PASSWORDS OF A DYING MAN
by Celia Chandler
“Jack, can you make a list of your passwords for me please?” I know I’ll need this list. I don’t know exactly when. Jack has metastatic lung cancer, and two months ago he was given two to four months to live.
“Ok, later,” he replies weakly, smiling at me and patting the hospital bed beside him. “Come, let’s watch something together.” He reaches for the remote. Jack loves this basement, even today, as it stands in for a hospital room. For Jack, right now, lying down and hanging out at home are the priorities. For me, too.
He flips on “Merlin,” the show that’s captured his attention these days. He’s on Season 4 of 5, and I think he wants to be sure he finishes it. Jack’s always loved shows designed for kids, or even better, action adventures starring “The Dammy,” his pet name for Jean Claude Van Damme.
“More ‘Merlin’?” I love teasing him. Gentle ribbing is a hallmark of our relationship.
Normally, he says, “Sometimes it’s nice not to think.” Not this time though. He doesn’t understand what I’m asking or he’s saving his energy for something else.
We’ve always confused the Netflix algorithm, interspersing Jack’s frothy pieces with European crime dramas and Australian comedies we’ve enjoyed together. Jack’s not up to those now. The cancer has spread to his spinal fluid and brain. So tonight, it’s “Merlin.”
I crawl on the bed and wedge myself in the space between Jack and the bar. I’ve put a double-topper on the single mattress, positioned so Jack can be more comfortable, and me too, when he feels like cuddling. I asked if I should order a single-sized topper. “No, I won’t need this long,” he replied.
I put my phone and notebook on the bar, ready to record the next medical appointment or read a text from a well-wisher. My phone and notebook are my lifelines. At the beginning, I kept notes about each medical visit, documenting Jack’s vital signs and meds, clinic info, treatment plans, side effects, and doctors’ names, all in uncharacteristically neat script. Flip forward a few pages and the notebook tracks the details of caterers, photographers, decor, locations, and music options for our wedding reception. These notes are more free-flowing, often illegible, reflecting my less stressed mood. Oh, how we celebrated the successful end of treatment, Jack’s 65th birthday, and my 50th on that October day two years ago. One page lists things we received from guests who couldn’t resist marking the occasion with gifts, rather than following our suggestion to donate to the cancer hospital. The notebook, the photos, and those gifts are the tangible evidence of the event, but we’ve often laughed about the fun we had.
There are no notebook entries for 18 months. Our focus shifted then to living as a married couple, not quite free from the specter of cancer but relieved of its daily reminders.
I know, however, what I find if I turn back about 40 pages from today. Back then, Jack felt poorly, was starting to experience swallowing and speaking challenges, was off balance. I was back to recording medical information: new treatment, new doctors at the brain clinic, speech pathologists, ENTs, and then palliative carers. Mixed in were more positive things—notes about Jack’s daughter’s wedding reception five weeks ago. We held it at our house. I catered so Jack could be present. These pages, like those related to our own reception, are messy, showing my enthusiasm for the task, not the sterile tight writing of medical entries.
Next in the notebook are the details documenting the current revolving door of home visits: daily nurses, massage therapists, podiatrists, medical equipment deliveries, MAiD assessor/providers, and the funeral director: a new set of shared priorities.
Our priorities, though, have started to diverge. If he dies with medical assistance, as he’s said he’d like to, it has to be soon-ish. His mental capacity is diminishing and with it, any hope for MAiD. Canada’s Medical Assistance in Dying legislation requires a patient to consent immediately before the injection. With MAiD hopes dwindling, and despite Jack’s strong wish to die at home, I’ve decided Jack will be safer in a hospice. Entries from a few days ago document my solo visit to three possible locations.
I both hate and love the thought of not being responsible for Jack 24/7. I feel lighter knowing if he moves to a hospice, there’s an end in sight to my anxiety about some unknown medical emergency for which I’m ill prepared. But the guilt is intense too. I feel I am failing him and failing as a caregiver.
Being on a wait list for hospice care has kicked us up the priority list for home care. Instead of the inconsequential seven hours of personal support worker (PSW) care each week, now we have 56 hours. I’ve scheduled overnight shifts so I can go upstairs to our bed to sleep rather than catnapping on the chair beside Jack or spying on him from my bed with a baby monitor. I hate that monitor—it makes me feel like I’m intruding on his most private time, even though I’ve slept beside him for seven years experiencing that intimacy firsthand. Being monitored by a machine is such an infantilization—even the name. For him, the alternative is no better; he hates the PSWs sitting beside him all night, just as I would, but one of the painful parts of watching my partner slowly die is taking over his decision making.
