Yesterday was the third-year anniversary of my mother’s burial. I spent the last week of her life with her in her home, and although I was exhausted mentally and physically from all that caring for a loved one entails, I also knew that I was witnessing a mystery comparable to birth and felt honored to be able to provide comfort as she made her transition.

Birth and death are the two mysteries that create the bookends for this experience we call life. The arrogance of our human ego and the actuary tables of longevity lead us to believe that we are guaranteed a certain number of days and years on this earth. And even though many people of Christian faith talk a lot about the joy of the afterlife, few, it seems, welcome death when it is knocking at their door.

Buddhist monks are the ones who seem to understand death as just a natural continuum of life.

“Awareness of death is the very bedrock of the path. Until you have developed this awareness, all other practices are useless.” -the Dalai Lama

The most important moment of our life will be the moment of our death. Don’t expect that at that time you will automatically know what to do. We all die according to how we have lived, so the best way to prepare for a good death is to live a good life. Before you know it, your life will be over, and it will be time to die.

You might be thinking by now that this is a morbid topic for the holidays, but, for all the celebrating, holidays are also a time, when the loss of a loved one can evoke sadness and even despair.

The Loss of Patients

This past year, three former patients, and members of my weekly speech group, the LOUD Crowd passed away. Two of the men had been diagnosed with Parkinson’s at the height of their careers, and at the time of their death had lived over 25 years with PD. The other member had a diagnosis of Multiple System Atrophy, and his death came a sudden shock to all of us, as it occurred within a couple of weeks of his presence in our class. And, although we acknowledged their deaths, we never spoke about it as a group. And I wonder if I should have started the conversation?

I am sure that many of my colleagues who work in hospital settings also experienced an unusually high number of patient deaths this year due to the COVID pandemic and hence, may also be trying to place death in the continuum of life.

Making health care decisions at a crisis point is always difficult, and slightly easier if the patient’s preferences are known. But the type of discussion that makes an Advance Directive a meaningful document do not often take place while we are young or healthy. In fact, it’s hard to engage people in conversations about the “what ifs” of dying or terminal care, and, even harder to anticipate correctly what decisions we might make, even knowing we can change our mind.

As healthcare providers, trained to “cure” disease and rehabilitate disorders, we are not always comfortable or experienced in talking with patients about dying. Afterall, they’re coming to us for help, and if we bring up dying, how can they trust that we have anything to offer them in the meantime?

I am embarking on a certification course in end-of-life care, a topic I am currently drawn to. I am not sure if at its conclusion that I will be any wiser or more prepared to discuss the topic of dying with patients, but from what I am learning so far, maybe I don’t really need to do anything. Perhaps it’s enough to ask a simple question: “what about your diagnosis scares you?” And then, just listen.

Photo by Matthias Zomer from Pexels

Charlotte County LOUD Crowd Holiday Party

The LOUD Crowd is an after- therapy speech class that has been meeting since October of 2016. In 2020 when we shifted to ZOOM meetings, our group grew with members joining from various parts of Florida. This past Thursday LOUD Crowd members and their +1 got together for a holiday party. For many of the members it was the first time they had met in person. We were joined by Isabel Bitler, a young singer songwriter, who entertained us and led us in some familiar songs. It was a wonderful afternoon of fellowship and a reminder that no one has to navigate the Parkinson’s Road alone.

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From My home to Yours have a Happy and Healthy Holiday season. 

My Mission: To enlist individuals in their treatment, and help them express their personality & spirit through voice. To educate  and empower. Mary Spremulli, MA, CCC-SLP * FiTOUR® Group Exercise Instructor * Voice Aerobics® A Whole Body Approach to Voice Practice

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