I always thought that if something awful happened in my life, I’d keep a diary of notes and thoughts and feelings to guide me through. But as it turns out, when shit hits the fan, there’s little time to do anything except hurl yourself into the awful chaos.
My mother has had Crohn’s Disease for over 30 years. Having exhausted all her options, she opted for an ileostomy surgery on January 18. Pretty routine stuff — most people recover within 7-10 days. But by the time we rounded on our fourth week in the hospital, we weren’t sure of anything anymore. Mom was scared, I was scared. Everyone was scared.
Mom’s surgery was in Grand Falls-Windsor, in Central Newfoundland, about four hours from where I live. I stayed with some friends I’d only ever talked to on Facebook, and spent day and night at the hospital with Mom. She developed pneumonia. Her ileostomy wasn’t working properly. I held trays for her while she vomited bile. I guided her on walks. (Once, I tripped her with her walker by accident, and nearly sent her headlong into a wall. I can’t ever shake that image.) My tiny 95-pound mother kept bouncing back, and at one point, I went back to St. John’s for a little break. Mom seemed to be doing well.
When she asked me to come back, I did. That was on Valentine’s Day. Two days later I awoke to my cell phone flooded with missed calls from Central Health. I had turned off my ringer hoping for a good night’s sleep, because I had left her in good health the night before. My legs went to jelly when I called the doctor back and she told me that Mom’s oxygen dropped so low, she needed my permission to intubate her and put her on life support. I couldn’t reach my Dad because he was on his way from Bay d’Espoir, having received a similar call earlier in the morning. (Being from rural Newfoundland, Dad doesn’t even have a cell phone.) So I stepped in as next of kin and told them to do what they had to do.
The ICU is a scary place. When I arrived, the young resident doctor took me aside and told me what had happened, and I cried and asked to see her. There are few things you should go through alone in your life, and that’s one of them. Mom was completely unconscious at that point. I slept in the leather armchair next to the bed. Or, rather, I stayed awake all night listening to the oxygen being pumped into Mom’s lungs, and to the beeps and dings and alarms that go off every two minutes from all corners of the giant room.
But she recovered from that, too. Just a few days later, Mom was sitting up in bed, scrawling messages on a clipboard. “What happened?” And we talked about it, and things were ok. The doctor told us she’d be getting out in a few weeks.
A few days after that, I noticed Mom was confused. She couldn’t stay awake. Me and my aunt tried to feed her, but she kept falling back into bed. She’d reach for things that weren’t there. She could hardly respond to me. I knew when I left that evening when something was wrong — and it wasn’t a surprise when the nurse called me back into the hospital at 7am.
It was entirely a surprise, however, when another doctor took me aside and told me Mom had three organ failures: her lungs, her kidneys, and her bowels. “She’s a very sick woman today,” he said. I remember the way he said it. Hushed, and serious, and warning. I relayed the message to my family, and soon Mom’s brothers and sisters started making their way from Ontario.
I don’t really know how I (or anyone) got through those days that followed. I was in a daze. It felt like someone was sitting on my chest, smothering me. I was drowning. I wanted medication to knock me out so I could sleep through it all. I didn’t sleep, or eat. I spent every moment I could sitting next to Mom’s bed. One evening, I sat and talked to her for hours about everything I ever wanted to say. My best friend, Joanne, told me to do that because she did when her mother was dying and it helped. I promised Mom a grandchild if she woke up. I ended up promising her three as the days ticked on.
The only comfort I clung to was knowing that we had spent the previous six weeks together, talking about everything imaginable under the sun. You know how you have all those regrets about how you treated your mom or dad or brother or sister? I had the chance to erase those in the weeks that Mom was sick, but still lucid.
Mom’s kidney function never returned, and the dialysis doctor refused treatment because it would be too hard on her. Now, this is where things get dicey. I’m unsure if Mom would ever even want me writing about this, but here I am. The doctor told us we should say our goodbyes. She’s only 65 but her body has been through hell and she’s suffered enough. They’d give it one more day, to see if her kidney function would return, but the toxins in her blood were building up and things were bad. Real bad.
But there was one small caveat: a slower dialysis treatment was available in St. John’s. The doctor said it kind of like a side note, like, oh, there’s this other idea but it’s probably not going to work. Or at least that’s what it sounded like to me. By that time, I was too far gone to really absorb anything.
The dialysis doctor left us on that note. My uncle held me while I cried. We all cried. Everything. Was. Hell.
