Taking Mom Home
A Eugene man’s journey with his mother to the end
Story and Photos by Ben Fogelson
|Susanne Schumann 1937-2010|
|Putting our heads together|
|Your own bedding at the hospital doesn’t mean you’re home|
So leave me to die in the comfort … of my own home. — From “Punk as Fuck” by American Analog Set
Pulling the trigger, 9 am Jan. 4, 2010
Killed Mom a few hours ago. I haven’t even had my coffee.
Actually, the state of Oregon says I didn’t kill her. State says that “Death with Dignity” is not euthanasia. Not “assisted suicide.” But the State of Ben says know yer liberties. As individuals, death is nothing if not our own. Call it what you will, there’s one thing I know: She wouldn’t have done it without me.
Now Mom’s the deepest vision of silver-haired sleep, literally chilling on her side next to me in bed, snuggled up like a happy child, my hand on her shoulder, her head, her hair. I call my peeps to tell them it happened, that three months after her diagnosis and the following downhill slide, she rolled over at 3 am last night and woke me with, “I want to do it now.”
And so we did it. She swallowed the stuff and died and my friends say wow and what was it was like.
“Amazing.” I say. “In-fucking-credible. Insane.” And I mean every syllable.
“So where is she now?” They ask.
“Uhh, right next to me.” I say. “I’m still sitting here.”
Their gasps resound clearly, echoes in empty churches.
I look at myself, still in the bed. “It’s too cold to get out from under the covers.” I say.
It’s not cold, but the lie helps. What am I doing here? For many months I was there for my mom. Now I exist for myself.
I say to my friends that I’m going to put shades on her and a hat and take her for a ride to the incinerator in her convertible, and I almost believe myself. That I might take pictures of Mom and I on Portland bridges, at the Square, that we (I) might get coffee, like two spies passing microfilm but sans microfilm and with a dead mother. But when I gently raise her head and slip the sunglasses over her ears I realize that, despite knowing such an irreverent gesture would have won her complete, enthusiastic and unadulterated approval, she’s cooled down now and stiffening, and I can’t follow through. Who knows what one will become in times like these?
So … what do I do?
I dial a budget mortuary and a calm male voice answers, pauses, reverent, self-assigned keeper of the gate. There’s silence, silence on the line growing into a towering mountain shadowing my world. In the wholeness of one staggering moment my voice struggles up the slope and pours down the other side.
“I want to … schedule a pick-up.”
It was …
Pancreatic cancer, caught late. So late they’d shut the doors and posted a guard.
PankC is like that. If not stumbled upon in its infancy, such as birthing itself high up in the organ, initially blocking a bile-duct and painting you jaundiced yellow, there’s not much other reason you’d notice its presence while it sets up camp, collects kindling and builds a roaring fire.
“Unfortunately,” says my brother Nick, an OB in gynecology, “that’s the nature of a lot of cancer.”
True that, little brother. Can I get a witness? Mom couldn’t. Not in time, anyway. Her cancer was not caught in its infancy at all.
Looking back Mom was losing weight and said she was tired, but she seemed old enough to thin out — and coating the growing cracks of her illness was the armored exterior of a multifarious past. Count back from over 70 and imagine a little girl growing up in a loud, incendiary Berlin. She was abused, emotionally and physically, but she hardened up, swam on the German national team and was very smart. She made it to the U.S., got her masters and Ph.D. in psychology but then couldn’t make it through her own psychotherapy. These complexities eventually became an attractive and risky — to those who loved her — mixture that made up her duplicitious personality.
In adulthood, her physical frame rebelled. It began with affliction but included addiction. Her spine was the first to cause her physical pain, but her greatest ache lay deeper and would never out. With the help of doctors and her own observations, she tirelessly commanded surgeries on her back, feet, shoulder and hips. Continuously in a state of (self) diagnosis, recovery or both, she somehow, heroically managed to swim national records, have a family and here a widely respected psychology practice. She was proud and loud, a bull in a china shop, and favoring nature over nurture, she believed her path to be set. She charged forward ever scoffing at convention, and was adored and feared for it, as an athlete, an intellectual, an artist and a character.
She was generous and venomous, and she felt she couldn’t change. Accepting from Mom came at cost.
“No,” she said to me one time, when we were visiting a Hindu temple together. It was a warm sunny morning, and a breeze trailed through ancient stone statues. “I guess I don’t.”
