In the closing paragraph of The Dutiful Daughter’s Guide to Caregiving, I say, “…this is what I know to be true. I really am okay. And you will be, too.”

Since writing the book, I’ve been spending more time exploring what “I’m okay” really means. Well, actually, what “I’m better than okay” really means. A lot of it focuses on rediscovering who I am after releasing long-held identities as a caregiver, and (yes, I’m that old) as an employee. Big stuff. BIG stuff.

Of course, this will be different for everyone, but, just like caregiving, there are always common threads that run through the experience. And also just like caregiving, this is a journey made richer by traveling with friends like you who find yourselves on the same road.

So, here’s the plan. We’re going to do some exploring, tap into our creative side, and gather up big handfuls of joy. Along the way, I’ll share my own low-budget journey of self-discovery, art and writing prompts that go deep, inspiring conversations with women just like us, and tons more goodness.

Of course, there’ll still be lots of support and encouragement for those still walking the caregiver path. You are, and always will be, my people. Just think of this as a mini-retreat where we open ourselves up to possibility, and embrace the potential for what comes next.

The Art of Gratitude

Layout 1

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.

 

A Caregiver Valentine

IMG_0425

I just finished reading a little book entitled, “Congratulations, by the way.”

The author, George Saunders, speaking to a graduating class, describes what he’s regretted most in his life. Turns out, it was a failure of kindness. Those moments when he hesitated to offer someone a word, a touch, or a smile to make them feel valued and understood.

I see this often, but with a twist. In caregiver communities, people reach out to each other daily with warmth and compassion, yet they don’t extend that same empathy to themselves.  Instead, there is only a litany of should’s:

I should be stronger. I should be able to handle all this. I should be doing a better job.

The thing is, what you are doing is often an exhausting, all-consuming, roller-coaster ride in the dark, and there are times of questioning your sanity and the ability to continue. Yet, despite all this, you keep on going. And that needs to be honored.

So, here’s to you on Valentine’s Day.  Nothing fancy. No roses or gooey sentiments. Just a good, strong, get-the-job-done cup of coffee that speaks to some of your finest qualities.

As George Saunders says, “Try to be kinder.” And I would say to caregivers everywhere, “Begin with yourself.”

 

Hug Your Pharmacist Today

Screen shot 2016-01-10 at 10.33.23 AM

January 12th is Pharmacist Day, and it’s time to share a tip straight from Chapter Five of The Dutiful Daughter’s Guide to Caregiving, entitled “Kosher Pickles. Check. Blood Pressure Meds. Check.”

You may not realize it, but when caring for an aging parent, one of the most valuable relationships you can cultivate is with their local pharmacist.

Fortunately for me, my mom was a smart cookie who’d already thought of that. She was a regular at Harrison’s Pharmacy, which was only a 2 minute drive from her home. And while it wasn’t always the cheapest place to fill some of her prescriptions, the assistance we received over a period of time was invaluable. About once a month or whenever a drug was added or subtracted by one of her physicians, the pharmacist would print out an updated list that included what each medication was for, and the exact dosage. So, instead of dragging a laundry bag of pill bottles with her to each doctor’s appointment, she took this list, instead. In addition, she gave copies to me, my siblings, paid caregivers, and also kept one in her handbag for emergency room personnel at the hospital.

Since older adults can often find themselves under the care of multiple specialists prescribing a cornucopia of drugs, a knowledgeable pharmacist can be the first line of defense when it comes to sounding the alarm about potential side effects and interactions. Especially important, since taking more than three medications daily can increase those chances.

By the way, what works for your parent can also work for you. So, next time you visit your own pharmacist, take a minute to say “Thanks.” Down the road, it could be a life-saver.

The Wisdom of a Caregiver

typewriter

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

Family Caregiver’s Month

cactus

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 30th 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.

 

Coloring is for Grownups

secretgarden

As kids, who didn’t inhale that new crayon smell or covet that fresh box of 64 Crayolas every new school year. What was your favorite color? Mine was magenta, mainly because I liked the sound of the word. MA-GEN-TA.

Remember how when we were coloring, all our troubles fell away? Our right brain engaged; our head was inches from the page; and our tongue peeked out with rapt concentration.

