I've been a caregiver for the guy in the photo above, the love of my life, sculptor Richard Cabe, since he began seeing bird hallucinations at the end of August, 2008. I didn't think of myself as a caregiver then. He spent a week in the hospital that September after the birds came and went, and it was a shock to see my strong and rudely healthy husband sitting cross-legged on the bed in a hospital gown, day after day. We both figured whatever was wrong in his brain was an aberration, and he'd recover quickly.
I still didn't think of myself as a caregiver even when I learned how to administer his thrice-daily infusions of IV antiviral drugs, or after his brain surgery that October to remove the first brain tumor, or after his subsequent diagnosis with brain cancer. Not even when we moved to a suburb of Denver for six weeks that winter for his radiation. Or during the six months of his intensive chemotherapy late that winter and spring. Not during brain surgery number two, when his neurosurgery team removed much of his right temporal lobe. Not even when the pathology report came back with the worst news, "grade IV, glioblastoma."
Somehow I avoided thinking of myself as a caregiver through two succeeding brain surgeries, and the trips back and forth to the hospital for various crises…
It really only hit me that I had become a caregiver when brain swelling degraded his vision so he could no longer drive, or bake his widely admired whole wheat sourdough boule (loaves as sculptural as anything he ever created with stone and steel and wood). Or pay the bills, or, on some days, button his shirts. (He can still split firewood though, hence the photo at the beginning of the post!)
That unanticipated, unrealized slide into caregiving is why renowned literary journalist Gail Sheehy wrote Passages in Caregiving: Turning Chaos into Confidence. The role takes over our lives insidiously, usually with no warning, much less time to think. Not only do we not consciously sign up, we often don't even realize we've become caregivers until it's almost too late to figure out how to not hurt ourselves–or others–in the doing.
If you're female, you'll need this book someday: "Today's average caregiver," Sheehy writes, "is a 48-year-old woman who holds down a paid job (more than half work full-time) and spends twenty hours a week providing for an adult who used to be independent… And this role lasts an average of five years."
Sheehy walks readers through the journey in chapters shaped by walking a labyrinth from the start through the many turns, arriving at the center and finally, back out again. Each chapter includes some of Sheehy's own journey in caring for her husband, the legendary editor Clay Felker, through 17 years with cancer, plus facts and stories from other caregivers, research related to caregiving, and an extensive sidebar detailing resources for caregivers at each step along the way.
Caregiving can be a grueling journey. But as Sheehy writes in this illuminating, informative and inspiring book, if we allow ourselves to be thoughtful and prepared, to ask for help and call on the resources available, caregiving can rise above the pain and terror and panic and exhaustion into an exercise in "practical spirituality," a walk that can transform our lives, families, loves, and selves.
(Read my full review of Passages in Caregiving at Story Circle Book Reviews, the largest review site for books by and for women. Thanks to Denese for sending me the book!)
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As for my beloved: We're home for another week before traveling to Denver again for his first infusion of Avastin, which we hope will starve his growing tumor by cutting off its vascular network. His energy and some of his brain functions–especially vision–have definitely been impaired by the tumor activity in his right brain.
But we still find grace notes in every day, like the wonderfully sky-blue blizzard of mountain bluebirds that fell on our yard yesterday after the weekend's spring snow.
And he is still determined to greet each day with "an attitude of celebration and gratitude." That's inspiring.
a blizzard of bluebirds, grace notes indeed. holding you in my thoughts.
inspiring indeed…love Sheehy’s book she is a great teacher as are the two of you
sending healing energy and much love dear ones and thanks for this insight and review
Holding you both close as you travel once again over the mountain
Chery
Velma, Yes, they were grace notes, and they even almost held still enough for me to shoot a decent photo. I feel quite cradled by your thoughts. Thank you!
Doc Chery, Sheehy IS amazing, and I really felt closer to her in this book than any of her others, I think because the memoir parts were so strong and courageous. Bless you! Susan
The passage from hallucinatory birds to the lovely mountain bluebirds of spring has been inspiring to others, painful for both of you and filled with lessons for all of us.
