Waking each morning to a mixture of sadness, guilt, and a strange sense of being in limbo, similar to the feeling I had last year when Dad was dying. Through that emotional miasma, humour rises to the surface, the humour that’s possibly the greatest gift my parents bestowed. I text my sister. “Mom never could keep anything short and sweet. It always had to be a long, drawn-out story.” She texts back laughing emojis.
Mom went into the hospital over four weeks ago now. She sounded confused and was slurring her words. We thought she was having a stroke. She wasn’t, as it turned out. What she had was a massive staphylococcus infection that had targeted her spine. An MRI revealed multiple abscesses. The infection had quite possibly raged in her body for months. The doctor said staph infections often go undetected. She had complained of back pain the week before, but said she had pulled a muscle.
The infection was causing confusion, and as it turned out, it was going to get far worse.
All relationships have some level of complexity, but I’m fairly certain the mother/daughter relationship is up there in the top three. My mother and I couldn’t be more different. She likes soap operas, vacations to casinos, and a Scotch at five in the evening. She never liked travelling alone, dropped out of school in grade eleven, married her high school sweetheart when she was eighteen, and stayed in the same Toronto neighbourhood all her life.
I like science fiction, hitch-hiking, and beer. I loathe casinos. I travelled alone to the U.K., Australia, Hawaii, and all over the continental U.S. and Canada. I had lots of boyfriends. I eventually got a Master’s degree and married late. I’ve lived in a log cabin in the northern wilderness and in various cities.
I didn’t understand her, and she feared constantly for my safety.
We always had a rocky relationship. Despite what I now know were her best efforts, our interactions usually left me feeling like I had done or said something wrong. I swear, if aliens had swooped down from the sky and chopped off a hunk of my hair for a souvenir, she would have told me that if I’d tied it up like she told me to, it wouldn’t have happened. My mom was a great one for “I told you so”. Despite all the things she told me so about, she had a lot of difficulty talking about the things that really mattered to me, and had no language for emotions.
When I was nine or ten, a friend secreted me away in her room with one of her father’s medical books, and told me in a hushed and serious tone that we’d start bleeding soon, “from our front parts”. It sounded outrageous to me. We bleed from our vaginas? No way! I was sure my friend was making it up. I asked Mom. She seemed offended and annoyed. “Well, I was hoping to have that conversation with you myself, when the time came!!” The following conversation was tense, uncomfortable, and left me with so many questions. We didn’t have the internet back then. She bought a book for my sister and me. “Your Changing Body”. And that was that.
After I left home to go to university, she sent me newspaper articles that she thought “might interest me” and sometimes comics. She once sent me a “Cathy” comic from the daily newspaper. It followed the day-to-day anxieties of a young, single, working woman – Cathy – and it was rarely funny to me. In the comic my Mom sent me, Cathy’s mother was saying, to Cathy’s mortification, “If you rinse your panties each night, those little stains will wash out more easily.” See what I mean? Not funny. The fact that my mother chose to send me that one felt like a message. She must have seen my laundry during a visit home, and my underwear just wasn’t clean enough I guess.
The underwear in the picture above is clean, thank goodness. Because it took an unplanned journey.
The first day I visited her in the hospital, she was raving incessantly about the “wrong medication”. I tried to get her to eat. She kept pushing the food away. “It’s the wrong medication! Why won’t anyone listen to me?!!” She was angry, glaring at me, her lips drawn into a tight, thin line, her icy blue eyes nearly vibrating with the effort of that furious stare. I was shocked to feel childhood trauma re-surface. This was a look I knew well, but I hadn’t seen it in a very long time. I’d almost forgotten it. Almost. It didn’t have the power to frighten me anymore, even though I half expected her to reach out and smack me, but it upset me nonetheless.
The doctor told us the infection had caused delirium, that this was quite common, especially in the elderly. Those nightly shots of Scotch hadn’t helped matters. She’d become septic, and the infection was using up the oxygen in the blood. The brain, starved for oxygen, was like a canoe bobbing about in a stormy harbour. Whatever it ran into, it jammed up against for a while. She’d fixate on something, and just keep repeating herself over and over and over, for hours. Trying to respond or break the obsessive thought pattern was impossible. “Don’t interrupt me!” she’d snap. And she’d continue with the story she’d told us fifty times already, about how she’d finally figured out that it was the wrong medication. The harder we tried to change the subject, the louder she got with her repetitions. She always had been stubborn, and now that obstinate side of her seemed magnified out of all proportion.
