I know cancer as the death of my father, when I was 24, in 1980. I know cancer as an experience of my own body and soul, which I survived in 1997. I know cancer as each additional member of my family had hers, too. I know cancer as the final loss of my beloved sister, in 2014, at 49, after seven years of living valiantly with ovarian cancer. Next to her wife, I was the closest caregiver. Outside my work, she was the center of my life for those years.
I am no stranger to cancer.
I’ve had family members and partners as caregivers. I’ve been a caregiver for others in my family. When I had my cancer, I participated in the Commonweal Cancer Help Program. When my sister was living with cancer, she came with me to reunion days. There have always been people with cancer and those who care for them in the group.
A year after my sister died, someone invited caregivers from within the Commonweal Cancer Help community to form a small, closed email group where we could explore our experiences. As we were beginning to explore the immense challenges that being a caregiver presents, Daniel, another member of that community, brought up the Caregivers Bill of Rights. This document, put together by Jo Horne in her book Caregiving: Helping an Aging Loved One, circulates widely on the internet. Its purpose, which I fully support, is to empower caregivers to care for themselves.
Its purpose, which I fully support, is to empower caregivers to care for themselves.
I had never heard of this document until Daniel spoke of it. He shared that his wife, whom he lost three years earlier, also to ovarian cancer, got angry when he presented this “bill of rights” to her. When I looked it up, I was not surprised. The one that I found most challenging was this one: “To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.” Daniel himself also has an understanding of what might have been going on for his wife when he added (quoting with his permission):
Looking back, I wonder if I like ‘A Caregivers Bill of Rights.’ It seems to make sense, but I wonder about the reference to the American Revolution and Constitution. It seems adversarial. It says things that need to be said, but now I don’t like the way it says them.
I took it upon myself to rewrite it in the language of needs.
I don’t know why, specifically, Daniel’s wife became angry. Having been on both sides, with the same person, I didn’t like this document from either direction. Yet I also instantly understood why people would want something like this to exist. So I took it upon myself to rewrite it in the language of needs. Halfway through, I began to exchange emails with Daniel, which invited us into much more authenticity and vulnerability, resulting in a deeper human closeness and the idea to write about this.
What caregivers need
My exchange with Daniel helped me understand why a Bill of Rights would be appealing. When we don’t allow ourselves to have needs, only rights can give us inner permission to do something to attend to our needs. As Daniel said: “Recasting and restating ‘rights’ into needs is exactly what I needed to learn more about my experience taking care of Ann. Part of the problem for me was not understanding my pain as unmet needs that might be addressed and, at least, partly satisfied.”
I like the language of needs better because it is a language that connects through vulnerability, while the language of rights separates through false strength.
Here, then, is the original list of “rights,” changed sufficiently to adapt them to the frame of needs. I like the language of needs better because it is a language that connects through vulnerability, while the language of rights separates through false strength; a wall we erect to protect that which we barely know how to sense and speak from. This new list is written with two hopes: to support caregivers in building relationships of authenticity and intimacy with those they care for, and to support anyone to connect more deeply with our needs and relearn to express them.
I follow each item with commentary about the reason for changes. One change that runs through all of them is that I took out any explanation and justification for the need. We are human. We have needs. This is how life operates. Trying to justify the need, to me, speaks to the struggle with self-acceptance of the needs to begin with. I return to this point below.
My caregivers list of needs
- I need to take care of myself.
- I need support from others. I recognize the limits of my own endurance and strength.
I took out the phrase “even though my loved one may object” because it speaks to a different need I address later.
I see this need for support as absolutely core and central. Daniel said to us, when he opened the conversation: “Don’t do it alone. I did it alone too long and, looking back at myself in her last few months, I think I look a little desperate. That scares me. I was too alone.” Later in our exchanges he added: “The less alone I was, the better I felt.”
- I need some balance in my life that might include maintaining facets of my own life that do not include the person I care for.
I added “that might include” because not everyone needs the specific focus on other facets of life while everyone needs balance, some way of honoring limits.
- I need spaces where I can express all of my feelings, including the most difficult ones.
The original language—“To get angry, be depressed, and express other difficult feelings occasionally”—implies to me that the caregiver is seeking to express those feelings directly to the loved one. As both former caregiver and care receiver, I find this problematic. As a person with cancer, I only had energy to hear upset feelings of others some of the time, and the same was true of my sister. I welcomed it when I could, and she often solicited it actively. I wouldn’t expect it, though, because I always want to support the energy of a person who is seriously ill to be focused on their own healing. I know from my experience and from what my sister told me: it is extremely difficult and intense to receive the expression of difficult feelings if it is not consensual.
In addition, I want every caregiver to have multiple people they can turn to for support.
