I have spent most of my career working with individuals who are facing life-threatening illnesses that will lead to their death. Some would say I work with the dying. The end stage of life may last days, weeks, months or even several years. Each person is an individual. Each is living until they are not.
I run the Doula Program to Accompany and Comfort, a nonprofit organization that trains, carefully matches and supervises men and women who visit a person facing the end of their lives alone. For many individuals, the relationship with our Doula Volunteer is the only consistent relationship in their lives as their illness progresses and medical and social services change. We will visit weekly until this person dies. We also consult for hospitals and community organizations nationally and internationally.
What I have come to know is a profound isolation and loneliness that so many individuals experience at the end of life. That isolation is often compounded by the fear felt by those of us who are “well.”
Our fear often causes us to stay away. Stop visiting. Being near someone who is experiencing this stage of life may remind us that this “could” happen to us. We attempt to protect ourselves and others from the sadness and pain we feel when someone dies.
“We wish we could prevent death. Fix it. Make it all go away.”
We may be plagued by uncertainty. We feel inadequate ― can I say the “right thing” and not do the “wrong thing?” We wish we could prevent death. Fix it. Make it all go away.
I am no different. I wasn’t born with the manual.
I grew up in a household that treated death as a secret. Dead and dying pets were whisked out of the house. When a relative died, my parents would disappear to North Adams, Massachusetts. I only learned as an adult this is where we had a family burial plot. Eventually, I attended funerals, but the details of life-threatening illness were left out.
I learned from my parents. I was taught how to behave and what to say when someone died. I was taught to shut down conversations that veered in the direction of dying.
I remember practicing with my grandmother. On my grandmother’s 83rd birthday, she was dressed, lying down, on a neatly made bed, her hands crossed across her lap as if arranged by an undertaker.
“I want to join Benjamin,” she said quietly. My grandfather had died six months earlier. I knew, because I went to the funeral.
I recall my father responding with something like, “Don’t be silly…”
In an effort to cheer her up, I piped in, “It’s your birthday, let’s have fun.” She agreed to leave her bedroom. I felt successful. I had gotten rid of that sad, awful topic.
I wish now that I had sat with her and asked her what she meant. Spoken to her directly. What would have happened if I had asked how I could be helpful? What would have happened if I had told her I didn’t know what to say? What would have happened if I had just listened?
My guess is that we would still have gotten to the fun stuff.
I came to my current work through working in hospice and hospitals. As a clinical social worker, it was the slow and steady series of experiences meeting human beings who shared their end of life with me that was most meaningful.
Over the years, I have searched for the right words, and the right thing to do. My teachers have steered me toward knowing the discomfort of uncharted territory. Choosing to allow the conversation and make every effort to not shut it down.
“Know them when there are words. Know them when there are no longer words. Know when we have an agenda and desperately want to fix an unfixable situation.”
I continue to learn, and to teach and guide others to know a person, the whole person, as illness progresses. Know them when there are words. Know them when there are no longer words. Know when we have an agenda and desperately want to fix an unfixable situation. There are those days I need a lot of reminding.
The first person I was with when they died was my mother. I hovered with her for hours in a place between here and there. A place unique as breath that seems deep and then shallow. I could accompany her just so far. Her last breath was the deepest ― then I felt she had “gone.” A palpable disappearance of her person. All of her.
This begs the question ― is there an afterlife? I have had numerous experiences since that time, as men and woman nearing death speak of feeling the need “to pack” and ask for my help. I assured all of them that they would get the help they needed.
Once I was sitting with a woman who I was certain was fixated on a dead relative as she stared at the ceiling. Then she told me she had spotted a large crack.
As in all stages of life, it’s best not to assume anything.
Many people I have been with are eager to talk. The ordinary and extraordinary. Topics might include the weather, books, TV, joy, sadness, anticipation, pain, death, and life experiences. Woven in and out are topics such as burial and the afterlife.
Jean, a lifelong learner who studied Cantonese in her last months, remarked that as little time was left, she was curious about death. In our last conversation, she said she “wondered” what might happen after she died. Because, she remarked, “I haven’t done it before.”
Other individuals have been sure they’ll join those who have died before them. A man I recently met commented on how crowded it must be “up there” if everyone is in bodily form. He concluded, waving his hands gently in the air, “we must all be just wisps of things so we can all fit.”
He talked about noticing his progressing weakness. He spoke to me about times in his life he has been selfish and times he has not been. He talked about the impact of both. He stood gripping his walker as I left. The rubber dots on his slipper socks turned onto his instep ― backward. I felt sad.
I enjoyed talking to him. I will miss him.
As illness progresses, loss increases. Loss of the ability to do things like work and play. We increase our dependence on others to achieve once-simple daily tasks. We need help to care for ourselves ― our personal needs. We lose the ability to join others, to meet new people, to seek connection. Homebound, we rely on individuals to come to us and share life experiences, our end-of-life experiences. This is what it looks like.
“Being known is what we all need and want all of our lives ― at all ages and all stages.”
Do we really want to know?
I am not always welcome at a party. I can feel it. I forget that I am not supposed to talk about these things in an ordinary way. The person typically heads for the bar and rarely returns to continue the conversation.
I think about what quality of life means to me. Unwavering is the desire for pain relief.
Unwavering is the desire for relationships. Being known is what we all need and want all of our lives ― at all ages and all stages.
But through my work, I am continually reminded that our lives are simply moments. Several years ago, I sat with a man who no longer had an appetite. He told me about an afternoon and a genoa salami sandwich, “good mustard” and “good bread.” Moments. The ordinary and extraordinary. This is what people seem to remember.
Amy Levine is the executive director of the Doula Program to Accompany and Comfort and can be reached at amylevineconsulting@gmail.com.