Why did we stop? Maybe, because growing up meant putting away childish things. Good news, though. Research now shows that coloring can be a great stress and anxiety reliever, offering a much needed break from the responsibilities that often weigh so heavily on our shoulders. It also enhances motor skills and trains our brain to focus.

There are some fabulous coloring books out there for adults these days – from florals to animals to zen inspired designs. And who cares what people think? I’m putting my pictures up on the refrigerator door.

Leave a comment and you’ll be entered in a drawing on November 30th to win one gorgeous coloring book by Johanna Basford, along with a set of colored pencils.*

On your marks, get set, have some fun!

 

*Sorry, U.S. readers only.

Sharing The Hospice Experience

Encountering the Edge_front

Despite the fact that none of us gets out of this world alive, generally speaking we’re uncomfortable with the concepts of death and dying. In her book, Encountering the Edge: What People Told Me Before They Died, Karen Kaplan, an ordained rabbi and board certified chaplain, demystifies the process by talking about her experiences with hospice clients of all ages and denominations. Listening as they share their stories, their hopes and their fears, she offers the powerful gift of being heard, with warmth, gentle humor and deep compassion.  Below is an excerpt:

_________________________

As you accompany me to my patients, you may find yourself throwing various assumptions overboard. Such as when I sing to them, you might think I only sing sweet and religious songs like “Swing Low Sweet Chariot,” or “Kumbaya, My Lord,” or something based on the Psalms such as “May the Words of My Mouth.” Sam, twenty-eight years old and formerly a policeman, was one of the youngest residents in a nursing home relatively near my office; he was there on account of a disease that was stealthily stealing his motor abilities. Almost every time I stopped in, he gave me a broad delighted smile. But he decidedly did not want to hear a “girlie” thing like a hymn, though his mother did. She visited him at the nursing home practically every day to patiently feed him lunch served along with her cheery and loving talk. I often saw her during my weekly visits, and because she found my hymns soothing, I sang them for her benefit when she was around. She kept requesting them every time our visits coincided, although she had a thing or two to say to God due to the disease that was destroying her son. Sam, as I implied before, was not ambivalent about religion. He simply was not on board with it, so I tried to think of something nonreligious to sing. I had recently found out that one of the things Sam missed a lot at the nursing home was beer. Since I could not quickly arrange to have it made available (this would have required a doctor’s order), I thought a song about such beverages might raise his spirits at least in part. So I energetically sang “What Do You Do with a Drunken Sailor,” “Ninety-Nine Bottles of Beer,” and “In Heaven There Is No Beer.” All of these elicited his distinctive lingering smile. On subsequent visits, when I asked if he wanted to hear these again, he formed an even longer-lasting smile and said, “Sure!” Even his mom allowed herself a grin. At later visits when he could no longer indicate what he wanted to hear, his smile acted as confirmation.

One of Sam’s dying wishes was to get a tattoo showing his police rank and years of service. Given his condition, the procedure would have been painful, but his response was, in his soft high-pitched voice, “I’m tough.” Unfortunately, this was complicated to arrange. For one thing, he was not strong enough to leave the nursing home to appear at the tattoo parlor. There was some talk of getting a tattoo artist to make a house call, but by then, Sam was too weak to endure getting the tattoo. Soon after his disease had progressed to that stage, my husband Steve and I saw a performance of Hawaiian hula dancers, and I noticed that they had tattoos—not the kind we typically think of with pictures of hearts and arrows and letters, but of geometric shapes. One of the Hawaiian performers explained that their tattoos signify such matters as family connections and position in the social hierarchy. The higher the rank, the more elaborate and more numerous the designs. I thought of Sam, who wanted us to read his epitaph on his skin, proclaiming who he was and what he had achieved.

_________________________

karenphoto

Ordained in 1992, Karen was among the first 200 female rabbis worldwide. In 2007 she became a board certified chaplain and served hospices for seven years. Her goal in writing Encountering The Edge: What People Told Me Before They Died,  and her blog, offbeat compassion, is to provide a gentle entree to a forbidding yet mesmerizing subject. The book is available on Amazon in softcover, a Kindle version, and now as an audiobook, which can also be purchased on audible.com.