Family Archives - Judith D. Henry Blog

A Lesson in Vulnerability

Photo: Daddeo and me, circa 1956, Chicago

I recently gave an interview to NPR for an upcoming podcast on family caregiving. When asked to recall an event connected with my dad’s dementia, what immediately surfaced was the chaotic day I sent him to his room for a time-out, then locked myself in the bathroom for an hour, and cried into a towel – for me, for our family, and for my father, most of all.

Despite being described in my book, The Dutiful Daughter’s Guide to Caregiving, in far more detail, hearing that story spoken aloud made my stomach twist. Would people think me insensitive to my father’s needs? Would they view the telling as disrespectful to his memory? What would they think about an author who writes about dementia and deigns to offer advice?

Lucky for me, I reached out to a good friend and, honking into a Kleenex, asked her to talk me down from the lofty perch I had placed myself. She responded with, “You offered a moment of true vulnerability to listeners and that is scary. Think how it makes others feel, though, to know they’re not alone.”

Her wise words reminded me of something I always tell participants during talks and workshops. It has to do with the profound responsibilities of caregivers, and how we so often expect ourselves to respond flawlessly to every challenge this experience throws at us, even when feeling exhausted and overwhelmed. Cripes – most of the time, we don’t even know what we need to know until it hits us upside the head.

So, here’s my advice whether you’re neck deep in the journey or processing it weeks, months or even years later, like me. Don’t be afraid to say, “I’m not perfect, but I did my best.” When it comes to caregiving, one of the hardest lessons to learn is that we’re only human.

Follow Up: Ultimately, my interview was not used in the NPR podcast, but there are still some very helpful suggestions to be found. Link is:

https://www.npr.org/2019/07/11/740715027/how-to-be-a-better-caregiver-when-a-loved-one-gets-sick

We Were Never The Waltons

Family
Food

The holidays are almost upon us, and what’s supposed to be an occasion for good cheer and family bonding can often turn into added stress for caregivers.

At those times, I think we expect even more from ourselves and from other family members – creating the picture-perfect meal with everyone smiling around the table and getting along. I don’t know about you, but my family was never the Walton’s, even before my folks became ill.

What often saved me was trying to stay in the moment, and let go of the need to have everything just right, including those sibling relationships that became strained over time.

The year my mother was in a rehab facility during Thanksgiving was a perfect example. Our family was fractured, but one of my siblings and I took the meal to her in a mountain of Tupperware containers. The plates were chipped; the napkins were paper; the flowers were wilted; and the tablecloth had seen better days. But there was laughter, shared memories and gratitude for the time we spent together, and that’s really what Thanksgiving is all about.

Wishing you all some much-needed peace this holiday.

The Facts of Life-A Different Perspective

Most kids learn the facts of life from their more well-informed friends or from some vague reference in personal hygiene class. I got my first lesson from a banned British novel.

In my childhood home, shelves groaned under the weight of books celebrating great opera, classic literature, and fine art, while stacks of Scientific American, Mother Jones, and National Geographic vied for space next to heirloom Sabbath candlesticks.

A voracious reader, everything intrigued me, including the backs of cereal boxes, toothpaste tubes, and warnings on household cleaning supplies. My parents used to pay me a penny for every billboard I didn’t read aloud on the family’s four-hour road trips from Orlando to Fort Lauderdale during summer vacations.

One Saturday, having turned boredom into an art form as only a thirteen-year-old can do, I went in search of something new to read while my parents were out buying a new washing machine. Nancy Drew and her penchant for making a mystery out of a molehill had grown stale and all my beloved horse books had been read and reread a dozen times. Exploring the bookcase in my parents’ bedroom, I noticed a copy of Lady Chatterley’s Lover by D. H. Lawrence. While I didn’t know that “first edition” stamped inside its cover gave this book far more value than most, no one had to tell me what the word “lover” meant. It could only be one thing . . . sex. And so I sat on the floor of my parents’ room and discovered for myself why Lawrence’s book had maintained its “banned” status for so many years.

Knowing my parents would soon be back, I got busy dog-earring the juiciest pages for a secret return engagement and never heard my father’s footsteps across the terrazzo floor until his wing-tips appeared in the doorway. It took just a few seconds for him to assess the scene — the hole on the shelf where the book should have been and me hunched over speed-reading and pushing horn-rimmed glasses back onto my nose while nervously twirling strands of brown hair between my fingers.

Looking up and seeing my father’s pained expression, I braced myself for a lecture on reading a book that was obviously meant for adults only.

“Judy, it appears your mother and I cannot trust you to be alone in the house without supervision. I am extremely disappointed. How can I make myself clear? NEVER, EVER treat a book in this fashion. Only lazy people with no respect for property consider it acceptable to dog-ear pages. Until I say so, this will go back on the shelf and remain there.”

My father eventually got over the fact that his now sullied copy of Lady Chatterley would no longer be funding his retirement, and I took what occurred as his permission to push the boundaries even further by exploring a collection of writing well beyond my years. Beginning with the bookcases that lined our dining and living room walls, I read works by Herman Wouk, Leon Uris, and Nevil Shute, which taught me about harsh realities, impossible to put aside.

