General

Family From the Inside

In April, Meghan posted in about her experience being “inside” hospice, on the receiving end as a family member who was losing a loved one (click here for Meghan’s post).  The experience of a family member is a much different experience from that of a service provider who, being on the “outside,” is not thoroughly detached but certainly stands in a different place. The hospice worker approaches the situation from a different angle, having a different relationship to the patient and a different role in the patient’s life and care.

The difference is obvious, right? I thought so. Then, all of a sudden, just a few weeks ago I found myself on the inside.

I haven’t been on the inside since becoming a hospice professional. All along, the dividing lines between my professional and personal lives had been fairly clear. I have been very grateful for the wisdom my music therapy professors and supervisors imparted as to how to keep my personal life out of my work. As for keeping work out of my personal life, I thought HIPAA and a “clock-out” time were all I needed.

Hospice work pulled a fast one on me, though, and crept very subtly into my life outside of work. Early on I noticed that I was seeing the world through hospice-colored glasses. In particular, when I saw my grandmother I would mentally document my observations of her decline, almost without even noticing it. Fortunately, eventually I did notice it, but I didn’t know quite what to do with those observations.

Over the past year, her condition worsened. I continually had to stop myself from proclaiming to my family that the end was near. Everyone was concerned about her health, for sure, but her mind was clear, her will was strong, and her rebounds repeatedly surprised us.

Then an unexpected injury to her weakened frame posed a challenge to her intent to continue living independently. “Now is the time!” I thought. “Hospice to the rescue!” A nurse, an aide, durable medical equipment, maybe even a music therapist would be available. I was aware it might be hard for my family to hear the word “hospice,” but the initial alarm would surely wane when they realized how much hospice would help.

I was not prepared for the shockwave that came from my brilliant plan to initiate hospice. The myth that hospice functions only for those who are days from death is still alive and well, and as a result my suggestion equated to an announcement to family members far and wide that death had arrived at my grandmother’s door. My confidence was suddenly tinged with regret for what had felt like a sensitively delivered, well-intended suggestion. My confidence quickly turned to regret. The question “What have I done?” went through my mind as I clarified my reasoning to everyone. I explained I was almost positive she qualified for services, certain she would benefit from them, and comfortable that if she rebounded again she could sign off. However, I couldn’t erase the emotional distress that they had just experienced.

I was left feeling like I had blundered, and a sense of isolation and uncertainty began to set in. I wish that had been the last blunder in the story. Unfortunately, it was not. As her recovery crawled at an almost imperceptible rate and other symptoms began to appear, my family members began the emotional and logistical tasks of caring for a newly dependent elderly person. Her prognosis seemed to be shortening, and it was enough to make clear the painful truth that she was, in fact, really going to die at some point. When a family member was struck with this realization and began to cry, I didn’t know what to do. Would it help to name what they were experiencing? If I explained that it was anticipatory grief, would they feel reassured that it was okay to grieve right now? Or would that halt a healthy process and cause them to intellectualize their emotions? Yet, maybe all they needed was a hug.

I wanted to help my family. I thought my professional hospice experience would be a goldmine for them. What I didn’t realize is that it was going to feel more like a landmine to me. There were times when my “expertise” seemed absolutely worthless to those of us who loved her. None of it mattered because it didn’t stop us from hurting. Sometimes it even made things worse. The emotional boundaries that served me so well at work were getting in my way because they did not belong in this situation.

So, how in the world was I supposed to be a member of my family now? Just when I realized I needed to work on my boundaries, put my expertise and prognosticating powers on the shelf, and maybe write a post to start a conversation with all of you about how to be a family member, my grandmother was admitted to hospice. Hours later, the nurses said she wouldn’t make it through the night.

In the whirlwind that followed, I forgot all about writing (and many other things). But what I did manage to accomplish was to slip back into my rightful roles as a granddaughter, daughter, niece, sister, and cousin. Even in those difficult hours, I knew this approach was working better than the previous one. Here are some insights I had gained in the preceding months, weeks, and days that allowed me to keep my professional life from invading my personal life in those moments.

