Create a Cancer or Chronic Health-Care Support Program
We have found that the needs of patients and the needs of caregivers may not lend themselves to being addressed at the same program, without holding separate meetings. At the Beth Am November 16th program Hope & Healing: Supporting Families Facing Cancer we covered both issues in the opening panel, and then separated for smaller discussion groups.
The panelists included Rabbi Janet Marder, senior rabbi of Congregation Beth Am, Rabbi Natan Fenner of the Bay Area Jewish Healing Center, Dr. Meryl Botkin, a licensed psychologist and a caregiver for five years, and Ali Meyers, a young woman who has survived colon cancer and now leads a support group at Beth Am.
The panelists spoke both about their personal experiences and their professional opinions. Ali Meyers read several pages from her journal in deeply moving poetry and prose about her initial diagnosis, her surgery, and her first chemotherapy. Dr. Botkin spoke about caring for her husband, who died of a malignant brain tumor, and the stages of cancer and caregiving.
After the panel we broke into smaller groups: one talked about how the congregation can respond to the needs of those facing cancer; the other talked about how the congregation can respond to the needs of caregivers. The small group discussions were valuable to people feeling isolated by their situation and allowed them to share strategies and suggestions.
We came back together for a closing healing service led by Rabbi Marder and Cantor Bandman of Beth Am. This provided an emotional outlet, a spiritual response to the days topic, and an opportunity for people to collect their thoughts and reflect on the issues presented. A healing service should be considered an essential wrap-up of such an emotionally draining program.
The personal journeys were powerful to hear, and participants had questions for both of them. It is recommended to have the groups separate prior to these types of presentations, to allow for deeper sharing and more personal conversation. This would also allow for caregivers and patients to feel more comfortable expressing anger, fear, resentment, etc.
The most difficult part of such a program is selecting speakers who can speak well and knowledgeably about their most difficult challenges. They must be able to speak from the heart about a deeply personal matter, and also universalize the experience enough to be relevant to others. Ideally, they should have enough distance in time from their cancer experience that they can have perspective about what they learned, what they might do differently, and offer useful advice to those just beginning the journey.
With a large enough population attending, it might be useful to divide the participants into smaller, more focused groups for those with a recent diagnosis, and those further along in treatment.
While those facing cancer diagnosis, treatment, and recovery have very specific issues to confront, those faced by the caregivers are more general and have much more in common. Programs for caregivers need not at all be limited to caregivers of cancer patients, but may include those caring for family members with Alzheimers, long-term physical or mental disabilities, and other serious illnesses.
Suggestions for caregivers have included monthly lunches, with or without professional speakers, but offering a chance to connect with others who understand the burden of full-time care-giving. Respite care is highly needed, and if the congregation has the means to provide or facilitate providing a break for caregivers this would be the highest priority for most. Another suggestion includes setting up a website or email list to share thoughts, vent feelings, and offer useful tips, such as local pharmacies that deliver 24 hours/day, interesting speakers coming to the community, or new books on a relevant topic.
Every congregation has individuals and families in these situations right now. The most important message that everyone took from Hope & Healing was that they are not alone, they belong to a community which understands their struggle, and is present for them in their time of need.