I lie in a dying man’s bed. Awake before dawn as always, these days. My husband snores quietly beside me. I get up and toss on a sweatshirt and tiptoe downstairs. All is silent in the house. Every day I’ve set this pattern as we all have gathered in the vigil of watching my brother-in-law, die.
Mike, or Mikey, as we call him, my husband’s best friend and brother - mine too - is winding down his horrific journey with cancer. At only forty-four, for the past eleven years he has endured a gliosarcoma/astrocytoma brain tumor combo (you want fries with that?). He put in all the work – brain surgery, radiation, and chemo. Then, he got nine good years. Clean and clear years. He marries, retires from the Air Force, starts a business with his wife, and inherits her daughter whom he adores. But this time it’s over. When the cancer came raging back, he did all the same things. But it took its toll. A few weeks ago, his oncologist sat down with his wife Debra and explained in the gentlest way possible, that this time it was over. The tumors had hopped from the right into the left hemisphere of his brain and would finish mercilessly ravaging him. The treatments and the clinical trials hadn’t worked, they had done all they could. It was time for hospice.
Now, here we are – eight of us in total – gathered at their home in San Antonio to say goodbye. To tend to the dying. To find our way through love and grief and bear witness to the end of his life.
I take the early shift. I always have been the one to get up first. A morning person. Now, a mourning person.
I start the coffee pot, take a seat at the kitchen table, and open my laptop. I always wake up with the words in my head. So many from afar want to hear how we fare, know how Mikey is doing. What can they do? I’m the designated communicator as I type out emails to our loved friends and extended family to keep them up with the latest.
I look around the kitchen as the sun slowly makes its appearance. It always does. But when you’re watching the end of someone’s life, it all takes on new meanings. Can’t the world just stop to take notice of one lovely soul? Especially one taken too young.
I notice crumbs on the kitchen floor left over from last night’s dinner. I find a broom and sweep them up. Everyone is still asleep. The cast of characters in this trauma-drama are:
Mikey – the beloved, dying one.
Debra – his wife, still in denial and irrationally clinging to hope.
Rose – the daughter, a teenager, struggling to grasp it all.
Kyle – the brother and my husband, stoic and trying to manage himself and everyone else.
Donna – Mike’s mother, living a desperate plea that she should not have to bury her son.
Edward – Mike’s dad, the antagonist: cluelessness and cruelty combined into one body.
Me – the wife of Kyle and early riser, trying to love everyone, to make it better if she can.
Ben – brother of Debra, but really brother to all.
The seven of us each cast in a different role of suffering as we try to attend to the eighth.
As of this early morning, Mike is downstairs sleeping (I hope) in the guest room in a hospital bed provided by hospice. Debra sleeps little, on a mattress on the floor each night beside him. Ben sleeps on the couch in the family room right outside the door in case Debra needs help in the night.
My husband Kyle and I sleep in the master bedroom upstairs. Not our rightful place, it should be theirs. But for now, it is what we do – sleep in the bed of our dying brother and his wife. Donna and Rose each sleep in their bedrooms nearby.
It has been nearly two weeks that we’ve settled into this routine. I get up early, make coffee and prepare for the day ahead. Shower and then head back downstairs. At some point an exhausted Debra crawls upstairs. I know little about her nights. She always eats a bit, takes a 200 ml. Zanax and curls up on the couch for several hours, which may be the only real sleep she gets.
Donna comes down and eventually the rest of the family rouses. She makes breakfasts and I make the dinners. We begin our rotation of eating, dressing and the mundane humanity that defines a life. But not Mikey’s. He sleeps, until he doesn’t. Hospice nurses come and go, tending to his humanity in private with as much dignity as the process can muster. We take turns sitting at his bedside. Sometimes in the morning he is most awake and will even speak.
On one such day I’m downstairs with Mikey at his bedside during the mid-morning hours. The music is on, a peaceful shamanic rhythm.
He awakens and manages to gesture and says, “water.” I pick up the large plastic cup and straw and place it to his lips. He sucks. I pull away the cup and watch him. But then he does not swallow. The water sits there in his mouth, and I’m beginning to panic. His body is beyond the ability to respond to liquids “going down the wrong pipe”. He could literally, drown. I’m standing, silently freaking out saying in an urgent whisper, “swallow Mikey, swallow!” I’m envisioning how it is that I explain to my family above that I’ve just killed him. That was it, I gave him a drink and then he died. Finally, I see his tongue move back and he swallows the water. A huge gasp of relief rolls through me.
Soon after, Ben comes into relieve me. I tell him what happened – and he tells me not to worry, saying Mikey scares him like that all the time.
I’ve never witnessed someone’s slow slide into the ether. Each day is different, but we find a pattern.
Here are the things we do while watching Mikey die:
1. Sit with him often, hold his hand, brush his arm, play soft music he likes. Talk to him and tell him stories and how much we love him.
2. Stay busy – Ben and Kyle work on laying flagstones on the patio. A project left unfinished. They lift, break, and shatter these huge pieces while their hearts do the same, blowing off steam. Then reconstruct them to create a foundation to something we will never see.
3. Cry. Each of us. Alone and in silence.
4. Rose practices her drivers-permit skills by taking me grocery shopping. Here I run errands, shop for food and necessities to keep us all fed and lubricated.
5. Laundry. Dying people make a lot of laundry. There is always a pile to wash, fold or put away.
6. Drink copious amounts of alcohol. Each afternoon after 4pm someone declares first cocktail. After that, it’s on. Something called Red Rum, whiskey of all sorts, beer, wine, and what becomes known as Monkey Butt is consumed each night until we stagger to bed.
Here are the things we don’t do while watching Mikey die:
1. Cry together. Doing so would mean we would have to face each other in our grief. And we’re not ready to do that.
2. Take care of ourselves.
3. Go places. We go for the occasional walk, but there is no bliss for us in the outside world. All feels gray even though it is July and then August. The rest of the world plays in the sunshine. We do not see or feel its warmth.
4. Spend any more time than necessary with the father, Edward. His small heart and smaller mind are intolerable most days.
5. Talk about the fact that Mikey will leave us. We talk about him, with him, share stories about him, but not the bastard cancer that is killing him or that he soon won’t be here.
6. Live. We breathe, eat, sleep, wake up, and do it all over again. We even laugh together. But we are not alive.
I do not know why this is. For some reason, when we watch a loved one die, it feels like we bury part of ourselves with them. But how does killing a piece of ourselves honor the one who has gone beyond and lost the gift of being alive? Would they not wish us to stay whole, to remain as we are, and live? I think they do.
I awaken before dawn in a dying man’s bed. Until one day, I don’t.