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The Book is Available Now!

10 Dec

I am excited to announce that you can now order Seasons of Letting Go on Amazon.com!

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From the time I began the blog that spawned this book, I had all of my large network of friends in mind as my audience. If you know me at all, whether through the travel industry, as a Facebook connection or as a friend, there is something for you in these 12 essays and 92 illustrated pages.

If you have experienced a loss, this book is especially for you. Yet, although it came to be through the event of a death, this book is about life and living it to the fullest. Happy Holidays!

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I’ve written a book!

26 Nov

“When are you going to write a book?” has been an oft-asked question throughout my life. An English major who always focused on language, won awards for papers in college and worked consistently in communications, ironically I never really gave the question much thought. My flip answers ranged from “probably never” to “when the time is right.” But privately I considered the prospect highly unlikely. I believed I would only author a book if it somehow occurred “organically” due to some (as yet unforeseen) passion for a topic that would naturally and effortlessly lead to composing an entire epistle.

S.K. Schuetz, 2014

S.K. Schuetz, 2014

A little over a year ago, I was visiting a friend who lost her brother not long after I lost my mom. We were reflecting on the various ways one brings creativity to bear on processing grief. Sarah showed me a series of photographs she had taken over the course of an entire year, exploring the ups and downs of journeying through life while learning to accept loss. I shared that when I returned to Kentucky in 2010 to live with my mother, I started a blog so that I would not lose touch with my writing. What began as simply being around to lend a hand morphed into the role of caregiver—and the blog became an outlet for stress and, eventually, a way to come to terms with the death of a loved one.

While speaking with my friend and seeing her wonderful work, a realization rose up majestically from my subconscious like a giant sea turtle I once encountered while kayaking that had been lying invisible, yet grand, just below the ocean’s surface. I knew I had written my best essays as blog entries during the year of my mother’s death. Why not publish them as a book to honor her life and help others dealing with loss?

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S.K. Schuetz, 2014

I asked Sarah if she would read the four essays I had in mind and, over the next several weeks, we communicated about the ideas. Sarah noticed that the dates I wrote the essays created a seasonal pattern: June 2, 2012; August 9, 2012; October 4, 2012; January 9, 2013—Spring, Summer, Fall and Winter! This pattern provided me with my title: Seasons of Letting Go. Like Sarah’s yearlong photography project (some images shown here), I had a year of essays.

Upon further reflection, I found on my blog site eight other essays that would fit in well following the first four about caregiving and grief. So the concept became a collection of 12 essays, presented in three parts, each containing four chapters. I had already written a book without even knowing it!

That is when the fun began. I set the goal of “doing” the book during the entire year of 2016. Though my 12 essays were already written, I had to edit them—but that was really no big deal. The intention now was to make this a creative experience by involving friends and colleagues who would bring their artistic abilities to the project during an entire year—and I would project manage. I told everyone involved: “There are no hard-and-fast deadlines or production schedules: Just have fun!”

And, you know what? We pulled it off! The book is now at the printer and, when it is available, you will be the first to know. I’ll write another blog about the creative souls who worked on the project. So please, stay tuned, and if you don’t already follow this blog, please sign up in the upper right hand corner so you will get updates about Seasons of Letting Go: Everything I know about truly living I learned by helping someone die.

Post Script added Dec. 10: The book is now available on Amazon.com.

frontcover

Graphic design and layout by Trish Griffin Noe | Cover image by Joye Ardyn Durham

S.K. Schuetz, 2014

S.K. Schuetz, 2014

S.K. Schuetz, 2014

S.K. Schuetz, 2014

Sarah and me.

Sarah and me.

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50, here I come: 11 lessons from my 40s

24 Feb

Tomorrow I turn 50. This afternoon I got a birthday message from Laura, a younger friend I met in Switzerland around the time I turned 40. Over the years I’ve known her, Laura has had many ups and downs and now has created a successful culinary business for herself on a Swiss farm. We have only been together twice, but shared a deep connection and enjoyed comparing notes about how to deal with life’s challenges. After an initial greeting, her opening words were these:

390864_352805314794540_1782318286_n“I often think about you and imagine you are happy. 50 now… I remember last time when you were 40. Loads of questions and thoughts about life: How is it today? How did these past 10 years help you find peace and answers?”

Wow! These immense, broad questions came to me at just the right moment, as I’d already been formulating the vague idea for a blog to reflect on the past decade in some comprehensive way.

