The weather this weekend has been misty and gray. The trees quiver with the weight of the moisture on their leaves. With every gust of wind, the dew patters to the ground to echo the footsteps of my ghosts as they run through the woods.
One year ago yesterday, I decided to change my mother's care to palliative. It was the day before her 55th birthday. After some contemplation, I had decided not to wait until after her birthday to sign the paperwork. Though it had felt like I was giving up just when I should have been celebrating her life, I had finally recognized that she had given up long before and I just wanted her pain to ease. I didn't want her to have to struggle through her birthday.
Over the last year, that decision, all the decisions over the course of her care haunt me. I question if I should have waited, if I should have made the decision weeks earlier. I wonder if my self-interrogation stems from the melancholy that I feel right now, struggling with the convergence of her birthday, her death, my birthday (the 20th) and the anniversary of her funeral. I probably won't ever know if I made the right choice for her and that abrades me. I hope that as time passes, the erosion resembles less the calving of glaciers, monstrous pieces felled in a swoop, and more the gentle tumbling of sea stones.
Last night, a husband, surrounded by his family, decided to transfer his wife to hospice. The time spent in her room with her family was like a crampon squeezing my heart but they seemed desperate to have someone they trusted, who had cared for their wife, there to reassure them of their decision. I stayed because her daughter wouldn't let go of my hand and I couldn't bring myself to extract it.
The staff lounge was awash with comments like "it's about time" and judgments about the family's decision, a typical occurrence during these transitions. I completed her paperwork and then took a 5 minute bathroom break to rinse my grief from my eyes.
My sadness for her family and their coming sorrow, my sadness for the other six patients that I've transferred to hospice, particularly those who had no loving family to take on the burden of loss, and my memories of my beautiful vibrant charismatic mother sit like lead in my chest.
It's ironic that those who are most vocally critical of the choices that families make are those who have had the least experience dealing with any major decision, loss or grief and the least experience with the patient and her medical history. There were nurses who had never worked with the patient, never read her chart, never met her or her family who felt comfortable deriding the family and what they perceived as an unnecessary delay of the inevitable.
With a few questions carefully chosen to prick holes in their balloons of certainty, I made my point that this was a complex situation that could not be boiled down to an imprecise diagnosis and that making these types of decisions isn't easy or simple for clinicians who've been in the field for decades, let alone the families who are newcomers.
I started this post intending it to be a panegyric for my mother and the incredible staff at the Kindred LTACH in Wilkes-Barre, PA. Throughout the last months of her life, they nurtured the joy that she felt being around people- not an easy thing to do working in a hospital. Despite their many responsibilities and her inability to respond, they took time to visit with her and amuse her. They also supported me completely as I tried to navigate the bayou of treatment options. When my mom reached her limits and began to withdraw, I requested and they unhesitatingly joined me, her physicians and an ethical committee to discuss withdrawing treatment.
I am grateful that they demonstrated the power of empathy in softening the uncertainty and distress a family feels in these circumstances. Though, as an aide, I have no medical authority to ease the doubt and fear someone has in making a decision, I can follow the example set by the folks at Kindred. I hope that I made the family's trauma easier last night. I hope that I will always remember as vividly as I do now what it felt like grieving, frightened, unsure and dependent on the guidance and understanding of doctors and nurses.