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

How About A Mini Break?

Over time, it seems that some of our most profound lessons come from being there for people in ways we never imagined. During six years of helping my parents, every day taught me something new about myself, my family, my friends, or just human nature, in general. Of course, the fact that it wasn’t always pretty would be an understatement.

I discovered that being brave can mean just getting up in the morning; that being stubborn is actually a strength when you’re dealing with a flawed medical system; and that feeling resentful sometimes is perfectly normal because, guess what – we’re only human.

The responsibilities of caregivers are so profound, yet we often hold ourselves up to impossible standards while ignoring the valuable gifts that each of us bring to the table. So, how about taking a break from the holiday hustle to spend a few minutes exploring a prompt I gave my writer’s group for caregivers earlier this year; one that turned into a much-needed affirmation for all of them.

Jot down two or three words that describe you best. Here’s a link if you need help coming up with some traits: https://bit.ly/2RuGKKG. Consider how each of these qualities has shaped your experience of providing care, and write a sentence or two about each one.

Below are a few examples from my own list, and if you’re open to it, please share what you’ve written.

Wishing everyone moments of peace this holiday season.

Humorous: Finding the funny during tough times has often saved me and the people I love, when nothing else could. That was never more clear to me than when I spent a morning planning my mom’s funeral with her help, and a little Barbara Streisand music.

Outspoken: Pretty much what you “see” is what you get with me. A mouthy straight-talker, I believe that caregiving is hard work, even when performed with great love, and we need to speak openly about the challenges as well as the joys.

Letting Go & Holding On

During six years as a caregiver for my mother and father, the key ring I carried would no doubt have made a janitor swoon. It held keys to our family home where my father still lived, his old Camry, my mother’s small duplex apartment, her little Hyundai, and a safe deposit key in both their names. My keys included a few for the house, my Camry, a PO box, and several for the business I’d been employed by for over 20 years. All told, about 15 keys dangled from multiple rings attached to a homely metal snap clip from Home Depot. Fashion be damned.

Then my father died. The house was sold, and the car was gifted to Mimi, his amazing home health aide, with our deepest gratitude. After my mother died in 2013, the keys for the house she moved to after my dad’s death were returned to the landlord, my brother got her car, and the safety deposit box, containing only a copy of her Last Will and Testament, was closed out. At that point, it struck me that the keys I now carried were only my own. And as often happens when reflecting on the joys and hardships of caring for those we love, I felt both lighter and heavier at the same time.

Out of that experience, came a book and workshops focused on helping other adult children feel supported and understood both during and after their caregiving journey. It was a way to grieve the loss of my mom and dad, while holding them close through the stories I shared.

Fast forward to the end of last year when, after much upheaval, I left the job that no longer sustained me to focus on writing and speaking full time. Walking out of the office and turning over the keys to my replacement, I thought of my parents, and hoped they would approve.

So, here I am once again, holding that same shabby key ring, but now it represents a new life filled with promise and possibility. No more steady paycheck, or health insurance, or a presumably “secure” future, but there is a lightness to my spirit that wasn’t there before.

“LET GO” has become my mantra for 2018, starting with the long-held identity of “employee;” but come what may in the years ahead, a daughter I will always be.

 

This perfect photo by Ylanite Koppens from Pexels

What’s in YOUR Caregiving Purse?

Truth be told, I’ve had a thing for purses since the age of four. Back then I used to carry candy, crayons, and a picture of my cat, Mooney. Later, my handbag contained the usual keys, a wallet, a makeup pouch, a cell phone, and a damp washcloth in a plastic bag, (oh, wait, that was my mother). When I became a caregiver though, the contents of this over-the-shoulder life support system quickly expanded with my new reality. Now I carried:

Hastily jotted sticky notes, which sometimes stuck to my butt as I ran errands. One evening, I spent an entire hour grocery shopping with a sign attached to my pants that read “Fleets enema.” Trust me, that’s a back-story you don’t want to hear.

A dozen to-do lists. Actually, it’s pretty normal for me to juggle multiple lists, partly because there’s something so damned satisfying in being able to line through something.

A pound of change in a baggie for the parking meter at my mother’s rehab center. Twenty minutes for a quarter, which is about what my time was worth.

A key ring to make a janitor jealous. It held twelve keys, including my office, house, and car; my parents’ houses and their safe deposit box, along with an assortment of scan thingies from Stein Mart and TJ Maxx for retail therapy.

My cell phone. Instead of salivating like Pavlov’s dogs every time it rang, my body’s response was a spray of adrenaline up my spine that wore me out. To keep my sanity, I would change ring tones every few weeks.

Tweezers, for pulling inch long chin hairs that literally sprang out of nowhere. What’s with that? And of course, I never noticed them until glancing in my car mirror while sitting in traffic. Who can pluck while everyone’s watching??

