of physical therapists can’t determine, at this point, if she’ll learn how to walk again. She is twice as fearful and confused. I do my best to remain strong for her, though I’m often exhausted, hopeless, and resentful — and ashamed for feeling that way, too.

In my better moments, I learn everything I can about my mother’s health problems and advocate for her 24/7. I’ve also learned to guard my own health — and my time — knowing that I’m not the only one who depends on both.

Meanwhile, the black sweater serves as an emblem of my mother’s best years; a tangible reminder of her former self. But I doubt that I’ll wear it again. It doesn’t wrap around me as well as it did when Mom first gave it to me — as if to remind me that I’m not the same woman I was 10 years ago. — Cindy La Ferle

For tips on dealing with caregiver stress from the Mayo Clinic, click here

Photo memories of Mom

All photographs are there to remind us of what we forget.   ~John Berger

Sometimes I have to rely on the lens of memory to see her as the true beauty she once was.

Waiting for the occupational therapist to arrive, my widowed mother is slumped in a chair in her new assisted living apartment. Her naturally wavy gray hair is long overdue for a good cut, and the navy stretch suit she’s wearing is at least a size too large. She looks older than her 81 years.

Mom doesn’t seem to care, which is totally unlike the woman she was before vascular dementia began devouring her pride, her self.

Not long ago, she was the sort of woman who wouldn’t be seen anywhere without a fresh application of her favorite Estee Lauder lipstick.

Not surprisingly, she’s confused and miserable in her new surroundings. She spent a week in the hospital at the end of last year, then another four weeks at a nursing rehab center. She wants to go back to her own condo — now — but I don’t have the heart to tell her (again) that this will be her home for a while.

Working with the assisted living staff, I keep trying different things to distract her. I want to help my mother enjoy what’s left of her life; to earn back her approval. And I desperately hope to see a glimmer of happiness or a trace of contentment on her face. But as I listen to her litany of complaints and watch her struggle just to rise from her chair, I can’t help but wonder if the goal is out of reach.

A museum of her former life

After my visit, I drive across town to retrieve more of Mom’s clothing from her condo. As soon as I arrive, I wander each room tentatively, half expecting to find evidence of intruders. Or ghosts.

Gathering dust in her long absence, the whole place is as quiet as a mausoleum. A recipe box sits next to her blood pressure cuff on the kitchen table, exactly where my mother left them the day after Thanksgiving — the day I drove her to the emergency room. There are plates in the dishwasher and an old grocery list on the counter. With no one else living here now, the condo feels like a museum of my mother’s former life. And every piece of furniture is a relic of our family’s past.

Which is partly why I’m overcome by an urge to dig through Mom’s closet for an album of family photos dating back to her childhood in 1930s.  At first, I tell myself that the photos might trigger some happier conversation with my mother at the assisted living residence.

But in reality, I’m the one who needs to be reminded of the strong, beautiful woman she once was.

An album of another era

Flipping through the album I’d been looking for, I pause at the sepia-toned photo of Mom when she was barely three years old.

I am always moved when I see photos of my parents as children. And while dementia has rendered my mother more helpless than ever, this particular photo shows her at her smallest, most vulnerable self.

In it, Mom is standing bow-legged in a sandbox behind the Indianapolis home of her beloved grandparents, the folks who took care of her while her newly divorced mother was at work. A source of shame in those days, divorce was rarely discussed openly in my mother’s household. Much later, she’d share stories of how her young father abandoned his new family — right before she was born — and how her grandparents helped support her mother during the Depression.

In the photo, Mom wears a swimsuit and a pair of beaded moccasins. Holding a tiny shovel and a rubber ball, she looks as if she were caught off guard; her smile is more of a question than a statement. Still, there’s the twinkle of determination in her dark brown eyes.

The dance of her life

Mom’s stepfather, who came into her life a few years later, was an amateur photographer. His devotion to his hobby, and especially to my mother, is evident throughout the photo album.

In one portrait, my mother is dressed for a dance. Her prom gown flaunts an artful confection of ribbons on one shoulder – a testimony to my grandmother’s talent with a needle and thread. Mom is also wearing a corsage, and I can’t help but wonder if my handsome, black-haired father had presented it to her just before the photo was snapped. (My parents started dating after they met at a Presbyterian church youth group in Detroit.)

Because the photo is black and white, I can only guess that her dress is white, or maybe a pale shade of blue. It’s likely that her lipstick and nail polish are deep crimson, as dictated by the film stars of the 1940s.

But there’s no denying that my mother looks gorgeous and happy in this portrait. The sweet promises of true love, her own home, and a secure family — all she ever wanted — are almost within reach.

It also occurs to me that this album of memories belongs with my mother in her new assisted living apartment, not hidden away in a closet that she probably won’t ever open again. So I pack the book in my car along with another bag of nightgowns and a new package of incontinence products.

The following day, when I reintroduce her to the album and its treasures, her eyes light up as if she’s seeing the photos for the first time. Her oldest memories rush forward — they never left her, of course — and she recites the names of all the beloved people and places in the vintage photographs. She pauses at a shot of her grandparents and spins another reverie of their beautiful Tudor home on the river near Indianapolis.

I’ve heard the stories many times before, with or without the photographs, but that’s OK. For the first time in ages, my mother is animated and smiling. And her beauty shines through. — Cindy La Ferle

 

 

Moving Mom

Love recognizes no barriers. It jumps hurdles, leaps fences, penetrates walls to arrive at its destination full of hope.” — Maya Angelou

Yesterday, while labeling my mother’s clothing and underwear, I had a surreal moment in which I felt as if I were moving another kid to college. In reality, we’re getting ready to transfer Mom to an assisted living residence, where she’ll soon have her own studio apartment.

Doug and I spent the past week moving pieces of Mom’s furniture (her apartment comes with some basics) along with decorative accessories, photos, clothing, TV, microwave, and toiletries. We also shopped for a bedspread and items for her kitchenette.

The new apartment looks traditional and beautiful — the style my mother is accustomed to — yet we know, deep down, that all the elegant things in the world won’t fool my mother into thinking this other place is superior to the condo she’s grown to love so much.

When Doug and I aren’t consumed by the moving process, I’m usually on the phone with a social worker or a physical therapist at the nursing center where my mother is undergoing rehab now. The social worker is concerned about my mother’s delusional behavior this week. Mom doesn’t believe there’s anything wrong with her health — nor does she remember last month’s visit to the ER at Beaumont Hospital, which ultimately led to all of this. Sounding like Dorothy on a broken record, she just keeps asking to go home. To her real home.

While I know this move is inevitable and right, I still feel twinges of guilt for uprooting my mother from everything that matters to her.

And I don’t know how I’d survive the stress without Doug, the world’s absolute-best husband. It breaks my heart a little, too, when I remember that Doug plowed through a similar scenario less than two years ago when his late father (who had Alzheimer’s) had to be moved several times until he and his mother found the right nursing home. (Ain’t midlife grand?) Doug’s experience with lease agreements and medical/legal paperwork alone has been invaluable, not to mention his willingness to sit with me and write my mother’s name on dishtowels and socks with a permanent marker.

The big move from the nursing center to assisted living is scheduled for Sunday. What a long and winding road it’s been. While I’ll be relieved to get my mother in a safe place, finally, I know there’s a boatload of emotional work ahead of me. Mom will need time and patience to adjust. And so will I. –– Cindy La Ferle

— Top: Our family with my mom on Christmas night, at Woodward Hills nursing center cafeteria. My mother has been recovering at Woodward Hills following a week at Beaumont Hospital last month. Bottom photo: A detail from Mom’s new apartment at a local assisted living residence. —