Tag Archives: caregiving

Duetting: Memoir 68 Epilogue

Duetting: Memoir 68 Epilogue Robin Botie of Ithaca, New York, photoshops herself and her daughter who died wearing masks like they did back in the days of cancer and caregiving, and took precautions similar to those taken for the COVID pandemic.

On the tenth anniversary of Marika’s death, in the spring of 2021, I am once more about to re-enter a changed world. Gently, my dead daughter drags me from the table where I’ve been blogging and Photo-shopping for almost a decade. It awes me to consider Marika’s been dead for ten years. Dead but not completely gone, some remnant of her now coaxes me from the house and down the long rocky driveway to where it meets the highway.

At the beginning of 2020, I had wanted to be out with people more, to spend less time and energy writing. So, instead of having to come up with new material each week for my blog, I started sharing the manuscript I’d already written about our journey through the wilds of cancer. Over the course of the year I broke up the 200-page/21-chapter memoir into weekly blogs and Photo-shopped illustrations for each, “Just to keep in touch [with my readers] while I venture out to discover where life will lead me next,” I wrote in the first entry. Then, shortly after I began, the world broke out into the COVID-19 Pandemic. Life, as I knew it, ended once again. And I was stuck social-distancing at home, alone with Marika’s ghost, her dog Suki, my computer, and my manuscript. Reflecting on this difficult past year, I believe that what kept me going was the rewriting, illustrating, and sharing of our stories, with Suki and the sweet ghost of my daughter by my side.

This COVID thing. It takes me back to the days of cancer and caregiving, when Marika and I wore masks and avoided crowds, always fretting about germs. That was when I first learned to sing the birthday song twice-over while scrubbing my hands. I would scrutinize everyone we came into contact with for any signs of infection or possible contamination. Living with cancer was so lonely back then. If only we’d had Zoom. Marika would have been endlessly zooming parties from her hospital bed. Maybe I could have zoomed my son and Laurie instead of burying my head in novels so much of that time.

Because of the novel coronavirus, I haven’t seen Greg in well over a year. He texts and phones me regularly from California where he works in executive security. I am so proud of him, employed and keeping up his own apartment during these chaotic times when so many sons and daughters are struggling. “There’s always a place for you here,” I tell him, in case things change.

Laurie phones me. And sends gifts through the mail. She still practices medicine but works online at her home these days. I miss her and look forward to the day my sisters and I can all get together again in person.

And Rachel. I mean Ray. On the eve of the tenth anniversary, Ray texts me from his cozy home in Florida, “Sushi tonight,” and I text him back, “Sushi tonight and tomorrow. Wish it could be with you.” Ray is a very handsome man now. He’s worked hard to find himself and make a good alcohol-free life. Yet he readily talks about his beginnings. And when I mention the dream I recently had where he was still Rachel, he told me he sometimes dreams of himself in his old life as Rachel, as well.

My friend Liz is my COVID buddy. Throughout the pandemic we have shared meals in each other’s houses and formed a tiny safe pod to get through this time. On the morning of the tenth anniversary, we mask up and meet at Ithaca’s new Trader Joe’s where she tells me first thing, “You have to buy flowers for Marika.” Then I shop like in the old times, bringing home more than I can possibly stuff into the freezer.

Suki, my inherited dog, is eleven years old now. My constant companion during the pandemic, she’s still hiking with me several times a week in the remote hills around Ithaca. It’s eerie how Suki often stares intently out across the living room, tentatively wagging her tail as if she maybe sees the shadow of someone she once knew and loved. If Marika were to actually appear, that dog would go ballistic jumping and a-leaping, dog-kissing her and squealing in joy.

