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.

What Makes Herbs & People Grow

You can take the girl out of caregiving, but you can’t take caregiving out of the girl. Right now, there are nine different herbs planted in pots on my back porch. They have names like Rosy, Cilia, and Dilly – all decidedly female, even Reggie One and Reggie Two, the oreganos. I talk to these gal pals throughout the day, giving them reassuring little leaf rubs, keeping them hydrated, looking out for leaf blight, and offering lots of reassurance. This, of course, could be considered either crazy or endearing, depending on whether you embrace a bit of woo-woo in your life. The thing is, they look like they’re smiling, and that delights me.  This, coming from the person who, years ago, told new plants, “I hope you stick around, but there are plenty more where you came from.”

Digging deeper, I’m figuring out this goodness stems from being open to embracing new ideas and practices that inspire and sustain me. Exactly what I want for YOU, beginning with this essential truth. Whether currently a caregiver or a perennial – you, me, and the thriving plants on my deck have something in common. Like them, we can grow. We can bloom. We can flourish. What it takes is our encouragement, our attention, and our kindness to each other.

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What or who inspires you?

Is there a creative activity you’d like to try out, or get back into?

What is your favorite thing to do when you have a little time?

(If it’s “sleep,” I suspect you’re in caregiver mode.)

 

From Caregiver to Perennial

Welcome! If you’re visiting my little patch of virtual soil, it’s probably safe to say that you’re a Caregiver. And because your identity is securely tethered to that role, it’s hard to keep the parts of yourself alive that have nothing to do with caregiving. You know – the painter, the quilter, the photographer, the writer, the crafter, the gardener – to name a few.

Well, now we’re going to explore a second possibility, as well – that you’ve come through caregiving, or another kind of soul-changing experience, and are wondering who you are or who you want to be in this new life of yours. You are what I call a Perennial. Someone strong enough to survive the winters of your life, and blossom with each new spring and summer, and in the fall – ready to reflect on the past and sow your hopes for the future.

No matter which of these descriptions resonate with your amazing self, you’ve come to the right place.

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 will always be lots of support and encouragement for those walking the caregiver path, because nothing will ever change the fact that You. Are. My. People. Just think of this as a mini-retreat where we open ourselves up to possibility, and embrace the potential of what comes next.

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Still not sure? Here’s a little Q & A to help you decide.

Will it be mouthy and good-humored? Uh, hello, it’s me.

Open and honest? Still me.

Positive and hopeful? Yes, more please.

Fun, yet practical? As a bohemian soul with a bean-counter’s brain, count on it.

 

YOU’RE ALLOWED TO FEEL RELIEF

Last year, a dear friend of mine lost her husband of 36 years to colon cancer. She’d been his caregiver for half their marriage, yet they had a relationship to envy. No discussion was taboo between them. Honesty was valued and expected. He was her advocate, her cheerleader, her defender, and she was his. They could make each other laugh, even during the darkest times. Don’t get me wrong. It wasn’t the stuff of Hallmark movies, but as she would tell me now and then, “He’s so damn hard to stay mad at.”

When he died early one morning, asleep in the bed that hospice had brought him, she called me a few hours later in tears, “He’s gone, and I feel relief.”

Her words made perfect sense to me – an honest reflection of the duality of life when caring for someone we love. Seeing them hurting, declining physically, and, in some cases, mentally, is often the hardest part. But, when their pain is gone, our sorrow is tempered slightly, because we know they’ve been released and are finally safe.

Even with that said, there have been too many times when I’ve heard caregivers apologize for speaking this feeling aloud – maybe for fear of being judged by the listener, or by themselves. Then, it becomes one more burden for someone already dealing with a heavy heart.

So here’s the takeaway, dear friends. Relief is a natural  reaction to grief, stress and worry. It doesn’t mean you loved the person any less. It doesn’t mean you wouldn’t do anything for them if they were still alive. It doesn’t mean that you won’t continue to experience a deep sense of loss. It means you’re human.

Feel what you feel without guilt, shame, or second-guessing – because this is how the healing begins.