Yet, some of the most profound lessons have come, not from books, but from being there for people in ways I’ve never imagined; accepting what is, including my imperfections and limitations; offering comfort even when I cannot find it for myself; and realizing that loving invites loss, regardless of how hard we try to hold it at bay. This is a truer definition of the facts of life, and the very stuff of caregiving.

The Stuff of Memories

Ray Bradbury said, “Everyone must leave something behind when he dies. A child or a book or a painting or a house or a wall built or a pair of shoes made. Or a garden planted. Something your hand touched some way so your soul has somewhere to go when you die, and when people look at that tree or that flower you planted, you’re there.”

Seeing these unusual family portraits by Camila Cotrambone, I began to think about the objects that are tied to memories of my parents. My mother’s paisley address book – the writing looks like a carnival of ants tumbling across the page; her well-worn paintbrushes still stored in a favorite Hanukkah coffee mug I gave her years ago; my dad’s prayer shawl from his long ago temple days, tucked away in a burgundy velvet pouch; and a collection of his engineer’s slide rules, yellowed with age. There is such comfort and connection to be found in these ordinary talismans – along with the stories I tell, another way to hold my parents close.

What about you? Are there any possessions from a loved one that you hold dear?

The Art of Gratitude

During the last year of my mother’s life, she was boomeranging between home and late-night trips to the emergency room every other month. This often meant lengthy hospital stays that left her even weaker than before, and every time it happened, I found myself mentally trying to prepare for the end.

During one of my visits, after talking about her art classes which she’d been taking for years, and the latest scoop on my siblings, I took her hand and said, “I love you, and it’s important to me that you get the sendoff you really want, when the time comes. How about if we put our heads together and plan your memorial service?”

She clapped her hands and said, “Oh, that’s a great idea. What should we talk about first?”

So we mapped it out, from the music (Barbra Streisand songs, including “Second-hand Rose,” since she was a passionate Goodwill shopper, and Klezmer tunes, which she’d grown up with in an orthodox Jewish home) to the food she enjoyed most (deli sandwiches from TooJay’s). With a loud guffaw, she suggested invites that said, “No gifts, necessary,” but lots of balloons. And in typical fashion, she cautioned against anything maudlin or sentimental, just wanting people to tell stories of the good times they’d shared.

When the time came, it turned out to be the perfect celebration of her life, filled with laughter, tears and memorable moments. As a final tribute, each guest was given one of her well-worn paintbrushes with a small tag attached that read:

In memory of Sally D

May 4, 1922-March 28, 2013

“The essence of all beautiful art is gratitude.” – Nietzsche

—————————-

My mother taught all of us about love, friendship, and the importance of being thankful in our everyday lives. To honor her amazing spirit, why not take a moment to leave a comment acknowledging what you are grateful for. She would have loved that.

The Wisdom of a Caregiver

With permission from members of my writer’s group for caregivers, I’ll be sharing some of their work with you from time to time. This powerful piece, by Anne Lawrence, is a response to four questions posed at our last meeting. What would your answers be?

Q What do you wish you’d known or were told before taking on the role of caregiver?

Q What has been the hardest part of caregiving?

Q What has been the most rewarding part of caregiving?

Q Please share some advice for someone who’s new to this journey.

—————————————————————————————————–

Some Advice

“I’m so tired,” said Dick, as I tucked him into bed this morning at 9:30am. He had been up for three hours, but he needed a nap. For the past few weeks, he’s been failing, faster now than the slow fail to which I’ve been witness for almost seventeen years. It’s not cancer, which even when it’s slow is faster than this. “This” is what obituaries call “complications of diabetes,” the decades-long, inexorable march to death. It’s a quiet suffering. There are no pink, purple, or red ribbons, no television marathons, no lawyers promising you compensation. Because unlike mesothelioma, which can be proved to be someone else’s misdoing, the suffering associated with diabetes is, in the eyes of many of the healthy, your own damn fault.

I don’t blame Dick for his diabetes. I’ve watched him follow the doctor’s orders for thirty years, taking his medication, watching his diet, exercising. What the doctors don’t tell you is even when you are doing your best, the disease is damaging you. And there is no escape; no surgery to remove the mass, no chemo or radiation to kill the cells. There is nothing to be done except “manage” the disease. So we are managing.

“Maybe the owl is on his way,” Dick says to me, kidding of course, but is he really? He’s told me that after he dies, he’s going to come visit me as an owl. For quite a few months, there has been an owl appearing at intervals around our house, just sitting on the fence looking into our windows or swooping past me as I water the flowers. Dick decided that it’s my father, who died in 1985 and, to my knowledge, has never visited me before. But Dick claims the owl has a little mustache like my dad’s.

“You can’t come back as an owl if my father is an owl,” I say. “How will I know who’s who?”

