Almost every day I drive about a mile or so to go see my horse, Hannover. She is boarded at a lovely barn with a lot of other lovely horses. She is a rescue that we bought for our daughter years ago, but now she is my pet. And best friend.
As I leave her and drive up the private road, this is my view. I am not sure if you can see it, but there is an outline of a beautiful young woman lying in repose on the mountaintop. They call her the Sleeping Princess.
Legend has it that the Indian princess climbed to the mountain top and threw herself off. The mountain is the Timpanogos and it is as beautiful as it is sorrowful.
I love to look at her, lying there so serene. Some days it makes me cry. It always reminds me of death. Which, I have to say, is part of my job. So it doesn’t bring me sadness. I feel she understands what I do. The quiet knowing. And I stop feeling so alone.
There is a curse and a loneliness with knowing too much. Seeing too much. Watching nightmares come to life. Watching people crumple with such brokenness that you cannot unsee it.
First responders know this. ER folks know this. And hospice nurses know this too.
In hospice, as well as with first responders, we arrive to sometimes find ourselves in the midst of chaos. And we must try to bring calm to that chaos. People are looking for help. They expect us to know. Most times we are alone doing this. Especially in hospice. It’s just you, your wits, your skills and your knowledge. We walk in and all eyes are on us. And we know. So, we just do.
And this brings me back to the heading of this post. Some things I wish I just didn’t know.
A friend or family member is suddenly having cognitive issues. I hear about it and think, I hope it’s something that can be fixed. A lot can be fixed, either by surgery or good medical management. But some things cannot be fixed. And when I hear they have a certain diagnosis, my heart sinks. I know the outcome. I have seen it a hundred times.
I watch as they seek medical opinions and start treatments. I remain optimistic always, I would never steal anyone’s hope. I try to help guide them in managing symptoms if they ask. I do truly believe in miracles. I have seen a few. But I mostly see the outcomes. And it crushes me most days.
Other nurses and hospice MDs see this too. We just know. We don’t really talk about it much however. We just do everything in our power to help. And then we move on to the next patient.
It never gets easier. It never doesn’t make us feel awful. We remember our patients. I can remember so many of them over the 20 years I have worked in the hospice field. Especially the children. The young mothers. The young dads.
I can remember when I was a hospice visit nurse back in Boston. I would be gone all day seeing patients and when I came home my husband, who is a great support, really did not want to hear the details. No one does. And why would they. It is also really hard to talk about. We are invited into someone’s life at the end. They trust us. The family trusts us. It’s such an honor. It truly is. And trying to articulate their story that is so unique and personal and special and beautiful feels like a betrayal to me
I have families ask me outcomes when I meet with them and their loved ones to discuss coming onto our hospice service. This is after all the treatments have failed and they are told that there is nothing left to do. They feel abandoned by the team that tried to cure them. Some are angry. I get that. Most oncologists I know will treat patients almost right up to the end because they so want to not take away anyone’s hope and patients are encouraged by well meaning family and friends to keep fighting. But I can many times see the outcome as soon as I see the diagnosis on the chart. I know how it will end. But I say little about that. And I will tell you this, most do not want to know. I just assure them that we will be with them on this journey and will do everything we can to make them feel whole. Many times we fall short of that. But that is another thought for another day……..
At the end, people just want comfort. They should have had it all along with palliative care, but I that’s another post for another day. These patients are so brave and now they just want to go home and not be bothered anymore with tests and X-rays and MRIs and scans and needle pricks and bright hospital lights and lumpy beds and a thousand redundant questions. They want to have medication to relieve their pain and make them less fearful. They want to sit comfortably in their favorite recliner or bed smelling familiar smells and hearing familiar sounds. They want to be part of life again, no matter how short the days. They want to laugh, to talk about something other than sickness and they want peace.
And this I know. So when I hear of someone with a diagnosis that has no cure, I see all of this. It is a burden to know this. I want to offer the comfort right away. To tell them……
But I stay silent, like the Sleeping Princess. She and I both know. But we hope always to be wrong.
Hope lives eternal ~~~~
A side note: meet Hannover. I talk a lot to Hannover. I tell her about my days, especially the hard ones. I like mucking her stall, brushing her, walking her. (No, I do not ride her)
She listens so well. I highly recommend horses. They are sensitive and wise. And always lovingly kind.
“ This mountain, the arched back of the earth risen before us, it made me feel humble, like a beggar, just lucky to be here at all, even briefly.” ~ Bridget Asher
“The road that is built in hope is more pleasant to the traveler than the road built in despair, even though they both lead to the same destination.” ~ Marion Zimmer Bradley
“The essential joy of being with horses is that it brings us in contact with the rare elements of grace, beauty, spirit and freedom.” ~ Sharon Ralls Lemon
“Somewhere we know that without silence, words lose their meaning. That without listening, speaking no longer heals. That without distance, closeness cannot cure.” ~Henri Nouwen
Thank you for this.
It’s funny, as I was reading, I was reminded of another Henry Nouwen quote. I won’t get it exactly right but he was exploring the difference between caring and curing. He was pretty direct in claiming that curing without caring is bloodless, and maybe even a little cruel.
I feel I have been extraordinarily fortunate to work with medical teams
who made caring their first priority. Of course, curing mattered, but curing was not always possible. The caring always was, and they never flinched from that sacred work.
It is such an encouragement to read your words, and to know that there are others who have the courage to care even when caring means seeing what nobody should see.
Thank you.
Thank you. Your Hannover is beautiful and I'm glad she tends you so well.