 

 A painting of mine entitled, “Tending to Our Grief”

You Might Be a Caregiver If…

As most of you know, every month, I am privileged to facilitate a writer’s group specifically for caregivers. One of our members, Terry, wrote a piece that goes to straight to the heart of what it’s like to be on this journey, and she has graciously allowed me to share it with you.

You might be a caregiver if:

You experience a slight increase in your heart rate when you recognize the caller id is your loved one’s assisted living facility/nursing home/rehabilitation center

You quickly dart your eyes to your spouse and wordless communication this is ‘one of those’ calls before the caller can complete one of the following phrases: ‘unwitnessed fall’, ‘EMS is on route’, ‘being transported to the Emergency Room

You remind the nurse to be sure your loved one is sent with a jacket even though you know that won’t be enough to keep them warm once they arrive

You can put together a bag of essential items for an extended ER visit in less than five minutes

You can quickly review your planned activities and begin cancelling/postponing them on your way out the door

You have your driver’s license out of your wallet as you walk into the ER lobby

You have a prepared speech for the ER staff (preferred arm to use for a blood draw, needs extra blankets, list of artificial joints/pacemaker/etc.)

You can recite their list of prescription medications, drug allergies and reactions, date of last visit to the ER

You already have a Health Care Surrogate document on file at the hospital

You know which tests they are going to perform before the doctor begins placing the orders

You know you won’t be leaving for at least four hours

You know where every bathroom is in the ER area

You have spent at least two birthdays/anniversaries/holidays in the ER or hospital with a loved one

You have postponed, cancelled or returned early from a vacation (or simply skipped planning one)

You would do it all again, without hesitation, if needed

To caretakers everywhere, keep your chin up and your sense of humor handy. You are very special people and the best advocates for your loved ones. Remember to take care of yourself too.

I had no idea when I wrote this story that my role as caregiver would end eight days later. My mom had a second fall on December 13th and broke her hip. She was transferred to the Sun City Hospice House so they could help manage the increased pain. Once they administered the pain medication, she finally relaxed and went to sleep. She never woke up again and she died peacefully on December 15th with me, my husband, Paul, my cousin, John and his wife, Mary by her side.

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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

Courage, comfort, and joy

As 2017 winds down and 2018 approaches, please accept a HUGE thank you for reading my blog posts and following my Dutiful Daughter FB page. Your comments, shares, likes, and loves mean the world to me, and I’m honored to be part of your caregiving journey.

On December 31st, my work status changes from employee to freelance writer. Finally time to launch my online writer’s group for caregivers; hold women’s respite workshops combining art and writing; and of course, continue to find and share great content with you all.

XOXO,

Judith

(handmade holiday card by yours truly)

 

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?

 

 

Faith, friends and fur babies

What do these words have in common? According to the amazing caregivers who answered my FaceBook shout-out, these are all ways of finding peace when you’re between a rock and the hard place of caregiving. Read on for even more wisdom from caregivers just like you. Many thanks to everyone for being so generous with your time and your words!

I kept a list of goals accomplished, because you do accomplish things . A brief list of achievements reinforces that you are indeed effective. Cathy G

You must find someone to take over your caregiving for an hour, a day, or a weekend so that you can do something for yourself. Ginni B

One word – family. My mother’s illness and eventual death brought my brothers and me such closeness that I almost think she planned it that way. Brenda B

Laughter is THE best medicine. Look for it. It’s there! Cathy S

Make a self soothing box. Find a pretty box (any size you prefer). Put inside the box things that soothe you Like: candle,scented lotion,picture of your loved one when they were young, rock from a vacation, cork from a bottle of wine that holds a story etc.  Sheila A

Reaching out for help. I simply asked people to text me to relax, or breathe, or pray…whenever they thought of me randomly during the day. Becky D

Only the grace and mercy of God keeps me going when I want to quit. Ruth H

Without laughter where would we be?  In the end it’s the only thing that helps us hang on longer. Cathy C

Watching Master of None and laughing till it hurts!!! We are more than the fixer, the caregiver, the one who must make decisions. Enee A

My “calm” has always been music. Whether studying it, playing it, or merely listening and appreciating it, music transcends all boundaries. Chris A

