MAID minus 10 - a day in the life of a caregiver/wife
November 9, 2018
I roll over and see the clock - 6:07 - and then the baby monitor. A shadowy shape moves an arm out from the covers, then a leg, then sits up. I waste no time, pull my housecoat on, and head down two flights of stairs careful not to tumble - I can’t be laid up. I’m weary from six hours sleep interrupted by every shift and groan of my husband in his hospital bed two floors down.
“Good morning, Jack,” I say brightly, masking my disappointment to be up so early. Jack has always been an erratic sleeper but it’s worse now. His days are spent moving from the bed to his smoking room with an occasional detour to the toilet. His sleep is near-constant and at the same time, not at all. I watch him toss and turn all day from my bedside chair where I co-ordinate in-home appointments with the palliative nurse practitioner, doctor, nurse, occupational therapist, speech pathologist, massage therapist, podiatrist, and funeral director; plan how best to use the seven precious hours of personal support worker (PSW) care each week; organize meds; prepare a stream of smoothies, jello, yogurt, juice, water, Ensure, soup, and anything else Jack might feel like; email and call the scores of people who care about us both; schedule visits from the handful Jack feels like seeing; and plot ways to escape from the physical and emotional confines of my situation.
No wonder I’m fucking tired.
Jack looks up from his computer where he’s scrolling through Facebook anxiously awaiting his first cigarette of the day. He grins and says “buzi, buzi,” Polish for “gimme a kiss.” He puckers up and closes his eyes. And raises two fingers.
How can I be annoyed with someone who still greets me so lovingly? I smile back and lean in for a quick peck. For a moment I elevate from caregiver to wife, a role I long to stay in.
“Paola’s coming by this morning,” I say as I hand him two DuMaurier. I’ve stopped letting him manage the smokes. His cognition is failing and I’m worried about him setting the house aflame. He hates this new level of dependence. He flicks two lighters before he finds one that works and then takes the first drag. Even as his form has wasted and his mind is less agile, that smoke in his right hand nearly brings him back to the man I met nine years ago when he fixed my fridge. He turns back to the computer. His body absorbs nicotine like a parched plant draws water, but I don’t know how much Polish news his brain absorbs now that it is full of metastatic cancer.
“How’s banana and mango in your smoothie this morning,” I ask, as I mount the stairs to the kitchen. He says nothing. He likely didn’t hear me, but maybe he just couldn’t muster the energy to answer.
Instead I hear him say, “Only shit!” He’s doubtless reacting to some fascist-like activity of the Polish government. Through our relationship, Jack’s wanted me to correct his English, a role I’ve taken on happily. I suppress the automatic, “Holy shit, Jack.” It seems pointless now.
When I return, I start the morning routine - force the meds in and then watch the smoothie go down by mini-sips over hours. At each one, I hold my breath anticipating the choking Jack’s learned to deal with but I haven’t.
Three hours later, there’s a tap at the basement door. People closest to us know we can’t hear the front doorbell - Jack hasn’t been out of the basement in a couple of weeks and I use the main floor only to make smoothies, cry, and as a thoroughfare back to bed. Opening the door to Paola creates a cloud of steam outside. All the electric heaters are on high to help Jack fend off the bone-coldness he feels, as his body slowly shuts down.
“Thanks for coming,” I say, ushering her in and putting on my coat at the same time. “I need to leave so I make my 10 a.m. appointment.”
“No problem. Happy to help. Does he know?” she asks. Paola has known Jack two decades longer than I have, having been his assistant at his appliance repair business. Even though he gave up the physical shop 10 months ago, she continues to answer calls and book appointments for him, so long as he remembers to put the phones on forward each morning. These days, she’s diverted the few services calls there are to Tony, a friend also in the business. Jack still wants to feel he has a hand in Accord Appliance, and he thinks Paola is here this morning to go through some papers. But she’s not.
Jack has only a few priorities right now - sleeping, smoking, preserving the right to a medically assisted death, and staying at home. He’s let go a bunch of other things - showering, brushing his teeth, eating enough to live, and staying hydrated. I’ve straddled the line between wife and caregiver to the best of my ability, honouring, as his wife, his wishes but also trying, as his caregiver, to keep him healthy and presentable. It’s an odd tension - why am I pushing a man to eat and drink when he’s signed the application for MAID ? If he maintains the necessary mental capacity, he’s eligible to die, when he chooses to. As his wife, I’m tempted to stop bugging him about nutrition as I have about personal hygiene. As his caregiver, I can’t let him die on my watch.
Today, though, wife is trumped by caregiver. Paola’s staying with Jack while I look at hospices, contrary to Jack’s explicit wishes. My heart breaks at the idea of him leaving our house. Yet as caregiver, I am dying a slow death with him. My hospice-hunting guilt is allayed by knowing I have the support of his four adult children. The two who live locally know Jack’s needs are exceeding my abilities and he will be safer with professional care. We did our documents three years ago when he received his lung cancer diagnosis. It’s horrifying I’m now invoking the power of attorney for personal care and about to be the executor.
“I told him, Paola, but I don’t think he really understood. Don’t mention it. No need to freak him out about having to move. Maybe Tony will drop by and the three of you can have some laughs.” Jack’s frequently told me of their workplace shenanigans. They are his best friends, other than me. “I’ll be home by noon so I can give the midday meds and be ready for the nurse at 1.”
“Take your time, Celia. You need the break and we’ll be fine,” Paola says as she takes cigarettes out of her pocket. “Jack, let’s have a smoke.” I give him a quick kiss, and leave knowing Jack’s in her capable hands. She’s nursed her parents to their deaths. She knows what it’s about.