As for me, I try to be One Tough Cookie, an expression of my mom’s I adopted after she died two years ago. I don’t want people to look at me and see only the pathetic Mother Whose Daughter Died. Okay, I do now-and-then nosedive into my grief, needing to wallow in the pain. And sometimes a song or smell will trigger me into a meltdown. But most days I’m filled with gratitude. Even during these COVID times, the life I lead is one I love, is one Marika would be proud of, is one she would have loved to live herself. I am the Mother Who Swallowed Her Daughter. There’s something of her in me now that soars at each opportunity for adventure, that sings in the car on the way to and from home. I now view the world through two sets of eyes, Marika’s and mine. And I carry her with me in joy as much as in sadness. 

I’m still on the fence about religion and heaven. And angels. And where one ends up after dying. My best friend from childhood, who discovered God and became an ordained minister over the decades I lost touch with her, told me God is everything, is in everything. That works for me. To me that means God is in Marika. And that makes me less embarrassed about admitting that these days I pray mostly to Marika. That’s not meant to sound irreverent. But maybe if we all connected the people around us to God in that way, we’d end up treating each other a lot better.

It took me four years to even consider joining a grief support group. One day I became a volunteer making bereavement phone calls for Ithaca’s Hospicare and Palliative Care Services, and shortly after, I began attending a child loss support group through Hospicare. That group eventually became the Ithaca Chapter of The Compassionate Friends. TCF is a peer support community for families that have experienced the death of a child, at any age, from any cause. Through TCF, we see the many different ways to live—with and without—our children who died. A dedicated member, when I realized there were other bereaved parents having problems socializing, I organized an offshoot of our local group to gather over monthly potluck dinners at members’ homes. All these get-togethers have had to operate via Zoom during COVID. And that is how I ended Marika’s tenth anniversary day, zooming with good friends who “get me.”

In November 2017 I returned to Australia. Traveling solo again for that trip, I met up in Adelaide, Melbourne, and Sydney with other bereaved mothers I’d found and friended on Facebook. Bonds formed easily with these strangers on the other side of the planet as we shared our stories and photos. And in Sydney, after giving me a tour of the city and the university Marika was to attend, TCF New South Wales president Jenny Wandl brought me to a monthly TCF meeting before taking me to her home to cremate Marika’s stuffed Puppy in her outdoor grill. It turns out Puppy was made of polyester, not cotton. So her remains were hard black chunks rather than ashes. Which reminded me that we’re all made of tougher stuff than we think. With Jenny’s help I scattered what was left of Puppy in the rocky shallows of Sydney’s Manley Beach. Being non-biodegradable, perhaps Puppy’s remains are still floating there among the rocks.

In the winter of 2021, I got the two COVID-19 vaccinations, each time holding tight to the memory of Marika grabbing my hand whenever she got a blood draw or injection. Sometime after my second shot, I woke up early one morning having dreamed of her. But it wasn’t the dream that woke me. I heard her say, “Mom,” her voice, spoken distinctly, close to my ear as if she was standing right over me. Just the one word, “Mom.” It was almost physical, like I could feel the breath in it. In over ten years I had not heard her voice so loud or clearly. And Marika’s voice didn’t fade like most dreams fade. It kept me smiling for weeks. I can feel it still.

I don’t know what’s next for me. It’s been cozy and safe, staying close to home. But almost daily, something of Marika drags me out into the world. On the news now they’re saying vaccinated persons no longer need to wear masks. I’m still wearing mine around my neck and keep an extra in my purse, but the Marika in me is already tearing it off and applying Very Berry Lip Gloss. She tells me, “Mom, I want to eat INSIDE a restaurant,” and has me checking out menus online. With her encouragement, every day I inch out a bit further from the house in one direction or the other. No longer rolling her eyes at me, in gentle prodding she says, “Mom, get a life. It’s time.”

