The Blog to Transform Advanced Care
Advancing Care through Innovation, Observation and Collaboration.
By Dr. Gloria Thomas Anderson, Assistant Professor in Social Work, North Carolina State University
“One of these mornings, it won’t be very long… You’re gonna look for me, and I’ll be gone. I’m going to a place where I’ll have nothing to do but just walk around, walk around heaven all day. I’m gonna sing and shout, and nobody will be able to put me out… we’ll just walk around, walk around heaven all day.”
Momma used to sing that song—”Walk Around Heaven All Day” by Mahalia Jackson. I don’t remember all of the lyrics, but I vividly recall her singing in the church choir and often at home, especially while she was cooking in the kitchen. I woke from a dream recently where I saw and heard my Momma singing that song with other people I didn’t recognize. This dream of Momma singing in what seemed like Heaven comforted me and brought peace to my soul. She loved to sing. You see, Momma died less than a week before her 82nd birthday two years ago and in the last few months of her life, she wasn’t able to sing at all.
Momma was strong-willed and always wanted to be in control of things—and us. She didn’t lose that part of herself in the end. There were two close moments of her dying that happened just a few days before she passed. The first time she stopped breathing, I lost it and burst into uncontrollable sobs. My two daughters, nieces, and siblings all wept—all of us, holding and hugging and crying together. We were on one accord in sadness–something that was not our usual disposition. Then, after lying there breathless for what seemed like several minutes, she breathed. A sigh of wondrous relief replaced the overflow of tears on our faces. I know Momma could hear us, though she couldn’t speak or open her eyes.
I thought to myself, “Mom is enjoying all of this attention.” Her holding her breath seemed to be a ploy to do that and it worked. Then laughter suddenly erupted when my sister spoke out loud, the very thought I was thinking—“Momma is finally getting what she always wanted—all of us together giving her our undivided attention!”
The next day, she withheld her breath again, but this time we all swiftly locked our gaze on her, wondering was this really it. This time, the mood was a lot less emotional. We simply stared at her, fixated on her face and looking intently to see whether or not she was going to breathe. This time, after a few minutes, she began breathing, but very shallow breaths. We were relieved, nonetheless. “She’s still with us,” I thought.
Momma was a fighter and had overcome countless life obstacles in her 81 years. Death was no stranger to her, even as a child. She survived after losing her own mother at the age of two and her twin brother at the age of five. Momma and her remaining siblings were tossed around to different relatives for years, before being adopted by an elderly cousin who was disabled and confined to a wheelchair. Momma was 12 years old by then and was treated abusively by her cousin for years. The 1930s were harsh times, especially for people of color in those days. She was forced to work the cotton fields rather than be allowed to go to school. She learned to cook from scratch, sew, and clean—all mandated conditions to have a roof over her head. After being hit across the head with a broom, she ran away and married my dad at the age of 17 to get away from that environment.
As our family sat together in her hospice room, memories flooded my mind as I thought about my mother’s life. She loved her family; she loved people; and she loved to cook! She never met a stranger, and food was her way of bringing people she loved together. Soul food was her specialty and her homemade cakes and pies were requested almost daily throughout our urban community. She was notorious for extending invitations to eat dinner and to sleepover, if you had no place to go. For as long as I can remember we always had “company” or guests at our house. People were always in and out of our home when I was growing up, and that’s just the way it was.
Momma was a businesswoman. She used what she learned and made the most of it. She had a beauty salon at home and her customers would often stick around to eat her made-from-scratch meals. She found joy in cooking and being with people—many of whom I didn’t know. Calling me by my middle name, she’d say, “Jean, you haven’t met So-and-So, have you?” Knowing I hadn’t met “So-and-So” yet, she wouldn’t wait for me to respond before introducing us. “So-and-So, this is my oldest baby, Jean,” she’d proudly announce with a wide grin on her face. Of course, I’d do the expected pleasantries—smile, say hello with almost genuine enthusiasm, then proceed with the usual chit chat most children do when confronted with strange faces in familiar spaces. Even as an adult going home to visit my parents, the scenario was always the same—a house full of visitors and a constantly ringing telephone. Momma was also a believer in God, a praying woman who was very active in her church and community. She was known for putting on special programs and plays, like the “Slabtown Convention”, to raise money for the church. I remember being in those plays growing up and how much fun it was to dress in grown-up clothes and shoes.
Momma was a lady who knew what she wanted. She was decisive about her life, and it only made sense that she’d want to be decisive about her death too, to the extent possible. She and my dad took the initiative early on to make advance preparations for their funerals and burials. They bought and paid for burial plots and caskets, completed their wills, but did not have advance directive documents for their healthcare decisions. These actions were taken after I went to visit my parents in 2006 to share a new booklet I had written as part of my Masters in Social Work thesis. My booklet was written to help people of color better understand medical terms and options pertaining to healthcare decision-making so they could take control of their own pre-planning needs. I was so excited to share it with Momma because I had used her picture on the cover.
