These aren’t ‘just patients.’

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Written by Trish Gwaltney 

My husband, who heard just this week of the death of two of his friends, said “I’m sad. Everyone I know is dying.” 

“Welcome to my world,” I told him. “Because that is my life on a daily basis.” 

“But they’re just your patients,” he said. “Your work. And besides. It’s different. You’re a hospice nurse. You know when people come to you that they’re going to die.” 

“That’s all very true on the surface,” I told him, but you need to understand. These aren’t ‘just patients.’ These are people who invite me into their homes and lives at a time when they are most vulnerable. And I go to them fully. I open my heart to them. Though they might be my work, they feel like more. They feel like friends. I grieve every one of them when I lose them. Even the difficult ones.Sometimes the difficult ones most of all, because I’m sad and sorry that they lived the sort of lives that made them difficult get along with and hard to please. Something was lacking there. No one can ever say what it was, but I can know that it was missing.”

“And you try to give it to them,” my sweet husband mused.

He’s right. I do. I try to give everyone in my care whatever it is that they need the most.

I pondered this question for a long time. “Why are you in hospice?” I searched and struggled for the answer. Because while there are plenty of reasons, it is, like many spiritual things in your life, difficult to put into words. It’s sort of like faith. You can have it, but can you tell someone why you do? Why, without proof of any sort to back it up, your belief in a higher power is strong and unwavering and real and perfect? Well my belief in hospice is all those things and more.

People think that this is a selfless calling, but in reality, I do this for myself too. For most people in our culture, death is a scary thing. Something to hate. Something to fear. For hospice workers, it becomes a stage of our lives. No less important or less difficult, but something that we’ve learned not to fear, but to embrace.

I do this work because if birth is a miracle, then death is too. Especially when someone whom you have prepared well for their journey slips away quietly and peacefully, leaving behind family members that feel well supported and secure in the fact that you haven’t just cared for their family member, but you’ve loved them too. 

I do it because of the profound sense of spiritual peace that settles over you when you sit at a dying person’s bedside and know that you have made them comfortable and helped them to feel unafraid and safe. 

I do it because after almost a decade in hospice, I’ve learned that the calls you least want to attend are the ones where you will do the most good for your patient and their family, thereby making you feel the most appreciated and valued. The across town call at 4:30 when your day was supposed to end at 5:00. You know that with rush hour traffic, you will not even arrive until 5:30 or possibly later, and that this is an emergency that may take hours to solve. In the end, all that is often needed is emotional support and gentle reassurance, either for the patient or their families, and being able to provide that makes you feel incredibly good inside. And when there’s a true emergency to solve? You get to play the cavalry, coming to the rescue, saving the day, and having family and friends look at you like you are some sort of super hero.

I do it because there is no more fulfilling feeling in the world than sitting with family members well past what should have been the end of my workday, listening to stories of the patient’s life as the soft light of late evening shines on their loved one’s face, quite possibly for the very last time. 

I do it because I work with a tremendous group of nurses, whose ability to care for others knows no bounds. Who selfless service keeps them at the bedside well beyond any sort of standard workday, and who—at the end of that day—take home not just charts to finish, but visions and thoughts of their patients that will fill their dreams when they finally get to sleep.

I do it because I’ve seen families come together and heal after years of animosity through the gentle ministrations of our chaplains and social workers. 

I do it because I get to work with some of the best nursing assistants on the planet, who comfort, bathe, and tend to our patients with the gentleness they might use when caring for their child, or for their own mother if she were dying. 

I do it because of the combined support of a tremendous office staff that comes together to always have my back, to make sure that our patients’ needs are met while caring for the field staff too.

I’ve held family members close as they’ve cried over the loss of their loved ones or the anticipated loss of their loved ones. I’ve held more than a few that sobbed because they were feeling guilty and torn about knowing they would miss their loved ones, yet looking forward to a bit of freedom after having their lives consumed by a sick family member for months or sometimes even years on end.

I’ve reassured people that no one dies alone, after hearing countless patients tell me that their previously deceased friends and relatives are present at their bedsides in their final days. 

I’ve seen patients get second chances, when we heal their wounds, or treat their pneumonia with antibiotics, or get their breathing medications right and they rally for a few more precious months, giving them time for final goodbyes, one more trip to a place they treasure, or a chance to spend one last birthday/Christmas/anniversary with the ones they love the most. 

I’ve seen someone my age with the same cancer that I was diagnosed with over a dozen years ago, dying of her disease because her doctor did not take her seriously enough during that early critical stage when her cancer was curable.

I’ve seen young patients die slowly, by degrees, with horrible muscle wasting diseases that steal every last bit of independence from them. I’ve had those same patients ask me if they will smother to death once they are no longer able to even take a breath, and I’ve had to reassure them not to worry… that it’s my job is to keep them comfortable right up until the end.

I’ve seen older folks dying of dementia not recognize their loved ones, and the inconsolable pain that causes wives, children, and families.

I’ve had sweet older folks ask me what happens when you die when you’ve done bad things earlier in your life. Do you still go to heaven? How do you answer that? I reassure them by sharing with them my own beliefs, that it’s who you have become—not who you might have been—that matters most to the man upstairs.

I’ve held hands, stroked foreheads, kneeled at the bedside of the dying and cradled their heads close to my heart. 

I’ve seen all that and more, so why do I still do this work? Because I know in my heart that it is what I was born to do. I know every day that I make a difference in people’s lives. I know that I would rather do this than any other job in the world. And yet it’s an incredibly difficult job. There are days that I am so sad I wonder how I’ll ever get out of bed again. There are days that hospice workers call each other first thing in the morning, searching for the encouragement they need to leave the safety and security of their homes and go out in the field for just one more day. Grief settles over us sometimes like a heavy blanket, threatening to smother us if we’re not careful. It is cumulative. While it hurts to lose one patient you’ve come to care for, when you lose two or three in rapid succession, or sometimes even in a single day, your heart is shattered into little tiny pieces. And what no one tells you going into this profession is that when you lose a patient, you will grieve the loss of his or her family as well. Your heart tells you to keep in touch. To stay close. To treasure that relationship you’ve built over many weeks or months. But your brain tells you otherwise. It tells you that to truly move on, that family needs to distance themselves from you as well. You played a part in the most difficult time of their lives. Your continued presence makes it tougher for them to come to peace with their loss. So while it hurts, you pick yourself up and move on…to the next patient and the next family that needs you. 

Looking over what I have written this morning, as the disjointed thoughts flowed from my mind without any sort of sense or pattern, I am reminded of one final thought. In my other life, I am a writer. While not a published author, I have written three full manuscripts that I am rather proud of. Those books are filled with emotion. Why? Because that’s what people want to read. My favorite writing teacheronce said, “No one wants to read a book about every day life. Every day life is boring. You get up, you shower, you go to the store, you put away your groceries, you tidy up your house. It is drivel. Sheer drivel. People read to escape. They want you to take them to the depths of their emotions. They want to laugh. They want to cry. They want to fall in love. They want goosebumps. They want to sit on the edge of their seat, wondering what will happen next. They want you to surprise them. To amaze them. To scare them. They want to experience every human emotion it is possible to experience, all in a single book.” So welcome to my world.That’s my life on a daily basis, and I wouldn’t have it any other way. That is hospice, and it’s what I live for.

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