My 40s were incredible, and I migrated through many changes, the culmination of which was the death of my mom, and the realization that she was the true love of my life – even as I was flitting about on several continents during my stint in the travel industry. Finally going home to Kentucky to help her die was the best decision I ever made and although I didn’t do it perfectly, I was strong and I helped her live her last days the way she wanted to.

IMG_0909In 2013, I sold a house, moved, rented for six months, got a part-time job, and then bought a house and renovated it… all of which have led me to my current situation, a new resident of Asheville, NC, still recovering from loss, but growing stronger as I connect with my new community, and find my niche socially and professionally.

What follows is a collection of salient lessons from the past decade, each supported by a favorite quote.

LESSON 1: LOVE YOURSELF

“The most important relationship you have in life is the relationship you have with yourself.” ~Diane von Furstenberg

IMG_2646Last year’s birthday came at a time when I was still grieving the loss of my mom so heavily that I expected others in my life to somehow compensate for the internal void of having no parent left to celebrate my life in the way that only parents can. I learned then the final lesson of independence: that I really needed to only have expectations of my own self, and to face the fact that I was truly alone – and be OK with that. And that helped me to focus on my relationship with myself more in the past year than I ever had previously.

LESSON 2: LOVE OTHERS

“The beginning of love is to let those we love be perfectly themselves, and not to twist them to fit our own image. Otherwise we love only the reflection of ourselves we find in them.” ~Thomas Merton

This is only common sense, but with those expectations mentioned in the first lesson always creeping into relationships, keeping the right attitude toward love of any kind can be a challenge. It’s good to be reminded day after day that what we love about others is what makes them different from us and it our not our job to shape them or mold them into something we think is best for them – or for us. I think I finally learned this lesson during my 40s and am ready to practice it well in the next decade.

My last Friday morning

LESSON 3: ACCEPT WHAT IS

“Stop resisting. So much of our anguish is created when we are in resistance. So much relief, release and change are possible when we accept, simply accept.” ~Melody Beatty

During my 40s, I think I adopted a more natural acceptance of reality, learning more about not pushing for things but allowing them to come to me organically. A huge lesson of grief is the acceptance that you cannot change what has happened, what is. Learning to relax into the “luxury of grief” and allow it to consume you for a period of time is actually healthy, and takes you on a tour through all of your emotions so that none is left unvisited – and then you are ready to move on, to move forward.

LESSON 4: BE HERE NOW

IMG_6134“If you no longer want to create pain for yourself and others… then don’t create any more time… realize deeply that the present moment is all you ever have. Make the Now the primary focus of your life.” ~Eckhart Tolle

I can’t stress enough how much reading Eckhart Tolle helped to shape my outlook during my 40s. It was like a homecoming finding his writing, because so much of what he says, I feel I’ve always operated on, and just thought that no one else was like me. These were lessons hard-learned and I made plenty of mistakes, but meditation and focusing on the Now helped me prepare to help my mom die, and live through it and on beyond it with a new enthusiasm for life.

LESSON 5: BE STILL

“It is said that all you are seeking is also seeking you, that if you lie still, sit still, it will find you. It has been waiting for you for a long time. Once it is here, don’t move away. Rest. See what happens next.” ~Clarissa Pinkola Estes

As a natural progression of learning not to push so hard for what you want and to accept what is, there comes a realization that you are moving toward things as they are also moving toward you – that its not up to you to facilitate getting there yourself; the movement is one greater than you can orchestrate. This doesn’t mean do nothing; it means be open, listen and conserve energy in preparation for what is coming rather than spending it all. A great convergence is occurring and things are being worked out that you cannot imagine. So be still.

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LESSON 6: BE IN NATURE

“I have passed the Rubicon of staying out. I have said to myself, that way is not homeward; I will wander further from what I have called my home – to the home which is forever inviting me. In such an hour the freedom of the woods is offered me, and the birds sing my dispensation. In dreams the links of life are united; we forget that our friends are dead; we know them as of old.” ~Henry David Thoreau

Time in nature I always find to be my greatest teacher. Moving to Asheville was largely about connecting to natural areas and a sustainable lifestyle that values the environment. From my base in my new home here in the mountains, my intentions are set to contribute personally and professionally to the health of our natural resources, our true home. Through moving in this realm I know I will be comforted and cared for in many ways yet unforeseeable.