I’ll always remember her face beaming with delight as she began to read the cover of the booklet aloud, “The African American Spiritual and Ethical Guide to End-of-Life-Care: What Y’all Gon’ Do With Me?” Momma really liked the subtitle. She looked up at me and said, “Well… What y’all gon’ do with me?” I wasn’t expecting her response, so I laughed and said to her, “Well, Momma, what do you want us to do with you?” She thought for a minute and then said emphatically, “I don’t want to be hooked up to all those machines if I can’t breathe on my own!” She continued to tell me what her wishes would be if she was unable to speak for herself. I then explained to her what an advance directive is (a legal document that tells your doctor your healthcare wishes) and removed the sample document from my booklet. I asked Momma to write down what she told me so that our family (and her doctors) could honor her decisions. Momma did not hesitate once she understood the purpose of an advance directive and proceeded to complete the form.
She was in good health at that time, but one year later, she had a brain aneurysm and a massive stroke that left her unable to care for herself. She required 24-7 care. Although she was able to regain her ability to communicate, she no longer was able to walk without a walker or complete the tasks of daily living on her own. I saw Momma change from being a highly energetic, always busy person to becoming someone who sat in a chair all day, looking at television game shows and news channels. All of those people who used to come around to eat her delicious homemade meals, had dwindled down to just a few and then almost none. The sound of the house phone that used to ring constantly where Mom would be in conversations for hours upon hours, talking and laughing with others, nearly came to a halt altogether. An occasional call would come through, but that wasn’t enough for my mother who loved interacting with others every waking hour of her life. It was beyond difficult to see her suffer in a way she couldn’t control, no longer able to do what she loved. It hurt me to see her become someone I didn’t know because of her inability to do the things she loved most.
Over the next six years, a plethora of other health conditions entered the picture, including lung cancer. When she began to decline a month prior to her death in 2018, we had another conversation about what her wishes would be if she was unable to speak for herself. She reiterated what she had said in 2006 and at her request, we updated her advance care document at the hospital. She made it clear that she did not want to be in perpetual pain and poked on when it was time to die. She wanted to die in peace, without being hooked up to machines to keep her breathing if she wasn’t able to breath on her own.
Although some family members did not agree with Momma’s decision, we were in agreement to grant her end-of-life wishes. We all felt a sense of relief, even as we grieved her impending death. When she took her last breath in the hospital’s hospice care unit, we were grateful to be with her in those final moments, surrounding her with love and prayer. “This is what she wanted,” I thought. We had honored her wishes and she transitioned peacefully.
I share this story of my mother’s journey at the end of her life for two important reasons. Firstly, my story could help someone else who may be going through grief and loss of a loved one. It’s been almost two years since Momma died, but I believe the dream I had (seeing her joyously singing with a host of other people) was a sign for me to release my grief and share parts of my mother’s life and her end-of-life experience. I believe that Death is only a mode of transport to Everlasting Life and my mother’s struggle has translated into victorious triumph. It is comforting to think that she is probably singing again, rejoicing with a loving group of new friends and family members who have gone on to the Other Side too. It is healing for me to believe that she is no longer depressed or in physical pain and unable to do for herself.
Secondly, I share my Momma’s story to make others aware of National Healthcare Decisions Day, which is on April 16, 2020. It is a special day designated for people all over the country to take a step of action to complete advance directive documents. Ask yourself, “What would my wishes be if I’m no longer able to speak or do for myself?” This can be a hard question to answer, let alone think about or even talk about, but I believe it is a necessary one. When the choice is made to have a conversation about your own healthcare wants and needs, it can be invaluable to those you love most in medical emergencies.
As a social work educator and advance care planning consultant, I have been around hundreds of patients and their family members at the end of life. Unlike my mother who chose to talk about her wishes and complete an advance directive beforehand, I find that many others have not ever had a conversation with their loved ones about what their wishes would be if unable to speak for themselves due to a life-threatening illness or accident. Research shows that many African Americans, especially older generations, are quite aware of healthcare disparities between Blacks and non-blacks. This historical difference in care has led to deep mistrust and many do not complete advance directives because they believe they would receive less than fair treatment by doing so. This misconception often results in Blacks receiving more life-sustaining measures in intensive care and less comfort-directed care at the end of life. Because my mother had completed her advance directive document before she was unable to speak for herself, she was able to convey her desire for comfort care rather than life-prolonging measures to keep her alive. Knowing what she wanted made such a difference in the medical decisions done on her behalf and also helped us stay on one accord, in spite of our differing individual opinions. Momma was in control of her end-of-life experience.
In this time of uncertainty and distress, people all over the world are being affected by the gripping spread of the coronavirus (COVID-19). I encourage everyone who has not prepared for life after now to have a conversation with your loved ones today. Tell them what your wishes would be. Then, look up the advance directive documents for your state on the Internet, print out a copy and complete it. If you’re hesitant to take the step to prepare a plan for yourself, please do it anyway for those you love—and most importantly, for those who love you—because even at the end, your voice still matters.
About the author:
Dr. Gloria Thomas Anderson is an Assistant Professor in Social Work at North Carolina State University. She is the author of “The African-American Spiritual and Ethical Guide to End-of-Life Care-What Y’all Gon’ Do With Me?” This patient educational resource is a culturally-sensitive resource to help people of color with healthcare decision-making, advance care planning, and end-of-life care options and help bridge the cultural gap in disparity. To learn more, please visit her websites, www.hearttones.com or www.eolcareguide.org.