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.

Ten Things I Learned From Caregiving

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Not being a rainbow and pink unicorn kind of gal, I have to applaud the honesty of Ann Brenoff’s recent piece on HuffPost entitled, “No, Caregiving is Not Rewarding. It Simply Sucks.”  There isn’t a caregiver alive who can’t identify with that kind of bone-deep exhaustion, anger, and frustration.

Let’s face it, if given a choice, we’d rather the people we love remain healthy and vital forever, making this role unnecessary. But, that’s not how it happens, which brings me to the point of writing this piece.

As a family caregiver and working daughter, juggling the demands of a father with dementia and a mother with breast cancer and heart disease, there were often days I questioned my sanity, and ability to keep on. I fantasized about getting my real life back, then instantly felt guilty knowing what that would mean. I was doing too much. I wasn’t doing enough. Compassion fatigue, fractured family dynamics, and issues with paid caregivers often  stressed me to the max, and every ring of my cell phone triggered a fight or flight response.

Yeah, a lot of it did suck, but there were also moments of clarity, purpose, and deep connection that might never have happened without the accompanying angst.

This is what I know, for sure.

1. I believe in kindness, but don’t mess with me when my parent’s well-being is at stake.

2. Digesting large amounts of medical information quickly? No problem. Hospital food?           That’s another story.

3. Forgive the woo-woo, but part of my purpose for being here was to care for my folks.

4. Not really a crier, the kindness of a stranger can still disarm me, every time.

5. After six years as my parent’s healthcare advocate, there isn’t much that intimidates me.

6. At the end, our deepest conversations can have little to do with words.

7. Just being with my folks was sometimes more important than doing for them.

8. Whether giving or receiving care, we all have a deep need to be understood and                      appreciated.

9. Laughter and tears can both be ways of dealing with loss.

10. You can ultimately see caregiving as a gift, and still want to return it now and then.

Now you know mine. How about sharing a few of your own caregiving truths.

And by the way, the bird’s nest in this post is a treasured batik, created by my mom, Sally, many years ago.

The Facts of Life-A Different Perspective

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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 scenethe 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.

Are you the bug, or the windshield, today?

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As the Mary Chapin-Carpenter song goes, “Sometimes you’re the windshield. Sometimes you’re the bug.” While there’s simply no way to steer clear of the many challenges this caregiving journey brings, we can learn so much from them. Here are just a few things I discovered along the way.

In addition to constantly multi-tasking, you’re also dealing with a multitude of conflicting emotions. Caregiving is damn hard work, and if you don’t explode once in awhile, someone needs to take your pulse. Give yourself permission to feel what you feel, without judgement. Sit down with a cup of hot tea or a glass of wine, grab a journal, and write it out.  Venting on paper offers an opportunity to safely process all that we’re going through, and the realizations that are often unearthed can be very powerful.

When the planets align and things go according to plan, that’s usually due to one person who’s willing to go the extra mile (in addition to you, of course). Maybe it’s the doctor’s receptionist who slides your dad in for an appointment on a day you can be there; or the nurse’s aide at your mom’s rehab facility who always treats her with such respect. To acknowledge such kindness, I maintain a stash of thank you cards and inexpensive gifts like pretty notepads, hand-made soaps from a local artisan, $5 gift cards from Starbucks. Small gestures like this can can have a big impact, because they’re so unexpected. The caveat is that you have to do it for yourself, as well. For me, a small reward was heading to a favorite thrift store for a $3 treasure, or 15 minutes of quiet with a good cup of coffee from my favorite cafe.

Reach out to a support group, either close to home or online. You may think you don’t need this, but the reality is that caregiving takes a village. Isolation is a very real concern that can affect your mental and physical health. These communities are a way to make friends, receive support and encouragement, and gather helpful strategies from people who are living the tough stuff every day. Many focus on special needs like caring for a loved one with dementia (check out Brenda Avadian’s site, The Caregiver’s Voice), or working daughters caring for aging parents (Liz O’Donnell of WorkingDaughter.com has a site that offers great advice and support, and a FaceBook group that offers the same.)