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LESSON 7: BE ALONE

“To make the right choices in life, you have to get in touch with your soul. To do this, you need to experience solitude, which most people are afraid of, because in the silence you hear the truth and know the solutions.” ~Deepak Chopra

I remember at a younger age a feeling that for any experience to be truly meaningful, I had to share it with someone. As I’ve aged, I’ve become more and more comfortable with having amazing solo experiences, and enjoying them just for me, not even telling anyone about them. But this took a long time for me. As an only child, it was a hard lesson; I wanted to always be with others. This past year I’ve been alone more than ever before, and now I even have my own house. I confess I’m happier when others are visiting, but my alone time does provide many answers and insights. I feel I have more balance in this respect now than ever before.

LESSON 8: GROW

“No problem can be solved from the same level of consciousness that created it.” ~Albert Einstein

As we continue to evolve into higher consciousness and greater awareness, we find ourselves able to tackle challenges that previously seemed beyond our grasp. Lessons learned become the foundation for new ways of taking care of our self, interacting with others and moving through our sphere of existence. Suddenly some things that always seemed hard in the past are now parts of everyday life. This is growth.

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LESSON 9: EMBRACE SURPRISES

“So hold your head high
and don’t be afraid
to march in the front
of your own parade
If you’re still my small babe
or you’re all the way grown
my promise to you
is you’re never alone

You are my angel, my darling, my star
And my love will find you, wherever you are.”

~Nancy Tillman from “Wherever You Are, My Love Will Find You”

Whenever I have extra time at my job at The Compleat Naturalist, I take a moment to read some of our wonderful children’s books. Many of them remind me of the love of my parents, and none more so than “Wherever You Are, My Love Will Find You.”

I had thought that once I found romantic love again, I would be so sad that my new partner could not meet my parents or know them that it would make the relationship somehow impossible. But something happened that I could never have imagined.

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I met someone who loves me in so much the same way that my parents did, that it is as if this person was sent to continue that deep connection – and that through him, their love has found me. So what I thought would be a desire for them to have met each other is transformed into a serendipitous feeling that they are the same energy, and know one another through understanding and loving me. This is a form of being surprised by joy that I could never have anticipated. I feel that all the other lessons somehow prepared me to be open for this one!

Inner strength

LESSON 10: KEEP MOVING FORWARD

“Inner strength comes only to those who move forward in the face of adversity.” ~ Phil Stutz & Barry Michels in “The Tools”

The Andean Torrent Duck spends its entire life swimming upstream against a strong current. You can see some cool video of it in the PBS nature movie “An Original Duckumentary.” This species, now in decline due to pollution, forest destruction and hydroelectric damming, really inspires me! No matter what your passion or intuition, it’s all about picking a path and moving forward on it… whether you’ve got the perfect plan or not. Sometimes going out on a limb will create adverse situations, but learning to persevere through the storms will make us stronger – and help us appreciate the calmer days.

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LESSON 11: DON’T FEAR MISTAKES

“I hope that in this year to come, you make mistakes. Because if you are making mistakes, then you are making new things, trying new things, learning, living, pushing yourself, changing yourself, changing your world. You’re doing things you’ve never done before, and more importantly, you’re Doing Something. So that’s my wish for you, and all of us, and my wish for myself. Make New Mistakes. Make glorious, amazing mistakes. Make mistakes nobody’s ever made before. Don’t freeze, don’t stop, don’t worry that it isn’t good enough, or it isn’t perfect, whatever it is: art, or love, or work or family or life. Whatever it is you’re scared of doing, Do it. Make your mistakes, next year and forever.” ~Neil Gaiman

IMG_0804_2My closest girlfriend in my new town I met through my time in Costa Rica with Bruce Smith of Seascape Kayak Tours. Nina is a constant inspiration and has given me a great deal of emotional support in my new life here. She posted this quote before the dawn of 2014, but it is apt for the eve of a new decade for me as well. It sums up much of the feeling behind this blog, in that I intend it to be helpful to others, and in no way to say that I have not made tons of mistakes along the way. I have made them… and I encourage you to make them too. And then forgive yourself, and move forward.

50, here I come.