I’d asked her if she respected me. We were in India together. She asked me to be there. It was only through accepting her invitation that I found myself hearing those words in response to my query. One who feels it knows it, I guess.
As with many of her friends and family before and after me, my role was often the recipient of love disguised as heaping generosity, often a debtor when an un-bidden balance was called due, saddening though unintentional — emotional subterfuge.
So when she said she was feeling tired, no one gave it a second thought. More like, about time. Tired we can deal with.
So no, it was not caught in its infancy.
A shower of good timing, 8 pm, Jan. 2, 2010
We siblings had been taking turns. It was necessary in order to keep up with what Mom needed. But it seemed like the end was nearing.
I was at home in Eugene, and I heard it had gotten bad since I had departed several days before. The following I heard by phone: My sister found Mom wandering about in the middle of the night, delirious, fully dressed for work. Another time, after being put to bed at night, Mom was found at dawn in the bathtub, unable to get out, sitting naked in cold water. And finally, she couldn’t always hold herself any more. On a trip to the bathroom she hadn’t made it. It was a clean up.
As far as Mom’s decision to end her life if things ever got unbearable, there was a line in the sand. She’d told me in her tough, brash way years before, “If I can’t shit on my own, that’s it. Good-bye.”
I knew she’d meant it. I needed to get back up there.
One thought I had was that perhaps she was taking too much morphine. When I showed up, Mom was in bed, literally not knowing day from night. The passage of time had ceased to be part of her conscious program. It was evening and she wailed loudly from her bed about it being tomorrow. She was crying terribly and I soothed her and took over, fearful of and doubting my own ability to handle a long night of the worst, from a couch by her bedside. A night with the kind of stuff I’d heard had happened the last few nights.
Before she went to sleep I got her to understand that if she wanted morphine she’d have to get it on her own. She watched as I pushed the little brown bottle from where it sat directly next to her, to about 10 inches farther away. I had a momentary vision of her drinking the drugs from a dropper held up to her mouth. Now she’d have to reach for it.
I woke early to a clear view of the city through her massive bedroom window, surprised and relieved to have slept a calm night. I went upstairs, knowing that despite continuously claiming a lack of all hunger, Mom had so far devoured whatever vittles I’d put before her. I just didn’t know if that would still hold, from what I’d been hearing.
When she woke, this day before her last, she was clear-eyed and smiling, thin, but cognizant and alert. She’d always made the best eggs Benedict and I’d inherited the secret. I put the plate of two English muffins with ham and eggs and drenched in lemony sauce on her lap, and the buttery deliciousness was gone in short minutes. She sat up straight and started going through papers. Mom was back.
What followed was easily one of the best days of our lives. I cooked steak. Made her open-faced sandwiches on dark German bread and small glasses of brown beer. She ate every bite and only occasionally reached over for her dropper of morphine.
The difficulties of the last months were beginning to fade away. I noticed a sense of lightness was becoming pervasive. I smiled deep into her eyes many times and she into mine. We put our heads together. I was doing the best giving I could imagine.
That evening I took her into the shower. I had never wanted to see her naked because I’m still afraid of the path to death and what the vision might mean, so this was always tough for me. This time it was different. The day had been so sublime, it transformed apprehension into action, fear into love. She sat on a stool and let warm water pour down upon her. I handed her soap and massaged her shoulders and scrubbed her hair and played the fool and made her laugh. At last, I wrapped a white towel around her head and she made to rise. Looking at her clear face I said, “Stay there. I need to get the camera.”
She hesitated and then followed my command. She could hear in my voice what I had seen, and she always did love to look beautiful.
That night, she told me from her bed, “Tomorrow I want to do it.”
I got up off the couch and sat with her and we held hands.
“If you really need to say that, fine,” I said, “but you don’t have to. If you want me there, and I do want to be there, I don’t care where I am. I’ll come within a couple hours and you can do it then.”
I had no great belief or hope that she would follow through on that the next day, and to an extent I was right. But through that night I slept in her bed with her for the first time in my adult life, amazed at what tomorrow could bring, the great change of a life departing the world, and me left behind to live in it.
We held hands and felt warm and smiled and enjoyed the increasingly buoyant feeling in the room, which was silent until 3 am.