Accept help early on, while people are most likely to offer, even if you think everything’s under control. The reality is that the longer you go on doing it all yourself, the less people tend to believe you need assistance. Be specific. Maybe it’s asking someone to bring a meal; or having a friend sit with the family member you’re caring for, so you can take a break for a few hours. Make a list that includes daily, weekly or monthly chores that others can perform, and when someone says, “Let me know if there’s anything I can do” be ready with, “Well, actually there is. How about……” Believe me, this points out who you can count on pretty quick.

Maintaining a sense of humor while caregiving isn’t a luxury. It’s a necessity. Laughter, even the dark kind, allows your body to relax during stressful times. But, did you know it can also keep you from being crushed by emotion? It saved me countless times, especially the last day I spent with my father at the hospital, simply holding his hand. When the nurse asked if I wanted someone from the clergy to visit, I asked for a rabbi. As he entered the room, I couldn’t help thinking that he didn’t look like a member of my tribe. Reading my mind, this lovely man said, with an apologetic smile, “I’m not Jewish, but will an Episcopalian do?” In that instant, I laughed. Not a nervous titter, but a loud, life-affirming sound that provided me with what I needed most – release and relief.

I once read that, “If only” is the saddest phrase in the English language. Don’t become a prisoner of regret after a parent is gone. Be generous now with some simple, yet powerful phrases. “I love you.” Thank you. I forgive you. Please forgive me.” You would be amazed at their ability to bring about positive change in a relationship. A great book on this subject is Ira Byock’s, The Four Things That Matter Most.”

What I continue to realize is that we are all in this together, and sharing our experiences is how we begin to change things for the better. Why not take a minute and offer up some of your own hard-earned wisdom?

Planning Mom’s Funeral with Barbra Streisand’s Help

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In 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. Every time it happened, I found myself mentally trying to prepare for the end. Her end. And there were so many things I still wanted to say and ask.

During one of my hospital visits with her, as we’re discussing how much she misses her art classes and how my younger siblings are doing, I decide to broach a topic that has been weighing on my mind lately.

“Mom, I love you, and it’s important to me that you get the send-off you really want, when the time comes. How about if we put our heads together and plan your funeral?”

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

This was one of the many things I loved about my mother — her practical nature; plus, the fact that we shared the same preference in curse words.

She wants to be cremated like my father, but we’ve never discussed where she wants her ashes scattered. Was it in the same place as his — the canal behind the house they’d lived in for 50 years?

“No, no. Don’t dump me in the water. I can’t swim,” she says in all seriousness.

“I want to be scattered over the nearest Stein Mart,” I say with a straight face. “How does that sound?” We were the discount queens, she and I.

Laughing and shaking her head, she says, “I want to be close to you. How about sprinkling me in your backyard in Tampa? Would that freak you out?”

I don’t even hesitate. “Fine with me.” I’m already imagining the perfect spot underneath my papaya tree, strung with wind chimes and bird feeders.

Already knowing the answer, I then ask, “So, do you want a traditional service or do you want a kick-ass goodbye party?”

“No schmaltzy, depressing stuff,” she replies. “I like the idea of friends and family just coming together to share the good times we had. Let’s do a party with invitations.”

Her right hand, the long elegant fingers now bruised and crooked with arthritis, trace invisible text in the air. “‘Come celebrate a joyous life.’ Oh, and put ‘no gifts necessary.’” She guffaws loudly. It’s a hopeful sound to me, and for just a second I forget how weak she’s become.

We agree that the perfect place to hold her bash is the Beardall Senior Center, where she’d been taking art classes for years. She has made dear friends there who continue to call and visit when she’s unable to attend.

“What about music?” I ask. “I’m thinking a combination of Klezmer and Barbra Streisand. I know those are your favorites.” She loves that idea and her imagination and sense of humor take off. “Oh, yes. Let’s do Bab’s version of ‘Happy Days Are Here Again.’” And we howl with laughter.

