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Mothering our Patients

We are excited to share with you this guest post from Miriam Sherk, a hospice music therapist at Mercy Hospice Trinity Health Care in Ann Arbor, Michigan. Here, Miriam reflects on the parallels and intersections of motherhood and music therapy in hospice, and considers how the roles of “mother” and “music therapist” inform one another. Please feel free to any thoughts, questions, or general comments for Miriam or about the post to help further this important discussion.

I walked into Ed’s room last winter, knowing that he would not greet me with recognition. Ed had a diagnosis of vascular dementia and his cognition had been slowly declining in his recent months in hospice. His nurse had shared with me that Ed had been crying throughout the morning “for no particular reason.” As I walked towards Ed’s bed he reached out his arms towards my 8 month pregnant belly, looked up at me and spoke the word “mother.” At this moment I felt a sense of vulnerability. Something so personal and cherished to me was being brought into the therapeutic space without warning. Feeling disarmed I hesitated briefly.

It is possible that morning that he was simply noticing that I would soon be a mother, a fact most people unabashedly pointed out upon seeing me. However, there was something in the intonation of his voice that made me interpret this word differently. Perhaps he was reminded of a time in his life when his own mother was expecting one of his six younger siblings, a time in childhood when emotional vocabulary and expression was difficult. It seemed as though he was reaching out for maternal comfort in this time of confusion and pain that he was unable to verbalize. As the tears continued to roll down his face, I took his hands in mine, setting my guitar aside, and began to sing songs in a rocking triple meter. He had identified these songs several months ago as songs his mother used to sing to him as a child. Ed closed his eyes, took deep breaths that slowed and entrained to the musical phrase and eventually fell asleep.

A few short months later, I would find myself doing just this very thing with my own newborn son. Tiny and new to the world, my son was often crying in my arms. I offered comfort and reassurance by singing lilting lullabies until his crying quieted and the small bundle in my arms softened into sleep. It was not until I became a mother that I realized how my role as a therapist in end-of-life care looks and feels so similar to mothering at times.

Many of my patients in hospice care experience both cognitive and physical decline as they near the end of life. It is not uncommon that these changes in cognition and physical abilities of a patient at the end of life distance them from their family and surroundings during a time they are in great need of emotional comfort. Patients nearing the end of life often become disoriented, confused or agitated, unable to clearly communicate their thoughts, emotions and needs. I noticed a parallel in my own witnessing of the beginning of life. I found that my newborn son was often overwhelmed with the discomfort of new life and unable to communicate his emotions and needs in a way I was able to interpret, communicating only through behavior that appeared quite agitated and distressed. At both the end and beginning of life, it seems that these discomforts can often be expressed only through actions distressing to us caregivers – aggressive behaviors such as hitting, kicking, or screaming. At a time when discomfort or pain cannot be communicated verbally, verbal responses can be inadequate in providing comfort and support.

This similarity in the needs of care recipients brings about a similarity in the needs of caregivers. Sarah, the devoted daughter and caregiver of Rose, a 95-year-old woman with heart disease, became frustrated and overwhelmed by her mother’s inability to communicate in her last weeks of life. Rose began calling out at night, picking at her clothes, and hitting Sarah when she was touched. In our visits Sarah shared that she was feeling disconnected, helpless, and inadequate. She felt as if her mother was pushing her away and she was unable to understand what she needed. I often arrived to their home to find Sarah repeating “You’re ok” or “Just relax, Mom” as her mother became increasingly restless or agitated. At these times I stepped in as music therapist to provide a comforting and supportive presence for both Sarah and Rose and a musical context for mother and daughter to be in together.