Mom’s condo has a rule that you can’t hang laundry on the balcony to dry. I guess draping shower towels over chairs doesn’t count, because she did that often enough, but I had a little elasticized camping clothesline and wanted to string it up and hang a couple of shirts on it one day. Nope. Not allowed. The rule seemed stupid to me, one of those snobby rules that forces people to waste energy using electric dryers.
The next time I went in to see her, she’d forgotten about the “wrong medication”, but had a new story about being left in an uncomfortable position for half the night and no nurses would come. Well, that one I could believe. She wasn’t comfortable. She was in a lot of pain, and maybe it wasn’t half the night, maybe it was only half an hour, but discomfort distorts time. Two physio specialists came in to get her moving. As sick as she was, not moving for long periods of time would result in eventual immobility and longer rehab. She screamed with pain as they helped her to move her body. I wanted to tell them to just leave her alone, that she wasn’t ready yet. But I’ve been conditioned to think doctors know what they’re doing. I let it happen. For the next two days, all she could repeat over and over and over again was how no one had told her she would be having physio (never mind that she wouldn’t have understood or remembered if they had told her) and how could they expect someone in her condition, after being left on the floor all night, (now it was the floor) to do physio, and how could her own daughters have let them do that to her, and on, and on. This wasn’t conversation directed at me. These words were spoken to the air in front of her, with a glazed look in her eyes.
Me, with a spoonful of soup. “Mom, can you eat a bit? You need to eat something.”
“And her own mother was on the floor, her own mother, and no one is listening.”
“Let’s try some soup, Mom. It’s minestrone, I think. You like minestrone.”
“And you’d think, you’d think that in a hospital – hospital- hospital – you’d think that in a hospital, someone would tell you what’s going on.”
“Mom, we understand. It was hard. But you did it. You did fine. Here, how about some juice. Put this straw between your lips.”
“And her own mother was on the floor. On the floor. All night.”
And so it would go, setting her lips in a tight line, refusing the food, insistent on telling this endless story that kept growing more horrible with each iteration. She constantly asked for ice cold water. We gave it to her.
The lack of nutrition was making the delirium worse. A CAT Scan revealed no Alzheimer’s, no dementia, and an eventual MRI revealed the infection had not targeted the brain – there were no abscesses there. I brought in fudge, ice cream, things she loved to eat. I did get a little fudge in her the first day I brought it in, but not the next. Ditto with the ice cream, but I kept trying.
My sister did the next day’s visit, giving me a much-needed break to do some cleaning and grocery shopping. I prefer to wash items nightly by hand and just leave them to dry until morning. I don’t have enough for a load anyway. I strung my little clothesline low on the balcony, so no one could see it from the street, pegged my underwear to it, and went to bed.
The following day, she had physio again. This time, there was no screaming. She seemed better physically, but she was talking incessantly, nonsense about the royal family mostly. She was drinking lots, but retaining urine. They were talking about inserting a catheter, fearing a urinary tract infection on top of the staph infection. They manipulated her into the wheelchair and once again I walked beside her as she wheeled herself down the hallway. She refused to wheel herself back.
“You can’t make me,” she said, and folded her hands in her lap primly.
“No, Mom, I can’t make you. No one can make you. You have to do it to stay mobile. If you don’t do this, you might not be able to move when you leave the hospital.”
She glared at me. “Three words!” she snapped.
(Huh?) “What does that mean? C’mon, get wheelin’!”
“Three words!”
“Let’s see you make it back to the room, and I’ll get you some ice cream.”
“You already know I can so I don’t have to.”
I looked around. A nurse she had shown a liking for was standing a few metres away. “Well, I know you can, but Johnny doesn’t know you can. He needs to see you do it.”
Johnny helpfully picked up on this and called out cheerfully, “That’s right, Lois, I need to see you do it.”
She sighed heavily, put her hands back on the wheels and wheeled herself back to the room. “Three words,” she growled again.
I texted my sister. She keeps saying “three words”. My sister texted back that she’d been saying that the day before, too. When we got inside the room, I knelt down in front of her. “Mom, what are the three words?”
“You know!”
“No, I don’t. What are they? What are the three words?”
A pause, and then, “You’re a genius!!”
I couldn’t have been more surprised if butterflies had shot out of her mouth. It certainly wasn’t what I’d been expecting. “I’m a genius?”
“It said so! In the paper!! Your name was in the paper. In the headlines. The Queen said so!!!! Don’t you read the paper?!!!
Oooookay. We were in Looneyville again. And so it went. Up and down. Sometimes lucid. More times not. Sometimes angry, really angry, especially at my sister when she visited, when she couldn’t do things Mom was demanding, impossible things to do in a hospital. Most times just ranting about nonsense. The doctor said it could take eight weeks to clear a staph infection, and the mental state might lag behind the physical one in improvement. Great. And all of this through paper masks and face shields and fogging up glasses. When it got to the point where she didn’t know us, we weren’t sure if it was because she couldn’t see our faces clearly.