“There’s another one coming?” he’d asked me last night as I was getting ready for her at 11, just hanging on so I could go upstairs for respite.
“Yeah, Jack, remember we talked about it? We’re lucky our system provides you with all these great women who keep you safe while you sleep.” They’re all women, mostly immigrants. I’m ashamed they get paid so poorly doing what I can’t do myself. “I agree it kinda sucks but it’s best. You know how crabby I get when I don’t sleep!” It has amused him throughout our relationship how precious sleep is to me and how much easier I am to deal with when I get enough of it.
“Hey, watch with me.” He pulls me close and I settle in to see what King Arthur is up to, trying to transport myself to Camelot and away from heavy thoughts.
The distraction is short-lived because, frankly, the show isn’t very interesting. I’m reminded of our conversation that morning.
“Let’s go somewhere,” Jack had said, with an unusual level of urgency.
“Where shall we go?” I had tried not to betray the excitement I felt about escaping these walls together. I couldn’t remember the last time Jack had shown interest in going outside. He’d even stopped asking to go to the Polish consulate to pick up his new passport. Up until a month ago, it was a preoccupation of his, just in case he would feel well enough for one last trip to see his mom, son, and others in Wroclaw. I had known for a while that wasn’t going to happen. So instead of standing in line at the consulate, our most recent outing was to a park where I’d pushed the wheelchair across the grass to get to a bench in the sun, nearly flipping him out on the rough terrain, and we’d laughed about my driving skills.
“Let’s go to the pet store.” His eyes brightened. He had one of his madcap ideas that had so often derailed my careful plans but also enriched my life tenfold.
“The pet store?” This made no sense. We have two dogs and a cat and all the toys, food, litter, poop bags, and other accoutrements we needed. “Why?”
“To get a kitten,” he responded, “to help the cat become friends with the dogs.”
“You have got to be fucking kidding me, Jack! Do you really think I need something more to occupy me right now?” I immediately regretted the outburst but I was flabbergasted. Worrying about the relations between the dogs, who occupy the main floor and the basement, and the cat who separates herself from the fray on the second floor, is really at the bottom of my very long list of concerns. Surely that should be clear to him.
He’d looked hurt. I tried to backpedal.
“Going out is a great idea, Jack. I just don’t think I can handle the extra responsibility of a kitten right now. How about we drive out to the Caledon Hills to see some fall color?” I tried to erase my explosion with a bright tone.
“I don’t want to,” he said, his enthusiasm extinguished.
We were silent for a moment, typical of any married couple after a spat. Then I heard the gentle, even breathing of sleep. I went upstairs to get him a smoothie and his morning meds, feeling shitty about the exchange, wishing I’d done better.
Now, down here again this evening, I feel Jack stirring beside me, reaching for his water. The water bottle beside the bed is nearly empty and I pull myself up to get a fresh one. “Do you want anything from upstairs? Some soup, perhaps?” I ask.
I strain to hear his reply: “Not hungry.”
It’s so hard to get him to eat anything now but I decide to bring him a cup of pickle soup anyway. I’m more likely to get him interested if it’s something Polish, something familiar.
My cooking skills are on hold for now, so as I boil the kettle for a soup packet, I reflect on the last time we went for a walk. I’d pushed him to the corner store on a beautiful day, warm, with the precious light of fall that must sustain us through the winter months. I knew one day I’d see that kind of warmth and light again, but Jack would not. I don’t know if he thought these things. It’s just another of the many thoughts I can’t help but have about my solo future, thoughts I’m cheated out of sharing with my person. I hate this.
In the store, Jack bought two lottery tickets for that night’s draw. He asked me to put them in my pocket as I wheeled him out to the street. I marveled first at the optimism, but then considered these tickets were not his dream but his dream for me and his adult kids. We walked around the block. He got out of the wheelchair when we got back into our yard and made his way to the basement door, listing badly to the left and using the tiki torches I’ve placed strategically on the garden path. I held my breath.
Please don’t fall. I don’t have the strength to pick you up, was my mental mantra. He crawled onto the bed, asleep in seconds, the 30-minute trip depleting his energy for the next few hours.
