Noah Potvin writes on Relationship Development During Prebereavement with Longterm Caregivers

Hello all,

If you’ve been following this blog you may have noticed that I have been re-posting all of the wonderfully written posts dealing with concept of relationship in music therapy. This topic  (relationship in music therapy) has recently surfaced many times on several Facebook forums and has generated some rich dialogue between music therapists working in a variety of clinical settings.  The recent dialogue has inspired me to dive into my blog archives and dig up several posts on relationship in music therapy. I want to again thank my talented colleagues for sharing their work and ideas on this blog: Dr. Brian Abrams, Dr. Nancy Jackson, Suzannah Scott-Moncrieff,   and Noah Potvin. 

In this post, Noah Potvin shares his thoughts and ideas on relationship in end-of-life care.  Thanks in advance for reading and I encourage you to please feel free to share your thoughts!

Relationship Development During Prebereavement with Longterm Caregivers

Found you in a corner
Why’d you close your eyes?
I see you


 Longterm caregivers (individuals who have been the primary caregiver for at least 10 years) often experience a profound isolation from themselves and their various communities that can evolve, especially when the carereceipient received end-of-life care, into an existential crisis that calls into question their life trajectory. Longterm caregivers are often thrust into this role due to sudden and unforeseen developments, e.g. devastating accidents, massive CVAs, sudden diagnoses of late stage asymptomatic diseases (such as pancreatic cancer), and diagnoses of diseases that frequently manifest midlife (such as MS or ALS) or have an early onset (such as Alzheimers). As suddenly and dramatically as these developments alter the logistics of daily routines and quality of life, they irrevocably alter the means by which two (or more) people relate.

If we understand a relationship to be a composite of intersubjective roles assumed by each member of the dyad, then there is considerable danger in the caregiver role subsuming or outright replacing other roles (lover, friend, mentor, confidante, etc…) and becoming the primary identify. Now, the individual who once related to their loved one as Spouse, Partner, Sibling, or Child is only able to truly relate as Caregiver. Two significant dangers can develop as a result. The first is lost or confused motivation: when the caregiver becomes exclusively Caregiver and does not invest in the relationship as a devoted wife or husband, or loving son or daughter, then the caregiver becomes detached from the meaning-making that had defined the dyad up to that point. Once detached, the carerecipient is at risk of becoming an object to complete tasks for, rather than a loved one for whom to provide an act of service. Care in the pursuit of improved quality of life and meaningful shared experiences are reduced to basic functions, such as providing a bath and changing clothes, that are bereft of meaning. The second danger is caregivers losing sight of themselves and ultimately their own needs. Their compassion and empathy is poured into others with none left to promote their own emotional and spiritual wellness.

Always in the corner
I hear them telling lies
I see you

Given this limited means of relating and damaged process of relationship building, my first step upon first meeting a caregiver is to be with them in the moments between the moments. For me, this means not simply sharing in the physical space but listening to what is not being said, seeing what is not being shown, and making space for the emotional/psychic content that is not being shared.

To provide myself the means by which to access this level of sensitivity and awareness, I have accepted as a fundamental tenant that never before has this singular person lost this other singular person to death. Even if I have lost a spouse, parent, sibling, or child, those relationships (and losses) were my own; my empathy will be just as limited as if I had not experienced that loss at all. This unique being has developed a relationship with this other unique being that has never been before and will never be afterwards. Thus, the experiences of prebereavement during the dying process, loss during the death event, and grief in the coming days and months are all wholly unique from all other prebereavement, loss, and grief experiences that have ever taken place.

What do you see from the corner?
Is it bigger than the sky?
Show me now


 Understanding this frees me from attempting to empathize, or “feel with” those distinct experiences. Instead, I can access (to the best I’m able) the basic human condition that informs these experiences, where an emotion is more of a state of being unattached to any particular stimulus. Using sadness as an example, if I access the well of sadness that we all draw from, I can be in touch with the state of being that is shaping that caregivers experience and providing a lens for the caregiver to perceive and understand what is going on around him/her. If I can be in touch with the energy that sadness carries with it, I’m provided a starting point for accommodating my awareness of what that caregiver’s unique experience with sadness is in that moment.

Always in the corner
They don’t see your sky
Show me now

Caregivers are responsive to this effort to avoid defining their experiences by either my own or those of other clients. Without a concrete framework of grief and loss or constructs of “right” and “wrong” to feel forced into, they build a safe space for their own complicated experience to be whatever it needs to be in that moment. Similarly, by avoiding “feeling with” their distinct experiences, I can limit any unconscious projections of these undesirable elements into the process.

 It is this type of collaborative process where wellness can begin to be explored by tapping into music’s malleable, intersubjective qualities that construct meaningful shared experiences between therapist and client. These jointly constructed shared experiences, so filled with individual meaning derived from their intrapsychic world, have often been missing from the caregivers’ life. It stands in stark contrast to the rudimentary completion of caregiving tasks by providing caregivers the opportunity to construct personal, self-oriented meaning through explorations of their world and their place in the world. Here, they can become reacquainted with themselves and their needs, desires, and wants. They can gain greater access to their long ignored emotional centers, and experience and move through the long suppressed emotional content. Particularly potent themes that have emerged in the past are anger at loved one for getting sick, sadness at their isolation from their communities, and shame mixed with relief at the thought of their loved one passing away and relieving them of the burden of care.

Take me to your corner
Watch your sunshine rise
Beautiful

When this content begins to flow, the music’s role shifts from stimulating the caregiver’s center of being and eliciting meaningful intrapersonal content to holding and conforming to the shape of the space as the caregiver constructs it. At the same time my role, as a being distinct and removed from their unique experience, is to bear witness. To be a witness is to be an active “being” rather than an active “doer”.  I have to be willing to step into the world they have constructed within the therapeutic space that day. Bearing witness also requires making room within my Self to receive and be shaped by the caregivers emotional and psychic energy. I want to make sure to hold that content for as long as it wants or needs to be held, but without absorbing it into my own being. If I absorb it, then I’m assuming a part of their experience for them; instead, it is my intent to reflect it back so that they can move through their experience themselves.

 Through this collaborative effort, the caregivers’ internal world, so frequently neglected for the perceived benefit of the carerecipient, is validated and put first. They can reacquaint themselves with what it means to experience rather than mute their emotional and spiritual needs. The arrested development of the Self that began when they assumed caregiver as an identity can cease, and they can once more be a dynamic being. Once more activated as a being, they are able to receive the carerecipient as a loved one, and appreciate the whole person and not simply treat the illness by which they were previously defined. The relationship that helped set them on their life course has the opportunity to be successfully completed at the end.                       

Together in the corner
We will close our eyes
I see you

*Corner Girl, by Abigail Washburn

To contact Noah: Email: npotvin@gmail.com

Bio:

Noah Potvin, MMT, MT-BC, is a music therapist at Seasons Hospice in Delaware, and an alumnus of Temple University. His current clinical focus is on work with caregivers through the prebereavement and bereavement processes and understanding aesthetic experiences at the end-of-life. He currently serves on the CBMT Exam Committee, the MAR Public Relations Committee and as an alternate for the Assembly of Delegates, and was the 2009/2010 co-coordinator for the MAR Passages Conference for students and new professionals. He has presented nationally and regionally on clinical work with those impacted by death and the dying process.

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