Note: This is a guest post by Jennifer Swanson, taking part in our Origins series about how music therapists working in end-of-life care trace their connection to this work. For more information about Jennifer, please refer to the “Contributors” tab. If you are interested in contributing a piece to the Origins series, please read more from our Call for Submissions.
How did I, the woman with initial aspirations to use music therapy to change the world by bringing together people in battling nations, or empowering women in Middle Eastern countries, or using music as joining language between different cultures, end up working with people at the very end of life?
My initial interest in end of life work stemmed from a graduate school class on the topic. I then entered the field thinking that I would see a few patients and family members each day, engage them in weekly music interventions that would be akin to individual or group psychotherapy, be a co-pilot or passenger with them on the ride towards the very end of life, and somehow help guide all my patients and family members towards finding closure and acceptance. I also had other more personal expectations for hospice work. These include witnessing absolute strength in the face of impending loss of life, understanding how spirituality and religion can actually be positive, and maybe facing my own fears related to death, dying, and loss of loved ones.
I work for a pretty large hospice company, and have been disheartened about the actual therapy work I am able to do with a very large caseload and territory, among other issues. However, the above listed personal expectations for the work continue to play out regularly.
As Meghan said in a previous entry, “we all have needs that we bring to the work and that we hope to heal, often at an unconscious level.” Below is a description of mine, most of which were not so clear when I first started in hospice.
How do people cope with terminal illness and death, some of the most difficult obstacles in life? After a childhood that felt riddled with anxiety and drama over not much, as an adult I wanted to see that people can navigate through incredible difficulty while retaining dignity, strength in character, and maybe even optimism. During my time in hospice so far, I have seen a broad spectrum of coping strategies. The people that really stay with me however, are the resilient heroines: the spouse who visited her husband with Alzheimer’s in the nursing home 6 days a week for 7 years; the patient who despite declining health retained pride and dignity in the memories and associated wisdom she constantly shared; the 102 year old patient who has watched everyone die around her but approaches everyday as a miracle, and is still excited to form new relationships; the spouse whose faith in God gave her strength when her too young husband was diagnosed and then dead within 3 months… I could go on.
Can religion and spirituality be more purely positive at the end of life? I grew up in a mostly Atheist home where religion was viewed negatively because of the separation and conflict it helped create within my extended family. Spirituality as something separate from religion was never talked about. However, as I was making the decision to work in hospice I was also beginning to understand my own spirituality, which largely lies in the transcendent powers of music. There is no denying that end of life care has a pretty consistent spiritual element, whether that be a patient or family member in spiritual crisis, a patient who dies exactly with the words, “take me home country roads,” or myself forgoing paperwork on a whim and then arriving at a patient’s home 20 minutes before he takes his last breath. I so often witness moments that are larger than us all and can’t be explained. I can no longer deny that something spiritual exists among us, and perhaps religion is just an attempt to organize that. And at the end of life it sure doesn’t hurt to have religion.
Finally, are death and loss really so terrifying? So far, lucky for me, death and loss have been fairly distant from my life on a personal level. However, we all know that death, dying, loss, and illness will be inevitable within all of our lives. Perhaps I wanted to “learn” about it before I had to actually deal with it. Or maybe I thought I could get over my fears. (I haven’t.) I definitely wanted to be closer to it, as our culture tends to throw death and dying to the wayside, which ultimately has negatively impacted how we treat humans who are terminally ill and elderly. Hospice care has allowed me to be closer to death than I ever thought I wanted to be, and has shaped my view of dying into a very important stage of living. I now more fully embrace my mortality as well as my fears surrounding it, and the above mentioned “heroines” have provided great examples for coping with loss.
I don’t think that I will spend my entire career as a hospice music therapist. I know that the lessons I have learned and the amazing people I have been privileged to be with will stay with me for a long time to come, and will influence how my career takes shape. I also have a much deeper understanding of the preciousness of life, and know that each moment should be noticed, appreciated, and filled with gratitude. Rather than changing the world on a large scale, I find myself companioning patients and families in changing, or embracing, mere moments; and this certainly has changed me.