caregiving and care-receiving

I’ve been musing a lot about caregiving, receiving, and community, as I go through this journey. Today, the 3rd day after port placement and first Carboplatin/Taxol treatment, I'm feeling quite well, well enough to put some of those musings in writing.

Seven and a half years ago when my sister-in-law Kerstin was diagnosed with pancreatic cancer, I was in a period of my life when I didn’t have a lot on my plate, so I spent a lot of time in Berkeley caring for her and my niece & nephew, who were 5 at the time. I was part of a large outpouring of support and caring, people who brought meals and did childcare and gardening and everything else you could think of over that 6 month period. I was also part of the “inner circle,” consisting of my brother, my sister, my aunt, Kerstin’s mother, and 4 or 5 of Kerstin and Ari’s closest female friends, who kept in touch regularly to coordinate the care needs and provide the more direct care. While this was definitely one of the most challenging experiences of my life, it was also one of the most beautiful and meaningful.

I’ve always cared a lot about building community, and my life has reflected that, from my time on a Kibbutz when I was 14, to living cooperatively in college, to my time at Sandhill Farm and other intentional communities in the US after college. After I moved to Madison in 1992 I was involved with a lot of community groups, including Community Supported Agriculture, a feminist newspaper cooperative that made decisions by consensus, helping start the Schenk-Atwood-Starkweather-Yahara Neighborhood Association, the East Isthmus Neighborhoods Planning Council, the Grassroots Leadership College, and most recently, CORE, a growing relational network of passionate, visionary, on-the-ground change-makers willing to discover and share wisdom, generosity, and joy in community. In addition I eventually chose to marry a man who, though considerably more introverted than I am, also prioritizes building community. My circles of relationship have expanded greatly as a result, with many new connections, especially in the Jewish, Buddhist, and philanthropic communities.

I am trained in the use of the conscious one-to-one conversations to build relationships that can support collective action, and in the use of processes to facilitate conflict transformation, building trust, shared purpose, and accountability in groups. With all of this experience and skill, it seems to me that there is nothing that deepens relationship and builds community like asking for and giving help when it is needed. The web of caring that surrounded my brother & his family as his first wife died was wondrously palpable. Despite the tragedy, and, at times, the exhaustion, it felt uplifting in unprecedented ways.

I have also witnessed a fair amount of caregiver burnout, when the needs for care are greater or last longer than the capacity of the caregivers to sustain while maintaining their own equanimity and health. Even when there are plenty of people willing to help, it can be hard to distribute the load when the person who is ill or disabled only wants their closest family to provide the direct care. Some of this I’ve seen as the step-mother of two disabled children, and as part of LOV-Dane, a community of families of people with disabilities; and also as a peripheral part of the Gemilut Hasidim effort at my synagogue.

Before I got sick, I used to worry what it would be like if I did, given that Don has done so much caregiving in his life, and has felt significantly burned out by it. While he can be an awesome nurse and caregiver, he also gets triggered by it at times, taking on too much unconsciously, going into “solo functioning” mode, and shutting down emotionally in order to do so.

So, when I received the cancer diagnosis, I made a decision to be open to a wide array of help, and to keep opening more widely. To accept offers from people even if I didn’t feel totally comfortable with them – as a way to deepen the relationships, and to make the load lighter for Don and my closest loved ones. So far, this has been working very well. We seem to have a great abundance of people willing to bring us meals, accompany me to chemo, sit with me as I recover, etc. [Please note: if you are one of those people who have done so, or are planning to do so, or thinking of doing so – we are most grateful for your generosity. AND, please know this: there are enough of you that NONE of you need feel obligated in ANY way!]

This was driven home to me in a deep way the other day. Don and I were looking at our calendars for the next couple of months, and realized that, although we have many visits from out-of-town family and friends scheduled, we had neglected to try to line any of those visits up for a time when Don could go on one of the meditation retreats he was interested in this summer. Don didn’t want me to be left alone at night, and was fully prepared to forgo the retreat. But I said, let’s not give up yet, let’s brainstorm a little… how could we cover this need? I thought about out-of-town folks who might come (or come again!) from far away, and about asking local friends to each sleep over for a night… then suddenly I thought of our sangha sister Margaret who lives in Neenah, WI, a couple of hours from us. We’ve gotten to know her over the past few years because she’s stayed with us overnight several times when she’s come down for sangha events, and as we got to be friends, she would sometimes deliberately extend her visit to spend more time with us. She is retired and doesn’t have a lot of family responsibilities. “I bet Margaret would like to come if we invited her!” I said.

I issued a carefully worded email invitation, to make it clear that “no” was a fine answer: “Any chance you would *like* to come down for a few days sometime in early June to stay with me while Don goes on retreat? Please know that this is *completely* optional and we have good ideas for how to cover it if this is not something that appeals to you or the timing doesn’t work …” In just over an hour we received the reply: “I would LOVE to, and feel so honored! !”

As I reflected on this the next morning on my way to the pool, I began to weep with gratitude. Margaret’s presence in our lives, and her generosity and eagerness to come, moved me deeply on its own. Even more, this one example brought home to me more completely, as a major and irrefutable case in point, that we are held in a strong, deep, and vast web of caring. And, I keep being reminded, it is actually a gift to others when we invite their help and are willing to openly receive their gifts and their love.

So, thank you, and you're welcome!