We come up with a few more Streisand songs including “Someone to Watch Over Me,” “Here’s to Life,” and “Second Hand Rose” since Mom is such a dedicated Goodwill shopper.

“I want balloons and good food. Let’s get TooJay’s to cater it.” They were the closest thing to a deli in Orlando and her favorite place for a kosher hot dog or pastrami sandwich.

“I wonder what your brother and sister would think if they knew you and I were planning my funeral?” She gives me a sly co-conspirator’s smile. My mother loves all her children, but she and I are bound by the secrets she’s told me over the years.

While we’re making more arrangements, my mother’s day nurse, Anne, who looks like she’s twelve, comes into the room. “We’re planning a party,” my mother tells her, and I know what’s about to happen.

“Oh, what’s the occasion?” Anne chirps, walking into the trap. My mother delivers the punch line with the skill of a borscht-belt comic. “My funeral!” she says. Buh dum bum.

Anne’s perfect features scrunch into a look that says, “Oh, shit, they didn’t tell me how to handle this in nursing school,” and she turns to me for help. I shake my head. She’s on her own.

My mother shares the party details and tells her in a no-nonsense tone, “It’s important to let your family know what your wishes are. After all, it’s your funeral,” and laughs at her own joke.

“What a good idea,” Anne fibs politely, backing out of the room. We know she’s headed towards the nurses’ station to tell everyone about the crazy lady and her daughter down the hall. We don’t care.

By now my mother is looking better, with more color in her cheeks. She reminds me of a tiny sparrow sitting up in that bed and suddenly the enormity of it all bears down on me and I want to go home. It’s time to wrap this up for now, say goodbye, and drive back to Tampa while I can still keep my eyes open. Leaving is always a push/pull.

Seeing the struggle on my face, she smiles and says, “You did good,” and tells me how happy she is with the arrangements we’ve made. I take a deep breath and give myself permission to leave, and finally, to grieve.

The Stuff of Memories

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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?

A Caregiving Cirque de Surreal

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By Lithograph by Faddegon & Co., lith., Amsterdam, Holland [Public domain], via Wikimedia Commons

 

One night, I got caught sleeping at the office in a queen-sized bed that stood where my desk should have been. All my teeth started falling out in one long strand. There were terrorists at the mall. I tried to escape but couldn’t pick my car out of the 1000 other grey Camry’s in the parking lot. My contact lenses were all fogged up, so I couldn’t see the numbers on my cell phone to dial for help. Frustrating? Yes. Bizarre? Not so much.

Welcome to Caregiving 101, where our dream life can make more sense than real life.

During the six years spent caring for my parents, I sometimes felt like a high-wire act in a crazy three-ring circus. Maintaining a full time job, living two hours away from my folks, dealing with a broken medical system, healthcare emergencies, fractured family dynamics, and a father who was sliding into dementia yet struggling to maintain control, there were times when I questioned my sanity and the ability to keep going. What often saved me was a sense of humor that could politely be described as “dark.”

There was the miserable rain-soaked day when I drove to Orlando to register my mother’s last will and testament. Exhausted and choking on the words, “My mom has died.” I asked a security guard at the courthouse for directions to the Probate Division. He took that opportunity to rifle through my brief case and purse, proudly confiscating a pair of tweezers. TWEEZERS. At that point, I simply burst out laughing and told him, “Good job. What a relief to know that the chin hairs of Orange County are safe for another day.”

Even my book’s tongue-in-cheek title came out of an anxiety-laden visit one weekend to check on each of my parents – my mom in rehab following her mastectomy and my father at home, recovering from a fall. Driving with my head out the car window like a dog on a road trip, I had to find some way to calm down. A stop for coffee helped a little and got me to my dad’s house fifteen minutes later than my, always punctual, 9 AM. Sitting at the kitchen table in an old flannel robe, and checking his watch, he tisked, “Well, well, the dutiful daughter is finally here.” At that point I had three choices. The first was to start crying; the second was to get angry; and the third was to laugh, kiss the top of his head and say “Thanks, Daddeo, you’ve given me the perfect title for a book.” Choosing option number three turned out to be life-changing.

