Remaining Whole While Caring for a Loved One with Dementia

by 
Rabbi Dayle Friedman, for the Shuttle

Many people in our Weavers Way community are caring for dear ones with chronic illness or dementia — perhaps a parent or spouse who is living at home, or a family member or friend who is in assisted living or a nursing home. 

The task of caring for a person with dementia is challenging in myriad ways. Caregiving is often invisible — our neighbors or co-workers may have no idea that we have another “job” that begins before our work day and doesn’t quite ever end. And caring for a person with dementia can be frustrating and sad; we often feel that we are losing the person we love day by day.

Caring for a person living with cognitive impairment can also be relentless. It is easy to forget about our own needs as we struggle to do enough for our care partner. We may be neglecting health-promoting behavior, such exercise and nutritious eating. We may forgo relationships that would “refill our cup,” feeling that we cannot spare the scarce resources of our own time and attention. 

The great second-century rabbi Hillel taught, “If I am not for myself, who will be for me? If I am only for myself, what am I? And if not now, when?” This deceptively simple teaching is a wonderful shorthand guide for the caregiver. 

“If I am not for myself, who will be for me?” Implicitly, the text suggests, if I do not nourish myself, I will be unable to care for anyone else. No one else can do this. But this first direction is counterintuitive. One woman who was caring for her aging parents told me, “I hate it when people ask me what I’m doing to take care of myself. I don’t have time!” Yet Hillel’s teaching demands that we put ourselves on the “to-do” list.

“If I am only for myself, what am I?” We are required to attend to ourselves, but ultimately, we are fulfilling our human potential when we offer compassion and support to the people around us. A remarkable feature of caring for another is the way in which we often find more resources within ourselves than we knew we had. We find ourselves taking on tasks we never imagined we could handle, whether it is managing complex finances or providing intimate personal care. In caring for another, we may come into ourselves more fully, tapping unexpected strengths and resilience.

“If not now, when?” As caregivers, we need, in each moment, to discern what is most important right now. There may be three, or seven, tasks simultaneously calling us, but we can only do one thing right now. We cannot put off the most important one. And perhaps the most essential thing is not any instrumental task, not a phone call or a bill, but being there, if we are able, with the person in our care. The moment may not come again. 

Rabbi Dayle Friedman has been a Weavers Way member for 32 years. She is currently organizing Restoring Our Spirits, a support group for caregivers of people with dementia. Contact her at rabbidayle@growingolder.net.