Cindy LaFerle: When do we listen to our own hearts?

Heather Jose photo.

Heather Jose

WELCOME Cindy LaFerle, a popular author, columnist and longtime friend of our online magazine. She also is a veteran caregiver and writes eloquently about the challenge so many of us suddenly face—between caring for others … and ourselves. At the end of this column, I invite you to learn more about Cindy’s work.

Also, thanks to all the readers who are passing along our recent columns on Tips for Caregivers. We always look forward to your comments, emails and suggestions.

HERE IS Cindy’s column, which she calls …

Broken-Heart Signals

By CINDY LaFERLE

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

Cindy LaFerle created this multi-media piece, called “Cycles of the Muse.” It 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. (Click this image to visit the Amazon page for the book.)

Cindy LaFerle created this multi-media piece, called “Cycles of the Muse.” It is featured in “The Rust Rising Belt Almanac,” a new anthology of art, fiction, and poetry about growth, change and loss in America’s Rust Belt. (Click this image to visit the Amazon page for the book.)

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 without any exertion to prompt it—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 my family doctor, who ordered several tests. As the doctor 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. 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.

Click the cover to visit the book's Amazon page.

Click the cover to visit the book’s Amazon page.

“In many midlife women, heart palpitations are primarily caused by increasing heart energy—influenced by partnership, passion, anger, and forgiveness issues—trying to become embodied in a woman’s life,” explains Christiane Northrup, M.D., in a column she wrote for her website. She’s best known as the author of The Wisdom of Menopause: Creating Physical and Emotional Health During the Change.

In her online column, she writes: “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. If we are willing to be open to their meaning, we will be giving our hearts a chance to be heard.”

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 unrealistic demands on my time—or ignore my emotional needs—I have every right to question those relationships. My heart depends on it.

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 with anxious dementia patients, 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 that she might ignore at her peril.

It’s time to listen up.

Listen to your heart.

Cindy LaFerle

Cindy LaFerle

LEARN MORE ABOUT
CINDY LAFERLE

This column was republished, with permission, from Cindy’s home website: Cindy LaFerle’s Home Office. Cindy is an award-winning columnist, journalist and author. Her work appears in many book-length anthologies, including The Rust Belt Rising Almanac. Her own signature collection is Writing Home: Collected Essays and Newspaper Columns.

Tips for Caregivers: Keep Up vs. Catch Up

Heather Jose photo.

Heather Jose

As readers, you’ve told us that you enjoy our useful tips. That’s why my column last week—about the point at which families must give up their “home”—included some inspiring quotes and tips from others. And, that’s why we collected that big list of fall-and-winter ideas for helping caregivers. Please remember: The invitation to add to those lists is wide open. Add Comments below, or email us at [email protected] with your ideas.

Today, I’ve invited Benjamin Pratt, author of the Guide for Caregivers, to share another of his tips. These columns are perfect to share with friends, or to discuss in your small group. Feel free to print them, email them, share them on Facebook or even repost an entire column. We hope you’ll get involved!

Let a SEAL be your guide: “Keep up!”

US Navy Seals face the waves

By BENJAMIN PRATT

U.S. Navy SEAL training is spiritually, intellectually and physically rigorous, rugged. SEALs have a saying about running, which they do as a group.

“It’s easier to keep up than to catch up.”

This succinct, crisp phrase captures wisdom relevant for our lives in so many ways. Students know that it is easier to keep up with their studies than to languish through a term and race to catch up at the time of finals. It is easier to exercise regularly than catch up after years as a couch potato; easier to keep our bodies at a proper weight than catch up with endless diets; easier to limit our spending by restrained buying than recover from mounting debt. It is vibrant, necessary advice that promises us success in our primary relationships, our finances, our health and our life goals.

It is a basic life guideline.

Living by this sage advice is of inestimable value for caregivers. We caregivers can become so focused on serving our beloved that we ignore caring for ourselves. We isolate ourselves and do not run in a group as the SEALs do, thus making us vulnerable to a life of forever struggling to catch up.

We must care for ourselves by engaging in relationships where we can share our story, feel nurtured, experience the comfort and compassion of others while we extend the same to our care recipient. It is vital that we keep up with good food and adequate sleep and exercise to sustain body and soul. Our well-being requires soul-nurturing with humor, song, poetry, gratitude, prayer, manual labor and frequent respites.

Be a wise self-caregiver by running in community.

Don’t attempt the job alone.

Practice the good advice of the SEALs: “It’s easier to keep up than to catch up.”

Please, share this column with friends! Add Comments with your own tips.

Thanks go to Shane T. McCoy for today’s photo of US Navy Seals. He released it for public use via Wikimedia Commons.