A pocket calendar with laughably small squares. Does anyone’s life actually fits in those one-inch boxes??

A brochure for an assisted living facility. I picked one up for my mother, but secretly wondered if it might be better for me, instead.

A relaxation CD from a friend. Great stuff, if I only had time to listen. It’s kind of like a lottery ticket. You have to play to win.

Mooshed up Kleenex for those times I was so exhausted and a stranger would say or do something kind. I’m not a crier, but that would always bring me to hot, messy, nose-running tears.

My parents’ healthcare forms including: HIPPA letters, durable powers of attorney; healthcare surrogate documents; and living wills. I didn’t think it the least bit odd to also carry their DNR’s (Do Not Resuscitate), as well. It is always about being prepared.

A list of my parents’ doctors. Unfortunately, my dad was doing a great job of alienating most of them, so the list was constantly changing. One physician told him he had an anger problem and suggested counseling. When my dad actually called to schedule a session, he got a voicemail recording, and left a string of four letter words that I can never, ever repeat.

Last, but not least, I rarely went anywhere without a twisted sense of humor; because, as we caregivers know, despite all our preparation and planning for the unexpected challenges of this role, sometimes laughter can save us when nothing else will.

So, in the spirit of sharing, tell us what’s in your purse today?

 

 

The Cone of Uncertainty-What I Know About Grief

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When I first moved to Florida many years ago, the expression “Cone of Uncertainty” caught my attention. During hurricane season, it refers to the cone-shaped path that a storm might potentially follow at any given time. In other words, the weather forecasters can’t really pinpoint when or where it might land.

Turns out, that’s also a way to describe how we grieve.

Those familiar with Elizabeth Kubler-Ross know that she divides the process of grief into five stages – denial, anger, bargaining, depression and finally acceptance. To that neat package, I say, “If only it were so simple.” Imagine being able to identify that you’re angry with only two more stages to go, or feeling depressed, but relieved that acceptance is just around the corner. Unfortunately, it’s not that linear. Grief will pinch your heart months or years later walking into the hardware store and smelling pipe tobacco, or driving in the car listening to the radio and hearing a parent’s favorite tune. It is not always loud or obvious, and surprisingly not a constant.

Sometimes deep sadness is coupled with a mix of other emotions. If a parent was suffering you feel at peace knowing their pain is gone. You may be relieved that the stress and challenges of caregiving are at an end, yet at the same time feel unmoored because the concentration and energy you devoted to this job are no longer required. For caregivers in particular, grief can sometimes seem insurmountable for this very reason.

In times of great loss, regret can often keep us stuck. The death of a parent is the death of hope. You may have longed for a different relationship with them. One in which you said or heard, “I love you,” or “thank you,” more often. Our parents also tend to be the keepers of family history and with their deaths we lose our connection to the past.

Guilt is another difficult emotion to overcome. You wonder if you did enough or should have done things differently. Harsh words were spoken and apologies are too late. Now is the time to remember you’re only human. Being the perfect child is just as unrealistic as being the perfect caregiver. Stop judging yourself. Instead create something positive out the negative. Maybe your father liked his cats more than his kids. Make a donation to The Humane Society to honor his memory. Maybe you wished your mother had spent more time with you as a child. Look into becoming a Big Brother or Big Sister or volunteer as a reader to kids at the local elementary school. I’m not suggesting you leap into anything immediately, but there are ways of softening the guilt and regret that attach themselves to the death of a parent.

Keep in mind that the experience of losing a mother or father will be different for every sibling. It depends on your relationship with that parent; what words remained unspoken; and how you viewed your contribution to their well-being, not just at the end, but throughout their lives.

Anniversaries of a death or certain holidays can be tough. A year after my Dad died, I raised a glass of wine, played Puccini’s Madame Butterfly (our favorite opera) and said, “Daddeo, wherever you are, I hope it’s interesting.” He was fond of telling me that heaven seemed like a very boring place. On Mother’s Day, I do all the things my mother loved to do – thrift shopping, listening to Barbara Streisand CD’s in the car, eating lunch at Too Jay’s, then I come home and tell her ashes all about it.

If you don’t want to be alone, plan ahead to get together with people who will be emotionally available for you. Just like everyone grieves differently, your friends, family and co-workers will support you in different ways. Not everyone can be a good listener when you need to talk through the grief. Some people are better with concrete tasks like bringing over dinner or taking care of a chore you’ve been putting off.

Midway through the experience of attending to both my parents, what concerned me was something that often occurs with caregivers. Our identities merge with the task of caring both physically and emotionally for an aging parent and at some point the question arises – “Who will we be when the caregiving ends?”  You might discover this type of service is something you’re really good at and you want to do more. For someone else, the idea of being responsible for another living creature, even if it’s just a pet, is way too much. The point is to be gentle with yourself, no matter what you feel.

