This is the second in our series of essays by guest authors, who have been generous enough to offer their own stories of dying and death. Phyllis’s palpable difficulty in coping with the increasing physical and mental demands of her husband’s decline is poignant and instructive. I’m sure many caregivers will recognize echoes of their own experiences in what she writes here.
by Phyllis Diller Stewart
When cancer comes to call, it is entirely unexpected. We have spent no anxious days wondering about a suspicious lump, and no sleepless nights waiting for test results. Except in hindsight, there isn’t a single suggestion of cancer’s imminent visit. No, on this raw January day, cancer broadsides our family when it causes my husband to have a seizure in the middle of a Lone Star Cafe where we’re eating lunch. In six hours flat we speed from fajitas and salsa in the suburbs, through two local hospitals, and on to a big downtown ER. There, we’re warehoused until we can see a neurosurgeon about the scary grey mass that shows up on a CT of Paul’s brain.
My thirty-nine year old husband is tall and athletic, exuding togetherness and in-chargeness. He’s always the voice of reason, and very self-sufficient, so out-of-control seizures on the floor of a restaurant aren’t really his thing. I think this loss of control, shakes our children, fifteen-year-old Scott and Beth, thirteen, as much as the actual event.
When I finally get home that night, where my parents have taken the kids, I’m in shock and beyond exhausted. Huddled alone in our bed, cold, and so tired I can’t get to sleep, I picture Paul and I being forced to load our family into a boat, and then, with no warning, we’re launched onto storm-tossed seas. What I don’t realize is that the vessel we’re aboard is a canoe, and for the next twenty-one months it will be my job to keep us afloat.
Surgery is planned to remove as much of the now-confirmed brain tumour as possible, and for three days Paul must lie in his hospital bed and wait. It makes him crazy. Although the doctor, and a multitude of white-coated residents who populate this teaching hospital, frown and shake their heads when discussing our case, no one has out-and-out said what I already know. I work as a secretary on the palliative care unit of a hospital. At this moment two patients with his kind of tumour are spending their final days just a few feet from my desk.
The morning before surgery I’m able to speak to our neurosurgeon on the phone, so I ask for a “get out of jail free” card.
The morning before surgery I’m able to speak to our neurosurgeon on the phone, so I ask for a “get out of jail free” card.
“Sure. Take Paul home for awhile,” he says. “And while you’re there, make sure to get his affairs in order. If he doesn’t already have a will, he should get one.”
And there I have it. His expectation of my husband’s potentially imminent demise can’t be stated more clearly than that. The process of death has begun.
Paul comes home soon after surgery with two black eyes and a vicious-looking half circle of staples running from the middle of his forehead to just behind one ear. After a number of tests, he has been pronounced “cognitively intact” and I take comfort in those words. Radiation follows the surgery and that leaves him profoundly exhausted. Overall, though, he does so well that his driving license, lifted following the seizure, is restored, and he returns to work. Although things look normal, we know what we know, and every day we walk on eggshells while looking over our shoulders.
By mid-December Paul is getting headaches too painful to ignore, and at Christmas time we have to tell our families that CTs show the tumour’s been growing. Canoe-balancing is now a full-time job.
Because he’s young, the doctor says he’ll operate again and hopefully gain us a bit of time, but it’s not like before. The kids start to lose their dad, inch by terrible inch, and I gradually assume the role of caregiver.
Our boat pitches wildly as we recognize the changes we have to make to keep Paul safe. When he double-doses himself on narcotics, the extra dose meticulously recorded on a med schedule I’ve made, I have to hide the pills. He’s still clever enough to look for them, and it’s difficult to retrieve them every few hours and then hide them again.
He develops an unsettling way of looking at people when they talk to him, and his answers are sometimes wildly inappropriate. Twice, when I’m outdoors, he answers the phone. He orders new windows from the first telemarketer, and a reverse osmosis system from the second. We don’t need these products, but he’s lost the ability to discern not only this, but the fact that without him working we certainly can’t afford them.
This longest winter of my life involves three surgeries at the hospital downtown — an hour’s drive from our home in off-times with no traffic. We make multiple local ER visits, and Paul has a brief admission after falling and cracking his head on a concrete curb. His neurosurgeon has dismissed him, asking abruptly, but not unkindly, where he would like to receive palliative care. Paul looks to me for the answer, only partly comprehending this question.
In the midst of this chaos, I try to keep track of the kids: their marks and school attendance, extra-curricular events, and activities with their friends. I feel defeated, and often call my mother, sobbing to her than I can’t carry on. I also discover that unneeded hot showers disguise tears.
By the time spring finally comes, Paul has developed an unsteady gait and a decided lean to the left…
By the time spring finally comes, Paul has developed an unsteady gait and a decided lean to the left. I’ve grown linebacker shoulders helping him up from the bed and his chair, and then holding him upright when he walks. Diapers are now a necessity.