What do we carry with us—when we give up the family home?

Heather Jose photo.

Heather Jose

My parents built the house where they raised our family in 1968. Through the years they hosted many family events and even more impromptu gatherings of friends. The house was perfect for these things with its large living area, inside and out.

Dad loved innovation (and was a little crazy). He installed a switch in the master bedroom to turn on a plug in the kitchen. This would be the predecessor to the coffee maker with a timer. He could turn on the switch and have his coffee ready when he went downstairs. They kept adding things over the years: a pole barn, a pool, a two-story tree house, and a sand volleyball court.

It was a great place to grow up.

It was home.

WHAT IS HOME? To my family, home is gatherings like this scene of dominoes after a family dinner. For poet Ted Kooser, it's a House Held Up By Trees.

WHAT IS HOME? To my family, home is gatherings like this scene of dominoes after a family dinner. For poet Ted Kooser, it’s a House Held Up By Trees.

Nearly 45 years later, Mom lives alone in the family home. Dad passed away in January. My brothers and I settled in towns other than our hometown and aren’t close enough to regularly visit. It’s a pretty big place for one person and upkeep is ongoing. Though there are lots of good memories, Mom is ready to move. We all agree that the house needs children running through it.

Have you experienced this emotional milestone in your family?

Many writers have tried to describe these powerful ties we feel toward a family home. Frederick Buechner wrote a whole book, The Longing for Home, to explore these deep stirrings within us. As we become adults ourselves and our own children grow up, he writes, “we find ourselves remembering the one particular house that was our childhood home. We remember the books we read there. We remember the people we loved there.”

Former U.S. Poet Laureate Ted Kooser wrote a wonderful children’s book about the powerful connections we feel to family homes through the generations: House Held Up by Trees. In one of Kooser’s best-known poems, he says that it was so hard for him to help his aging mother move away from their family home that he transplanted her iris bulbs into his own garden and, each spring, the iris blooms help him to remember their former home.

In our family, Mom seems ready to make a big move now. After considering all of the areas where her kids live, she bought land this summer on our lake and is planning to build. Geographically this puts her in the middle of all of us since one brother lives north and the other lives south of us. We are happy to have her closeby.

In this process we have found that there is a wide range of opinions about leaving the family home. Some people are astounded that Mom would consider moving; others encourage her to move on with the next chapter.

Mom would acknowledge that there are a whole lot of memories associated with what will forever be “home” for many of us—yet she knows it is time to move on.

She wants to be a part of more memories by being closer to her family—rather than staying in a house that is no longer a gathering place. A house is a house she would say; it’s people who make a place … a home.

NOW IT’S YOUR TURN

Please, share your stories and ideas. This is such an important—and often difficult—challenge for so many of our families. I’m sure many of you have stories like mine or like Ted Kooser’s. I hope you will add a Comment below or email us at [email protected] about an experience you’ve had—or an idea you’ve found helpful, like moving some iris bulbs.

And, if you enjoyed this column, you also will enjoy Debra Darvick’s column this week, called Home Making: The Sisterhood of My Traveling Remnant.

Print, share with friends: Caregivers Tips for Fall and Winter

Heather Jose photo.

Heather Jose

Thank you to all who contributed to our list as we prepare for the upcoming seasons. Feel free to print this set of tips; or, share this via Facebook, email it to friends, republish this in your congregation’s newsletter. We want to spread this collected wisdom. Many of these ideas will spark fresh excitement in your community.

Caregiver Tips
as Leaves, Snow and Year-End Holidays
Blow into Our Lives

Winter walk in the woodsGive the gift of time. Whether it is a social visit with the caregiver—or respite time, filling in for the caregiver, so they can get away a bit. Time is appreciated! If it’s possible, offer to take the one who requires care out for a while—so that the caregiver can have some time at home alone.

Plan a short fall color tour with an accessible bus for caregivers and the people for whom they care.

Test furnaces early. Start them and run them for a day to see if they’re in working order for the winter.

Organize volunteers in your community to check on wheelchair ramps at neighbors’ homes to ensure they’re in good repair for the months of leaves, ice and snow.

Survey caregivers in your area to see if leaf, ice and snow removal is arranged for fall and winter in the homes where they provide care. Consider organizing volunteers to help out where the caregiver is the one who’ll wind up having to rake leaves and push snow, if you don’t help.

Organize a volunteer crew to help caregivers winterize their vehicles. Got snow scrapers? Check windshield wiper blades? Want some teenagers to give the car a good vacuum inside? Busy caregivers often wind up with vehicles jammed with stuff that they never have time to clean up.

