I’m Allergic to Being Called a “Caregiver”

When we attended our first Multiple Myeloma support group meeting, Judith had just received her catastrophic diagnosis of an incurable cancer. Everyone was introduced as either the “patient” or their “caregiver.”  I immediately responded, “I am family, I am Judith’s partner”. I wasn’t going to start off this cancer journey suddenly transforming our relationship from lifepartners to “patient/caregiver”.  I was new to this cancer experience, but this much I knew.

In the four years since that support group meeting I have consistently been referred to as the caregiver by professionals in the cancer world and I find it very limiting.   We are so much more to each other.  I prefer the concept of carepartnering or caresharing which values mutuality.

In all this time I have yearned to hear the professionals help us go beyond the labels of “patient/caregiver” and help us focus on the importance of our relationship surviving and thriving during challenging times affected by the cancer.

One way to rethink these unhelpful labels is to highlight what we each give to the other, and to focus on our mutuality of care even when there were periods when the medical or emotional issues of one of us takes center stage.

I get so much care from my partner Judith every day.  It could be insulting for me to call myself her caregiver.   We are both 62. In the four years since her diagnosis, Judith has had many emotional and physical care needs and so have I.  We have been there for each other through very trying times.  For example, Judith went through many tests that led to her diagnosis including a bone marrow biopsy. She left an important job and got on disability. She had surgery and radiation that required a period of recovery. She has been on almost continual chemotherapy often paired with strong steroids, troubling side effects and nearly impossible treatment decisions to make.  She has gone to many educational conferences, participated in support groups, had a stem cell transplant with months of recovery, experienced more side effects, had to make more decisions, and always worries if she made the right treatment choices.  Outside of the stem cell transplant, Judith has not been in the ICU or hospitalized and her care needs have been manageable by her, me and friends.

She has been a caresharer for her biological family.  When she was diagnosed, learning to pull back to focus on her own health was a huge challenge. One of her worst fears was realized when her own mother died during her stem cell transplant and then helping her grieving stepmother sell their apartment and move across country became the next ‘right thing to do’. She did her best to support all of this from long distance.

In these same four years, I cared for my elderly father who then died, made significant job and benefits changes, suffered a broken toe during Judith’s transplant, and later had a bad fall resulting in pain and treatment for almost a year. My work as a Palliative Care chaplain is emotionally and spiritually challenging and requires a lot of emotional support from Judith. Together we bought a new house and did a great deal of work getting it functional.  Through it all, we have cared for each other, even when it’s been temporarily uneven on either side.

I do anticipate there might be a time when Judith will require a lot more physical care.  But given our ages, I can imagine the ball swinging the other way, too.

I want the professionals and my community to remind us that we are love partners first and foremost. When the other’s care needs require center stage I hope to remember we are carepartners, giving and receiving, having given each other so much throughout our 24 years together.

Of course, cancer impacts family members very differently than the person with cancer.  There is great value in workshops, support groups, books and conferences that address the different needs that support people have.  My worries as a family member are different than hers as the person living with cancer, and I find it helpful to have space to be able to talk about that.  (In Judith’s support group they laughed about how they all preferred to be the one with cancer rather than the one witnessing the one with cancer.)

I find the identity as “caregiver” a barrier to healing and growing because it creates a separation between, rather than a connection.  To me, the word “caregiver” signifies a professional, underpaid angel that makes his or her living dedicated to the care of someone in need.  In some families there are enough family members to share those tasks.  When they do, they don’t usually give up their family identity.  Family care is given out of responsibility and love.  One family member often is identified as the main person who does the daily physical caregiving, however, they are first and foremost seen as family. motivated by love and/or responsibility. As a chaplain I witness family members and friends care for very sick people, many who will never recover mentally or physically.  It is the love they feel for their person that keeps them energized and committed.  Even when care is given out of duty, there seems to be an underlying sense of reciprocity.  “She deserves this, she cared me all those years.” “I love her, I want the best for her.”

I recognize that there are many people whose role caring for a parent, sibling, partner, child or friend is grueling when they are the only one caring for someone with great, 24 hours needs and the other person has little to no capacity to give back in any way.  At those times it may be even more important to identify the primary relationship that brought them to the choice to care for them even when it might not have felt like a choice.  Is it 60 years of marriage with a history of mutuality, or being an adult child caring for a parent who cared for them when they were young? Is it the value of doing the right thing when there is no one else?  I worry that if we see ourselves solely as the caregiver and do not feel any relationship with the other, then burn out is soon to follow.   And for some, the concept of carepartnering or caresharing may just not fit.

My mother had dementia and other health issues requiring a lot of care for many years, first in her home, and then in a nearby assisted living facility where she lived with my dad. One day I visited her with my dear friend who is a chaplain and a very smart, compassionate woman.  My mother was ailing, and we didn’t know it was about a month before she was going to die. My friend reflected with me that during the entire visit I was focused on caregiving tasks. “Can I get you some water? Are you cold?  Want some fruit, let me clean that up, etc.” She commented that I was caring, but she didn’t see me just be with her, to relate to my mom just as her daughter.  I regret that I only had a few weeks to try and reorient the way I was with her before she died.  I wish someone had pointed this out years earlier.

My hope is that when we walk into a doctor’s office or support group meeting, we won’t be narrowly defined as patient and caregiver.   There is so much more to both of us.  When it gets tougher with Judith’s health, I pray that I will always remember that we are partners of love first and that no matter what tasks need to be done, that I will remember we are carepartners for each other, to the very end of this life together.