 

 

 

 

REPLY TO ROBIN

Duetting: Memoir 18

Robin Botie of Ithaca, New York uses Photoshop to illustrate the journey with her daughter through the wilds of cancer.Depression affects the immune system. To survive bad luck, boredom, painful procedures, endless blood transfusions, and long hospital confinements when it seemed everyone else was out dancing, I conjured up all sorts of distractions for my daughter. Part of my mission was to make something magical happen each day. So I pretended the hospital was our summer resort. The lobby was an esplanade, perfect for people-watching, with the prevailing aroma of roasted coffee, and a player-less piano trilling away. The information desk was our concierge, offering restaurant menus for takeout dinners. Complimentary prune juice cocktails and ice cream cups were always available from the unit kitchen, a few doors down from our somewhat-less-than elegantly appointed room.

“If you could makeover this room, what color would you paint it?” I asked, wanting to draw Marika into my fantasy. She rolled her eyes at another of my stupid questions.
“Orange,” she grunted.
“What about the floor? Orange too?”
“Carpet.” Then she added, “And I’d make this a double bed with a real mattress.”
“I’d put a fridge in over there,” I said, grateful to get her engaged.
“Yeah, and a bar. I could use a martini.” Speechless, I looked at my just-turned eighteen-year-old daughter and wondered how many martinis she’d had.

When allowed off the unit, we escaped to the meditation room with its cool blue-green lights and crocheted blankets that hugged two stuffed chairs. I wheeled her to an indoor courtyard near the far-off dentistry wing. We roamed the endless hallways, searching for the chapel in the depths of the massive Strong. We tiptoed to the newborn babies’ window and peeked through the slats of drawn blinds to watch the tiny wrapped bundles wriggling or peacefully still.
“You were the most beautiful baby, Mareek.”
“I know,” she said, engrossed in the newborns.

“Where are they?” She growled impatiently. We were stranded in the radiation department, waiting for the transport team to take us back to the room.
“Okay, it’s been over ten minutes. I’m kidnapping you. Hold onto your hat,” I said, whirling her wheelchair around.
“Mom! Whoa, what are you doing?” she sputtered as we zigzagged wildly down the hall. “Do you know where you’re going?”
“No, but I bet I can get us back by lunchtime,” I said, surprising myself by my desperation to stave off negativity and the ensuing insults to Marika’s meager immune system. On the way to the room, we meandered through the fourth floor pediatric hall where the walls were painted in bold colors and plastered with distorting mirrors and protruding animal sculptures that begged to be interacted with. Then we were at the door to the Ronald MacDonald rooftop playground. It was deserted so we sat outside in the middle of the chain-link fenced-in yard, four floors up. From my backpack, I removed two tiny containers I’d carried around for days for just this opportunity. We blew filmy, fragile bubbles that flew off into the wind.

“Should I fetch cooked sushi for dinner tonight?” I asked in between bubbles.
“I want steak,” she said, adding “for lunch.”
“Well, if I get lunch take-outs we’ll have to eat hospital food for dinner,” I reminded her. That was our deal: eat hospital food for breakfast and lunch, eat well for dinner. “But,” I offered, “I might be talked into sharing a frozen latte from the lobby after a hospital lunch.” She scrunched up her face and declared,
“Double iced mocha with chocolate ice cream. I want my own.”
“Deal. Do you think we’re locked out?” I asked, nodding toward the door that had closed behind us when we went outside, a last-ditch effort to throw in some further intrigue.

Friends were the best diversion. They occasionally made the two-hour trip from Ithaca to Rochester. Cassie, Carla, Shoshana, Golda, Jeff, Julie, Lamarr, Rachel, and more. Cassie brought an enormous stuffed dog. Carla brought Silviana. Julie always climbed into bed with Marika. There was lots of pizza and Chinese food. And laughter. I left the room most of the time when her friends came. But not before I scanned them for signs of pinkeye or colds.

As it got closer to college orientation, the visits died down. Except for Rachel.
“How’s she doin’?” Rachel asked from Ithaca, ninety miles away.
“Well, it’s funny you should pick this moment to call. She’s in radiation right now. She had a high fever last night and we’re waiting to see…”
“Well tell her to cool down,” she said, “and tell her I miss her.” They called each other “Wifey.” Rachel, a year older, had recently passed her Emergency Medical Technician training. When not in college, she worked for a local ambulance company. I felt totally comfortable sharing the details of Marika’s condition with her. Especially since she always found us, whenever Marika’s health crashed, wherever we landed.