As a mother I have found myself in moments of desperation speaking or even pleading with my son, repeating phrases like I heard from Sarah, such as “you’re ok” and “everything is alright”. Like Sarah, I was feeling overwhelmed, desperate, and inadequate as a caregiver during these moments. At times my speaking voice was a calming presence, but often these pleading statements seemed to increase my son’s distress. In the beginning, even nursing was a source of stress rather than comfort as we struggled to navigate this unfamiliar and high stakes endeavor together. I felt despair when my attempts at maternal comfort through nursing were met with my son turning away and flailing his arms and legs. Recognizing these parallels with caregivers’ experiences in end-of-life care, I embodied my music therapist self and utilized music as a tool, just as I had done with Sarah and her mother. Rather than asserting that my son was “ok”, a somewhat invalidating and possible untrue statement, my singing voice allowed him to know that I was there with him as he experienced this discomfort and that we could be together in the music with no expectations.

Both at the beginning and end of life there is quite a bit of time and energy focused on meeting the physical needs of our loved one. In hospice care we refer to these daily life tasks such as feeding, toileting and bathing as activities of daily living, or ADLs. As a music therapist working in end-of-life care it can sometimes be a struggle to convey to patients’ families that the addition of music therapy can be beneficial. Often when caregivers are managing the physical needs of their loved ones they feel overwhelmed by assisting with ADLs. Many patients become agitated or uncomfortable during bathing, toileting, or changing of briefs or clothes.

I currently see Liz, an 80-year-old woman who has suffered multiple strokes, twice a week during her bath time with our hospice aid. During her bathing and changing she becomes quite distressed. Although she has difficulty speaking, she has been able to communicate verbally that she feels a lack of control over her physical self and feels the loss of her personhood and control over her end of life journey acutely when being assisted with ADLs. Music therapy, during her times of bathing and changing, rearranges Liz’s role from a passive recipient to a person actively engaging with two other adult women through singing, listening, or choosing familiar music. The music she chooses reflects a time when she was a young, able bodied woman who danced at local dance halls every weekend. Music therapy at these times provides comfort, enjoyment and the opportunity for humanizing and normalizing engagement that support her personhood and feeling of control.

Again, I found a parallel here when reflecting on my experience caring for a newborn. As a new mother it often felt as if my day consisted solely of diaper changing and nursing. Days were consumed with meeting the demanding physical needs of my baby. Upon reflection I see that music played a large part in my bonding and expression of love and care. I sang throughout the day during these repetitive and often frustrating tasks to engage with this new person and add a sense of humanity to his new life. Both in the beginning and end of life, physical and emotional needs are inseparable and to disregard the emotional needs in order to meet the physical leads to distress and disregard of personhood.

I acknowledge that birth is often followed by joy and anticipation, while death is followed by grief and loss. Birth and death also have quite different underlying anticipatory emotions experienced by caregivers but similarly, these emotions are experienced throughout a process. In hospice care our ultimate goal is to assist our patients in achieving a “good death.” This goes beyond the day of death and includes the weeks and even months both prior and subsequent to the death of a patient. Before my son was born I spent a lot of time and energy focused on doing everything in my power to achieve a “good birth.” What I did not anticipate was that my experience of my son’s birth was not limited to the time in labor and day of childbirth but included those first weeks and months of his life. Both birth and death (of those able to receive hospice care) can be viewed as monumental life stages, rather than events. They are complex journeys that require continual attention to physical and emotional needs that cannot be distinguished from one another.

I understand we are not all mothers in the literal sense. Nor do I want to convey the idea that one needs to experience the birth of a child in order to foster these nurturing therapeutic relationships with patients at the end of life. As therapists we take on many roles to our patients and reflecting on these roles through the perspective of new parenthood has been enlightening for me in my own practice. Those of us doing this work, men and women alike, embody the qualities of mothering .We are present through pain and joy, we create a space that fosters love and connection, and we provide comfort and a sense of safety when our patients experience discomfort or loss of control. It is no longer surprising to me when I sit at the bedside of patients in their final days or hours of life, and they call out to their mothers. Often their mothers are not there with them, but we are.

 

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2 thoughts on “Mothering our Patients”

  1. Wonderful piece. I started singing “Circle of Life” in my head as I read 😀
    I can connect this with my own experience in pediatric end-of-life care, where we can support the mother-child relationship. Especially when there are no words left to describe the feelings going on in that relationship.

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