Mealtimes are torturously slow as I encourage each mouthful of food, and then wait while he hoards it in his mouth before swallowing. Unbelievably, the kids still invite their friends over for meals sometimes, apparently unembarrassed by their father’s strange half-vacant stare, and his difficulty with eating. I try to ask them how they’re doing but they seldom want to talk. I think I’ve laid out the facts pretty plainly over the course of their father’s illness, but it’s not until they ask me one evening if their dad is for sure going to die, that I realize my words haven’t sunken in. Or maybe I just didn’t state things as clearly as I thought I did.
By mid-summer cancer has reduced my husband to a physical and intellectual shadow of the intelligent, sports-playing person he once was. Death is nipping at his heels and there’s nothing to do but wait.
Terrible headaches assault Paul around the clock, and I have to wake up at night to medicate him and put cold compresses on his head. When he’s not in pain at night, he hums and pats his chest for hours, creating a hollow, drumming-drone, and I want to hold my pillow over his face until he stops. How can you love someone and want to do this to them at the same time?
Our parents take turns coming to our house to stay with him while I go to work part-time. Without this respite I don’t know how I would carry on. As it is, I get so little sleep that I feel like a physical and mental vegetable. I don’t tell anyone, but when I drive to work I often look at a large tree near the road, or an oncoming dump truck, and I think that if I’d just steer myself into it, I wouldn’t have to cope anymore. My kids are all that keep me from doing it. Some days the decision is almost made for me when I catch myself falling asleep at the wheel.
One bright spot in the midst of Paul’s steady decline is my youngest sister’s wedding…
One bright spot in the midst of Paul’s steady decline, which now includes almost-daily seizures, is my youngest sister’s wedding, and I ache to be more involved with her plans. She still lives at home with my parents and I wish I could go there to drink leisurely cups of tea over wedding talk, and hang out on their back porch, pretending I don’t have a care in the world. If I were there, I wouldn’t have to be at home. I wouldn’t have to be the optimist; the pillar of support that everyone seems to be looking to for confirmation that we’re just going through a rough spot. That eventually everything will be all right. I can’t talk to anyone these days without crying.
My village of family and friends is good and supportive, but living with teens whose father is dying isn’t exactly a walk in the park. Scott has his license now and he’s pretty good about taking his sister places, except when he’s not. I try not to think about the reckless speed at which I’ve heard he drives, but at the same time I realize how unmanageable our life out in the country would be if I were the only driver. I really try keeping my mouth shut about it, with limited success.
In mid-August I finally hit the wall. I’m so physically exhausted I don’t think I can stay alive until the end of the day. I’m so emotionally exhausted that I fear I may do my husband harm if I have to provide one more minute of care. Heaving Paul out of his comfortable chair, I start walking him to the door while explaining that we’re going to the hospital. I bawl when I tell him that he’ll stay there and I’ll go home. Those tears, though, are nothing compared to the ones that come when I explain to the doctor that I’m refusing to take my husband home. Paul sits in a wheelchair in the corner of the small examining room, observing the scene through uncomprehending eyes, and guilt impales my heart. He has no idea that our canoe has nearly capsized.
The brief days I have to rest while he’s admitted to hospital are busy…
The brief days I have to rest while he’s admitted to hospital are busy. Plans for a homecare nurse, a hospital bed, and bedside commode are made, and I must be at home to receive the supplies. We also get a temporary wheelchair ramp to the porch and a reclining wheelchair to go with it. Paul can no longer hold his head up much of the time, and the reclining wheelchair we’re given will make him more comfortable when he’s not in bed. Although I’m so physically and emotionally done that I could easily leave my husband at the hospital with a clear conscience, I feel tremendous expectation from medical staff and family to care for him at home, so that’s what I do.
My sister’s wedding plans progress. She’s getting married on September 26, just a few weeks away. There are five girls in my family and she’s asked us four older sisters to co-emcee their wedding reception. This gives me something to look forward to, and I love her for it.
In early September I’m at work when my mother calls. She and dad are staying with Paul and she tells me he’s breathing funny. From what she describes, I’m sure it’s Cheyne-Stokes respiration, an end of life occurrence I’m familiar with from my job at the hospital. I come home right away and call Paul’s family. I tell them I have no crystal ball, but I think it would be a good idea to come and say their goodbyes.
It turns out that death will wait awhile longer …
It turns out that death, which had seemed so imminent, will wait awhile longer, lingering nearby while we watch Paul slip closer and closer to it. I no longer go to work. The homecare nurse has taught me how to set up an IV and give medications. I also learn to suction him. I give him a bed bath morning and night, and change the linens often. I like that my mother has given me some masculine dark-striped sheets. It makes the hospital bed look a little less institutional. One of Paul’s eyes won’t close completely, so I put in artificial tears, and do mouth care because he’s mouth breathing a lot.
The hospital bed is in our large family room, quite near a big patio door. Even if he can’t look at the beauty of our country lot, I can enjoy the view and the sunshine while I work. I’ve set up my single bed nearby, on call through his still restless nights.