Several times a day, I rubbed Marika’s feet. She didn’t like asking.
“Mom.” She would shamelessly wave a foot in my face and frown pathetically. Foot rub.
“How do you do that with your mouth?” I asked, trying to mimic her pout. “It has to be a short one. I have to write a paper for my class.”
“Why don’t you pull the cancer card?” she yawned.
“What cancer card? What’s a cancer card?” I asked. She smiled with closed eyes, and wiggled her toes in anticipation of the foot-rub.    
“Just tell your teacher your daughter has cancer, Mom. Then you won’t have to work so hard.”

Marika never had to do much to get me to rub her feet; it was the only time now, other than grasping hands when she got shots, I could touch her. So I rubbed her feet when I was nervous, when she was tired, after breakfast, before bedtime. It was a dance of my hands over her soles, a meditative prayer tracing around her ankle bracelet, holding her heels, pulling gently on each of her painted toes. My thumbs lightly pressed butterfly-indentations over the balls of her feet. And finally, I’d slip-slide my palms along the curves of her arches, massaging those sweet feet over and over as though I could knead the cancer out. On hearing bad news, I’d grab her feet. It was my way of hugging her.

 

 

 

REPLY TO ROBIN

Duetting: Memoir 17

Duetting: Memoir 17 Robin Botie of Ithaca, New York uses Photoshop to illustrate how caregiving is like lifeguarding.

“When can we go home?” This was the one question I could always get away with in the hospital. It was our routine: ignore the nasty details, and push through to whatever we needed to hear in order to breathe. “She wants to know when she can go,” I’d say, but really, I, myself, hated being stuck in that creepy sunless hospital where I was turning languid and pale, sitting day after day immersed in my Ken Follett novel, World Without End. I was just as desperate as Marika was to be out of there. With luck, this second round of chemo would bring her blood counts back to normal and get her into remission. But Marika now had yellow skin and eyeballs. She was miserable with a head cold, fever, and stomach aches. Two weeks before, the Roc Docs discovered her inflamed gall bladder, but the surgeon couldn’t operate because she had no white blood cells to fight infection and too few platelets to stop the bleeding. Instead, they stuck a drainage tube in her side. It was now grinding against her tolerance.

“Mom, this sucks,” she yelled at me like it was my fault. We were constantly working to keep the tube and bile collection bag tied up in place with elastic bands and pins, tape, or anything that would hold until they could remove her gall bladder.
“Mom, where’s the tube?” she suddenly bellowed at me as if I’d taken it.
“What do you mean, where’s the tube?” We’d focused on little else the past week.
“The tube’s gone,” she said urgently.
“What did you do with it?”
“Maybe it fell out when I was in the vision clinic?”
“You left the tube in the vision clinic?” I said in an exaggerated accusatory tone, trying to stifle a giggle. We both broke out laughing at the thought of some unsuspecting half-blind patient finding the bile tube sitting abandoned on a waiting room chair. We needed to laugh. Cancer had become a summer-long project and the path to remission was riddled with setbacks. It looked like it was far from over, and Marika was tired of being a cancer patient. I was just getting the hang of caregiving.

Being a caregiver is a lot like being a lifeguard. Except as a caregiver I had just one swimmer I didn’t dare take my eyes off of. And she’d already sunken a few times, so I told myself I knew what danger looked like. Still, the lifeguard in me rarely rested.

“Any minor cold you pick up, with your compromised immune system, could turn into pneumonia. A friend’s pinkeye or cough could end up in septic shock for you. A virus could lead to major organ malfunction. Any stray little fungus or bacteria could kill you. So, no sushi,” the Roc Docs reminded us. Marika wanted sushi takeout for dinner. She always wanted sushi.
“Oysters?” she tried again in a tiny voice.
“How about cooked sushi? You know, the ones with cooked shrimp,” I contributed, trying hard to keep peace and establish common ground. Doc Phillips conceded to that and my eyes checked in with Marika’s.

