Being my mom's medical proxy was heartbreaking, but I'd do it all over again

CBC

2 days ago

This First Person article is the experience of Lynn Paulin, who was born and raised in P.E.I. For more information about CBC's First Person stories, please see the FAQ.
On Aug. 22, 2024, I received a text message from my mom. She had decided to go to the emergency room. The back pain she had been dealing with for the past month had become unbearable.
I offered to make the 40-minute drive to the hospital to sit with her. She told me not to make the trip over what she suspected was nothing more than a pulled muscle.
Not wanting to impose, I respected her wishes and stayed home.
I wish I hadn't.
Mom walked into the hospital that night thinking it was a minor injury and walked out the next morning with a diagnosis of Stage 4 metastatic lung cancer that had spread to her spine and crushed one of her vertebrae.
For an entire month, she had been walking around with a broken back.
We barely had time for this news to sink in before phones started ringing from doctors' offices and hospitals informing us of next steps.
Attending medical appointments with Mom was not a new occurrence.
I had been accompanying her regularly since she was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) 18 months earlier.
IPF is defined by the Canadian Lung Association as a chronic lung disease that causes irreversible scarring or "fibrosis" of the lung tissue. As the scarring worsens, the lungs stiffen up and breathing becomes more difficult.
Prior to her diagnosis, I had never heard of IPF. I spent a lot of time researching the disease, hoping to gain a better understanding of what we were up against. Of all the things I learned, the most intriguing one came directly from Mom herself. Thirty-one years prior, in December 1993, her mom passed from the same disease.
The average life expectancy for someone with IPF is three to five years from diagnosis in the absence of a lung transplant.
We knew where things were heading for my mom. The cancer just expedited the inevitable.
Early September saw us spending more time inside the hospital. The frequency of appointments increased while Mom's stamina and vitality waned. Multiple times a week, I found myself standing with my arms crossed, peppering doctors with questions, mimicking a level of concern I learned from years of watching her do the same for her own children.
My brother and I were Mom's whole world. This was reflected in the anxious body language she tried her best to hide whenever something ailed us.
She always kept her arms crossed while talking to doctors. It wasn't until I was older that I realized why she did it. She was hiding her shaking hands. Even in her most vulnerable moments, she was being strong for us.
Most of us expect to care for our parents at some point. I just didn't expect to do it in my 30s. Not for Mom anyway.
My dad has long suffered from a myriad of pre-existing and self-inflicted health conditions. There was always an unspoken awareness that something bad could happen sooner rather than later. It never crossed my mind to think Mom would be sooner.
By Sept. 22, 2024, almost two weeks had passed since mom had eaten or drunk more than a couple of sips of a protein shake. She could no longer walk and was asleep more than she was awake.
I told her it was time to go to the hospital. She was too weak to protest. I assisted her to the car and, for the first time, really felt the weight of how frail she had become.
While waiting to be admitted, Mom said something that instantly made me break into a cold sweat.
"There are birds flying around the room. Can you see them?" she asked.
I dug through the giant folder of pamphlets and info sheets given to us by her doctor until I found what I was looking for: a medical directive.
A medical directive allows the patient to assign someone else to make decisions regarding their care.
While we waited for the doctor, we spoke about her wishes. We agreed that Dad's love for her, combined with his predisposition for rash decision-making, may not be the best fit in this situation. We didn't want to add any additional strain on my younger brother, whose first child was due in early December. So, the honour naturally fell to me.
I signed the form, knowing it would eventually be relevant, but thinking I had time to prepare.
I didn't.
On Sept. 25, I received a call from the hospital informing me that my mom was declining and I needed to get there as soon as possible. The same 40-minute drive I opted not to make barely a month prior became the most critical trip of my life. On the way to the hospital, I stopped to pick up my mom's niece for extra support.
My brother, his heavily pregnant partner, and my dad arrived soon after.
Mom was in a small isolation room transitioning between moments of deep sleep and partial lucidity.
She knew who we were and why we were there, but not much else.
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I learned that due to Mom's delirium, all decisions about her care would be deferred to me.
The doctor asked what kind of life-saving measures should be taken into consideration if her heart stopped or she could no longer breathe independently.
The child in me wanted to scream, "That's my mom, do whatever you have to do to save her!" But it's because I was her child that I knew that's not what she would want.
I was faced with the most important decision of my life, and the only person whose advice I wanted couldn't help.
Ultimately, I decided the treatment should be to keep her comfortable. In the early morning hours of the next day, with just the two of us in the room, the woman who watched me take my first breath took her last. She was 62.
She was light, love and selflessness personified. She spent decades going above and beyond for those around her and never asking anything in return.
When I was 16, hundreds of dollars and all her spare time for weeks were spent on sewing me a dress from scratch, only for me to break up with my boyfriend two weeks before prom. Instead of being furious when I told her I would no longer need the dress she had worked so hard on, she hugged me and asked if I was OK. That's just who she was.
That's why I didn't hesitate to step in when she was the one in need of care. Without my knowing, she had been preparing me for this my whole life. Serving was the blueprint for how she showed unconditional love and understanding. Her influence built the foundation on which I live my life.
I wanted to make sure she spent her final weeks enshrouded in the same warmth she so freely gave to others.
Though the final chapter of her life's story has ended, her legacy endures as long as I carry the best parts of her within me.