When I left the hospital that day, the sky was dark to the northwest. I hurried to the subway station. By the time I got to my stop, the rain was torrential, with wind bending the tree tops. I purchased an umbrella in a little shop in the station, and headed down to the bus platform. Her condo is on the twenty-first floor. I remembered the underpants I’d hung out to dry. Well, they wouldn’t be dry now. In fact, they weren’t even there anymore. Gone with the wind. Probably halfway to Lake Ontario. I finally saw the wisdom in not hanging clothes to dry on the balcony. When the wind picks up, it buffets around the little semi-enclosed space and nothing that isn’t tied down or weighs more than ten kilos is safe. I hated to say it, but mother had been right.
On the off chance that the darn things were lying on the ground below, I went out for a quick stroll in the now barely spitting rain. I glanced up into the trees, just in case. No sign of them. I ran into one of Mom’s neighbours, Kathy. I told her the story. She laughed. “Maybe they’re in a tree,” she said, looking up.
“I’ve been looking,” I said. “Maybe they landed on someone else’s balcony.” We both chuckled at that possibility.
The next day was a Saturday. Hospitals, to my surprise, seem to operate as Monday to Friday entities. All regular staff and all services disappear on weekends and holidays. No physio over the weekend. No regular attending physician, just one on-call. No medical imaging, no tests. Without the physio, Mom could do nothing but lie there. She was pretty unresponsive that day, which was actually a relief from the incessant talking, ninety percent of which was repetitive, nonsensical babble. She did come to at one point, and told me that she had travelled back in time, to the beginning of the world, where people had no gender, and all their emotions. It was a rainbow world, apparently. I say she told me, but she really told the air in front of her. I’m not sure she knew who I was, or even that I was there. Then she muttered something about the royal family and drifted off again.
She still wouldn’t eat.
The nurses kept telling us every day that she’d “eaten a little a breakfast” but I wasn’t sure. They don’t spend much time trying to feed a patient, even an elderly and incapacitated one. They’re chronically short-staffed, and all have little computer carts they sit at in the hallway, seemingly having endless online reporting of some kind to do. If the patient refuses food, they try for a few minutes, then give up and leave the food there. My Mom’s fingers were numb and nearly useless. She couldn’t feed herself. She complained to me, at first, when she still had lucid moments, that, “They just put the food there and walk away. I can’t do it!” I’ve seen that happen in nursing homes, so it wasn’t hard to believe. And we’re only allowed one visit a day, for an hour.
My sister took over for a week, one of her precious summer vacation weeks, while I drove the seventeen hours back home and we tried to figure out who would do what and when. During that week, Mom sank into a mostly unconscious state, only rousing now and then to rave about royalty or dinosaurs. There was no more physio. She couldn’t follow instructions. Sometimes she’d cry out angrily, “Stop all the yelling!” when the only person making a sound had been her. She was not eating. They had inserted a catheter and asked us about a feeding tube. Did we want to insert a feeding tube. Did we? Mom had always been clear that she wanted no extraordinary measures at the end of life. Was that extraordinary? Was she at the end of life? She was also clear, both verbally and in her living will document, that if at any point she lost the capacity to make decisions for herself, she wanted nothing to prolong life. Was her loss of decision-making permanent or temporary though? Would the delirium clear up as the antibiotics did their thing and if she had some nutrition?
Faced with what felt like the most difficult decision of our lives, my sister and I talked and texted until we finally decided that a tube inserted through the nose and down the throat to the stomach wasn’t extraordinary, although a surgically implanted one in the stomach or intestines would be. We were told an NG (nasogastric) tube, could stay in for only ten days. Okay. Ten days. If the nutrition didn’t improve her condition, the tube would be removed, and we’d be talking about palliative care.
My sister got a call at two in the morning. Mom had yanked out the tube, demanded to know why they were feeding her water and not food, and told the nurse that she was from England and knew Lady Diana. I told my sister she should have run with that one. “Tell them Earl Spencer was your great-uncle,” I said. “Maybe she’ll get better treatment.” Now they were asking us if we would give approval for restraints so that she couldn’t pull the tube out again. We gave approval, with sincere reservations, pretty sure Mom didn’t want to end her days tied to a bed with a tube in her throat, equally sure that we’d be filled with guilt the rest of ours if we didn’t give this a shot.
