On Tuesday, as I sat beside him, "Frank" died (not his real name). I didn't notice his last breath, just a sudden stillness. I placed my hand near his mouth, to see if I could feel an exhalation, and when I didn't, I touched him gently and said goodbye. Then I went to get the nurse, to record the time of death. Frank was 93, and while his death was expected, we didn't expect it then. I had just seen his family out, and told them I'd sit with him. However, when it comes to death, I know that expectations are foolish.
As a Hospice volunteer, I spend every Tuesday with people who are dying. I cook their meals; hold their hands; read to them; I sing and I sit quietly. I tell them stories and I listen to theirs. I wipe their foreheads, when fever or illness makes them sweat; I listen as they struggle to come to terms with the end of their lives, and I laugh with many of them. As a volunteer, I do not provide any form of medical care, only comfort. It's an honor and a privilege that I look forward to every week, and it's changed me for the better, in more ways than I can count.
Three years ago, my mother spent three months at the local Hospice House, where I now volunteer. She had late stage Huntington's Disease and had broken her elbow. It wasn't a fatal injury, but she was done fighting her illness and chose to stop eating. Her body was frail, and she was grateful for the peace and quiet of Hospice House and the palliative care offered. I accepted her decision and visited every day. I was grateful for the respectful, tender care she received in hospice, though I resented death for taking her so young (67).
Death and I have a long and tangled history. My father was killed in a car accident when I was 10, and Huntington's has plagued my family -- claiming my grandmother, my 49-year-old aunt, and my mother -- so far. Five years ago, my 43-year-old cousin was killed in a plane crash, just weeks after my aunt's death and a month before a friend was killed in an accident. At times, it felt like death was constantly blindsiding me. Volunteering at hospice has changed that.
One of the primary goals at Hospice House is to treat every patient with the utmost respect. Hospice does not seek to extend nor shorten any patient's life, but seeks to help each person remain as independent as possible in making end of life decisions, and as free from physical pain as is medically possible. End of life is where we begin. As a volunteer, I have a unique opportunity to stare death in the eyes each week, and not blink. I walk in those doors, eyes wide open- knowing that I will connect with wonderful people and I'll have to say goodbye to them. There are few blindsides at hospice. The entire team is there to provide compassion, support and care, at the end of a person's life. Inevitably, it's hard when a patient is someone I know, or someone young- there will always be traumas, sudden deaths, and illness to remind us that life can change very suddenly, that life is precious.
Each week when I check the list of patients, I often choose to skip some details -- including the diagnosis. I like to enter each room and allow that individual to show me who they are, and tell me what they need. I've learned that while there are similarities from patient to patient, there are also infinite details that make each person's needs unique -- cancer does not look the same on every person who has it; aging, illness, peace is experienced differently from person to person. Despite who they are, or how they've lived their lives, the end of life can be a vulnerable time, and I want to find whatever it is that will help them feel seen and heard. I have no way of knowing if the person I'm spending time with was a horrible parent, or miserable neighbor; I don't know if they were a drug addict, teacher of the year, or a saint. I know that they are dying, and I love being part of the team of people who will help make that transition as peaceful and supportive as possible, whatever came before.
Over time there are a few things I've learned that impact how I approach my role as a volunteer:
1) When the end comes, loss is loss, and you can't always prepare for it nor predict it. Frank was 93-years-old; his family knew that he would die soon. However, when he did, just minutes after they'd left his room, it was still a huge loss. I've seen patients "hold on," or remain in hospice for months, like my own mother, and others who died very quickly. I never say to patients or families: "see you next week;" there's no way to know if I will. I say, "I'll be back next Tuesday." It's hard to predict, and while many patients struggle to accept their death, family members deal with it in many different ways as well.
2) People are not always able to leave their conflicts at the door -- but they should. It's not easy for anyone to face their own mortality, but it can be much harder when family members bring conflict and unresolved issues along. I've heard so many patients share their distress, as those they love squabble over care issues, estate planning, and even funeral arrangements. Aside from the hospice social worker, other caregivers don't get involved in these issues, but we have all seen the toll they can take on a person's emotional wellbeing at the end of life.
3) So many mothers -- whether they're 30 or 100, want to hear: "thank you; you did a good job." I've sat with women who are dying, who have young children as well as those who have outlived their children. I understand that relationships are complex, and it's not a given that every mother did a good job, but I am humbled by that need and the peace I've seen on patient's faces, after they hear that message. Those were my final words -- just minutes before my mother smiled, and took her last breath. In the end, I believe we all want to hear that we mattered and did our best.
4) Mean people die, funny people die, religious people, angry people, and good people die. Whether someone has lived a wonderful life and feels cheated to be dying too soon, or they've lived a long life and are ready, or their life has been difficult and this is just one more short straw, hospice care offers an opportunity to ease that final stage.
If I can share some humor, or discuss news and current events, if a person needs to hear me read psalms, or have me sit quietly, then that's what I do. Hospice care is not there to judge or give one-stop care; each patient is unique in their history, their needs and the way we care for them. I love that challenge. There are patients I've only known for hours, and those I will always remember -- people who have touched my life, and allowed me to share a sacred time in theirs. Each week I look death in the eye and I'm reminded just how fragile life is and how my actions can help make the final transition a little bit better -- I am reminded, how to live.
This is a poem that a special patient shared with me. R. is younger, and has had some hard times. Through it all, he's written poetry -- pages and pages. However, when he found out he would be going into Hospice, R threw all of his work in the garbage. He was able to recall a few of the poems, and rewrote them on a small note pad. He shared them with me, and I was deeply touched by the depths of his feelings. He then asked me to share his with others, so that "he'll be remembered." R gave me permission to share this poem and his last name, here:
I'm on a street corner standing alone,
Another windless night without a telephone.
In the darkened air I've remained for years,
Wondering if I will be able to hide all these tears.
Though the tears that are shed, are not really known,
For the wind that will dry them has already blown.
If the tears are cried and the voices still call,
Will the tears be dried in the next early fall?
Or will the tears remain, forever each night,
And will the tears that are seen become everyone's fright?
But as the wind will pass and the tears be dried,
Will there not be someplace else someone has not yet cried.
© R. Greenberg, hospice patient (with permission)