Photos by Joe Lamirand, John Beaudet, Frances Figart

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Changes are shifting outside the world*

9 Jan

As a student of English Literature, I learned that for a narrative work of any kind to be truly engaging, the main character has to undergo a change.

imagesIn the terminology of dramatic structure, going all the way back to Aristotle, there is a climax or turning point that marks a change – for better or the worse – in the protagonist’s affairs. Consider the Shakespeare plays you recall: In the comedies, like A Midsummer Night’s Dream, things had gone badly for the character up to this point, and now the tide will turn and things will get better. In the tragedies, like Hamlet or Othello, the opposite occurs, and events shift from good to bad at the climax.

Of course, by the time we learn about this literary device, we’ve already been exposed to it many times, from the earliest fairy tales and stories that were read to us as very young children on up through just about every form of entertainment that is a part of our particular age group’s contemporary culture. We can all name our favorites: I recall being enchanted by Alice in Wonderland, Treasure Island, Robinson Crusoe and Great Expectations.

images-3As adults, whether we love fiction, theater, opera or rock-n-roll, we are most inspired by those works of art in which a transformation occurs. I will find myself quite bored by films in which the main character never “gets it” and conversely reduced to tears by those in which the change the protagonist undergoes is portrayed in a startlingly realistic way. Some random examples of favorite films are The Razor’s Edge, The Darjeeling Limited, Sally Potter’s Yes, and most recently, Jack Goes Boating. Similarly the music which affects me most profoundly – penned by artists like Joni Mitchell, Bruce Cockburn, James McMurtry, Jeff Tweedy, Steve Earle and Vic Chesnutt, just to name a few – does so through its ability to portray characters realizing something transformational.

Joseph Campbell took the Greek notion of dramatic structure a step further to define the common plot element in all stories as the hero’s journey. In any narrative, things are going along routinely, and then the main character is faced with an upheaval of some kind in which all he thought was stable has now changed, requiring him to rise to the occasion and fight a dragon of some sort or another, usually representing a personal fear. It is through this battle that transformation occurs and the hero emerges a new, better, stronger person than before. Think Wizard of Oz, Star Wars, Harry Potter, The Hobbit, Castaway, Avatar, the list goes on and on.

62463I recently watched a film called Finding Joe that expounds Campbell’s hero’s journey concept. It does this through interviews with a dozen or so articulate speakers who have achieved greatness, some well known and others who worked quietly behind-the-scenes to accomplish successful projects. “Follow your bliss and the universe will open doors for you where there were only walls.” This quote, which might as well be Campbell’s tagline, is one of the main ideas behind this uplifting film, from which you’ll come away feeling like an esteemed squad of cheerleaders including Deepak Chopra, Mick Fleetwood and Laird Hamilton is rooting for you personally.

But to witness another person taking on the ultimate hero’s journey leaves us empty, mystified and lost – because when the final dragon is met and fought with, the essence of what the person was here in this realm of form actually seems to leave us, nevermore to return.

In his book A New Earth, Eckhart Tolle writes, “The weakening or dissolution of form, whether through old age, illness, disability, loss, or some kind of personal tragedy, carries great potential for spiritual awakening – the dis-identification of consciousness from form. Since there is very little spiritual truth in our contemporary culture, not many people recognize this as an opportunity, and so when it happens to them or someone close to them, they think there is something dreadfully wrong, something that should not be happening.”

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Trying to come to some terms with my mother’s death over the past five months has been like trying to wake up after being heavily sedated. One is so overwhelmed with the grieving process that it’s like being mired in physical, psychological and emotional quicksand. After many months of struggling just to get through each quagmire of a day, finally, strangely, you begin to process emotions and information like yourself again.

A few weeks ago, I was driving through the woods at sunset feeling as if I had been a victim of amnesia and was trying to remember something about who I had been before. It was like hearing snatches of a melody and parts of a lyric hovering just below the mind’s surface, almost reachable and yet, still distant.*

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After chasing my ethereal thoughts for roughly a 24-hour period, a revelation of sorts began to emerge from the clouds, like mist rising from a mountain ridge. It was slowly dawning on me that just because I can no longer see and hear and feel my mom doesn’t mean she is not still on her journey.

Separate wholly from any learned connection between death and religion, the simple truth becoming less and less dim was that, given our limits of understanding, there is no reason to believe the changes do not go on. Changes are very likely still shifting outside the world as we know it.

As Tolle explains, during illness and finally in death, “what is lost on the level of form is gained on the level of essence.”