I’m still working on that. Jen K

Taking time to look through pictures of past memories. Remembering wonderful times with friends and family. This can renew your soul. Denise H

“I can do all things through Him who strengthens me.” Liz L

Scheduling 15 minutes of “me” time. Catherine B

I cry, I call my friends who lift my spirits up, I hold & kiss my cat, I sit on my deck admiring the beautiful view, I read late at night, I make a dessert…… it’s little things that add up that gets me through. Eve T

The peace is found knowing that what you are doing is the ultimate labor of love. When it is over, you will miss so much of what you did so lovingly. Elizabeth M

Prayer. Jac D

“Recognize the Lord’s presence in the difficult times, and give Him the glory. See how even the things we think of as setbacks are all part of His perfect plan for our lives. Susan C

Sometimes all I can do is simply breathe and rely on the only One who can see me through that very moment. Jana S

My sweet golden and chocolate help me work through it. Each of us has to find our own path to acceptance of hard choices. Debra R

I no longer think of myself as a caregiver, which implies duty, but rather as performing the work that He has given me for today. Tom M

My favorite bible verse “I can do all things, through Christ who strengthens me.” Helen H

The motto we used through 5 brain surgeries and subsequently 6 months in the hospital: TODAY IS NOT FOREVER. TODAY IS JUST TODAY. Lori R

I pray, then get busy with what God would have me do for that day. Roxanne M

I can stand anything for a little while!! Good times do not last forever and neither do bad ones!! Sharon D

I love him more than enough and I can love him through this. Judith R

On-line support, friends, and prayers. Michele L

A walk or some outdoor activity. Nanette H

The beautiful tile painting of a dove was found at a friend’s home. 

 

A Caregiver’s Caregiver

Colleen Kavanaugh headshot

If you feel like you’re wading through quicksand sometimes, here’s Part Two of my interview with Colleen Kavanaugh of The Longest Dance. Relatable and compassionate, her experience in helping other caregivers find solid ground offers a sense of hope that you can see this caregiving journey through and come out stronger on the other side. It’s reassuring to know that’s possible. 

What is your advice to someone who is new to this journey? Get help. I like to use the example of hospitals and other care facilities to illustrate that it takes a village. These communities have a staff of hundreds to handle the care of each patient or resident. One person isn’t assigned to care for another. One person handles a component of care. And, that person doesn’t work 24/7. In whatever way you are able to supplement care or hire out for certain chores and responsibilities, do it. Have experts you can call on for certain issues like legal and financial matters. Think of your caregiving role as a manager building a team of support for you and your caree. Try to remember that you don’t know what you don’t know. But know that you know enough to know you need help.

It’s easy to lose our other selves when we’re caregiving.  Share something about you that is unrelated to the caregiving role. Being at the beach, any beach, is my happy place. And I love eating fabulous food. In fact, I am doing this interview with you while waiting in line at Franklin Barbeque in Austin, Texas. While I wouldn’t have flown to another state for barbecue as a caregiver, I did allow myself to rent a beach town’s teeny tiniest bargain rate cottage 8 blocks from the ocean that was just a 20-minute further drive to my Dad, who was at that time in a nursing home during what would be his last summer. I was able to be with him daily, but return to my happy place and give my son a bit of a vacation. I share this story to show that there are ways to creatively sneak in your own joy during what can be the most difficult time of your life. Maybe it’s a class that meets at a time when you are able to get care coverage, or a two-night getaway when a sibling comes to town and can stay with your parent or loved one. Even just a quick manicure before you head into the grocery store can make a difference.

Artists aren’t the only ones with creative gifts. For some, it’s painting or music. For others, it’s making people feel comfortable or cared for. What’s your gift? Maybe a bit like you, Judith, as a “hyper-responsible oldest child,” I have a gift for being hyper-organized. I love connecting with others, and when that connection comes with the opportunity to help them organize their desk, sock drawer or now – medical records, I am in heaven. I am invincible with a well-crafted list and was known at my parent’s doctor’s offices as, “That girl with the clipboard.” Inefficiency drives me wild, and as you can imagine, the unpredictability of caregiving tested my patience like nothing else. Organization was truly my best friend. Don’t underestimate the power of your natural gifts to assist you during your time as a family caregiver! Reflecting back on my experience, if I had to do it all over again, I would tell myself each day to:

 

  • Acknowledge your role
  • Prepare as best as you are able
  • Look for the light within the dark – it is there
  • Subversively sneak in joy whenever and wherever you are able
  • Lead your team to support you and the person for whom you care
  • Use your natural talents to help in your own uniquely empowering way

And know, above all else, that you’ve got what it takes.
What doesn’t kill us makes us stronger. I am living proof, and you will be too!