Tech Savvy? How about helping caregivers get setup with Skype or FaceTime or Google-Plus Hangout for the holiday season so that, if they can’t attend a gathering, they can still join in.

Plan a “thanks for the caregivers” Thanksgiving-theme meal in November complete with substitute caregivers to cover their responsibilities at home. This is a great way to get local caregivers in your area to meet and begin forming a support group of friends.

Plan now for just the right holiday gifts to give to the caregivers in your life. Buying local products is wonderful of course. Looking to sites such as NoMoreRack.com and EndOfRetail.com might help you stumble upon a bargain that can express appreciation without breaking the bank.

Organize respite care to give caregivers in your area a “day off” to shop for their own holiday gift giving.

Have a family caregiving arrangement? Consider putting together an album of photos so that the primary caregiver—and the person who they care for—can look through the images and reminisce.

If you are in a close-knit caregiving relationship in your family—and gatherings are planned over the holidays—offer to be the one who goes home early so the primary caregiver can enjoy the entire event. All too often, we simply assume that the usual caregiver will always be tethered to the schedule of the person who needs the care.

Plan a holiday-decorating party for caregivers and shut-ins, after checking on what is appropriate in each case. This can be a fun boost for the whole household and may help weary folks actually get a little decorating done, when they might never find the time.

Share fun holiday music with your community’s caregivers. The gift of music makes an uplifting addition to the environment in any home. Think of burning a mix-CD of music to give to caregivers.

Make a plan now so that caregivers can choose holiday services to attend and can have the time free. Christmas Eve services are extremely popular, yet caregivers rarely have a chance to find replacement caregivers. And, consider having a service in your community at which caregivers—and the men and women they care for—can attend. This may involve planning transportation and a sensitivity to the needs of everyone who gathers.

Thanks for these ideas go to many of our readers, including Suze and Jenny Brown of Chicago, Nance Edwards from San Diego, MaryAnne and Jake from New York, and Bob W from St. Petersburg, Florida.

Seasons changing! Dive into life! (but at your own pace)

Heather Jose photo.

Heather Jose

“It’s the last nice day we may have,” the weather man warned, “take advantage of it!”

I’ve lived in Michigan my whole life; I know that, although it is almost 80 today, it could snow tomorrow. So I did. After I finished all my work I changed in to my running clothes and grabbed the leashes. The dogs could barely contain themselves as I tied my shoes. Jumping all over me as I sat on the front step. And then we were off, down the gravel driveway. Me trying to reign them in so I don’t go flying myself. We jogged the half mile to our dock so Elly could take one last swim before the ice comes and locks away her favorite sport of—dock jumping.

Diving into the LakeA regular air dog is she! Tuck, he’s more of a wader. He looks back at me proudly if he gets in up to his elbows. After a bit of frolicking it is time to head home. It is on the way back that it hits me. Jogging with these two is similar to being a caregiver.

What? Really? Hear me out…

Tuck is an aging Boxer now, and we don’t get 100 yards before he is lagging behind. “Come on, Old Man,” I tell him, encouraging him along. Meanwhile, Elly surges forward. She is still young, a lab-boxer mix with boundless energy and an inability to control her enthusiasm. As I negotiate the way home I try to meet both of their needs. When we pick up speed Tucker begins a gallop of sorts, with his tongue hanging out and his breath heavy. And so I slow down, pulling hard on Elly’s collar as she doesn’t want to quit running. Though I try, we cannot find a pace that suits us all.

This is the caregiver correlation: Sometimes we are stuck in the middle. I have to decide whose needs get met and who will have to give in. I can’t do it all. I must also relinquish the thought of this being a workout for me as we together cannot find a pace that will suffice for that either. I knew that before we left, that I wouldn’t be able to workout, but I couldn’t leave them behind on such a gorgeous day. I see that as yet another line drawn to caregivers. Knowing that we often choose not what is best for us, but rather what our charges will enjoy the most.

YOUR TURN:
PLEASE HELP US GATHER TIPS …

Last week we asked you to share a caregiving tip with us.

How do you balance it all? What is something that makes life easier? Our list is growing, but we still want to hear from you. Would you take a minute and share with us? You can send us your thoughts either in a Comment, below, or by emailing [email protected]

Changing seasons; looming holidays: So much to do! Help?

Heather Jose photo.

Heather Jose

WE need your help!

Please, read this column and contribute a tip—even a few words. Then, next week, I will compile our brightest ideas and provide a printable check list we all can use to get ready for this “new year” we are entering.

What new year?