That night, I went home with Dad. We had a few beers and talked. We’ve talked a lot. I’ve learned a lot about my family in these past 10 weeks. I said, “I don’t know what we should do.” Dad said, “What would your mother want?” And the answer was easy. She’d want to fight for her life.
At that same time, my aunts and my uncle were with Mom at the ICU. Someone touched her foot, and Mom opened her eyes, and she looked at them. And they thought, “Oh, she’s still in there. She’s still there.”
The next morning, back at the hospital, one of the internal doctors walked into the family room and started talking about options. I said, “We want to move her to St. John’s.” I didn’t even know I had made that decision until just then (and of course, it wasn’t just my decision to make). The doctor said, “Oh, okay then!” Like it was nothing. Like, oh, that makes perfect sense. Later, I saw Mom’s surgeon. I asked, “Are we putting her in harm’s way by sending her to St. John’s?” He said, “No, she’s stable. If anything were going to happen, it’d happen anyway.” Mom’s ICU nurse agreed. “If it were my mother, I would want her to be in St. John’s.”
St. John’s would have to agree to treat her. And there’d have to be beds in the ICU. We sat several tense hours in that waiting room, holding our breaths. And then Mom’s nurse came. “We got the call you’ve been waiting for,” he said. “They’ll take her.”
Someone clapped and there was a collective “OH!” in the room.
Within a few hours, the Medivac team had moved in and started preparing her for her flight to St. John’s. I lingered in the room for a bit, making the team aware of my presence. I just felt like they should know me; they should know that she has a young daughter and a young son who need their mother very much. They carefully explained everything they were doing. I said, “Please take good care of my mother.” They said, “We will.”
My uncles and my aunt drove with me to St. John’s that night. It was four hours of pure torturous misery, wondering what was going to happen. It was inconceivable to me that somewhere nearby Mom was being bundled onto a gurney with a full medical team and being airlifted to St. John’s. She hasn’t been on a flight since before I was born. It started snowing and the roads were slippery and we were all stressed out, and scared, and worried. And then we made it.
If I thought the ICU in Grand Falls-Windsor was intimidating, the set-up in St. John’s is on a whole different level. Mom had her own nurse watching over her 24/7, and all around us were people just as sick or sicker than Mom. It was 11PM by the time we showed up, but the nurses guided me into the ICU and showed me to Mom. There she was! Safe and sound. None the wiser.
Mom started her dialysis treatment the next day. And, by the way, it was a normal dialysis treatment — like the one Mom was refused in Grand Falls-Windsor. She did perfectly fine, even after three treatments.
One night, me and Dad walked into the ICU, and the nurse casually mentioned the bag full of pee attached to Mom’s catheter. I’ll never forget that moment. The shock on mine and Dad’s faces — who knew anyone could be so excited about pee? (Mom’s going to kill me for this. I’m sorry, Mom.)
It’s been 10 weeks and Mom is now on a regular ward, still recovering, but recovering nonetheless. She’s very delicate. So far, they’ve managed to slow down her ostomy output, and her kidneys are working fine. Her oxygen levels are fine too. But she has weeks and weeks ahead of her of gathering her strength, learning how to walk, and learning how to deal with this new life, and the trauma of what came before her. I’d like to think she’s out of the woods, but seeing as how I’ve been through this four other times since January, I don’t ever want to get my hopes up again.
All my projects have been put on hold. I’m fortunate that my job allows me to work from anywhere — including bedside with Mom. But trying to juggle Mom’s health and making ends meet has taken a serious toll on my own health, and I find myself with almost no time for personal care. I’m not complaining; just explaining why it’s been so quiet around here. I am exhausted. My hair is turning grey. My skin hurts. My boyfriend’s away at military training for six months, and I can’t talk to him.
I meant to write this piece titled “What I learned about people when my mother was sick,” because it’s been a great lesson in appreciation and kindness. The outpouring of support over the past two months has been amazing. I’ve had piles of food show up on my doorstep, free rides from taxi drivers, and donations. I still want to write that story, but it’s been incredibly therapeutic just to sit here this past hour at 2AM and recount all that’s happened.
I’ve always been blessed with a loving, supportive family — but I don’t think I realized how lucky I am until this whole ordeal. I would have been lost without my aunts and uncles and father and brother during all of this. And if they hadn’t been around when I needed them the most, I’m not sure where Mom would have ended up.
The same goes for my friends, near and far. I’ll write more on that later.
If you know a nurse, please give them a hug/high five for me.
People are incredible beings. Mom is one of them.