Maybe we should start taking laughter a little more seriously. Research shows that it allows our bodies to relax during stressful times; releases endorphins, a natural pain fighter; lowers blood pressure, and boosts our immune system. It speaks to resilience in the face of great turmoil; protects us from being crushed by our feelings; makes it easier to step back and regain perspective during moments of anger; and sometimes it can be a powerful way to soothe a broken heart. All that and you don’t even need a doctor’s prescription – just a willingness to embrace the sheer absurdity that life tosses you, when least expected.

As caregivers, we have to find respite from the mental, emotional and physical strains of this journey.  Embracing the words of Linda Ellerbee, an American journalist, seems like the right place to start.

“In this world, a good time to laugh is any time you can.”

What do you think? Is there a time you could have cried, but chose to laugh instead?

 

A Caregiver’s Report Card

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Are you secretly giving yourself a grade for caregiving? Feel you’re falling short? Don’t be ashamed to say so, because I get it. Growing up in my house, a grade of “C” was equivalent to an “F,” and at dinner each night, my younger siblings and I had to come up with good answers to my father’s perpetual question, “What did you do of any consequence today?”

Decades later, while caring for both my parents during the last phase of their lives, and still putting myself to Dad’s test, these are the responses I finally arrived at.

Perfect solutions don’t exist when caregiving, and what may work one day, may not work a day, a week, or a month later. Even knowing this, we often drive ourselves to exhaustion processing tons of information, and absorbing solicited and un-solicited advice while trying to honor the hopes and expectations of the parent we’re caring for. It’s inevitable that sometimes “analysis paralysis” sets in. This happens when we worry about not having all the facts, are concerned the decision may be the wrong one, or have convinced ourselves that the worst possible scenario is going to occur. What can help is learning to stop second-guessing our decisions; remembering we can only work with what we know at any given time, and making peace with the idea of “acceptable for now.”

Caregiving is a verb, and our days run on multiple To Do lists – dealing with a deeply flawed medical system, particularly where the elderly are concerned; ordering and picking up medical supplies and prescriptions; filling out insurance forms; and responding to crises we’d rarely imagined. It’s never-ending, yet caregivers often feel they should be doing more. Once in awhile, try making an “Accomplishment” list, instead. Write down all the things you manage to handle while taking care of a parent/ a spouse/ a child/ a full time job/ a home/your own needs, or any combination thereof. Even you will shake your head in disbelief at what you’re achieving under great odds.

Try not to compare your caregiving experience with others. I was speaking with someone who’d been taking care of a father with dementia for over 10 years. When I commented on how hard that must be for her, she said, almost apologetically, that her dad was in a memory care unit, so she wasn’t a twenty-four hour caregiver. The reality is that caregiving is a 24/7 job whether your parent is with you or not. You’re still the one being called at all hours when issues arise and difficult decisions must be made, so don’t ever devalue your efforts.

Often, the toughest part of caregiving is recognizing that you can’t always make things better for Mom or Dad despite your love and efforts. And sometimes, being with a parent is more important than doing for them.

Finally, forgive yourself for being irritable, resentful and sometimes wishing your caregiving responsibilities were over. It doesn’t make you a bad person. It just makes you human. The irony is that accepting this fact can release some of the unrealistic expectations and pressure we put on ourselves to try and fix everything that goes wrong.

So, for those of you who still feel the need to grade yourselves, I’ve devised a new system with caregivers in mind.

                                                    A – Accomplished

                                                    B – Big-hearted

                                                    C – Compassionate

                                                    D – Dedicated

                                                    F – Fabulous

Now – go ahead and give yourself the “F” you deserve.