Scott and Beth try to carry on with their regular routines, but it’s hard for me to tell how they’re feeling and they don’t share much. One afternoon we’re at their dad’s bedside together. Paul’s best sport was baseball and he passed on his love for the game to Scott, teaching him to be quite a good pitcher. Although his eyes are closed and it doesn’t appear that he even knows we’re there, Scott places a baseball into his dad’s hand, closing his fingers around it. To our surprise, Paul raises his hand and using his fingers to move the ball, he places them first in one pitching position and then another: knuckle ball, slider, curve ball, the ball perfectly gripped, just as he once taught Scott to do. It feels like our own little miracle.
Death is now so close we can almost touch it, and a certain peace falls on our house. Our canoe is arriving, at last, in the calm waters of a bay, and there is something right about this. Days take on a kind of rhythm: personal care, nurse’s visit, family and friends dropping in. On one hand, I just want to be alone, savoring this less turbulent time, but I know I must share what is left of Paul with others who love him too.
One thing I’m looking forward to, along with Scott and Beth, is my sister’s wedding. A dear nurse friend from work has kindly said she’ll spend the wedding day with Paul. It’s still early in the cell phone era, but I track one down and I’ll keep it in my purse or beside my plate at the reception in case she needs me if . . . but we never finish that sentence.
Scott and Beth are both in the wedding and I’m pleased and thankful that they have something so grown-up and exciting to look forward to. Scott’s a big guy – over six feet tall now – but he’s still only seventeen. Beth is nearly fifteen and a petite little thing. They are preparing to go to the wedding rehearsal and ask me if Dad’s going to be okay while they’re gone. With tears in my eyes and voice I tell them I can’t predict what will happen, but I assure them that they have my complete blessing to go, and I expect them to have a good time. Afterward they’ll attend the rehearsal dinner and then spend the night away. The bridesmaids are all staying at my parents’ house, and the guys are going to a hotel. I won’t see them again until the next day when they’re at the front of the church, dressed in their wedding finery.
And I have my own party to look forward to. Because one of my sisters lives several hours away in the States, we haven’t been able to finalize plans for our co-emcee jobs at the wedding reception. My sisters are bringing dinner, and I’m so looking forward to being with them.
We eat our meal and do our planning at a table near Paul’s bed. He’s lying peacefully, and I wonder if he enjoys hearing their familiar voices and our laughter nearby. We have a really good time together and it’s very late before the girls decide to leave. They ask what I have to do before I can go to bed, and I tell them that Paul needs some medication, and I always bathe him before tucking him in for the night. I’m quite unprepared when they say they want to help.
I look back on this evening as a time of humble sacrifice on their part. Although the sister getting married is a nurse, none of the rest of us are, and so they have no previous experience doing something as intimate as bathing another adult. I bring a bowl of warm water and fresh washcloths, and we start. The lights are dim and soft music plays as we wash first his face, then upper body, arms and legs. This is the first time they’ve seen him so exposed, and his wasted body and limbs must be a bit of a shock.
My next to youngest sister wonders if he’d like a massage and I can only imagine that in whatever dimension Paul’s mind is in these days, a massage by loving and gentle hands will be a good thing. With scented lotion we massage him all over, and then they slip out with hugs and soft goodbyes.
I tidy the room and get myself ready for bed, and then I hear the unmistakable Cheyne-Stokes breathing again. In only a few minutes the periods of apnea lengthen and I know there’s no time to call anyone.
Sitting at the piano, which is near the foot of Paul’s bed, I begin playing softly while listening over the music for his breath to resume after each period of silence. Before long there is none. Tears slip down my cheeks as I finish playing the song that has become a favourite of mine.
Sunset and evening star
And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea.
I go to Paul’s bedside and pick up a stethoscope from the table there. Placing it to his chest I hear nothing but a deep well of silence. Lowering the head of his bed I close his eyes and his mouth, gazing for a long minute at his face, gaunt from illness, but so very peaceful now. My canoe is safely tied to the dock.
So this is what it feels like to have your husband die, I think to myself, acutely aware of the comfortable silence, and a sense of relief that has enveloped me. I stay with him for a while, reluctant to awaken anyone else at this hour. His parents. My parents The kids. But it must be done, and so I go to the phone and start making calls.
About the author
Phyllis is a writer who has completed both basic and advanced writing courses and numerous writing workshops. Her short stories have been accepted for publication in books, newspapers, and the Word Weaver, a publication of the Writers’ Community of Durham Region.
Her stories and poetry are also included in books, such as Anthology: From a Cottage Porch, Twelve Stories High, a publication of the Canadian Authors Association, and If This House Could Talk: A History of Henry House.
She is a member of the Professional Writers Association of Canada, and the Writers Community of Durham Region. For more information about Phyllis and her work, visit her blog: Phyllis Writes Words