Posts Tagged ‘dementia’
Cindy La Ferle on October 16th, 2013
At midlife, our hearts and bodies often become increasingly sensitive to things that no longer serve us.” — Christiane Northrup, M.D.
Long 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?
By 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.
Cindy La Ferle on April 3rd, 2013
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.”
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
Saddest 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.
Cindy La Ferle on January 29th, 2012
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
Cindy La Ferle on January 26th, 2011
Though I’ve been writing professionally for nearly 30 years, there are times when I find it easier to express myself through the visual arts. Especially when I’m struggling to come to terms with a difficult or painful topic.
One of my mixed-media constructions, “What We Remember,” is a case in point.
I began working on this piece two years ago, not long after my mother was officially diagnosed with early stage dementia. My father-in-law died of Alzheimer’s last June, so the theme of “remembering” has special significance to me — aside from the fact that memoir has always been my favorite genre in creative writing.
“What We Remember” was a toy chemistry kit in its previous life. Doug and I discovered it in a Good Will thrift shop in St. Joseph. Aged and loaded with character, the kit was irresistible, even though it was missing its containers and chemicals. We knew immediately that one of us would use it for an art project.
“It’s surprising how much memory is built around things unnoticed at the time.” — Barbara Kingsolver
Over a period of several weeks, I collaged the interior of the box with vintage dress patterns, old sheet music, and photo reproductions. I added found objects that play loosely on the theme of memories and souvenirs — shells gathered from a beach; twigs and feathers from hikes in the woods.
The small glass bottle on the bottom shelf contains a tiny printed copy of the dictionary definition of “memoir,” while the wine corks on the middle shelf suggest good times that may or may not be remembered — depending, of course, on how much wine was consumed. The bird on the top shelf perches above a vintage fountain pen that could have been used for recording entries in a diary.
I was pleased to learn that “What We Remember” was accepted for the Michigan Annual XXXVII Art Competition. Detroit art critic Vince Carducci served as juror. The exhibition runs from January 28 through February 25 at the Anton Art Center in Mount Clemens, and is free to the public. — CL
– For a larger view of the artwork, please click on each photo –
Cindy La Ferle on November 1st, 2010
The art of living lies less in eliminating our troubles than in growing with them. ~Bernard M. Baruch
I won the book this summer, but it sat unread for weeks, buried on my nightstand under a tall stack of novels and review copies. Joy No Matter What: Make Three Simple Choices to Access Your Inner Joy, by Carolyn Hobbs, sounded like a delightful read, but I couldn’t muster the enthusiasm to crack it open.
Overwhelmed with concerns about my widowed mother’s health, I’ve been feeling more anxious than joyful lately.
Mom lives alone in a condo, about 10 minutes from my house. Up until this fall I’ve felt reasonably confident that she was capable of living independently. And she was, for quite a while. But my mother’s early stage dementia — which was officially diagnosed by a neurologist over a year ago — has moved to the middle stage, and her doctors have put me on alert. Right now, I’m filling out the paperwork for an in-depth geriatric evaluation that will, hopefully, lead to the help and advice I need to make the right decisions for my mother. (Including when to take away her car keys.)
Meanwhile, as her sole caregiver, I worry a lot. And as much as I hate to admit it, sometimes I’m swimming against an undercurrent of resentment.
So I happened to thumb through my copy of Joy No Matter What last week, and discovered that “resentment” has its own chapter in the book. And what I read was exactly what I needed to consider.
“Resentment steals joy like nothing else,” writes author Carolyn Hobbs. “It cheats us out of wholesome loving contact with those we love. It destroys perfectly good relationships.” As Hobbs points out, it can also negatively impact our health. Thankfully, she offers some solutions, and one in particular has really helped.
“Writing your resentments down on a piece of paper is a great way to acknowledge them to yourself,” Hobbs advises. “Don’t hold back. The best way to make resentments conscious is to totally indulge them.”
Despite the fact that I’ve been writing personal stories for years, the very thought of recording how I feel about Mom’s dementia — even privately — seemed disloyal and cruel. So I had to force myself to sit down and make a list of all the things I “resented” about her condition and how it has marred our once-happy relationship.
For starters, I admitted that my mother’s dementia has hijacked my peace of mind as well as some of the freedoms of my newly emptied nest. I listed the frightening, paranoid phone calls I get from her several times a week, throwing my normal routine off course. I wrote about how my mother expresses little interest in my life — and how most of our conversations revolve around her health and anxieties. I even tallied all the hours I’ve spent in doctors offices for her countless medical and dental appointments. I wrote about how I resented dementia for blurring the quality of Mom’s elder years, and for building a wall between her and many of her oldest and dearest friends.
Lastly, I listed the guilt I battle daily for harboring all this resentment and worry.
Of course, I will never share this list with my mother. But facing up to my darker emotions has helped me find some relief. Examining the issues that trigger my anger and sadness, I can begin to move ahead and ultimately find the patience required of all care-givers. Most of all, Hobbs’ technique has led me to understand that, deep down, I’m grieving the loss of my real mom. I’m grieving the loss of the mutually supportive relationship we had before the dark brush of dementia rendered her childlike and needy.
Once in a while, I get a few glimpses of my old mom — and I savor them while I can.
Two weeks ago, for instance, Mom phoned to ask about a doctor’s appointment on her calendar. During the conversation, I mentioned that Doug and I were celebrating our 30th wedding anniversary that evening. My mother, who always remembered family birthdays and anniversaries, had totally forgotten this one. “Oh my, I had no idea you’ve been married 30 years!” she shouted into the phone, struggling to process the oversight. But an hour later, she drove over to our house with the most beautiful flower arrangement I’ve seen — a wild assemblage of deep-violet carnations, burgundy roses, and cabbage flowers. The card read, “Happy Anniversary, Love Always, Mom.”
Every day, I remind myself that the overriding emotion I’m really feeling for my mother is love, not resentment. Despite the fact that she can’t recall things I’ve told her the day before, she never forgets that I’m her daughter, and she knows I’ll do my best to get her through this, no matter what. — Cindy La Ferle
– Photo above: My mother on her 80th birthday in September this year. The photo in the foreground is my mother’s high school graduation portrait –