When he awoke, he said, “Give me those tickets. I’ll check them later.”
“Hang on, I’ll get them.” I ran upstairs and rifled my pockets. Nothing. I did a slower check: poop bag, dirty Kleenex, old ATM receipt, lint. No tickets. Damn.
“I’m sorry, Jack, I don’t seem to have them,” I said as I came back to the basement.
“But I bought them,” he said forcefully. “How could you lose them?”
I was surprised at his anger and felt the weight of disappointing him. He was asking so little of me these days.
Several more times this week he’s asked for the lottery tickets. Each time I’ve been reminded of his failing memory and that his priorities are no longer rational. My self-flagellation has surely surpassed his disappointment about their loss.
I’m back downstairs and see the credits rolling on the episode.
“Jack, I brought you a little snack. Your favorite—pickle soup!”
I set it on his table beside the note I’ve taped there: “Friday, Nov 7, 2018.” It’s my daily way of helping him track time. I see him look at it often. I’m grateful for anything I can do to help him stay connected to reality.
“I’ll eat it later,” he replies. He smiles at me, grabs my hand, closes his eyes, and puckers his lips. “Buzi, buzi.”
My Polish is limited but useful here so I happily oblige him with a kiss. The illness has eclipsed our sexual relationship but our physical affection for one another has thankfully remained strong.
“Want to watch some more?” I ask.
“Need a smoke,” he replies as he pushes himself off the bed and walks unsteadily to his desk a few steps away. I reach for the pack I hide behind the bar, part of our ritual now as I’ve taken over control. I put two du Maurier on the desk. He installs himself in his chair and simultaneously fires up Facebook and a cigarette. I stay close just in case. I don’t trust he’ll smoke safely.
A few minutes pass and I hear Polish coming from his computer speakers. A few more minutes and I hear Jack mutter, “Pieprzony idiota.” Here’s another bit of Polish I know. Politicians fall into two categories: they are either fucking idiots or fucking brilliant. Jack’s an all or nothing person. Cancer hasn’t changed this.
I start to clear out my voicemail messages on my phone. One from a nurse—delete, one from the care coordinator—delete, one from a colleague —delete. End of messages.
“Jack, I don’t have it anymore. I don’t have that message of you saying, ‘I love you’.” I feel teary as I say it. I’ve kept it for a long time. He has said it all the time to me in person but rarely on a voicemail and I’ve always felt comforted to know it was there. How did it get deleted?
He looks up from his computer blankly. He doesn’t understand what I mean. He turns back to Facebook and Polish politics. I tear up. My Jack-less future hits me hardest over the littlest things. Get a grip, I tell myself. He’ll say it again. And if he doesn’t, I will always have my memories.
I look up a few minutes later as Jack struggles to stand and walk from his computer to the bathroom in the other corner of the basement. It’s a slow and deliberate trip and makes me anxious since he’s fallen twice before. I watch him silently from my vantage point on my chair, breath held, knowing he will refuse help and will be angry if I suggest the walker or worse, the commode chair, both sitting unused. Woohoo! He makes it safely this time.
“You OK in there?” I ask. He’s been in the bathroom a few minutes now and I’m concerned he may need me, but know he’d struggle to ask.
“Fine,” is the response. Although his voice is compromised from the illness, I hear the tone which clearly communicates Don’t bug me, I don’t need you.
He emerges a few minutes later and lurches back to the bed. Just those few steps weaken him; he’s immediately asleep.
I sit beside him in my chair, afraid of napping, knowing I have much to do. I look around. There are unfinished projects in the house, although the year has been a flurry of activity. Jack has made sure I’ve got new windows, a new roof, a redone basement, a new fridge on order, and a new garage all done with the fervor of an expectant father who must get things organized for his big life change. But in this case, he’s setting things up for me to manage this house. A few times in the last months he has been taking care of some household matter—turning the outside water on or changing a fuse—and he’s called me over.
“Celia-mia, you need to know how to do this.”
“Oh, Jack, I don’t know if I can manage all this,” I’d reply, and grab some paper. In the spring, I’d written, “Close valve, turn tap on, let it drain, go outside, turn tap on.” Or something like that. I don’t remember now, but I’ve pinned the scrap to the wall by the tap and I hope it makes sense in the spring.
Ordering the fridge has been a serious priority for Jack. Having met him when he fixed mine and living the last seven years with one that leaks Freon, it seems fitting his last gift to me will be a replacement.