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The night my mother died, I awoke from a deep sleep having heard some sound in our shared room. When I reached her, she was unconscious but still living. And then I experienced something I never could have anticipated. Her essence, what some would call her spirit, left her body and very rapidly spread out around me with a palpable aliveness. It is impossible to describe this because I didn’t see or hear it or even feel it. (I was actually quite devoid of emotion at the moment it occurred.) I simply experienced it. And when it was over, her body had become a shell, not unlike that of an insect. Her essence went on. It was tangibly not trapped in the shell, which had died.

From that point on, I knew that to honor my mother was no longer to look at or touch her body, for it was no longer her. And so I sat near the body for only a short time, and then left the room and did not watch when it was carried out of our house.

Mother had fought the ultimate dragon; she had faced her fear and gone through the consummate change. Or had she?

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The way we experience time in this realm of form brings a horrible finality to this type of separation from someone we love. But, we need not lose interest in the plot as we might do when watching a movie where no transformation seems to be occurring. Change can still be going on – and who are we to say that it couldn’t be? Maybe the essence that used to appear in the form of my mother finally found the doors where before there had been only walls. For all I know, Mom is now on some level of the hero’s journey that is beyond my comprehension.

My continued closeness to her essence gives me the impression that changes are indeed shifting outside this world and that she is still learning, growing and changing as she has always done.

Nature photography courtesy of Nathaniel J. Miller. Computer generated paintings by Kathleen Farago May.

*The title of this essay is an intentional misquote from the song No More I Love You’s in which the lyric actually reads, “Changes are shifting outside the words.” The Annie Lennox cover of the song written by Joseph Hughes and David Freeman provides the very personal aural backdrop against which this essay was conceived.

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Songs of a new order

4 Oct

My mother gave me many gifts, one of the most treasured being the sensibility to appreciate the artistic marriage of music and words. Those who were able to attend her funeral heard an array of classical, traditional and contemporary compositions that were chosen and put in order by her – not recently, but years before she passed. She included on her program (which she helped to design and approved just before her death) some special lyrics from a hymn she loved, Lead, Kindly Light.

I was not ever thus, nor prayed that Thou shouldst lead me on;
I loved to choose and see my path; but now, lead Thou me on;
I loved the garish day, and spite of fears,
Pride ruled my will; Remember not past years.

Music became a part of my grieving and my mourning even during the long night spent clearing and cleaning immediately after Mother’s body had been taken from our house. For several days I could only find solace in the offerings of Bruce Cockburn, a Canadian singer songwriter I’ve always loved for his ability to write about spiritual matters from a Christian foundation moderated by a cultural perspective that does not diminish others of the world’s religions. I chose to place some of his lyrics from the song The Rose Above the Sky on the back of Mother’s program:

Something jeweled slips away
Round the next bend with a splash
Laughing at the hands I hold out
Only air within their grasp
All you can do is praise the razor
For the fineness of the slash

Some weeks ago, I was able to get out the tiny tape recorder that I kept near the piano for the times when Mom could sit there and allow some of her favorite pieces to fly from her weakened fingers. I listened one whole afternoon to the scattered recordings I’d made, remembering the joy that overwhelmed me each time I heard her play once again when I had begun to doubt she would make it back to the bench. On some of those occasions, she would play My God and I, which was sung by a friend at her service according to her plan.

My God and I go in the field together;
We walk and talk as good friends should and do;
We clasp our hands, our voices ring with laughter;
My God and I walk through the meadow’s hue.

A few weeks (maybe even a few days) before Mother passed away, she had just finished playing the piano when she asked me a painful question: “Do you think there is any way that I can possibly get better?” As I was trying to formulate my response, I thought immediately of Cindy Bullens and her CD Somewhere Between Heaven and Earth.

I don’t remember how I learned of Bullens and the 1999 album of 10 songs she recorded as a tribute to her 11-year-old daughter who died of cancer – but the work has long been an inspiration. The genre is light progressive rock, influenced by the likes of Carol King, Joni Mitchell, Heart and the Indigo Girls. Lucinda Williams and Bonnie Raitt make small contributions to a couple of the songs. But it’s the introspective lyrics in combination with the poignant melodies that give this work its ability to help anyone who is mourning. Bullens unabashedly carries the listener through the various stages of grief, with tangible examples like a trip to Paris seeming dull in comparison to memories of her daughter and the impossible hope that a scientific discovery like finding water on the moon can somehow mean young Jessie will find her way back to earth.

