We Are Here

The image of a nurse running down a hospital corridor.

The picture of a nurse getting dressed in isolation garb to care for a critical patient.

To most people, those are the images that flood their minds when they think of a textbook RN or CNA. That’s how we are portrayed in the media and through books. But, there is a very large portion of us that doesn’t fit that mold. We aren’t in hospitals or clinics. We don’t work the typical 12, give report and then head home. We meet you on your turf… in your house… We are the hospice nurses.

We are often dismissed and forgotten. Recognition for us does not come from a banner across a nurse’s station. Our roles are much different and varied the traditional nurse.

There used to be a stigma with us home based nurses and care staff… “They couldn’t cut it in the hospital, so they took the easy route.” Let’s think about this for a second… imagine a patient transitioning with a terrible case of terminal agitation – agitated and aggressive- while family surrounds the bed. His poor wife, exhausted from his care, looks to you with her tear streaked eyes, not sure what she wishes more – to have him get better or end his suffering. She looks to you. With pleading eyes and her hand trembling, she reaches over for the reassurance of your touch. You are it. In those moments, you are every single healthcare role imaginable. In your eyes, she sees a nurse, a doctor, a care aide, a social worker and a spiritual guide.

Home based nurses have to think quickly and act swiftly. We cannot hope that “next shift will do it” because it’s on our shoulders. We have to be accountable not only to our patients and families, but, more so to each other. When our days end (do they ever really end?), there is on call staff, but, they are there for emergencies, only. It would be disastrous if we left unfinished work, just expecting them to take care of it. Forgot an antibiotic? It’s ok, next shift can do it. Nope. We are all the shifts. The beginning and end of nursing for these patients that so desperately need our help.

While autonomy might be one of the attractive aspects of home based nursing, it can also be its biggest challenge. Need blood drawn and can’t find a vein? You are the IV team, so summon your inner vampire and find the blood. Have a festering wound that has oozing drainage that smells like nothing you have ever smelled? You are your own wound specialist. I could go on, but, the point is that in that moment, all you have is what’s located between your two ears. Fortunately, (for me), help is usually a text away for possible advice. But, if everyone is busy, then, it’s all on you.

We are the silent branch of nursing… we move from home to facility – quietly tending to our patient’s needs. We don’t have a controlled environment where supplies are available. A house full of bed bugs? A family in the midst of conflict? A patient in the last throes of CHF, gasping for air? Hospital nurses never know what will walk in next. Home based nurses never know what we are walking into next.

We -are- the frontline nurses that are often talked about. Our days filled with visits, calls to doctor’s offices praying for return. Our stomach rumbling because before we could tell it is 3pm and the only thing that has touched our lips is our mask. Bladders bursting at the seams because there isn’t a safe bathroom in sight. With no cell phone service, cut off from the world, at times, it truly is an army of one.

Hospice is (and I am not kidding when I say someone once told me) where lazy ICU nurses go. Having been a former icu nurse, I can honestly say that I might not be on my feet for 12, but my brain is on 24. I have changed Foley catheters with no light and almost jump for joy when I see yellow in the tubing. I have changed wounds in places where the idea of opening the dressing to change the wound terrified me because the environment was so dirty and infection could have been anywhere. Let’s not even talk about the never ending charting. This is Medicare charting. This is government charting. This is carpal tunnel charting.

I have held the hand, as it turned from warm to icy cold, for a man who had asked multiple times to never let him die alone. I have seen the entire expression change on a family members face as I tell them their loved ones time is close. Much has been made in the media about nurses in the hospital using iPads for families to say goodbye to their loved ones. For hospice staff, that’s routine. We bathe and care for you, so you die with dignity. But, those things, like us, are sometimes forgotten.

COVID has given nursing a renaissance and we are called heroes. Having gone from the traditionally thought role of nursing to this more behind the scenes one, I can tell you that I don’t feel like a hero. The things some blast in the media as heroic for hospital nurses are commonplace for the home based hospice nurse. Personally, I have never felt like I fulfill more completely the role of a nurse than I do now. Hidden or not, forgotten or not, it takes courage, knowledge, understanding, patience and empathy to venture outside a hospital and nurse.

Don’t forget us… we are here. Our trunks are full, as are our hearts. We spend each day caring for patients and their families where they are most comfortable and yet most vulnerable. We cannot step out of a patient’s room if things get too tough to take a breath. They wait for us, anticipating our visits. We might be often be forgotten in the nursing conversation, but, we are never where it matters the most… in the eyes of our patients.