Our Experience with Palliative Care

I'm writing this page because I was not prepared. Real serious illness and death look nothing like movies and TV shows. We all know it's coming for us (and our loved ones) at some point, yet we are mostly oblivious until it's right in our face. My brothers and sisters and I were making big decisions about our mother's care with no experience and sometimes little understanding.

When mom was diagnosed with cancer she was already very ill, though we didn't know exactly how bad it was. I pushed to get her admitted into the hospital. "You see how much pain she's in," I said to her doctor, "this is a woman who had 7 children with no painkillers. That tells you how bad this is." Despite the fact that beds were seriously scarce, her doctor got her admitted to the hospital in Corner Brook. Within a few days mom had a surgical procedure meant to help with some of her symptoms, while we waited to find out about an appointment for a PET scan in St. John's to get the full prognosis.

Symptom Management

The hospital wanted to release mom - and she wanted to get the hell out of the hospital, but her symptoms were incredibly difficult to manage. Pain was the biggest problem, but it wasn't the only one, she was having serious anxiety problems and sensory sensitivity. The drugs she was on at that point were not sufficient and that needed to be fixed before we would consider it safe for her to be discharged.

Mom has never liked asking for help and she wasn't used to taking much in the way of medication - she only asked for the painkillers once she was in pain, which was about 45 minutes too late, that's how long they took to kick in and get it back under control. There was always one of us with her, day or night, and we kept an eye on her to see when things might be about to get out of control. One symptom getting out of control could cause a domino effect, at times it took up to 6 hours to get her settled. Mom was coming to stay with me when she was released and I wanted to be prepared. So, I pushed again, letting staff know that the status quo wasn't working.

Dr. Desiree Dunn

Enter the Palliative Care Team (PCT). I had thought that palliative care was strictly for end-of-life, but no - they're the experts in pain management, symptom management. Dr. Dunn arrived in mom's room with two other members of her team. Mom was not up for conversation at the time, she gave us permission to discuss her case, curled up and went to sleep.

The PCT just got it. They took their time, they listened and they knew what to do. I burst into tears with relief - the first real time I had cried since mom had been diagnosed; I had been holding back, not wanting to scare her. They returned the next day, wanting to chat with mom when she was awake and alert. I had told Dr. Dunn mom was a huge Bluejays fan, so she made mom comfortable by starting off their conversation with stories of going to Bluejays games when she was growing up in Toronto. Dr. Dunn understood how much mom hated taking tons of large pills and she made changes tailored to mom's needs and wants.

At Home

We were able to bring mom home, well, to my home. She lived in Stephenville and I live in Corner Brook, but she was thrilled to not be in hospital anymore.

While we were provided with an old-fashioned hospital bed in my spare room, it turned out that the daybed in my living room had the more comfortable mattress...though it lacked sidebars.

We stayed in regular contact with the PCT. Every so often we'd have to increase mom's painkillers and we continued to keep shifts so mom was never alone.

St. John's

Having to travel to St. John's for a PET scan was definitely not something we were happy about and it was a brutal trip for mom. It took a lot of extra painkillers to get through the road ambulance trip that day and she felt it for days after. My understanding is that the new hospital is supposed to have a PET machine and I've seen quite clearly why people have been fighting for this.

My sisters and I had an airBNB in St. John's, a downtown ground floor apartment which ensured mom would not have to climb steps. Mom's medical testing was now with Eastern Health; despite this, the Western Health PCT were still our lifeline, ensuring continuity of symptom management and working with a local pharmacist...and it was necessary. Mom's condition steadily deteriorated and we got the devastating prognosis: the cancer had spread and was terminal.

It was utterly disorienting. Mom was struggling to do anything and was in no shape to be weighing up options and deciding what to do next, it was down to us girls.

Mom could not make the trip back by road ambulance, the ride out was awful and her condition was now significantly worse. The oncologist said she could put in for an air ambulance, but that it could take up to a week, during which time mom would have to be an in-patient. I didn't want mom to go back into the hospital, she hated it there. At first we just stayed at the airBNB, trying to figure out how we might take care of her ourselves.

The Downward Spiral

Mom's condition spiralled and we realized she had far less time than originally thought. Mom's ability to walk faded quickly, within days of her prognosis, and we knew we were not going to be able to manage. I spoke with the PCT and they provided us with options. My sisters and I quickly made the decision to go with the air ambulance. Dr. Dunn had a room waiting for mom at the new Palliative Care Unit (PCU) in Corner Brook, while the oncologist in St. John's admitted mom as an in-patient and arranged the air ambulance. At this point we got our one small break in all the miserable crap: within an hour of mom being admitted to hospital, there was an air ambulance scheduled ready to take her home, to the West coast.

