COMMENTARY: Family and Psycho-Social Dimensions of Death and Dying in African Americans
Commentary by Author, Andrea King Collier
-Still with Me ... A Daughter’s Journey of Love and Loss,
Now I lay me down to sleep, I pray the Lord my soul to keep. If I should die before I wake, I pray the Lord my soul to take.
This was one of the first prayers I was taught as a child. Is it any wonder that I am not an insomniac to this day? Or for that matter I think it explains why so many of us wrestle with the mere concept of death and dying. But funny, as I have gotten decades older and seen various people I love and respect die in a host of ways, it is now a prayer of comfort. I like the idea of going to sleep one day, like any other day, and not waking up. No long disabling illness, no chemo. No pre-planning, no big decisions to be made on my behalf. No one needs be a hero. No pain or palliative care required—just a good long sleep.
But the reality is that as many people as there are on this earth, there are as many ways and stories about the way we die. As I heard Richard Payne, MD, say in a speech once, "The single biggest indicator of mortality is being born." He’s right. We all leave here. And no matter how we try to prolong it, the result is the inevitable, so it is best to live well and to love well.
Growing up, I never had much experience with death. My grandmother and caregiver was a volunteer at the church. Her job was to read the obituaries at the funeral services. She would take me with her, and I would sit quietly in the back of the church, listening and critiquing her delivery and watching the families.
For a long time I didn’t really understand that there was finality to this death stuff. And when I grew old enough to understand, I was still quite removed from it.
My personal reality is that I was in my late twenties before death personally touched me in any way. Or maybe the truth is I ran from death’s touch until absolutely necessary.
I am one of the people that sociologists call the sandwich generation. I was sandwiched between the care of two small children and the care of a terminally ill parent. The sandwich was a thin one, as I had no skills or training to deal with this. The ongoing sense of inadequacy in wondering if I was just failing everyone or doing a passable job for anyone seemed to overwhelm me.
Once we got further and further into my mother’s advancing disease, my own prayer was that she wouldn’t ask me to help her end her suffering. And every day that advanced without that request was a good one. I look back on that time and wonder where was the handbook that everyone should get to explain the end of life. I wonder who thought that I was smart enough or capable enough to be the sole caregiver for someone at the end of their life. It is still one of my life’s mysteries.
As is suggested by Dancy and Davis, it has always appeared to me that black folk are miraculous with the rituals of homegoing. We know how to send a person off. We also know how to stretch the time between death and the funeral out for days, often weeks, until our relatives can come from across country to say goodbye (which has always puzzled and dismayed me). Yet we are not so good at dealing with illness and the transition itself. We struggle with cancer, Alzheimer’s, and stroke. Every day we are learning more about and getting better at utilizing the community and familial support that is required to care for those with life-threatening illness.
Even though it is getting better every day, it is hard work. These kinds of illnesses either bring about the best in families or it picks away at the frayed, fragile edges in them.
When my mother called me to tell me that the doctors thought she had some kind of cancer, I knew in my bones, in my DNA, that what we were embarking on was the end of her life and the end my life as her daughter. When I think about that time, even now a decade later, I picture her and me on a rollercoaster and immediately think that we should get off. But of course, you cannot. You must ride until the rollercoaster stops.
We were fortunate, blessed, or both. My mother had great health insurance. She had me as her relentless health care advocate who never took no for an answer. She had the best doctors. And I had the luxury at the time of being her caregiver. I understand that our situation was not typical for many families of color. Nor did it affect the ultimate outcome of my mother’s diagnosis of ovarian cancer.
That was 13 years ago, and in some ways not much has changed. There are more resources, but it feels like so few people of color know about them. And those who do know about them have a nagging distrust of "the system" that provide those resources. When we were offered hospice care, I didn’t know anybody who had ever utilized it. There was no one to give me an idea of what to expect. It was a grand, uncomfortable experiment.
But for our family hospice was absolutely a godsend. It made her transition easier for us. Hospice helped me understand death and dying better. And it gave me the support that helped to make up for the missing handbook. But I also know that there are many people of color who are not using hospice.
In the black community, we are opening ourselves up to the supports available at the end of life. We are learning more about living wills and advance directives. We are watching to see how this country speaks to those who cannot speak for themselves. We are learning from what experts as Drs. Dancy and Davis have to say about culture and death. We are benefiting from what experts are teaching our community about caring for those who are transitioning.
In the two years since my book, Still With Me ... A Daughter’s Journey of Love and Loss, was published, I have gotten a chance to talk to hundreds of individuals and families about living and dying well. I have heard the most touching stories of caregivers and families navigating care. I have seen the look of helplessness when there is just so little help available. I have seen what a heart breaking looks like and have felt my own heart breaking because I couldn’t do more.
I used to say that I am the angel of death, because I have spent so much time talking about my family’s death experience and how we reached out for hospice support. A friend who sought out support in her community because of our experience always corrects me. She says I am one of the angels of good death. This is something I do not take lightly. For me it means that I can reach out and inform and share with others who are desperate or nearly at the end of their ropes in the need for quality pain and palliative care.
If there is any take-away message in the work of Dancy and Davis, or in my own book, I suggest that it is that we must make a priority of understanding the processes of dying as well as we work to understand the processes of living.
As Black Americans, we must continue to grow to support each other as individuals, families, and communities in the full-circle business of living and dying with dignity.