Holidays comingHere’s how it unfolds in our household: My daughter runs cross country on her high school team. Last week started with a meet on Tuesday. The weather in Mid-Michigan? 92 degrees, sunny, and humid. Friday she ran again at the Michigan State Invitational in Lansing. As I was preparing to watch her meet—I was finding my winter coat and gloves to stand in 50 degrees, heavy clouds and wind.

Children are back in school; the weather is yo-yoing; the leaves are starting to change and the construction barrels are vanishing. Even if you don’t have students in your household, most employers have a big post-Labor-Day push. Before we know it the year-end holidays will be upon us.

Change is good—sometimes—but it can also be a challenge.

Here at WeAreCaregivers we are bringing together a community of readers who can help each through challenges that caregivers face. In that spirit, we are asking you to help us by offering some insight from your experience with caregiving.

Do you have a tip you could share for dealing with the coming changes in daily routines? Have you got tips for helping caregivers with the piles of leaves—and piles of snow—soon to come in many regions? How about an idea for making the holidays more enjoyable? Do you find that doing—or not doing—certain activities make life a lot easier?

SHARING TIPS:
SOME EXAMPLES

One thing that helps me is to take a few minutes to plan dinners for the week. It isn’t earth shattering, but it makes life better for all of us, especially at times when everyone’s schedule is in overdrive.

Are you part of a congregation starting a new fall-and-winter season? Looking for good ideas for your youth group? Are you part of a community-service group? Men’s group? Hospitality group? What ideas can you share for reaching out to caregivers in the coming seasons?

Here’s another example of a great tip: Organize volunteers to provide respite care for the caregivers in your community—so they each can have a holiday-shopping day free of their normal caregiving duties. Another example: Organize men and women who are handy with repairs to check out the wooden ramps at homes around your community. Any of your neighbors need help fixing a ramp so it’s sturdy for wet, icy and snowy weather?

I’m sure your mind already is whirring away …

HELP? HERE’S HOW:

We are going to pull together the tips you share with us. You don’t need to write a long note. A sentence or less is fine. We will take all of your fabulous advice and compile it for you to share next week. Together we will be better.

Add a comment below or email us at [email protected]

Mental Illness: What happens when we experience a crash?

Heather Jose photo.

Heather Jose

Mental illness often is described as the invisible disability. Families don’t like to talk about it. We rarely notice it—until there is a crash.

This week, I’m sharing a personal story about my introduction to mental illness—a story that involves both a real and a psychological crash. While it’s not uncommon, these days, for people to talk about their problems with anxiety and depression, people tend to fall silent when discussing psychological conditions that go beyond something a daily pill can handle. Since my eyes have been opened to these problems—including the problem of silence that surrounds mental illness—I now recognize more and more families who are struggling through this long journey.

I am shocked by how under-served this disability is and how little support families receive in most communities.

So, please, read this story that opened my eyes.

‘THE GIRL WHO CHOSE ME’

A crashed carI call her the girl who chose me. We met when I was coaching volleyball. We were a gritty team. Not a lot of skill base, but determined none the less. She was the one who found the good in things, tried every play, never complained.

I’m not really sure how our connection moved from coach/player to more. I can recall a really long walk on a hot day with her wearing flip flops. Slowly, over time, she told me her story. You’d never know it if you looked at her. She looked perfectly normal, yet her life was anything but that.

Over time she became a part of our family. She spent hours with my kids. We did what families do. As her senior year came we looked at colleges, found the perfect match, and off she went.

It was after her freshmen year that the car accident happened. She hit her head. After some time in the hospital, doctors deemed her okay and sent her home. With me.

It was the beginning of the descent. Injury couple with genetics brought out the worst and it was terrible. The happy, carefree girl laid on my couch for hours. We went to doctors and therapists. She recovered somewhat, but wasn’t the same. However, she was determined to return to school. When she went back in the fall, I worried about what might go wrong.

I was right to worry. The texts would come telling me she was on the edge. I would follow with phone calls, praying she would answer. Her counselor and I had each other on speed dial. Inevitably, the worst happened, an attempt to end her life.

The diagnoses over the next few years were varied, but the behavior was consistent. Do okay for awhile and then spiral. I’ve still never seen anything as difficult as this.

Slowly, slowly, she steadied. It took time and effort, but with the determination I had seen years ago—she succeeded. She rebuilt her life and became the woman she was meant to be.

The girl who chose me is married now. My mom and I went to her wedding. I sat in the back row and watched her give her love to her husband surrounded by her family. I never thought I would see the day. I am so proud of her, and truthfully I am proud of myself that I was able to play a part in her being there.

The backseat was a fine view for me.

Please, share your thoughts …
… and share this column

Have you been affected by a form of mental illness?

Is there a story or sentence that you could share? The more we share, the better we are. Add a comment below.

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