Insight #1:  My perspective is biased.

Again, the hospice-colored glasses can cause problems. When I wore those lenses, my grandmother’s condition, prognosis, and needs were always tinted. Sometimes they actually blurred my vision of my grandmother’s, my family’s and my own actual needs, like when I didn’t know how to react to a grieving family member (who just needed a hug).

Insight #2:  Wait to be asked.

Everyone in my family knows I work in hospice. They didn’t need me to tell them that, or to broadcast my knowledge in order to prove it. When they were curious about my perspective, and emotionally ready for whatever the answer might be, they did come to me.

Insight #3:  When they ask, remember Insight #1.

Insight #4:  Losing a loved one is not normal.

Death may happen every day at work, but it doesn’t happen every day in my family. It made no sense to try to talk about it with my family (or myself) like it was normal. The only exception was when they asked for factual information. Then, it helped them for me to speak sensitively from a place of calmness and familiarity with the physiological process.

I also needed to stop criticizing myself for the discomfort I was feeling as well as my increasing mental and emotional disorganization. I was asked multiple times, “Do you see this every day?” I do see the dying process very often. But the fact of the matter was I had never seen my grandmother die before. When grief hit after she passed away, and I lost my ability to reason, I questioned the legitimacy of my emotions. After all, I had seen this coming from a mile away. This should be no big deal, right? But, with gratitude to Meghan, Noah, and Kristen, as well as other colleagues and friends, I was reminded this was not a normal part of my life. She was gone, and I still needed to grieve. More to the point, I was allowed.

Insight #5 came later, but I’ll share it here anyway: It may be okay to musick.

Meghan wrote about musicking with her mother. As for me, though, even after I got my boundaries on, I did not believe I could straddle that line between being a music therapist and family member if music was in the picture. At her bedside, I didn’t want to feel like a music therapist, or confuse anyone who might think that what I was doing was music therapy.

Later, when there was more time (and ability) to think, I remembered playing the guitar at my grandfather’s bedside as he was dying. That had been a meaningful experience for me and, notably, for my grandmother as well. Now I regret not having let my grandmother and I have that experience together when it might have brought her comfort. Perhaps I was too tied up with my boundaries. Or maybe it really wasn’t the right time for either one of us, having come to that final stage so suddenly. Either way, I know that next time I’m saying goodbye to someone I love, if I want to musick, I’m going to let it happen.

These insights allowed me to be on the inside of my family again. They also refreshed my perspective on hospice work. Insight #1 re-emphasized that not being a family member to my patients enables me to serve them effectively, precluding some of the biases that relational attachments introduce. I think Insight #2 is applicable to my professional work, too, although as therapists we need to be tuned into when people are “asking” without the use of words. Hopefully Insight #4 will keep me from asking insensitive questions to family members like, “How is he doing?” To me, apnea is normal. But to the family, it is not normal. That question will only drive home the strangeness they wish they could escape. Finally, Insight #5 reminds me that music is normal, in different ways for different people, and it holds incredible potential by allowing people to escape without leaving the bedside.

Thanks for the insights, Gamme.

(“Gamme,” derived from the Old English word for “mother,” was the name by which she was known to her grandchildren. The hospice staff called her Phyllis. She died on May 8, 2014.)

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4 thoughts on “Family From the Inside”

  1. Thank you for sharing your experience, and allowing yourself to be vulnerable and honest. Your perspective definitely adds a new dimension to my work in hospice. Beautiful.

  2. Beautifully and insightfully written, Jillian. Thank you for putting this out there. Wishing you peace in your journey.

  3. Jill,
    I had a very similar experience during the dying process of my grandmother, frantically calling music therapists to come and be with my family. In the end, I forgot to take the time to actually be family. Beautifully written.

  4. Hi Jillian:

    I am sorry for the loss of your grandmother. I find your ability to reflect so deeply about yourself and your work beautiful. As a supervisor, I try to help other therapists bring this level of intentionality and contemplation to their work in spite of hectic schedules and chaos. I am touched by your vulnerability and heartened by the compassion you were able to show yourself.

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