In the fog of a dying parent

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by Susan Prosser on November 3, 2009

Dear Fellow Community Members,

It is my turn to write a letter to you requesting your participation in this column and blog.  We are hoping to offer a service to the community by engaging in discussion about relationships and how to better understand them and thus improve them.  The vision is to create a forum for discussion where we all share our ideas and concerns about our kids, partners, parents, friends, colleagues and so on.  I have information, ideas and experience to draw on and so do you.  I have received a few letters on my blog and I get all excited when this happens, so keep them coming.

This week I thought I would share with you an experience of my own that underlines the importance of clear and careful communication.  Two weeks ago my aging mother was transferred to a nursing home after spending the summer in hospital.  She hated it there because she still had all of her faculties while most others did not.  Last week she suffered a massive stroke and we were told by two doctors she would most likely die in a few days.

Even though my background is nursing and I have a strong personality, I became lost in a fog of confusion about what was happening to her and my father, what to expect, what the nurses were thinking and doing and what palliative care meant.

I have discovered that palliative care means something different to everyone.  The result of not communicating its meaning to a grieving family is rather devastating.  You start out a little on the tender side and by the time you try to wade through all the miscommunications you end up exhausted and vulnerable.

Each nurse seemed to have a different idea about my mother’s care.  Our entire family had gathered over the weekend to be with her as she made her way to the other side of life.  Some of the nurses would leave us alone, some would offer support and others were adversarial. I was still in my fog and it hadn’t occurred to me that her each nurse had a different idea about how my mother should be cared for.  One would tell us that she was to have nothing by mouth and the next would say give her ice chips and the next would say that ice chips could choke her.  One would assure us that she would be kept pain free and the next would complain about giving her pain medication.

It was when one nurse came in and said “your mother is doing great this morning!” that the light bulb went on.  How could a dying woman be doing great?  Maybe she wasn’t dying?  Maybe the nurses wanted to rehabilitate her?  Were we wrong in believing that it was better for her to die than live her days in a vegetative state in the nursing home?

Long story short, it became clear that we were being misunderstood and judged and the tension in the air was unbearable.  I cannot begin to tell you how the judgment and miscommunication made our pain so much worse.  My 90-year-old father was already devastated by my mother’s condition and this tension was unbearable for him.

All of this is to say that we have great power as humans to change another person’s internal sense of well being.  A small kindness, a smile, a word of encouragement or a few minutes of your time can brighten another person’s world whereas a slight, a judgment or any act of anger of unkindness can cause harm in ways you might never know about.

In the health care system we need to support one another so that we can be strong enough to be effective advocates for our loved ones.  Once I got out of my fog I started to ask questions and then began to advocate for my mother.  I did so in a respectful, kind and firm way and yet things grew worse.  Some nurses became less kind and one wouldn’t even speak with us!  (This is an Ontario hospital by the way.)

So, at a time when we needed compassion and support we received the opposite.  We suffered more because of that.  We remained strong but we were relieved to have her return to the nursing home where we have been understood and treated with great kindness.  It makes the world of difference.