I am the perfect example of why we should read to our kids. Yesterday, on the way to the book store, something hit me that I’ve known now for years. Decades even. I really love books. I look forward to a trip to the book store the same way I look forward to sitting down with a much loved, much missed old friend. (See? I promised I’d return to usual form soon!)
As a kid, one of the best things my mom or dad could tell me was: “Let’s go to the library today.” That meant an hour or two spent amidst the stacks, breathing in the scents of thoughts and dreams committed to paper, choosing a few or ten to stumble to the checkout desk with, anticipation mingled with impatience to begin.
As a new mom, I could be found Tuesday and Thursday mornings at story-time, sitting on the carpet with the other parents, snuggly baby on my lap, watching with rapt attention as the librarian narrated The Pokey Little Puppy with zest and props. Both my kids learned, starting at six months or so and continuing on up to double digits, about the fantastic worlds that live inside of books.
As a parent of teens, I’ve returned to discovering new worlds of my own while helping my kids find that perfect book, that great adventure or the best pick from a suggested reading list. Yesterday at the book store, my daughter vacillated between One Flew Over the Cuckoo’s Nest and A Separate Peace. I pushed for The Picture of Dorian Gray or Anna Karenina, but my daughter knows what she likes. In this case, she chose the excitement and drama of One Flew Over the Cuckoo’s Nest.
The title doesn't matter. Our tastes and preferences in genre and writing style aren't what counts. The love of reading is the greatest gift my parents gave me. Sitting on that library carpet with my squirmy son, gratified and relieved when a facet of the story would catch his attention or his sister would don a raccoon puppet to illustrate for him A Kissing Hand for Chester Raccoon, my motive was pretty basic. I wasn't thinking of higher literature, or AP English courses, or even of whether my kids would grow up to love reading. I was carrying on a tradition from my own childhood, something I loved, both as a child and as a parent. Who doesn't love a good story?
That phrase, “on the way to the bookstore,” what feelings that evokes in me. I like to think it’s the same for others. On a day to day basis, there are a handful of things that make us smile, things that we look forward to with anticipation and happiness, knowing once we’re immersed, we’ll sink into the experience contentedly, at home. The best parallel I can draw is to that feeling I get when I know I've got a lunch date, or better yet, maybe a concert date, with a close friend. Much needed, much awaited, nourishment for my soul. Also found between the pages of a good book.
This is not a post about writing. It’s not written by a writer. It’s written by a nurse. It’s written so I can lay this down and move on.
I promise a return to my typical upbeat musings in the next blog entry, rest assured. This is something I feel needs saying, for anyone who works in healthcare, and yes, I am using my author platform to say it.
There’s a painful, brutal truth about working in the medical field. It’s something we know but just don’t talk about. It’s something I’d rather not know, if I had that luxury. If I wasn't a nurse, if I’d never lost someone I loved to illness, I wouldn't know this truth, and I’d be happy not to know it.
Hospice is a bad word. I used to believe that. In 20 years as a Registered Nurse, I've never been able to overcome this idea. Now I know that Hospice is a bad word until it’s not. Then it’s the most beautiful word.
I've tried my hand as a Hospice nurse. I suck at it. At my core, in my most basic default settings, I am a hopeful person. When interacting with my patients, I tend to offer hope whenever I see the opportunity. Frequently, it's small consolations, like:
“The pain medicine will kick in soon.” Or, “Maybe your Neurologist will have a good solution to this problem.” Or, “Your lab values look a little better this week.”
The hope is never false, even when it's a small consolation. It's something I can't seem to help, offering a grain of hope. Even when it might be better not to.
Before this week, my own experience with Hospice only reinforced my negative perceptions. Listen up, healthcare professionals. You cannot say that word to a patient or family member immediately after telling them there is no more hope. It’s gone. There is nothing else to try, nothing else to be done, and this life will soon be over.
Think about that for a moment, the impact. Then imagine (or better, don’t, just take my word for it) the word Hospice being spoken. While you’re still digesting that worst of all possible news.
It’s inconceivable to think this one person, this person with the title Doctor, is right, and to accept it at face value. To let go of hope, and in the next breath agree to Hospice care. Even in a very long, painful, chronic illness and decline, I believe we need a minute. Or a few hours or even a couple days, if we can afford that. To try to wrap our minds around the truth of this, assuming it’s true.
Only then does the word Hospice become the word we want to hear. It’s that point in time when the only thing left to hope for is peace. Calm, releasing, pain-free peace. Hospice makes that possible.
That point in time came for a patient I took care of for over two years. After several conversations with the doctor, I'm grateful I had the strength to speak the truth, to be honest and confirm what the family already feared was true: all hope was lost. And now my job was finished; I could be of no more help. When the patient was ready, Hospice would carry him comfortably through.
There is no dignity in dying. There is only the hope for a peaceful end, surrounded by those we love. Hospice is no longer a bad word for me, not when it’s used the right way. And a good Hospice nurse is an angel in disguise.
I can count on one hand the patients I’ll remember for the rest of my life. In 20 years as a nurse, I've given very few the power to actually affect me, hurt me, and sometimes heal me. The one I lost this week, and his loving family, did all three.