With Bullens and her acute loss in mind, my answer to my mother took the form of another question: “What if there was an 11-year-old child here, whom we loved, and who had cancer – and we knew she was going to die? What if she asked us this question? How could we answer her?” I then told my mom that it was time for her to practice what she preached, and to talk to God, in her own way, so that she could prepare for where she was going. I told her, in effect, to let go of the things of this world, and to begin to look forward to the next.

And now it is me who is left here trying to let go – of her. It’s hard when your mom was cool, was someone you hung out with, loved the things you loved, understood human nature in all its flawed nuances and exercised her sharp language skills and dry sense of humor up until a few hours before she took her last breath. It’s hard when you’re a relentless perfectionist constantly plagued with feelings that you could have done more, should have done better as a caregiver. It’s hard living right where it all went down, the set and setting for our last two years together. And it’s hard when a relatively non-material girl has an accumulation of 81 years of sentimentally charged high-caliber material possessions to sort through, deciding what to keep, and doling out the rest as best she can to those who will appreciate them as much as Ruthe did.

But one of the lessons I have learned from my grief is that if I can do some good now for others around me, then Mother lives on… because in some way I become her as I move forward.

And move forward I have decided to do. I have the beautiful house we shared in Winchester, Kentucky up for sale, and whether it sells in two weeks or two years, I am soon headed to the mountains of Western North Carolina to seek work and a new beginning. When my father was working at Ridgecrest Baptist Conference Center outside of Asheville the summer he was courting my mom, he took her on several memorable hikes; she even made it up the strenuous trail to Catawba Falls, which is no small feat. They loved the mountain forests there – and so do I.

Another lesson I have learned from my grief is this: When someone dies, there is a shifting and a shuffling that happens in preparation for the “new order” left behind. To use a baseball analogy (and I did go to a Reds game last month in honor of Mom), when one player is out of the game, the lineup changes. Since losing Mom, I have gotten closer to some folks I’d never really known before, including some of her close friends and members of our extended family who’ve come forward to lend support. Even among my own close friends, the shifting and shuffling is apparent; new bonds are formed as everyone rallies to take a position that will not only offer me strength, but also allow for growth that somehow just wouldn’t have been possible before.

True, like the protagonist in Gillian Welch’s traditional-sounding song Orphan Girl, “I have no mother, no father, no sister, no brother” – but I feel more whole and connected each day, nonetheless. Some lyrics from Cindy Bullens express it best:

There’s a curious freedom rising up from the dark
Some kind of strength I’ve never had
Though I’d trade it in a second just to have you back
I gotta try to make some good out of the bad

So I laugh louder
Cry harder
I take less time to make up my mind and I
Think smarter
Go slower
I know what I want and what I don’t
And I’ll be better than I’ve ever been
Better than I’ve ever been

Find Cindy Bullens “Between Heaven and Earth” on Amazon

Listen to Orphan Girl by Gillian Welch

Listen to Bruce Cockburn’s The Rose Above the Sky

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Scrabble in the dark with Annie

2 Jun

Last September, I started a new job. I didn’t expect to get it; I didn’t even apply. It’s not 9-5; I’m on the clock for all three shifts, every day, 24/7. It’s hard, but it’s rewarding. And, thankfully, there are a lot of perks.

I’m caring for my mom, at home, by myself. She has congestive heart failure. Without going into medical details, what I am doing on the physical level is kind of like the first year with a newborn – meals every couple of hours, up several times during the night – except that in this case, what everyone is “looking forward to” is not growing up, but transitioning out of this life.

“So much of our anguish is created when we are in resistance. So much relief, release, and change are possible when we accept, simply accept.”
~ Melody Beattie

Every caregiving situation is different, with a myriad of complex nuances and ups and downs specific to the patient and the family; in our case, I am the only child, so all of the responsibility to meet my mom’s needs and communicate them to others rests with me. “The family caregiver is the backbone of our broken health-care system,” writes Gail Sheehy in her book “Passages in Caregiving.” We do it out of love, we do it because our parents did it for us, but make no mistake, it is work and it is a job.

Social acquaintances see me these days and say, “Wow, you look so tired. Don’t you have Hospice? And didn’t you hire someone to help you?” As if these make everything peachy keen.

Having Hospice is great; it allows me to keep Mom at home where she wants to be and make quick decisions about managing her care. A nurse visits once a week; someone can come if we have a crisis; most of Mom’s meds and other equipment like oxygen are provided. But Hospice does not physically help someone like me take care of an elderly person at home on a day-to-day basis. If I want help – with cleaning, with cooking, with everything! – that part is up to me to figure out.

