by Jenny Schoen, LVN, CHPLN
Of course, I cannot speak for all hospice nurses, but these are the main things I wish my patients and their families knew!
WE DO GET ATTACHED Sometimes we try not to get attached because it's hard to see you suffer or pass. But sometimes we know from the first time we meet you that we will be attached; we will miss you when you're gone, and you will live on through our memories.
WE HURT WITH YOU We feel a sense of responsibility for your comfort. We take it as a personal mission to see that your pain is managed well, you aren't vomiting as you once were, your restlessness has subsided, you can sleep at night, etc. When your symptoms aren't managed well, we will stay with you until they are managed. We will call the doctor 10 times if needed. And when we do go home, we will still think about you, hoping you are comfortable.
WE WISH WE HAD KNOWN YOU LONGER So often we will meet you in your very last days, and as you tell us fond memories or unique life experiences we begin to wish we could have known you longer. Some of these stories you will tell us yourself, with vivid descriptions of times and places, and although we have other patients to see, we would sit and listen to you all day if we could. If you are already unresponsive and beginning your journey out of this world as we know it, we will wish we had known you when you still chased people with your walker or told jokes about your children or spouse.
WE WANT TO CRY WITH YOU, BUT WE TRY TO BE STRONG FOR YOU So many times we hold back tears, hug you, and tell you we will do everything we can to keep you comfortable when you are having a bad day, or just need some encouragement. Or sometimes we will just "be there," because you just need someone to listen and "be on your side." But inside, we want to cry with you and tell you that we don't understand why you're going through this, and we would give anything to fix it if we could.
SOMETIMES WE ACTUALLY DO CRY AS SOON AS WE LEAVE I remember many drives to my next destination, looking for tissues to dry my tears (and nose) because I didn't understand why you had to go through your terminal illness. But more than anything, I didn't want you to suffer. Sometimes your family members hugged me so tightly because they were scared, sad, afraid about what was going to happen next. I hurt with your family as well.
LAUGHING WITH YOU IS SO SACRED TO US AND TREASURED BY US It warmed my heart so much to share laughter with you. Your laughter was contagious, and I am so lucky to have seen that incredible smiles. Sometimes you couldn't contain it, you were having a good day! And I was thrilled to share it with you! Other days, you made due and tried your best to make it a good day, despite the situation. You told me, "It could always be worse," and this is such a courageous statement. You're dying, and I complain about being tired? You helped me put life into perspective.
I KNEW I WAS SAYING GOODBYE FOR THE LAST TIME Oh how rich we would be if we knew the future. Because more than likely your family will ask. But other times, from things we've seen before, we know we won't see you again in this life once we leave from our visit. It's a bittersweet goodbye. We know your journey is about to end., and that brings a sense of comfort to us, yet sadness for the earthly loss that will be felt by so many. I have always said to patients, "I'll see you later," because that's my hope. Not necessarily that I will see you alive, in your home, tomorrow...but that I will see you again, in a better place, where there is no sorrow, no sickness, and no pain.
ONCE YOU'RE GONE, WE WILL ALSO MISS YOUR FRIENDS AND FAMILY Depending on your time with us, we may get to know your friends & family quite well. We see them a couple of times a week, if not daily. We share some very intimate times, discussing problems and concerns that they won't share with many other people. We get to smile & laugh with them when appropriate, hug and console them when needed, enjoy memories told about you by them, or memories of them told by you. You become like family to us. You help us realize just how much love our heart is capable of holding.
AND WHEN THE END DRAWS NEAR... It's truly an honor to have known you. You made me a better person. I have photographic memories of times I have shared with patients and their family members that randomly pop up in my mind, and it warms my heart to know I was able to be part of so many special lives. I wonder how your spouse is doing since you passed. I wonder how your parents are coping because you were so young. I wonder what Christmas is like since you were always in charge of decorating the tabletop tree. You allowed me to be a part of your life during such a vulnerable, special time. You trusted me to help manage your symptoms as your life came to an end and comfort your family during this transition. You allowed me to be a part of your life when your days were numbered. But please know without a doubt, you will always hold a special place in my heart because of the times we shared together.
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