The zen of caregiving

November is National Family Caregivers Month …

… and before this month ends, I’d like to share a prize-winning essay about my caregiving experience with my father. Many of you have read this. For those who haven’t, I hope my words offer hope and inspiration.

Most important, during this month of honoring those who care for loved ones and this season of thanksgiving, I bow to all caregivers in gratitude — whoever you are, wherever you are. We are indeed noble.

*****

Antonio_Zuninga_400pDad is trying to tell me a story. Before the stroke, he was an amazing storyteller. Not just to family, but to thousands of people around the world. Stories of faith, hope and love. Inspirational stories that healed others. Miracles happened. Many.

Now, he is in need of healing. He needs a miracle. I see none. For him, for myself.

Dad can speak, but his words are often misplaced, his cognition scattered, like puzzle pieces trying to connect and take shape. He gropes to find meaning in some dark, recessed cavern of his brain.

“I am holding the door open,” he begins, as we sit on the deck. He pauses, struggling to finish. “And there was a miracle.”

Dad repeats these words in an endless loop for almost a half hour as I watch a robin flit in and out of the leafy trellis where it has built a nest. I sit with dad most days. He can’t fall. Nor can he do many things he once did, he, who was his high school’s valedictorian, he, who once worked in broadcasting and met movie stars and celebrities.

I interrupt. “What miracle, dad?”

He smiles, “Wait. I’m getting to that.” And the loop begins again.

Inside I am crying. I have been weeping since the stroke on Good Friday. It was not good. It feels like a cruel joke that God would nail dad to the cross of non-communication on that particular day, dad, who valued speech above all else.

How could God do this to dad who gave countless lectures in churches, schools, veterans’ hospitals and more, not only in the United States, but around the world? Dad, who told others, “You were born for greatness, why settle for less?” Dad, who told others about God’s healing love? Dad, who helped so many people.

I am angry. At God. At life. I miss my father.

Dad is quiet now, looking off into the blue, cloudless sky. His gaze goes toward the backyard and the flowering bushes. Where is he? The tears and fears well up within me again and I wrestle to find acceptance and peace.

robin-building-nest-carol_matthai-389639-nwpc-225x300I disrupt dad’s reverie and tell him about the robin. He cranes his neck to look and smiles. The robin is nesting, waiting for birth. I am, too. I feel only emptiness.

My cell phone rings. More doctors. More appointments. I am always on the phone these days with someone about dad. I am thrust into learning about INR levels and navigating the maze of the medical system. I have lost my life. Is this healthy? I know it’s not and not only do I battle with acceptance, but also balance.

I catch dad staring at me and he breaks his silence.

“I have an answer to your solution,” he says.

I smile at his choice of words. Despite his stroke, he recognizes “something” is not right with me these days. The irony is, dad doesn’t realize he is the reason I am so stressed. The part of his brain that flooded with blood doesn’t understand my exhaustion. His care is more than I imagined. And I worry about my mother, who provides the majority of care. And my brother. I am the relief. It never feels enough.

letting go open hand“You have to hand everything over to Raymond,” he says.

It takes me a second to understand. But I do. Before the stroke, dad would tell me to place everything in the hands of God. To let go. To trust. He used to tell me that God was in charge and I needed to let God take control.

“Raymond will help you,” he says, “and take care of things.”

The truth is, I have been talking to Raymond forever. Praying to find wisdom, direction. Asking for graces and strength. Feeling little in turn.

Dad says he wants to go inside. I help him out of the chair into his walker and he shuffles through the back door. I knew some day all this would happen. I just didn’t think it would be so soon, or so hard.

He is in his recliner now, watching a TV channel filled with old programs. I feel trapped in the black-and-white world of dad’s stroke and the selfish part of me wants to run as far away and as fast as I can. But I can’t. I love my father. But there they are, the confused stew of emotions – duty, guilt, responsibility and yes, love – that trap me, beckon me, invite me. Perhaps save me.

Friends tell me I need to take care of myself. But how? I pick up a newspaper and am led to an article about a mindfulness meditation course. I have always been interested, but location and cost were always prohibitive. But here, I read, the program is being held down the street and in the evenings, by the Jefferson-Myrna Brind Center of Integrative Medicine in Philadelphia.

I call and learn scholarships are available. I apply and wait to learn if I’m accepted. I hand it over to Raymond. If I’m meant to attend, God will arrange it. Raymond does come through for me and I begin an 8-week course on mindfulness-based stress reduction (MBSR) where I learn to focus on my breathing, to be in the present moment. I learn to sit. To stay with whatever is happening, without judging it.

BCALM-mindfulness-meditation-meditating-hands-sliderIt is the miracle I needed and I learn to navigate the stresses of caregiving with greater ease and presence. In the past, I wanted to prepare for illness or death of a loved one. But now I know that it’s not possible. It was the control part of me that wanted to be ready, to have things in place in the hope that I might handle it better. But all that is nonsense. We can only experience the sorrow when it comes, in the moment.

And although dad will not have a cure, his miracle, in some ironic way, is his stroke. He always loved helping others. Now, he has been helping me. All this time, he has been teaching me the zen of caregiving and how the two are so similar – sitting, being in the moment, patience, letting go, accepting, and staying with “what is.” Dad’s stroke has been his one last great gift to me.

The next day, we are on the deck again. Dad begins his story again, but never finishes. He never does these days. But I am more at peace with this.

“I love you,” he says, surprising me. His words pierce my heart.

“I love you, too,” I say, walking over and leaning down to hug him.

letting_go_by_bandico-d5s1eyh“Remember to trust in Raymond,” he reminds me.

I hug him again, the robin snagging the corner of my vision. She is still nesting, still waiting. She can do nothing but be in the moment until new life is transformed and shaped, until some hope flits off into the sky with birthed wings.

I sit again. I stay with the moment. With dad. And with Raymond.

(Earlier this year, among more than a thousand entries, this essay “The Zen of Caregiving” tied for second place in the annual caregiving story contest sponsored by the John A. Hartford Foundation. The contest rules specified we write about what helps us in our caregiving journey. http://www.jhartfound.org/)

 

 

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6 thoughts on “The zen of caregiving

  1. Beautiful piece. My husband is on the journey of Alzheimer’s, combined with Parkinson’s, and–as you know–I’m along for the ride. It IS important to take care of the caregiver, but that’s hard. I didn’t know caregivers had a month! Only a few hours left.

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    • Kaye, I applaud and honor all caregivers for their courage. Yes, so important to take care of the caregiver, but as you and I — and all caregivers — know, it’s difficult to carve out time for ourselves. So I especially thank you for taking time to read this blog post and comment.

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  2. God bless you always. Loved your story, relived a few moments when we were my mom’s caregivers (pancreatic cancer) The selfish in me wants her back so bad but knowing she is not suffering as she was and she is with God comforts me. Thank you for sharing your story, it really spoke to me.

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    • Donna, Thank you SO MUCH for taking time to find this blog post and to read it. I am humbled and thankful. The caregiving journey is never easy, but always filled with love. I’m so happy that any words I wrote spoke to you or touched you in some way. Many thanks again and blessings.

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