Mom and I did hire a wonderful caregiving assistant a few months ago, and that does allow me to take some vital worry-free breaks. (Without the respite I have gotten thanks to Paula, I wouldn’t even be able to write this blog entry!) But even families who are well off are hard put to have people working round-the-clock in their homes; we have our caregiver between 12 and 24 hours a week, which is only a fraction of the time I’m on duty. So ultimately, I still have the three-shift job that has been compared to that of a combat soldier in terms of the amount of cortisol produced by the adrenal gland to cope with the stress of a typical day.

I do get to take naps whenever I can squeeze them in. They are usually cut much shorter than I would want – when I hear my mom stirring on the baby monitor – but they are a lifesaver. On Pauladays, I may get to take a walk before grocery shopping. About once a month, I try to get away for a weekend, which requires coordinating several sitters; and all such plans are subject to change if Mom is feeling especially bad. Sometimes by the time I get a break, I’m way too tired to enjoy a long hike or a concert; I just need rest.

HYDRANGEAS, GROSBEAKS AND BASEBALL

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is.” ~ Albert Einstein

Before taking on this role, I was an “adventurer.” I lived to travel and have new experiences in exotic natural settings. Now, I am learning to see the adventures, even the miracles, unfolding before me right where I am. Like the amazing hydrangeas in our garden this year. I have given away at least a dozen arrangements of them, and every time I cut one, three more grow back in its place. Or the amazing two-week visitation to our yard of a group of migrating Rose-breasted Grosbeaks earlier this spring. What a gift it was for my mother to be able to sit on our screened-in back porch and enjoy these special birds. These are glorious adventures for me!

In the few years leading up to this acute stage of Mom’s illness, I was always subjected when visiting her to the incessant Cincinnati Red’s baseball games blaring at me over her radio. I resisted learning about the game and tolerated the noise without paying much attention to Mom’s commentary about her favorite sport. I took her to a game once a few years back, and I admit it was slightly more interesting to see the action live. When Mom got really sick last fall, I decided she needed to be able to see all the Reds games this year on television. We bought a package of some 200 cable channels just to get the ONE: Fox Sports Ohio. And now, guess who’s watching and cheering on the team every night right along with Ruthe, even though she can’t stay up for a whole game these days. I like to think it’s no accident they are ranked first in their division this year.

A STEP BEYOND WORDS
Back about November, a friend turned me on to Words With Friends, an online version of Scrabble I can play on my iPhone with Facebook friends. This became a wonderful stress reliever, especially while sitting up with mom during difficulties in the night. I soon found myself playing lots of games with Annie, a friend from high school that I never got to know very well. We made a good match, enjoying some very close games. When we started chatting, I learned that she, too, was caregiving for her mother, who had the same disease as mine. Like me, Annie found the game a great diversion. We had lunch, caught up and shared our caregiver woes, some similar and some very different. Every night, when things would finally settle down at home, I’d look forward to making my plays in my four or so games with Annie, either in the dark of my mom’s room as I watched over her, or in my own bed just before falling asleep.

A few weeks ago, I was super busy with watering the gardens, friends visiting, getting out for a rare hike in the gorge… and in the back of my mind I kept thinking that I hadn’t seen Annie make a play for several days. When things calmed down, I checked her Facebook page and found that what I feared was true. Annie’s mom had died.

Immediately I began to cry really hard… for Annie, and for me, too. It was one of those rare times, during the hectic day-to-day business of this caregiving job, that I realized fully what is coming, and how completely unready for it I will always be.

I fled to the garden, unable to really see through the tears, and cut all my favorite hydrangeas for Annie; this was the most important step I could take at that moment. I called her later and heard some of her story, feeling new pain because I knew that many of the symptoms her mom had to endure, my mom has also. The next day, I left the flowers on her porch. She wrote and told me that the hardest time is waking up in the morning, and so she has the hydrangeas by her bed so she will see them first thing, and remember that life goes on. A few days later, when I checked my Scrabble games, there was Annie, constant as the northern star.

“Your entire life journey ultimately consists of the step you are taking at this moment. There is always only this one step, and so you give it your fullest attention. This doesn’t mean you don’t know where you are going; it just means this step is primary, the destination secondary. And what you encounter at your destination once you get there depends on the quality of this one step.”
~ Eckhart Tolle

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