Based on her caregiving experience, Natasha Billawala explores five opportunities that could improve the end-of-life experience for the dying and their families.
By Natasha Billawala, End Well eCaregiver
On December 12, 2012, my mother, Stella, was diagnosed with ALS — more commonly known as Lou Gehrig’s disease — and my world shattered. I had no idea how I would live without my dear mom, let alone watch her become paralyzed and face the uncertainty of how she would pass. My father had died just two years prior, and facing another loss seemed insurmountable.
However, all was not lost. At the time of diagnosis, I was given the opportunity to do intense therapeutic work. I thought immersing myself in personal development would help me as I navigated the abyss of my mother’s care. Instead, I found myself in the middle of a process that pushed me even further out of my comfort zone and challenged me to look at the way I interacted in all my relationships — most especially the one I had with myself.
Four months into the process, I really questioned what I was doing, but as I continued to explore my beliefs and behaviors I discovered so many traditional and nontraditional healing modalities that helped me move through my feelings and showed me how to live well in any circumstance. My challenges didn’t necessarily change, but my approach to them shifted because I knew that putting myself first was crucial to living well. I realized taking better care of myself translated to taking better care of mom.
The result of my healing endeavors had an incredible outcome. By the time my mom died, I never felt like she left me. Her death in 2015 was devastating, but as soon as she passed I experienced an unexplainable contentment that inspired me to write my first book, “The Privilege of Watching My Mother Die.” I now say ALS was my mom’s last and greatest gift to me.
Experiencing loss is big enough on its own, but illness, unbalanced family dynamics, financial limitations, and other factors compound an already distressing situation. It’s time to stop avoiding our concerns about loss and what happens after death and approach these issues from a proactive perspective — one that welcomes what’s best for our well-being rather than pretending we’re coping while suffering on the inside.
Somewhere in our evolution, we decided that if we didn’t talk about certain topics, we could escape the pain and potential awkwardness that comes with them. It’s time to speak frankly about death, illness, belief, and mental health, and enjoy it. It’s so much more fun to live consciously rather than staying blind to what challenges you.
If we truly want to create a humane end-of-life experience, the following recommendations could have a tremendous impact:
- Honor mental health
Some things are too big to handle alone, and some stuff is too good to keep to yourself. We all need a different perspective and emotional support, especially when we’re dealing with loss. There were many moments when I had to choose between being a daughter and being a caregiver. Having a place to discuss the weight of responsibility on my shoulders was vital.
- Empathetic medical care
Empathy requires feeling with a patient or caregiver. This may be challenging if providers haven’t seen this kind of behavior modeled. The doctors who told my mom she had ALS did so in a dismissive, detached manner, and then ushered us out the door — shellshocked. When it came to hospice care, the company was good at providing supplies and basic medical care, but empathy and compassion were severely lacking. It seemed as if corporate control had sucked the humanity out of the organization. Empathy training in the medical arts could make a world of difference.
- Trust/estate planning
My parents planned for their death while they were healthy, so I was clear about their advance healthcare directives and how to take care of their remains. Establishing a trust allows loved ones to be prepared before a crisis occurs and alleviates a lot of unnecessary pressure and uncertainty. People may think it’s unaffordable, but it costs less than probate.
- Death doula
I didn’t learn about death doulas until after my mom passed, but I would have jumped at the chance to have someone to guide me through the process. If we can have a doula to bring in life, why not have one to support us when we leave it?
- Dealing with lasts
I was so aware of lasts during my mom’s illness: Would this be our last meal alone? Would this be the last time we shopped together? Would this be my last Mother’s Day? I discovered that not all last moments are precious, and there’s pressure to make them so when someone is dying. Acknowledging this let me be with my mom without letting fear dominate my thoughts.
Natasha Billawala is writer with a true connection to the written language. She began freelancing when her mother was diagnosed with ALS, and her body of work includes screenplays, marketing materials, email campaigns, speeches, social media, articles, and blogs.
During her mother illness, Natasha began a journey into self-care, which led her to write her first book, “The Privilege of Watching My Mother Die.” She is in the process of writing her second book and is compiling notes for her third, all of which focus on self-care. Natasha intends to start a national conversation on self-love and the importance of having an outlet to process our feelings. Her writing goal in all endeavors is to bring emotional resonance back to the entertainment experience.