In this two-part series, guest author Susan Dresner shares her personal perspective based on her own experience caring for her partner with prostate cancer and on her interactions with many other care-partners.
In this section, Susan offers resources and suggestions to help care-partners sustain themselves as they embark and continue on what can be a challenging journey.
Supporting Your Self
You could be witnessing the diminishment of your partner’s body, mind, psyche, and involvement with the world (including you). Cancer brings narcissism front and center (a form of self-protection) which can feel like disregard for the primary caregiver. This is real loss. Other factors that compound the toll on the care-partner:
- Inattention to one’s own health and well-being
- Lack of good sleep and physical exercise
- Neglecting eating well
- Not taking personal “time-outs”
Unless you replenish yourself (called self-care nowadays) to build your resilience and healing, you too can be at risk.
Recommendations:
Carve out time within your weekly schedule for:
- Regular gym visits, or at-home exercise regime, or daily walks
- Relaxation (which draws you into the body & mind): meditation, massage, restorative yoga, or warm baths
- Individual or group psychotherapy and/or caregiver peer support group
- Prepare or takeout a satisfying and nutritious meal daily (even if it’s just for yourself)
- In-person or phone time with a true friend who understands your situation and/or an activity that induces flow (such as gardening, painting, cooking, a museum visit)
My weekly self-care routine combines: a gym class to strengthen & stretch, an aerobic circuit around the park, a restorative yoga session which calms and uses breathe to center the self, a psychotherapy session, a Zoom meeting of peer caregivers, visits to the farmers’ market to buy fresh vegetables & fruit for our meals, either a lunch date with a friend and/or writing or making art. These 16 dedicated hours during a week have worked to bolster my own well-being and as well, the ability to give to, and care for, my partner.
Finding Your Support Team
As a care-partner, it’s understandable to experience being immersed in a “danger zone” overcome with anxiety of the unknown, discouragement, and exertion. Don’t sink into feeling alone: there are many options to help you stay afloat. Finding the right configuration of choices will take some investigation (internet searches, personal referrals and interviews), but will be worthwhile especially if you start early on, before problems pile up.
Options:
- Family and friends – an obvious solution but not always the most comforting since they might be too emotionally involved, and/or not in synch with your situation. Target those who you are able to rely upon for consistent and compassionate support.
- One-on-one psychotherapy/counseling – use personal referrals (coming from persons who know you well and are knowledgeable about therapy) to set up an initial consult with those professionals to determine if one seems most “in tune” with who you are and what your immediate needs and personal goals are. Ask if there will be a charge for this initial session. Be clear about what kind of therapy you want: crisis-intervention deals with the immediate situation to work out short-term solutions, or more long-term therapy if you have underlying issues that require examination while dealing with everyday challenges. This is the most expensive option (fees can range anywhere from $75 to $350 a session) although some hospitals might provide psychotherapy and/or counseling as part of treatment. However, this choice could yield the most long-lasting, meaningful results.
- Peer Support Caregiver Groups Adjuncts of hospitals or associations – with varying objectives that are now mostly run on Zoom, since COVID, which means more accessibility beyond your locale and are normally free.
- One-on-one telephone support, usually a volunteer associated with a non-profit will answer your questions/concerns, operated on a “as needs” basis
- Peer groups, run by volunteers, that focus on information gathering/sharing operate on a drop-in basis and normally don’t limit number of participants. Depending on the moderator, they can be unwieldy and dominated by a few
- Dedicated peer groups for prostate cancer patients and/or caregivers, these ongoing groups meets regularly (weekly or bimonthly) with limited number of members (usually a max of eight to ten) led by a professional or experienced and knowledgeable, trained peer. Members, screened for compatibility, face similar challenges since their partners have the same diagnosis; the emphasis is on creating a safe, trusting environment in which participants can share personal issues/feelings with other members fully present with their minds and hearts. For two years, I zoomed into a Caregiver Group offered every week by USToo/Zero, whose members all have partners with stage 4 prostate cancer. This has become my life-raft
- Internet – The PCF website as well as related associations can furnish current information on medical advances and helpful resources (e.g. support groups). Community boards and social networks bring information and a sense of community, but their efficacy largely depends on the mission of the site, knowledge and impartiality of the moderator, and the people attracted to the site. Caution: they can also be time-wasters or worse, packed with personal opinions, half-truths or misinformation. We found Healthunlocked.com which focuses on prostate cancers to be excellent: well-maintained, informative, and positively constructive.
Read Part 1: Proactive Practices to Support Your Partner and Your Relationship
Susan Dresner, founder/president of Successful Ways & Means, had been the health advocate for her mother and the primary caregiver for her life partner. She is a member of Memoria Sloan Kettering’s Patient and Family Advisory Council for Quality where she intends to focus on fostering the navigation process of the patient/caregiver during the cancer journey.