Rude awakening, 3:30 am Jan. 4, 2010
Sleep weighs softly on us. After years of traveling the Third World, Mom knows which back-alley market stalls sell the finest sheets, and we’re wrapped in them, thread upon thread, ceaselessly approaching a world beyond our own. And while we sleep, her house floats above Portland on a tall hill. And the walls are all windows and the city lights are a million sparkles beyond the glass, observers of our warmth. And in a single moment, Mom’s thin hand reaches over and tussles my dozing shoulder, and I wake beside her in her last hour.
Her voice in the thickening darkness: “I want to do it now.”
And I audibly wonder, my eyes widening, “Are you serious?”
“Yes, I want to do it now.”
And I say, “I gotta piss.” On my way to the toilet, padding naked across deep carpet I’m caught gliding on a rail, watching the walls float by like some amusement ride of my youth. My brass band heart breaks into a stacato warm-up.
I return, squint at Mom closely in the shadows and say softly, “Are you serious?”
“Yes,” she says, her eyes clear in the darkness, sitting up, lucid and fine, her legs swung off the bed.
Holy mother of God. Am I ready for this?
“I gotta get my clothes on.” I say. The world as I know it has slowed down and sped up simultaneously, passing us in two directions. The future approaches, hurtling at a meteoric pace, while the present is pleasant, deep and silent. The past is becoming itself, unraveling like the threads on the bed.
“What do we do?” I ask.
She tells me.
Death with Dignity can go like this: You take a few preliminary pills and wait 30 minutes. The fellas kick in, and as I understand it, they keep the body from puking and shitting when death comes knocking. Those buggers put the “D” in dignity. Thirty minutes go by, and you drink a mixture of water and the contents of a butt-load of emptied barbiturate capsules. Then, as in my mom’s case, you’ve got about 90 seconds to make a statement on your way down to the pillow. You paddle for your greatest wave about an hour from then.
“Look, Mom,” I say, knowing that throughout her entire life she had a penchant for messing up instructions, “If you want to do it like that, I’m OK with it, but I think maybe I should just read the directions. That OK with you?”
“Yep,” she says, but she knows she’s nailed it on this one. This is something she paid attention to. “I don’t want to wake up in a hospital bed.” She adds, looking at me pleadingly and almost sly. “If this doesn’t work, you have to figure it out.”
She lifts the first pills to her mouth and swallows them, then takes a drink from a glass through a straw.
She tells me to call three of her friends and my sister. They’d have to answer their phones, and then they’d have no more than 30 minutes to make it to Mom’s bedroom. She’s been dying for a while, and she isn’t waiting now.
Death-minus-30. I hold poison in my hands, the great catalyst. Is it poison? It looks normal, a sealed plastic orange container, like a trip to the pharmacist.
The calls made, I go to the bathroom sink to mix the barbiturates. Never before have I been terrified to spill. Scared, yes; terrified, no. Another first. The sink shoots water out faster than I intend, and — my heart almost coming to a stop — some powder blows out over the lip of the container, settling on the counter. My eyes widen. How much? I look in the wet container. Will it matter? I decide it won’t. I lick a finger and put it down on the mess on the counter, raise it to my lips. Finger to mouth, the taste of beginning, end, hereafter. Bittered and wincing, I sprint upstairs to the kitchen for some maple syrup. I deliberate for a moment between real and Log Cabin.
I also called the Death With Dignity representative. I would have liked to have been able to verify our understanding of the printed instructions and to ask if maple syrup could possibly botch the job, but one can only let a phone ring so long.
Back to the bedroom, Mom sits quietly. I can’t believe this is happening. I can’t believe this is happening.
Kneeling at the bedside, I hold the cup forward. Mom looks at me and takes it. She pragmatically plugs her nose and raises the container to her lips and drinks until there is no more. Silence. She hands it back to me, and I put it on the table beside her bed, our eyes locked.
She gazes at me with a smile in her eyes and in her heart. She lifts her arms and pulls me down …
I just deleted my “Mom” folder, 4 am
“Tell Liz how much I love her. And tell Nick.”
My sister and brother.
“I love you so much. You have done such a good job.” Her arms hold me gently and tight, wrapped around my neck as I lean forward onto her from the edge of the bed.