“Do you want an ice maker and a water dispenser?” he has asked me several times.
“Jack, I’ll be one person. Just a simple fridge is fine. Nothing fancy,” I replied, laughing each time. It’s a running joke between us that I say I can live simply until I have something lavish which I then embrace fully when he gives it to me.
“I’ve ordered you one,” he announced proudly a few days ago. He showed it to me on the computer. It’s enormous! And it has a water dispenser.
I laughed. “You’re likely right, Jack. I’ll likely host parties again and have that thing packed.”
It will come Monday. I’ve put the delivery into my calendar and hope it arrives between the palliative care doctor appointment at 11 and the speech pathologist at 1:30 or before the nurse comes to give his injection which is sometime around 4:30 or 5. So much traffic every day.
I’m grateful for the things Jack has done in the house but I’m scared of those that remain incomplete, principal among them, the wiring. Jack intended to upgrade the garage to 220 amp service so he could work from there and then rewire the house. A month ago, as a first step, he had a 30 foot aluminum pole erected beside the garage. I know it won’t be used but it’s money well spent for Jack to feel alive and useful still. We knew the electrical in the house needed replacing when we moved in. Jack could do this work himself but he put it off. I look at the power panel over the bar, open now, with wires hanging askew from some half-done project.
“Is it safe?” I’ve asked Jack.
“Of course, so long as you don’t put those wires together,” he’s replied, annoyed. “I wouldn’t leave it unsafe. I used to be the safety officer in the mine where I worked.” He always says this to my great amusement. Jack seems about as unsafe as anyone can be. But I’ve learned to have faith in his seeming recklessness. He has never let me get hurt yet. I’ve shelved the anxiety about the wiring for now. I have more imminent concerns.
Despite best intentions, I’ve nodded off but awaken to Jack stirring. He looks confused, staring intently at the floor beside the bed.
“You OK, Jack?” Looks of confusion have been increasing over the past few days and alarm me because with a loss of capacity comes the loss of the chance to exercise his choice for a medically assisted death. He may live a very uncomfortable last few days or weeks and die a difficult death.
“Can you see that?” he asks, looking with a laser focus at the floor between us.
Now I’m confused. “What Jack? What do you see?”
“Gold bars, right there, on the floor.” He’s pointing down, his hand steady.
“No, I don’t see anything, Jack. I think you may be hallucinating.”
“Really? Let’s see if I can show you.”
He stares down, intent on sharing his apparition. His need to conjure it for me is sweet and heartbreaking. I suppress the urge to weep. Weeping irritates Jack.
“No, I guess I can’t make it so you can see it,” he finally says, disappointed but resigned again to the tangible world.
Changing the subject, he says, “Can you pass me my phone?”
“Sure!” I’m relieved to be doing something useful and that he’s back to reality. I reach for it on the bar and pass it to him. “Who are you calling?” I ask. He often checks in with kids or colleagues, even if he can speak only a few words.
“You’ll see.” He grins mischievously and fumbles to make the phone work but finally succeeds. Good, I think to myself. His last few attempts to use the phone ended with him frustrated and blaming the technology, heartbreaking to watch.
He dials, waits, and a moment later, he says into the phone, “I love you,” barely audible, but I hear it.
He’s grinning at me when he hangs up. I kiss him.
“Thank you. I love you too.”
I’ll worry about the passwords later.
Celia Chandler lives in Toronto where she spent Covid exploring her love for writing, so much so she quit lawyering. Her writing has appeared in rabble.ca where she won a Canadian Online Publishing Award for her series on her husband’s medically assisted death. Celia has been shortlisted three consecutive times at the Wild Atlantic Writers Awards contests and has a piece coming out in March in Ariel Chart International Literary Journal. Read her blog about grief, medically assisted death, pets, and life here.
Photo: Kate O’Connor, Sweetheart Empire
Celia Chandler lives in Toronto where she spent Covid exploring her love for writing, so much so she quit lawyering. Her writing has appeared in rabble.ca where she won a Canadian Online Publishing Award for her series on her husband’s medically assisted death. Celia has been shortlisted three consecutive times to the Wild Atlantic Writers Awards contests and has a piece coming out in March in Ariel Chart International Literary Journal. Read her blog about grief, medically assisted death, pets, and life here.
Kate O’Connor, Sweetheart Empire