All of the writer's say the same thing..."Isn't it so hard to do this work," and "How do you do this?"
As I responded to the writer on Tuesday, "I'm not gonna pretend there isn't a bottle or two of pink wine consumed to soothe my tender heart...and I know that is not the best way to cope, but it is not really that sad. Hard...yes...but sad...not always." He went on to talk about me and what kind of person I must be to do what I do...and I felt uncomfortable and told him so. He asked me what d I want I wanted the article to be about...so I began.
I told him about Hospice care and how people who don't understand feel like they are giving up. I reject that notion because it's simply not true. Hospice care is about living...more comfortably and in less fear. It's about having control of the time you have...not sitting a chair in an infusion office being treated when they tell you it isn't helping and just making you sick, or being in a hospital when all you want to be is at home in your bed surrounded by your family, your pets and your stuff.
I spoke of our mission to help the family to feel supported while their loved one is dying. The thing about being a hospice nurse is not that it is so hard or easy...we know that we are walking into...a family that is devastated, tired and wishing things were different. But, because we know that, it is our starting point for everything we do. We don't go in and tell them, in their home, what they are going to do. We also know that when a person has fought hard and has been told this is what they need to do and they do it while enduring the disruption of life, nausea, baldness and fear...what they really want back is control. They want to feel better than they do, get a handle on pain and nausea and spend every moment they can with their family. We know that and they don't even have to tell us...
When I walk into the home and convey that they are in control and my job is to help them be in control, be comfortable and answer any questions they have with honesty...I can feel the chaos that is terminal illness quiet down. I, and I know all of us, take the time to explain things once, twice...today, tommorrow and even in the middle of the night if the patient or family call us.
If I had a dollar for every yes I got from folks when I asked if they were happy to be home..
I say this to patients and family a lot and I always mean it, "We are going to help you". While it is about symptoms...feeling less pain, nausea or whatever is physical that you need help with, it's also about changing the definition of cure, or success. It's not my place to change anyone's mind or make a patient do something they don't want to do, but talking about things that are scary and have been avoided seem to give patients and family a different kind of comfort and a decrease in the fear.
I think of Hospice patients and their families as superheroes. It takes a certain love and courage to acknowledge the path before them and then follow through. I am humbled daily and consider myself lucky to have this job and that I get to do what I do. I witness humans doing what is good, right and holy on a daily basis. Yes, I know I witness incredible pain and suffering...from families losing a loved one or a patient not wanting to leave but, I get to help, to support and sometimes just wrap my arms around a caregiver and let them know they will make it...even when they think they can't.
So when people say that phrase, "You have to be a special person to do that kind of work" I challenge them. I am the one who gets to help, to watch the strength of love and family along with faith to get them through life's unbearable sadness. They are the ones that are special people and I just walk in at the right time to be with them.
So, when I knock on the door and then open it...I always say, "Hello, it's me, Terry, the nurse" and walk in knowing I am lucky and honored to be right where I am.
We'll tawk tomorrow,
I love you all,