“Can I get a pass to leave the hospital for a few hours?” she pushed. She was always pushing. I went for the compromises while she straight-shot for the prize. “Can I start college next month?” It was the big question of the summer. It was what we all prayed for, but didn’t dare plan on or shop for, in fear of jinxing the whole possibility. There was still too much that could completely dash that dream. And we never knew where trouble would come from.

“There’s no more cytarabine. So we’re sending you home. We’re sorry,” the Roc Docs announced days later during morning rounds. “We tried to get some from other area hospitals but there’s a nationwide shortage.” My eyes met Marika’s for a brief second before turning back to the doctors in disbelief.
“But that’s my main chemo drug now,” Marika whimpered.
“We’re sorry.”
“Call your dad, I’ll call Laurie,” I said, not fully digesting the significance of the situation but aware this was news they would want to know about. A good lifeguard is always ready for the unexpected; one never knows when it’ll be necessary to leap in and pull somebody from disaster. I made the arrangements for a homecoming, and packed up efficiently as nurses removed Marika’s IV. Then, suddenly, two young residents charged into the room out of breath.
“They’ve located the drug in Buffalo at Roswell Park Cancer Institute. It’s being sent over now.”

By the time the IV team returned to go through the tedious process of locating another vein on Marika and replacing the IV, I was wilted over the foot of the bed.
“Mom. Mom!” She blasted her eyes at me and bucked her chin toward the technicians surveying her arm. I’d almost forgotten my opportunity to squeeze her hand.

 

 

 

 

 

REPLY TO ROBIN

Afraid of Dying

Robin Botie of Ithaca, New York, photoshops a beach to illustrate the life and death cycle.You’re afraid of dying, you say, afraid of dying alone mostly. I wish I could tell you how this thing called death works and what dying means. Or where we end up in the end. I wish I could alleviate your fears, and tell you the best comes after life, that there will be music and bright lights and long-lost loved ones welcoming you. But I’m still trying to convince myself there’s more than nothingness, that after we die we reach some eternal heavenly state of consciousness, if not an actual heavenly place.

All I know is that for eons of time, trillions and gazillions of other beings before us have made this journey of conception, life, and then death. That this is part of a great cycle. And that maybe, possibly, death is not the last stage.

What if we think of this life-death cycle as a beach? Over the course of your lifetime you crept along the sandy shore, and then toddled, walked, and eventually waded into the water where you swam and dove through the waves, never noticing the tide gently dragging you out ever farther. And now every breath takes so much energy and struggling. Yet you keep swimming until there is nothing but ocean and sky, and soon you become part of them both. It’s like when you were born. You had no choice in being born, no control. You yielded to the forces pulling you into the then unknown world. Now it is time once more to be carried along into another great unknown.

You will not be alone at the end. There are those who will be honored to sit vigil with you and make you comfortable at this sacred time. Let’s call Hospice. Allow people in. I will come myself when I can, wearing my red-beaded necklace, the one like yours, because greeting death with red beads seems both gutsy and appropriate. I’ll hold your hands and listen to your memories, or to your breathing. Maybe I’ll rub your feet.

And finally, when you are gone to the great wherever, I will always love you and remember you. Whenever I wear those beads I’ll think of you laughing boldly in a bevy of friends, immaculately bedecked with makeup and perfectly matched jewels.

 

What can you do to assuage a loved one’s fear of dying?