Arletta
Arletta, I hadn’t seen it just that way–as a passage from hallucinatory birds to the mountain bluebirds of spring–thank you for the gift of your perspective. It’s a hard journey, there’s no doubt about that, but it’s also a rich one for those who can remain open to the insight it brings…
That you are writing throughout this journey is truly inspiring, I send you tenderest of thoughts to your valiant heart. Practical spirituality sounds so simple but is so challenging to live. Richard’s smile is such a grace note… take care my friend. I know you two are holding hands and savoring each moment together. Celebrating blue birds indeed!
Thanks so much, yet again, for sharing your discoveries. Sheehy’s book sounds like it’s essential reading for most of us. It’s true that caretaking happens while we’re not looking, and it becomes as extensive as you describe before it is acknowledged.
The photo of Richard reminds me of one of the mainstays of life: chop wood, carry water. While noticing the bluebirds.
Jude, Writing about my life is one of my ways of “composting” my experience, turning it into something useful. Chronicling this journey also helps keep my sanity (such as it is!). Practical spirituality is challenging to live, but then living well and being aware and appreciative of the gifts of life takes work too. Thanks for appreciating that!
Deb, I thought of the chop wood, carry water allusion too, and I like your take on it, “while noticing the bluebirds”–yes! Sheehy’s book is definitely worth the read as it gives a framework for understanding and learning from the journey. That is a big help…
Yes, I own the book. Not cheerful reading but informative about many important things. I am going back to Dorothy Sayers for cheer. Thinking of you both and Molly too every start of the day and at the end as well. Yes, it’s an awful lot of work and especially when you are so doggone tired. But trusting that Medical Deity, on you go.
Anna, No it’s not cheerful reading, but I found it tremendously helpful in putting my experience in context. Dorothy Sayers sounds like much more fun reading, though she can get dark sometimes too. We’ve been doing visualizations about having Richard’s body guide the Avastin to where it needs to go in his brain, and have his immune system cooperate with the Avastin and help keep it from stressing his system in any way… We’re imagining his body’s natural strength and good health cooperating with this tool of Western medicine in fruitful ways. And as you say, trusting the Medical Deity, on we go…
I am the Denese that sent her the book. Although I am not a caregiver of a spouse I am a caregiver to a mother, and appreciated the brutal honesty Gail shares with us about her feelings and reactions to the stress and burden, and, yes, honor, of caregiving for someone she loves. The best thing about the book is that I can tell she has no regrets, nor should she. *That* is freeing. Although the parts if the book that reference resources for caregivers can be stultifying, the biography parts if the book are inspiring. I recommend it.
With you, as always, in my thoughts, Susan. Hugs to you both as you start yet another new path.
Denese, Thank you again for the book. I agree that the memoir parts are the strongest, and that it’s freeing to realize that despite Sheehy’s honesty about what she struggled with, she has no regrets. I think it’s very empowering to realize that in caregiving, as in the rest of our lives, we do the best we can at every moment. Sometimes that’s a best we can easily celebrate, other times, not so much. But in every case, we simply acknowledge what we’ve learned and go on. Blessings!
Theresa, You are just the best. Thanks for being with us!
So, with the mentioning of this path coming something like full-circle, regarding birds, I’m recalling Anne Lamott’s dad telling her brother, stuck in not knowing how to do a school report on birds, “Just do it, bird by bird.”
And so it goes, the doing of our daily living: bird by bird.
Susan,
So many wise comments…I can only wish you more restful moments of blue-bird beauty to refuel you on this long, hard journey. And I’m glad you’ve found somewhat of a roadmap in Sheehy’s book.
Hugs, blessings and warm healing energy your way as always.
Eduardo, What a wise reminder of the best way to take life! Thank you…
Susan G-T, Thank you for understanding, and for the love you send. What a gift it is!