The trick is to have enough other support—to not do it alone, as Daniel said—that it doesn’t become desperate; that it doesn’t become a NEED to express it to THAT person.
- I need honest and direct communication with my loved one about both of our needs as we negotiate care.
I cannot stand behind the one I took out—“To reject any attempts by my loved one (either conscious or unconscious) to manipulate me through guilt, and/or depression.” My concern here is double. First, there is an assumption that the caregiver knows that an attempt to manipulate is taking place. In my mind, this is not something we can ever know; it’s always an interpretation, and I strive to be humble with my interpretations of other people. Second, even if it is true, if a loved one is somehow manipulating, I want to understand what is leading them to resort to manipulation—could it be their own struggles to accept their dependency which make it hard to ask directly? Or perhaps it is fear of hearing a “no” if they ask for anything? A little dose of empathic understanding can go a huge way towards more directness.
- I need consideration, affection, forgiveness, and acceptance for what I do.
Once again, I took out the rest of the original—“from my loved one, for as long as I offer these qualities in return.” First, a caregiver may not be able to get it from a loved one, no matter how deep the need is, because the loved one may not be able to offer it. Second, the tit for tat that is built into the original diminishes the beauty of the giving and of the need, both. In my relationship with my sister over the years of caring for her, we shared love and support of each other in myriad ways. There was no measure, no comparison. Love and consideration flowed from where there was resource to where there was most need. No separation.
- I need to take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my loved one.
I am delighted to find one line that I can wholeheartedly support without any further changes other than to add the words “I need” at the beginning.
- I need to find ways of preparing to sustain me in the time when my loved one no longer needs my full-time help.
As before, I took out the explanation and the idea of protection, which casts the loved one as a menace to the caregiver’s individuality. They are not. It is only the internal thoughts that could threaten the individuality of the caregiver, not anything that the loved one does.
- I need societal commitment to support caregivers.
I took out the entire original—“To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made towards aiding and supporting caregivers.” Support for caregivers is necessary regardless of how much support and resources are developed for people who are impaired.
For this list of needs to work as a grounding place for a caregiver, two additional ones appear to me as vitally important, without which the entire project is likely to include periods of fear, anger, and disconnection. I add these two below, with their own explanations.
- I need self-acceptance: to remember that I have needs, limits, and feelings, regardless of how much I love the person I care for, how committed I am to them, or how strong I am.
To me, such self-acceptance is the foundation of a healthy orientation to the sacred work of caregiving. It’s the biggest insurance policy against martyring, resentment, fear, and anger. It is an act of love and dedication to stand at the center of my own life and choose, freely and lovingly, to dedicate myself to the well-being of another person.
- I need a solid relationship of trust and collaboration with my loved one.
No matter how strong and healthy I may be inside, caregiving is a relationship, and it affects two people in multiple ways. Caregiving works beautifully when the relationship already includes mechanisms for working out differences and making collaborative decisions. If such is not the case before caregiving starts, caregivers would benefit enormously from initiating such conversations.
Conversations with loved ones
To transcend the pattern of trying to be everything to the loved one, and then exploding in helplessness when exceeding our limits, requires relating to the loved one with care and honesty at the same time. I was blessed with a relationship that was rock solid for all the years of my sister’s life. We never had a significant fight. We spoke openly about everything. She was uniquely gifted with capacity to care for her caregivers, a gift that moved all of us to tears and was still present until just before she died.
Each pair of caregiver and loved one could gain from having as gentle a conversation as possible about their respective needs, hopes, and fears.
In the absence of such luck, each pair of caregiver and loved one could gain from having as gentle a conversation as possible about their respective needs, hopes, and fears about their relationship. What remains the same, and what changes as they shift into this new arrangement? Especially if dealing with a life-threatening illness like cancer, prioritizing needs is entirely different when one person is fighting for their life. When does the pair ask for support for them as a pair? What needs do they bring to each other, and which ones do they ask others for support about? How will they handle conflicts when they inevitably arise? What can they do to continue to celebrate their love and connection even when it’s strained? Done well, such conversations can lead to an experience of collaboration, trust, and empowerment for both parties. The relationship itself can then become a resource that sustains the care.
Such conversations can lead to an experience of collaboration, trust, and empowerment for both parties.
In the last few weeks of my sister’s life, as she developed a bowel obstruction (a common cause of death for women with ovarian cancer), I stepped up my commitment. I canceled just about everything from my extraordinarily full life, dedicated as I am to a vision of a world that works for all. I walked around, through those weeks, with two primary experiences. The one was a sense of deep presence and commitment to service—to her, her wife, their son, and our other sister and mother who came from Israel for the final journey. The other was the exquisite and painful experience of swimming in a sea of gratitude and awe about the unique privilege of having had this relationship, even with all the pain and impending loss, for forty-nine years.
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