REPLY TO ROBIN

Learning to Sit Vigil with the Dying

Robin Botie of Ithaca, New York, photoshops her eyes watching over her dying daughter's face to illustrate sitting vigil with the dying.Always squeamish about facing death, after years of volunteering solely with the bereaved through Hospicare and Paliative Care Services, I finally attended the workshop for how to sit vigil with the dying. The main idea of sitting vigil is to listen, stay present, and direct your energy and compassion to the one who is dying. To practice this, toward the end of the training, the participants paired off for an exercise where we took turns playing each of two roles, the Thinker and the Listener. First my partner sat, thinking of something. I, the Listener, was to simply watch her and be with her. Silently. This, I imagined, would be the harder part. But it went smoothly as I observed attentively, breathing in sync with my partner for what seemed like forever, until the time was called and we switched roles.

I intended to fill my time as Thinker with memories of my daughter who died seven years ago. Marika having tantrums, rolling her eyes when she disagreed with me, laughing, her hoop earrings and iridescent eye makeup…. But shortly after I started thinking, something unexpected happened. Instead of remembering our sweet and sour interactions, I was transported back to our last two days together, when I sat vigil with her, watching for the tiniest twitch of her brows. Staring at her face to remember her features forevermore.

Suddenly something in the exercise went screwy. My partner seemed to be me. And I felt like I was my daughter. Looking up into brown eyes that waited patiently with me, I became Marika, lying still, waking occasionally from sedation to find my sad loving eyes fixed on her face. The rest of the world disappeared beyond the bubble that contained our two sets of eyes.

Over the past seven years, I’d never thought of those last days from Marika’s point of view. I’d never considered that my being there, caressing her with my eyes, might be a comfort to her. Before this, I couldn’t have imagined what a gift it was, for us both, to just be there together at the end.

How could I possibly try to illustrate this? I don’t know. But I do know, now, how I will sit with the family members, friends, or strangers I am privileged to be with in their final hours.

 

Have you ever sat vigil with a dying person? What gifts can we give to someone who is dying?

REPLY TO ROBIN

Another Precious Summer, Training for Life

Sixteen summers ago, in June, when peonies bowed their heavy heads, wispy clouds wafted over the still lake at Camp Scatico in Elizaville, New York. It was early morning a few weeks before camp would open, and that year’s new group of lifeguards was in training. Polar bear swim. To get a head start I ran into the lake first, breaking the calm surface into ripples. Two great blue herons suddenly soared up out of the mist. They flew over me, and before I could shout, “Look,” the other lifeguards, decades younger than I, splashed noisily by with great speed and strength. They swam all the way to some far marker and back again, twice leaving me in their wake. But that didn’t matter. Even then, I knew it was the beginning of a new journey. For me.

Two months before, I had turned fifty. Always afraid of drowning, I’d never dreamed of becoming a lifeguard. In order to afford to send my kids to camp though, I’d taken a job as a hiking counselor, and then the camp had me trained and certified. I spent the next four summers hiking and lifeguarding. And training. Every time the peonies bloomed I set off for camp for more lifeguarding instruction. It was good training for what was to come later, when my daughter got cancer.

Years after those lifeguarding summers, peonies were just starting to bloom when Marika was first diagnosed and I became her caregiver. Caregiving and lifeguarding were similar. Except with caregiving there was only one life to keep from drowning. And after the first summer with cancer Marika got her own lifeguard certification. Being a cancer survivor and a lifeguard, she knew something about the nature of life. A local camp hired her, but for the next two years, just when peonies perfumed the air, cancer came back. Marika and I were stuck in hospitals. Three whole precious summers lost. And after, there were summers when the peonies were lost; everything beautiful was lost on me. I was living in a downward wafting cloud.

The memoir I’ve been writing for the last six years was, at one point, to be titled Lifeguarding. A friend suggested that Guarding Life would be better. That got me thinking. Because guarding life is what I do now. Life and lives. And time. All bright, fresh, bursting with promise. Mysterious. Fragile. Elusive.

Whenever peonies bloom I get excited about summer, and I remember Camp Scatico where each June they train more lifeguards and leaders. I wish them a brilliant season, and hope these new leaders get to see the herons. My best wishes to all of us for a most magnificent summer.

 

Where will summer take you this year? Where will you allow yourself to go?

 

 

REPLY TO ROBIN