“And now …” She says drowsily and happy, and I realize what the thickness in the air is. Arrives a time when love has weight, is palpable. I’d brought mine to her house above the city and Mom’s was flowing from her like a lake turned on end, filling the room from bottom to top. Her floodgates had opened, and our love was mingling and perfect in its existence, content to push sublime serenity into every silent corner. I guess I’d chosen the right syrup.
“You just have to let … go.”
And her arms open up around my neck, strangely enough as if she is going to fly away, and those were her last words, and her eyes are closing, and two of her friends come around the corner and make it just in time. She turns on her side and snuggles down into feathers she looks at one friend and takes a kiss, and then her eyelids meet, and we four stay silent in the darkness.
I kneel at her head, the side of the bed, ultra alert, seeming to take notice of every infinitesimal vibration. What happens when the soul floats away? Does it? The friends sit on the floor to my left, crying noiselessly in the peace. The silence is absolute. On my knees and statue-still I stay. Then my arm reaches out and cradles the back of my mom’s white-haired head, gently.
She appears to breathe for some time.
Moments tick away. Occasionally I open my eyes, let shapes reestablish themselves in the grey, fuzzy darkness. Does her chest rise and fall? We are tied to earth by fragile tendons. To the left, a family hand takes my own. My knees sink deeper into the carpet and my spine straightens, a line upwards to the ceiling and beyond, and we sit. Breaths long and slow, love in, love out.
After 45 minutes, I feel the almost imperceptible loss of my balance. I open my eyes for a moment, and 5 am is not far away. Make it there, I think, and it will be over. Make it to 5, make it to the end.
“Alright,” I say, another quarter hour gone by. “You guys do whatever you want.” I mean it. Still on a track, still flowing forward.
“I’m going to sleep.” Suddenly so drowsy, I stand and walk around the bed, her friends now lost behind me and dissolving into the mist. And I lift an edge of the covers and slide in next to her and put my head not far from hers and my hand on her shoulder asking for the last of her physical comfort, and I lie that way until the city is touched and then covered in a blanket of sun and the room is bright and airy and I wake in a state of bewilderment and excitement and gratitude.
I think she is gone.
Predicting the unpredictable.
On how not to off one’s self.
Saying you’ll kill yourself when the last guest leaves is a terrible idea. Who knows how long they’ll stay?
“I’m going to do it when the last guest leaves,” Mom says two weeks before her going away party.
Mom had been given three-to-six months. My brother the doctor said it’d be like two-to-four. I said what about with good behavior? Obvious point is, use the time you’re given. A few months is not a lot to tie up a lifetime of strings, but it’s a lot more time than what you get when death comes unnanounced. Given the estimates, we lucky novices (my siblings and I) did manage to intuit that even 60 days would be incalculably precious for setting up for a lifetime of looking back satisfied.
And so we threw a party, one that carried us and killed us.
It was awesome, and everyone pitched in. I printed my Mom’s nickname onto shirts in every color the catalogue had, no two the same. The family grumbled at first, but it soon became a tugging-match for shirts as the guests grew into a cheesy-yet-brilliant rainbow, unanimously declaring love and support. Mom sat doped and vibrant on her upstairs couch, smiling and laughing with a large room absolutely jammed with her family and friends, all of them attentively listening to and recounting memories, crying, laughing thunderous. It was perfect, and everyone got the shared farewell they’d expected. I read some writing* to her and bawled like a son losing his mother. I told her, a champion swimmer, how waves were my lover and plaything and how her granddaughter excelled in water.
However, through the laughter and tears, having heard Mom’s morbid declaration to depart soon thereafter, many guests thought they were witnessing her final hours. And we siblings felt especially emotional, excited and unfortunately expectant.
“I’m going to do it when the last guest leaves,” she told us two weeks earlier.
“OK, Mom,” we say. “What do you want to call the party?”
It hadn’t occurred to her, and she doesn’t care. I suggest “Susanne Schumann 2010: Dangerous,” and am serious, but by the look in my sister’s eye, I am told someone else will be handling the invites.
As the day approaches, we can only imagine that the weeks of extremely stressful details are winding down. The trips to the emergency room to withstand her pulmonary embolisms, the navigation of hospice care, the oxygen and insurance companies, a deluge of well-wishers, our own sadness-ridden emotions, all spread among three siblings who barely get along, all this must be coming to an end. Because Mom has said she’ll dispatch herself after the party.
