The Journey into Palliative Care

For many people, the term Palliative Care, breeds an image about a gloomy place where people go to dieWhile Palliative Care does aim to assist individuals who are going through the dying process; there is much more involved in the process than death and gloom.

Following is the first entry of a series on Palliative Care.  I will begin by sharing my background with Palliative Care, some stories about my Mom’s journey with Pancreatic Cancer, and in the end, I hope to give you a better sense of this often misunderstood journey.

My experience in Palliative care began over five years ago when my own mother was losing her battle with Pancreatic Cancer.  Despite her children’s pleas to have her stay with us, her wish was to spend her remaining days in a Hospice- Elisabeth Bruyere in Ottawa.  Even as I type these words I am brought back to a time that is encapsulated in my memory as being somber, melancholy yet somehow special.

In the first few days at the hospice, I felt terrible about my Mom having to share a room with another person.  I thought to myself, how unjust it was for such a private person to have to spend her final days with only a curtain separating her from a stranger in the next bed.  Thankfully, my brother was able to pay for a private room when one became available and it was at this time that the true journey of her palliative care started.  I call it a journey because to me that’s what it’s like.  Your loved one is going on a trip alone, and no matter how much you want to, you cannot go with them.  You have to wait your turn to take that same passage.  As a family you enter what for most of us are unknown territory; dealing with impending death.  The time leading up to death is as unique as the individual experiencing it and it can take a few days, weeks or months. 

In late August of 2007, my mother was moved to her private room.  We added a few personal items - pictures of family, cards from well wishers, religious artifacts and drawings from her grandchildren to brighten up the beaten up looking room.  At first, Mom was able to have a complete conversation with her visitors.  She was animated as she entertained visitors who took time from their day to visit her.  Even my father, who had been divorced from my mother for over eight years, came to her bedside to support her.  These first few weeks seemed odd because, other than taking her medication, including pain pills every few hours, it seemed like she was healthy.  We took Mom on outings to the nearby market place via wheelchair, we ate at The Keg (the garlic mashed potatoes were her favorite) and we watched TV and movies with her in her room.  My younger brother and sister both devoted themselves to visiting when they could and each, in their own way, spent special moments with her.

As the ugly disease began to take over, my mother had difficulty swallowing, a common problem for palliative care patients.  As her food intake decreased, so did her weight. Her energy diminished and soon our little trips outside were no longer possible.  I spent the last two months of her life sleeping in her hospice room four nights a week.   I would sleep on the cot in the corner of her room marking my student’s papers or preparing for a University exam.  The other three nights I spent back in Toronto with my devoted, understanding husband and children.  The pace by which I traveled back and forth between the two cities was dizzying and certainly physically draining.  I shared a lot of my experiences with my students at the time, and as a result I think I excelled as a teacher during this time.   As I look back on it now I wonder how I was physically able to do all of this.  Strange things happen to people when their loved one is dying, call it inner strength or the human spirit or love; whatever it was, it gave me the energy to keep moving like an energizer bunny.

The days with Mom became increasingly challenging.  Her pain was increasing, her moods swinging, her buttocks getting sore, and her independence was decreasing.  During this difficult time, I relied heavily on the palliative care team to guide and support me.  This they did with such grace and respect that it was at this time in my life that I decided that one day, I would steer my nursing career towards providing care in Palliative Care.  I didn’t know in what capacity, but I knew that somehow I had found the niche I was looking for.

Into December, Mom was now a mere shell of the vibrant woman she once was.  Her eyes and skin were discolored with jaundice caused by the disease and her medications changed often as the team tried a variety of “medicinal cocktails” hoping to find the one that would best alleviate her symptoms.  Her three children stood by, watching her whittle away.  The feeling of uselessness washed over our tired souls.  My sister, who was pregnant at the time, had already begun to mourn the fact that Mom would never get to know her unborn granddaughter.  My brother, strong, stoic and always a strong supporter of our mother, felt frozen at his inability to make it better.  Meanwhile, I kicked into the caregiver mode and didn’t really start the grieving process until after she had passed away.

In the time I spent with Mom, we reminisced about our trips together, good family times, memorable holidays, pets, events and birthdays.  This was a special time for me and I feel so fortunate to have spent this time with her. 

The staff captured the true essence of life and the need to preserve one’s dignity despite their physical limitations.  The time I spent with Mom, who herself was a nurse, and the Palliative staff caused me to review some of my own spirituality as well as my future career goals.

(In the next entry I will explain in more detail what Palliative Care is and how those who live and work in that environment cope with the good times and bad.)