I flew back to Toronto, knowing my sister needed a break, knowing I wanted to be there if Mom died. Again, I settled into the condo. The view is incredible. To the west I can see the clear outline of all the downtown towers, including the iconic CN Tower, the lake dominates the southern view, and if I care to look north, on a clear day, of which there are few enough in July, I can see the distant Caledon hills. The space is just as she left it, just as I left it I guess after my first stay, but I didn’t make much of an impression on it. She didn’t know she wasn’t coming back. Teddy bears stare at me from every possible angle. Little stone ones, stuffed ones, posters of them, themed magnets, towels. I suddenly feel sad, and I think about how we just leave all our stuff, all our plans, all our notes about various things. “Window blinds” says one note on the fridge. I think I know what she had in mind with that one.
The condo came with huge, heavy, horizontal, wooden-slatted, floor-to-ceiling blinds that are hauled up and lowered down on what have always seemed to me like ridiculously thin cords for the job. My Dad liked them, and wouldn’t hear of getting easier to use, vertical ones. Mom could barely raise and lower them herself. Even I find them stupidly heavy and cumbersome. After Dad died, she started doing all the things she’d wanted to do. She replaced the computer desk, threw certain things away, moved some furniture around, converted the “tv room” into a spare bedroom for guests, and I think was finally ready to do something about these blinds. Other notes are more cryptic. “Doorbell remote” and “Cindy motorcycle”. No idea.
Mom suddenly had a good day. She woke up when I came in the room, and croaked, “Hi.” I raised the face shield, lowered my mask for a second. “It’s me, Mom. It’s Cindy.” I smiled at her. She smiled back. I couldn’t believe it. Had it worked? Had the feeding tube given her enough nutrition to curb the delirium? The restraints were gone, I noticed. She was worried about her legs. Would she be able to walk again? Was she paralyzed? I assured her she would and she was not. I worked my hands under her hugely swollen knee and helped her bend it, just a little, just enough to raise it off the bed, then down again. “Help me do it, Mom.” She did. “See? Not paralyzed. Just weak. Let’s do this some more. Both sides.” So we did. I was excited. This was a huge breakthrough. She asked about every family member she could think of. Was everyone okay? Everyone was fine. I told her about the tornado in Barrie, but that her niece and family were safe. “Oh, a tornado in Barrie! Really? But Jennifer’s okay?” “Yes, Jennifer’s fine. They’re all fine.” She was sorry for causing so much trouble. “No trouble, Mom.” She was embarrassed to think of the things she’d been saying to the nurses in her delirium. “It’s okay, Mom. Everyone knows you were sick. Forget about it.” She clasped my hand gratefully. Wow, this was normal conversation. I wanted to text my sister, but didn’t want to miss a second of it or turn away from her to use my phone. She asked about family again, then her face crinkled up with grief and she cried, “Oh, Barbara!” She had got it into her head earlier that her older sister had died. “Barbara’s fine, Mom. Why don’t we call her?” I whipped out my phone and found I didn’t have my aunt’s landline number in my contacts. Frantic texts to my cousin and sister. Someone gave me the number. I dialed, afraid any second she’d drift away again. I got my aunt on the phone. After some serious fumbling – she couldn’t understand it was on speaker phone and she didn’t have to hold it up to her ear – they had their first conversation in nearly a month. Mom asked about her favourite ball team first.
“How are the Bluejays doing?”
“They’re doing well! They’re tied 3-3 with the Yankees,” said my aunt.
“Damn Yankees!” said my Mom. A nurse in the hall outside her door, slapped her thighs and laughed. I laughed, too. It was so good to hear her cursing her team’s nemesis again.
Mom then launched into a long, rambling story about something that had happened when she was only a teenager. It was a funny story, and she kept laughing and having trouble finishing it. It started to get repetitive. Yellow warning flags flashed in my brain. She managed to finish the story, and a nurse came in to do something. We had to end the call.
She looked at me and said, “I’m so tired.” And slowly, suddenly, as suddenly as it had come, it all started to unravel. She closed her eyes, became unresponsive. When she opened them again, she was staring at the air in front of her and said, “And they, the physio, no one told me I was having physio, after leaving me on the floor all night long . . . ” She spent the rest of the visit either drifting off or chanting, “I don’t like it.” in a sing-song voice. Still, I was hopeful. It seemed like a baby step in the right direction.
It went downhill from there. She pulled the feeding tube out again the next night. I thought she was still with me the next day when she said, “There was a tornado in Barrie!”, but it was just an echo, followed by:
“Was Jennifer in the RV?”
“No.”
Frustrated flapping of hands, shaking of head. “But were they in the RV?!”
“No, Mom. They were not in the RV.”
Angry now. “But were they IN the RV??!!”