But she didn’t. The party was a humongous shot of adrenaline, far better than any chemo.
After the guests leave and Mom “stays,” we children wander around hollow for days, double horrible, crying in contradictory limbo. We humans seek closure. To be denied that blessed finality and hate the resulting anguish is to wish harm on the one whose lost love we predict to grieve.
Don’t go there. Mom ended up having some decent weeks, and in the end, she sprung it on me as she should have, with a tap on my shoulder. She, having seen the havoc it wrought, admitted she’d made a bad mistake with her prediction, and if you can’t trust a deathbed admission, you’re not reading the story; the story’s being read to you. We forgave her, of course. However … lesson learned.
Get the medications by the bed, let the loved ones know a time may be picked in the whim of a wondrous moment. At some point, a sense of love and lightness will invade the room, and you’ll be the second one to know it.
This story, dedicated to my family, is now finished from Ocean Haven, an awesome hotel on the Oregon Coast. I sit in the same room I slept in after my daughter Quinn’s still-birth, and the same room that my wife Meagan’s mother Joni stayed in after the death of her own mother.
Letter to Mom, from Ben
Mom, now that all of us have come to this place together, and now that many of your loved ones are gathering to honor and celebrate you, and to soak in your exceptional energy like you used to soak up potato-leek soup with hunks of soft Metropol French bread, I know it is time to recount some moments, share significant memories, invoke selected slices of the past, those which were, are, and always will be, you.
I was 11 years old. Time freezes at a red light. “I will always love you, no matter how. No matter how you turn out: fat, thin, short, tall, black, white, big, small, gay, straight. I will always, always love you. No matter what choice you make in life.” That was me, the kid you were talking to, building me up, instilling me with security. That foundation was you.
Next, my hand pressing deep into Andean moss, moist emerald threads of centuries, grey stones and backpacks and chewing coca leaves. That, my friends, and the love we shared and that Peruvian sunrise, was you.
Underwater. I’m off the starting block in a high-school pool, time expands, lengthens, and the plunge envelops me into another world entirely. I’m fast, some naturally but largely by your teaching. Now I’m 90 feet down and in the distance where the crazy deep blueness meets crazier deeper blueness, a giant leopard ray floats by as if on some track, soars by, flapping its wings slowly saying to me you belong, you’re OK here. Now I’m in the surf off some Hawaiian island. The waves are large, and I dive barefoot beneath them, or leap over them or plunge through them, their tricky strength has become a part of me, like my dream-self. The joy the water brings is immense. And now my daughter Jun turns heads at the pool through her fearless submarine talents, and Meagan, who once was fearful and could scarcely propel herself in the water, has safely surfed truly large Hawaiian waves with me, to my extreme delight. That is you.
Opal Creek, old forest, center of the center of the center of nature’s grace, we hike up and down you and I — you with a walking stick, me with a pack, and finding soft green forest floor three yards thick we make our beds, smoke and eat and talk and laugh, listening to the roaring creek like characters from some fantasy novel, traveling to a hidden land, knowing we would pass along that way but twice, there and back. We shared those secret corners of that place, and that was you.
Your granddaughter Jun: She is you. From taking Meagan in as your daughter, to recognizing her motherly yearning. You didn’t judge us, but gave encouragement and money. During the adoption process you placed 1,000 terrible curses on anyone who slowed things down, sent blessings across the seas that would keep Bai Yumei safe and happy until our arrival. After only several dozen steps back on home soil, you were the first to hold dear Jun, and her eyes are still bright to this day with the thought of her “Omi.” In that you are hers alone. May a part of her laugh ever be your laughter, for that is you.
India. The Taj Mahal. China, the markets where shopkeepers kept phenomenal animals and potions made from them. South America, Spanish, France, 4 am drunken stops at the first boulangerie open in the morning. Japan, young and scared. As child you had me viewing the world through varied lenses, a small world because of jet airplanes, a large world because of the unfair scattering of resources, a small world because of the best parts of human nature, a small world because I grew to decide me future called for it.
Thank you, Mom, thank you so much. From your beginnings to today, you have saturated the universe around you with your spirit. The fact that everyone here will agree to that does not make it so; it simply is, as you have made it. This is my personal and public acknowledgement of what would not have come to pass, at least not in such a way, all things that I value as much as I value anything in life, without you and your additions. Thanks, Mom.