“You’ll know,” he tells me with a sly smile. Many people would probably find this owl business morbid, macabre, or just plain weird. But we find it comforting and even fun. Dick wants to be cremated but he doesn’t want me to have a big honking urn on the fireplace mantel. “Just put a bit of me in a little owl and he can sit next to my golden chicken,” he said. Dick’s golden chicken is a gift from my sister. Along with a golden color, the chicken has Swarovski crystals and three tiny golden eggs. It’s only about two inches high and sits on our coffee table right in front of his chair. It symbolizes the financial windfall we were told was coming by the psychic my sister and I visit each year. “Your husband is sitting on a golden chicken,” the psychic told me. “He’s going to bring you lots of money.” The money never arrived, but the chicken did. So now Dick wants a little owl to match it. How am I going to find an owl that’s also an urn, I thought. But one enquiry in Google [owl cremation urn] brought him right up: A tiny owl that opens for about half a teaspoon of remains. I bought one right away, worried that I wouldn’t be able to find it again when the time (when is the time?) comes. Then, never to be outdone, my sister found an owl necklace with room for about a quarter teaspoon remains. We got three because, in addition to me, my sister and niece also want a piece of UD, as he’s called around here, Uncle Dick.

So some advice I’d give people who are caregivers for the very sick: Don’t be afraid to talk about the end. If you’re not afraid, the one you care for won’t be either. Embrace it, talk about it, laugh about it, cry about it. It’s difficult, of course, but I must believe it’s less heart-wrenching than pretending.

Dick and I were pulling into the driveway the other day from a particularly difficult doctor’s appointment and there was the owl, sitting on our neighbor’s air conditioner, watching us enter the garage. “Hi, Dad,” I said. “How’s it goin’?” Dick laughed and went into the house. About ten minutes later he was watching a western on TV. An owl flew over the Indian guide and the western settler. “Sign of death,” the Indian said. Dick and I looked at each other and howled.

So that’s something else I’d say to caregivers: You’re allowed to laugh.

Anne Lawrence

November 23, 2015

What I Know For Sure

Family Caregiver’s Month

November is National Family Caregiver’s Month. So, why the picture of cactus? Well, I’m a little prickly about the fact that the contributions of caregivers are officially recognized only one month out of twelve. With almost 66 million people in the United States providing care to an ill, disabled or aging family member, it should be year-round.

Since releasing my book a few short months ago, I’ve been privileged to hear the stories of so many people who are caring for moms and dads, children, siblings, spouses and life partners. And regardless of our differences, the common thread that runs through every experience is the capacity for resilience, that ability to cope with stress and adversity that sometimes seems in short supply.

It’s a word I recently asked my caregiver’s writing group to consider. What did the term mean to them? What strengthened their resiliency? What weakened it? How did they find it in themselves or others?

As always, everyone wrote from a different perspective. One person described how resilience is a living, changing thing, and that helping others to be strong enhances your own ability to cope. Another takes her lead from the weeping willow – a tree that survives the years through its ability to bend and move with the wind. For me, it could be found by looking at my tiny sparrow of a mom, 90 years old, and realizing that her body told a tale of resilience more eloquently than words ever could. Despite surgeries, disease, and heartache, she practiced gratitude every single day.

So, my question to you, dear readers, is, “What helps you deal with the difficult challenges of caregiving? Is it the support of other people? Is it strong faith? Is it a beloved family pet you can pour your heart out to? Or maybe its releasing your stress and anxiety on paper.

Leave a comment here, and you’ll be entered into a drawing on November 30^th to win an autographed copy of The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir.*

Take good care. You are all, quite simply, amazing.

*Sorry. U.S. deliveries only.

Kitchen Table Memories

Photo Credit: Milkmit (Creative Commons)

As caregivers, we’re so busy putting out fires, and dealing with health care crises that our parents can sometimes feel more like projects to be managed. Here’s to those moments, sometimes few and far between, when we can simply enjoy each other’s company. For my mom and me, it was sitting in the kitchen, sipping coffee, eating lox and bagels, playing Scrabble and laughing over family stories from long ago. Maybe that’s why this poem by Joy Harjo resonated so deeply. It’s a reminder that lifelong memories can be created in the most ordinary places.

Perhaps The World Ends Here by Joy Harjo

The world begins at a kitchen table. No matter what, we must eat to live.

The gifts of earth are brought and prepared, set on the table. So it has been since creation, and it will go on.

We chase chickens or dogs away from it. Babies teethe at the corners. They scrape their knees under it.

It is here that children are given instructions on what it means to be human. We make men at it, we make women.

At this table we gossip, recall enemies and the ghosts of lovers.

Our dreams drink coffee with us as they put their arms around our children. They laugh with us at our poor falling-down selves and as we put ourselves back together once again at the table.

This table has been a house in the rain, an umbrella in the sun.

Wars have begun and ended at this table. It is a place to hide in the shadow of terror. A place to celebrate the terrible victory.

We have given birth on this table, and have prepared our parents for burial here.

At this table we sing with joy, with sorrow. We pray of suffering and remorse. We give thanks.

Perhaps the world will end at the kitchen table, while we are laughing and crying, eating of the last sweet bite.

Do you have a kitchen table memory? Share it here or just stop by and introduce yourself. You’ll be entered in a drawing on August 31st to receive a free copy of The Dutiful Daughter’s Guide to Caregiving: A Practical Memoir. Winner’s name will be selected using the tool at random.org.