 

 

What’s In A Name?

Colleen Kavanaugh super-denier

For my guest, Colleen Kavanaugh, being a working mother, a daughter, and a partner are a few of the identities she’s comfortable with. But, when taking on the heavy responsibilities of advocating for a mom with Stage-4 breast cancer and a dad with Alzheimer’s and Parkinson’s, she wasn’t quite ready to add “caregiver” to the list.  The result was a situation where she ended up doing everything on her own, with no safety net of support. Sound familiar? Founder of The Longest Dance , both a certified caregiving consultant and a certified dementia communication specialist, Colleen is also a daughter who has walked a mile in many of our shoes. I’m so pleased to share her story and the powerful lessons she’s learned in this first of a two-part interview. 

What were the circumstances in which you found yourself in the role of caregiver? This question always puts a line from The Talking Heads song, Once In A Lifetime into my head, “And you may ask yourself, well, how did I get here?” During my decade of caregiving I asked myself that question, in David Byrne singsong cadence, over and over again. Caregiving was certainly never an activity on my list of things to do, that’s for certain. I look at my tenure as a family caregiver as what insurance policies call an “Act of God”, like a storm that you hear happening to other towns but never yours. My parents were diagnosed with diseases and needed care. Period. No choice. No picking what is behind door #2 after door #1 had been opened. To reductively sum up my caregiving storm in one run-on sentence…. I was a 34-year old newly divorced parent of a toddler, working full time when I began caring for my mom who was diagnosed (and lived a prognosis defying 3 years) with stage-4 breast cancer and within 9 months of her dying, I began caring for my widowed dad who was diagnosed with Alzheimer’s and Parkinson’s diseases, all the while attempting to live my own life (which now included a new partner and his two children) while dismantling my parent’s very complicated lives.In the midst of it, not unlike being in the middle of a catastrophic storm, I was unable to control the forecast (the diagnosis), but only able to control how I dealt with storm prep and clean up.

What was the most difficult part of caregiving? Was there a positive side to it? If so, please describe. The most difficult part of caregiving, for me, was acknowledging that I was a caregiver. This denial was detrimental to my getting the support I should have gotten in order to manage the stress that I wore around my neck like an invisible barnacle. Even during the times when a parent’s care consumed my life, I was still a mother, partner, daughter, employee, volunteer and active daydreamer. I think part of denying my role was that I ultimately did not want to be doing what I was doing. And what I was ultimately doing was watching my parents die from terminal, degenerative illnesses. Who wants “Death Sherpa” on their business card? I certainly didn’t. That said, the flip side of my business card would have read, “Life Igniter” because, amid the intensity of the worries, endless to-do’s, and perpetual grieving, I truly learned how to live. I met death close up and it whispered to me that I needed to make the most of the unknown time I have left. The intensity of emotions and situations that exist within caregiving are a nonstop roller coaster ride of grueling climbs to a pinnacle that once reached, hurl you off the top into a descent that you can not prevent, control, or escape. It’s nausea inducing at first but slowly, over time, it becomes your new normal and you are no longer getting motion sick at each free fall (or in a caregiver’s case, each health decline, hospital visit, 911 call, or middle of the night crisis). When my caregiving ride was finally over, I knew I could not just walk away from all that I had learned. If an ounce of my experience could be of value to another family caregiver, I needed to share it and give others the practical support and encouragement I so often wished I had, but didn’t know I needed.

 

Please come back for Part 2 of our interview on Friday, April 28th. In the meantime, be sure to check out Colleen’s website to learn more about the services she offers to caregivers, and sign up to receive some valuable (and free) organizational tools for making life a bit easier.