—-
“Hi Anne,” reading her name plate, “I’m Celia Chandler. I’ve got a 10 a.m. appointment for a tour. My husband, Jack, is dying of cancer.” My voice breaks. I’m at the reception desk of Hospice #1. It’s a 20 minute drive from our house. The whole way, I’ve contemplated how this might soon be my regular commute. It’s a teary trip, full of self-doubt. Putting those words out there to the receptionist is painful but important. I need to be able to admit he’s dying.
Anne smoothly exits from behind her glass partition saying, “Celia, I’m sorry you’re here, but I know this is going to be just the perfect place for Jack.” She takes my arm and propels me across the lobby to a well-appointed waiting area. “Bruno, one of our volunteers, will be here in a moment and he’ll give you a tour. Would you like some juice while you wait?”
I decline. I sit, torn between wanting this ordeal over and wanting to stay away from the house as long as possible with Paola in charge. The internal fight between relief and guilt exhausts me anew. I imagine if Jack were here in this soothing place full-time with someone else to give the Heimlich if needed. I could just be the wife. I never imagined this would be so hard. I never imagined this at all.
“You must be Celia.” Bruno approaches, arm outstretched for something- handshake or hug. I can tell he would accept both. I go for the handshake.
“Thank you for seeing me,” I reply. He sits and we speak in hushed tones for a few minutes. He’s sympathetic - he knows; his wife died here of cancer a few years ago.
“Shall we tour?” Bruno asks me. “I know you will love this place.”
We walk side-by-side down a broad corridor, doors shut to private rooms along the way. We stop at an open one. “Here is a vacant room. I love the view from here,” Bruno says. Sun shines weakly on a few yellow leaves still on the maple trees dotting the ravine through the south-facing window.
“Beautiful,” I say. And I mean it. I see the space reserved for the ‘loved one’ to sleep and think how I’d need to find time get new pyjamas.
“Jack would like a medically assisted death. Do you allow it?” I ask nervously. I haven’t even gotten to the smoking question. Let’s go with MAID. Hospice care and MAID are not compatible for some, I’m told. A philosophical disconnect that makes no sense to me. This is Jack’s legal right yet places like this can have policies against.
Bruno smiles stiffly, “we haven’t made a policy decision about it yet. But we would arrange transportation to wherever Jack would like to die.”
What the hell. Ok I’ll ask the other question. “Jack’s a smoker. Where could he do that?”
“Our patients enjoy the outside over there.” He points to a distant gazebo.
“Do the staff take them there if they need to smoke?”
“No, but you or other family would be welcome to wheel him out.” Bruno replies evenly. He stops short of saying “that’s a fucking disgusting habit and why would you allow it?” I feel the judgment nonetheless.
We walk back towards the lobby, looking at the bathing room with the hydraulic lift to lower patients into the tub and the kitchen for storing family food. All lovely. But no MAID and inconvenient smoking.
___
I’m outside Hospice #2. It’s a 1970s bungalow just off Yonge Street north of the city. I knock on the door and am met by a middle aged woman. “I have an appointment for a viewing.”
“Of course. The nurse will be right with you,” she says as she gestures towards the living room and disappears down the hallway. I sit on an aging sofa. Newsworld’s playing on a flatscreen and the coffee table is equipped with magazines and a Sudoku book. I could wear my existing night attire here.
“Celia,” the nurse says as she comes into the living room from the kitchen. She’s brushing crumbs from her mouth. I’ve interrupted her but I can tell she is used to that. It’s a working house and everyone does everything.
She shows me around the small place - three beds only which I like. MAID is not possible here either. But yes, this carport off the kitchen is perfect for smokers. No judgment. And yes, I can bring the dogs to visit. I know old Jack would have preferred these people and the atmosphere. Sick Jack? I don’t know. Nothing pleases him now and frankly I don’t blame him.
___
One more stop. I drive down Bathurst Street to Hospice #3, a floor within a hospital. It wins points because it’s closest to home but otherwise I’m not very confident. I park and enter the huge lobby. The elevator is at the far end. I rise to the 12th floor. It’s clean and bright but institutional. Jack would hate this. I do the tour as planned but know I will not be back. (no MAID here either.)
I walk to the parking lot crying. The only possible option here is #2 and with so few beds the chance of a quick admission is slim. Whatever weight has lifted in these two hours descends again as I drive back home. I use the drive to make phone calls. Being in the car and walking the dogs are the times I get to catch people up on life for Jack and me right now. Everyone is encouraging but no-one can say anything that helps. This is a solo journey. The person I’ve relied on for emotional support is gone although his body still lives.
The weight gets heaviest as I approach the basement of my house. I open the door and hear laughter. Paola and Tony are being as normal as possible. Jack is dozing in bed. There is nothing normal about this. I brace myself for the conversation I will have when they leave. I will present Hospice #2 like a parent sells liver and onions to an 8 year old. “You’re going to love it, Jack,” and we will both know I am lying.
—-
AFTERWARD: Jack never moved to a hospice. By being on a wait-list for #1 and #2 (hedging my bets), he became entitled to a whopping 56 hours of PSW care each week which allowed me to better balance the roles of wife and caregiver. I even found time to find the loveliest pair of pyjamas, just in case. Six days after I went hospice-hunting, Jack decided to schedule his death. Four days after that, surrounded by his closest people, he died. If you’d like to read my series about MAID and Jack’s death, follow this link.