The nurses got mom ready to fly and she got plenty of meds to make it through the trip. While mom and I were brought to the airport in a road ambulance, my sisters started their long, overnight drive across Newfoundland. The air ambulance crew took care of mom and I was able to sit next to her while she was on a stretcher. Like most people who are terminally ill, mom was very much afraid to be alone - we always made sure family was with her, 24/7, and that she could see us.

Thank fuck we're in Canada, was what went through my head. I couldn't imagine going through this in a place where the patient has to foot the bill. The medical staff told me that they had fought to ensure terminal patients going home were a priority. In the past they were given end-of-life care where they were, not flown across the province so they might die at home, surrounded by their family. We are most grateful they fought for patients like my mom.

Back Home, not on The Prairie

Despite not wanting mom to be in hospital, palliative care was the best place for her; me and my siblings had reached the limits of what we could manage. Fortunately, the PCU was a dramatic improvement compared to the hospital ward mom had been on.

Our medical system has been steadily starved of resources for decades and we had seen it up-close-and-personal. By contrast, the PCU is luxury. It's part of the new hospital, that hasn't opened yet. The rooms are large, to accommodate everyone who wants to say goodbye - though I think our huge family pushed the limits some days. It was kitted out with a private and accessible bathroom, mini-fridge, flat-screen TV and internet. There was an air purifier, to keep away the unpleasant smells you usually get in a hospital room. It's built for the comfort of both patients and family; it allows them to eat something other than hospital food, get some work done in quiet hours - and stream comfort TV. Mom's picks were a mixture of Little House on the Prairie and Trailer Park Boys; strangely, the Prairie was a far more depressing show.

There's a communal area with a kitchen, a garden and a children's play area...spots to take a breather when being in the room gets overwhelming.

They let you decorate the room any way you want. We went to town on it. We hung mom's dreamcatcher, every surface was covered in framed photos and photo albums, flowers, dolls and stuffies. There's plenty of furniture in the rooms, including a cot, so we were able to ensure she was never alone...without busting our backs sleeping in a chair.

Arriving at the PCU was a huge relief, if only the rest of our medical system functioned this well. The staff were amazing, they did such a great job of taking care of mom. We were able to stop being her carers and go back to being her kids.

The staff noticed even the slightest wince and adjusted mom's meds as her needs changed. They did everything possible to make her comfortable. Mom hated swallowing pills and they switched her to an injectable skin patch, which was also quickly necessary as mom became non-verbal and kept her eyes closed. It seemed like she was sleeping all the time, but it was a different state, one no one can really tell you much about because no one comes back from it. Occasionally mom would snore, the most comforting snore in the world - at least she was getting some rest.

Dr. Dunn came into mom's room one morning and went straight over to her. Despite mom being completely unresponsive, Dunn sat down and had a chat with mom...or to mom. The staff all told us to assume that mom could hear everything around her. It was lovely. She was still a person and she was still being treated like a person.

There was no eating or drinking. We didn't know that's what happens. Again, we spend our whole lives avoiding knowing the details of what's going to happen in the end. People stop eating or drinking when they're dying - and they aren't given given food or water artificially. Apparently, it doesn't do any good, it can even be very uncomfortable, possibly painful even. It was disturbing though, watching our already tiny mother shrink by the day.

The PCT has many different people in different roles. One of them was a spiritual health person. When she found out mom was a member of Qalipu she offered to arrange a smudging. Sherry (White) Dean graciously performed the ceremony we knew would provide mom with some comfort and Sherry had a grand chat with her.

I'm convinced mom could hear us - and not just because my family's games of yahtzee are so fucking loud they could probably wake the dead. Yes, they played games in the room, mom was quite keen on games even if she couldn't join in.

At night there was normally only one of us that stayed with her. Throughout mom's illness I had taken to sleeping with one ear open and so I would pop up when the nurse would come in and chat with mom as she was given her meds. On that last night the little bugger actually woke me up. Mom had to have known I was in the room, otherwise there was no point. She made the smallest of noises, she couldn't speak, and I could tell her breathing had deteriorated considerably. I rang for the nurse and he arrived quickly, confirming what I had thought: it was time. I sat on one side of her and held her hand and he sat on the other side of her, holding her other hand. I wanted to talk to her, but I just couldn't get anything out. The nurse chatted with her through it, talking about her family and the room decorations, just letting her know we were there.