In my years of working in hospice, I’ve watched people leave this earth in many different ways. Some rapidly decline and die within days of hearing they have a terminal diagnosis. Others pass away years after their initial admission to hospice care. In fact, some of those even go on to graduate off hospice, only to return at a later time for their final journey.
But there is another scenario that often occurs, one in which something interesting also happens: sometimes people who are unresponsive and at end of life, don’t die. These individuals, regardless of the fact that they haven’t had food or water for weeks, regardless of the fact that they are referred to as “actively dying”, and regardless of the fact that they defy all science and physical explanations, simply don’t let go. It seems that their final goodbye is, well, delayed. Working with families in the capacity that I have, I can tell you a few things about “final” goodbyes. I say “final” specifically because I actually witness several distinct “goodbyes” when someone is dying.
The first goodbye is the one when a patient is told that they are terminal. The family generally gathers together and, in truth, engages in a lot of awkward conversations. All of the conversations contain a hidden goodbye, the one that no one is really ready to actually say out loud. It’s usually the goodbye that’s full of future hope, more of less ignoring the reality of any end-of-life. I guess it’s similar to when we meet a long lost friend in a store and make the obligatory future plan to get together. Something like “We should soooooooo get together again!”, as we ignore the reality that we probably aren’t going to, given the nature of the way our lives work. It’s not mean spirited or deceptive….it’s simply that it’s easier to cope with feeling positive about the future, even when reality is staring us in the face.
Then comes the second goodbye. It’s the goodbye we say when the first real condition change occurs. This is the first real “shot across the bow.” For the first time, we actually “see” the signs of what death will look like. Perhaps they are sleeping more. Maybe they aren’t eating as much. Possibly their memory, or even their “presence”, isn’t present any longer. Maybe their face is starting to resemble the image of what we think end-of-life looks like. This goodbye isn’t always spoken and, more often than not, is simply “realized.” This goodbye leaves us feeling like we are closer to death, too.
We finally arrive at active death. This is where we give our final goodbye. This is the goodbye where we say the things that the actors do in the movies and the singers do in their songs. The heartfelt and painful goodbye, where all lies and deception depart, leaving only the gut-wrenching, tragic-yet-beautiful surrender. That goodbye. This is where we tell them about all the moments that flash through our lives, like scenes in a movie. We speak of our first bike ride, our favorite car, our beloved pets…..all of our firsts and bests. This is where we weep and we sob and we can’t contemplate a future without them. This is daddy, or mommy. And we remember how good it feels to be able to touch them, hold their hand, see them while they are still here. While we know that they still exist, and we don’t need to rely on a spirituality to explain where they “live” now. We feel this goodbye as it’s happening, and we realize in-the-moment the regret of “what could have been?” And much like a confession, this goodbye isn’t just for them; this goodbye is just as much ours, too. At the end of this goodbye, we might actually feel a sense of resolution, a sort of relief that we have submitted to the grief, and can now truly be happy that the dying person is dying. We…..release.
So, what happens when we release them and they don’t go? Returning to our original discussion, we kinda find ourselves almost scratching our head, wondering why they didn’t die after our goodbye……so someone could yell “CUT!” and then, bam, end scene. Inevitably, families ask me, “Why are they holding on?” or “What did we miss?” Sometimes tears of anguish flow, as families become desperate and wish for their loved one’s death to be hastened. So often, families quickly rattle off names of long-lost family and friends in need of closure, or recall unresolved arguments needing mending, all in an attempt to decipher the meaning of this “hanging on.” Well, I have a theory……wanna hear it?
I remember my first time on a high dive. I think it was at a pool somewhere in central Wisconsin. I remember standing in this long line. I remember the anxiety grew with each step closer to the ladder. I remember the nervousness take over as I stepped on the first rung. As I made my way towards being the next to jump, “on deck”, as they say, the anxiety turned into a bit of fear. But there was no turning back. It was my turn and I would be jumping that day.
As I walked out onto the diving board, I took a moment to look around at my new view. I remember turning around and seeing the anxious smiles of the kids that lined up behind me. I remember glancing at all the people surrounding the pool, each engaged in conversations about the trivial things on their mind. I remember noticing family and friends watching me in anticipation. I remember looking around and seeing all of the houses nearby. And for a moment, for just a brief second of time, I simply just took it all in. I let the reality of the moment wash over me, and I stopped being afraid.
And then I jumped.
I tell families this very story. Often, actually. And when I do, I ask them to picture their loved one as a young kid on a high dive, simply looking around and enjoying their moment before they “jump.” I have no proof that it works this way – that the dying are able to look around for a bit – but if feelings can be universal, if what we imagine can translate to other, similar moments……then this is the closest analogy I can think of to match what must be an amazing view from the “high dive.”
Sometimes they hang on, and that is ok. They simply just want another look around before they jump.
Good things ☺
Cw
So very true and a great way to look at it. You are a blessing in so many ways Chad.