Keep in mind, there’s no set timetable for grieving and no right way to do it. Give yourself permission to experience moments of joy amidst the mourning. It does occur. Don’t try to be all things to all people. If that means a moratorium on helping others deal with the loss, so be it. If you need help, ask for it – from clergy, from friends, a support group or a grief counselor.

Grief, which is so often muddied with guilt, regret and anger, can be exhausting. Doing what we can to make things right with our parents before it’s too late, opens us to the possibility of experiencing what Mary Pipher, psychologist and author, refers to as “good, clean sorrow.” It’s certainly something to hope for.

Excerpt from The Dutiful Daughter’s Guide to Caregiving

Photo by Carlos Koblischek

Speaking Up

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Awhile back I invited my writer’s group to compose a letter to people they interact with who are not caregivers themselves. To say the flood gates opened with this assignment would be an understatement.

Responses included:

The son or daughter who never calls, or who only calls to tell you about their problems. Or maybe they rarely visit, or never ask how you or your spouse is doing?

The busy sibling who has no time to help, yet is always happy to criticize your caregiving efforts.

Numerous acquaintances who use that well-worn phrase “Let me know if you need anything,” as a sign-off to every conversation, and that’s where it stops.

The well-meaning friend who comments on how worn out you look, just when you were feeling pretty good.

The doctors who act like you and your parents are working for them, and not the other way around.

It’s clear this particular prompt struck such a nerve, and in all instances the group remarked that they stifled their responses for fear of being labeled a complainer, a troublemaker, or a bitch. I get that keeping quiet can sometimes be the better plan, but, there are many instances where we’ve simply got to speak up, because remaining silent only reinforces a status quo which is hurtful to those we love, and to ourselves.

Here are a few excerpts from my own letter, written to some of the physicians involved in my parents’ care over the course of six years. This isn’t an indictment of all doctors, for some were compassionate, generous with their time, and truly seemed to understand the challenges faced by my parents, and me as their advocate. For the record, I gladly wore the labels noted above and did share a few of these comments with healthcare personnel.

______________

Dear Medical Professional,

Before we begin, please fill out this ten page form of very tiny type, documenting your qualifications. Already completed this for the last caregiver? Sorry, I’ll need you to do it all over again. You’ve been waiting to see me for an hour? Well, everyone knows that a 9 o’clock appointment really means 10.

Do not automatically assume that all patients in their late 80’s have no capacity to understand what you’re telling them. Also, be prepared to answer a list of questions about side effects, expectations of recovery, etc. after you propose a risky surgery or procedure. Never use the enticement, “You’re not paying for this. It’s covered by Medicare.” Where do you think Medicare gets their money?

Please refer to elderly patients as Mr. or Ms. or Mrs. and not by their first names, or as the UTI or cardiac cath in room 202. Surviving this country’s health care system thus far, entitles them to a great deal of respect, and you are treating a person, not a condition.

Stop saying, “How are we doing?” when a caregiver and her parent finally get to see you after sitting for two hours. WE are pretty damn tired of late night trips to the ER. How are you?

Don’t look at a caregiver and say, “You need to do such and such,” as if this person has been hanging out on the couch eating bonbons and watching soap operas, all this time. Instead, look her in the eye and ask, “And how are you holding up?”

The next time a nurse brings an elderly patient the two Tylenol you prescribed for pain due to a pelvic fracture, don’t get all huffy when the daughter/caregiver raises hell and demands to speak with another hospitalist. Prescribing opiates may not be your first choice, so do your research, or call in a pain management specialist. Just don’t minimize that patient’s distress.

To close, I get that you work long and demanding hours. As a caregiver, so do I. Maybe we can work together as a team to change things in this broken healthcare system of ours. Please accept these suggestions as a token of my commitment to this worthy goal. The next batch of suggestions will be accompanied by a bill for consulting services rendered. Payment will be due within 30 days, and FYI, I don’t accept insurance.

Respectfully,

Judith Henry

______________

Readers, if you’re game to give this exercise a try, pen your own letter to someone, and look closely at what you’ve written. Like the members in our writing group, you may feel a sense of relief just getting these unspoken words out of your head and onto paper. But think for a minute – is there a way to present your thoughts constructively to the person you’re writing to?  For example, instead of automatically saying, “I’m fine” to the adult kid who calls with a cursory “how are you?” be honest. To the physician who barrels in with a treatment or surgery, assuming your parent (or you) will acquiesce quietly, explain you have a list of questions prepared to be answered first.  When someone tells you, “Let me know if I can do anything,” don’t just say ok. Tell them what they can do to help, and be specific.

You never know. Your words may just start changing things for the better.

 

The Facts of Life-A Different Perspective

Dad & Gee

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.

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.