I lean close. “No one was in the RV. They were in the basement.”
Confused look. “But weren’t they in the RV?”
And it went on like that for some time until I could distract her with YouTube highlights of a Bluejays game, which only upset her when she fixated on not being able to see the number of a particular player. I’m glad she got a chance to talk to her sister. I talk to mine, multiple times a day. We share the details of her condition, talk about our next steps, continue to figure out who visits when.
I start thinking about what we’ll do with this condo. Sell it is the most obvious option, but that truly signifies the end of an era. Since the Gordons and the Lalondes and the Longs and the Forths came to Toronto around 1901, someone in our family has always lived here. The Longs came unwillingly, I think, needing treatment for their baby son, my grandfather, at the relatively new Hospital for Sick Children. They weren’t able to keep making the trip back and forth from Uxbridge. Maudie Lalonde, my grandmother, was shanghaied, stolen away from her Brockville home at the age of ten by her older, married sister who put her to work as a babysitter for her own four children. One of the many Forth sons came here from Bracebridge to work for Bell Telephone. We don’t know why Albert Gordon left the family-owned pub in Kent and sailed across the ocean with his pregnant wife, my great-grandmother. That’s over a century of family history in this city, and I feel it deeply in my bones. It’s our last major family asset, and I realize I want to keep it. I want coming to Toronto to be more of an option because I’d have a place to stay. I try not to think “free place to stay” because there’s nothing free about it. The condo fees are around $900 a month, and I’d have to buy out my sister’s half. I can’t figure out a way to do this, so I put it out of my head.
My own back has been sore, partly a result of bending over in awkward position for too long in the vegetable garden before I left, and partly from bending over Mom’s hospital bed. Self-care is important. I book an appointment with a chiropractor referred to me. Yonge and Eglinton is a literal hot mess when I climb up out of the subway. Construction. Noise. Smoky, dusty air. Sidewalks closed on one side. I keep my mask on. The chiropractor turns out to be a leftover from the New Age. His feet barely touch the ground when he walks. I half expect to see his aura. He closes his eyes and holds my ankles to “read” me, sounds a tuning fork over my head, but also does a couple of actual chiropractic adjustments that feel okay, and I have to say, they worked. I’m better the next day.
Once back down in the subway, I hear music that sounds real. Pillars and staircases block the view. It sounds like a saxophone, but not quite. I wander down the platform to the far end. A man with a sign that says, “I’m A Refugee, And This Is My Job Right Now” is playing a sweet, slow jazz version of Frank Sinatra’s “My Way” on a clarinet. He’s way too good for a subway platform. Coincidentally, that was my Dad’s favourite song, the one my Mom played for him at the hospital the day he died. I have five dollars in my purse, and tuck it into his cup. He beams at me sweetly, makes a bow out of a long, low note. I stand there until the last possible minute.
The doctors keep changing. Her original doctor went on leave because his partner had a baby. The doctor the next week didn’t meet with us until the Friday. We only saw his assistant. Then he disappeared and the latest doctor had to have the whole case explained all over again. The nurses, too, seem to change like the weather. Every other day, a whole new staff on that wing, all of them always having to learn what my Mom’s about, some more sympathetic than others to her endless babbling that apparently often gets loud overnight. One nurse said to me one day, in a tone that suggested I should be able to do something about it, “The patient in the next room is complaining because she’s so loud.” I felt so utterly helpless at that moment. What did she want from me? An apology? “I’m sorry my mother is so critically ill that she can’t understand that the person yelling is her.” My helplessness turned to anger, but the nurse was already gone.
I came home from the hospital one day, exhausted as usual, guilt at leaving her there at war with elation at being out of that place for the day, and found a text message from Kathy. It was a panty shot. But the panties were mine. The pair that had blown off the balcony in the storm. What??!! Where??!! I text back. Turns out their mutual acquaintance and elderly neighbour had called Kathy to come over to her unit. She pointed and said, “Look what’s on my balcony.”
I’m still in Toronto. The gentle restraints didn’t last more than a few days. I’m not sure she really knew they were there. The feeding tube comes out tomorrow. The doctors aren’t sure that Mom can remain conscious enough to eat, although she seems to be able to swallow. I’ll keep going in every day, try to coax some food into her, wet her mouth, do whatever she asks, if she actually speaks to me. I’ll rub her feet, talk to her, or just listen to her raving lunacies. This isn’t how she wanted it. It isn’t how any of us want it. How she would laugh if I could tell her about the underpants, and who found them. Then she’d say, “Well, I told you not to hang any laundry on that balcony.” If she could get in one final “I told you so”, I think she might be satisfied.