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.
Like many, I was unprepared for caregiving when my partner was diagnosed with stage 4 prostate cancer. In an instant, retirement plans for learning new hobbies and traveling abroad were upended. Our lives are now centered around dealing with the challenges of a terminal disease. Besides the impact of cancer on the body, this involves coping with side effects of medications and treatments, juggling multiple medical appointments and critical decision-making as well as managing day-to-day stress in the relationship. As our population ages, this is a common reality for many of us: 53 million (or 21.3% of adults) serve as family caregivers; of those, about 49 million are spousal, the majority (63%) being women (AARP, 2020).
Prostate cancer can be taxing psychologically for the patient and caregiver. Feelings of being out of control, helplessness, powerlessness, and the inability to anticipate a future together leads to anxiety, anger, depression, guilt, and withdrawal for both parties. Once the illness “takes over”, a vicious cycle can develop: as stress builds, one partner retreats while the other feels discounted and/or becomes demanding; these reactions can oscillate between the two persons. On the other hand, with mindfulness and support, care-partnering affords great opportunities to master challenges leading to self-growth and a deep expression of love between partners.
Reactive vs. Pro-Active
Multiple studies have shown caregivers who adopted pro-active practices improved their coping skills and outlook on life, and ultimately were more resilient. Instead of reacting to every crisis or symptom, stay ahead of the challenges, being pro-active in those areas that you can be, collaborating your efforts in a positive partnership:
- Research – the pathology itself, new treatments/drugs, trials, the best medical team for his type/stage of prostate cancer (telehealth makes it possible to reach out globally).
- Managing communications with your medical team – asking questions/pursuing answers, expressing concerns, taking notes during visits, using portals & emails effectively, dealing with medical emergencies, coordinating visits and treatments to minimize travel, side effects and fatigue.
- Monitoring side effects of treatments and drugs – keeping a log of administration dates, dosage, physical & psychological changes.
The primary caregiver, as the most consistent and closest person to the patient, can take an active role in the above. I maintain a detailed journal during my partner’s sickness, giving me the opportunity to “look back” as well as plan for going forward. This enables us to share effective and balanced decision-making and advocacy.
Supporting Your Partner
Caregiving is a tricky balancing act between helping your partner as his health deteriorates while supporting his sense of agency and dignity. This is particularly true for our men with prostate cancer whose very sexual identity and body image are intertwined with their diagnosis. After all, he’s confronting some kind of loss nearly every day. Yet, the more you want to do, the more he might want to deny or disengage. Asking “Is this a good time to ….?” or “What’s important for you today?” rather than, “We have to ….” or “This has to be done by …!” makes a difference on how caregiving is perceived. Organize behind the scenes as much as possible to minimize his feeling overwhelmed but check in with him on the big things so he doesn’t feel controlled; try to connect non-verbally (taking his hand with a smile, sharing music). Being patient, empathetic, and generous with your time and love go a long way.
Supporting Your Relationship
During the prostate cancer journey, when anxiety, demands (both physical and emotional), and lagging libido can feel overwhelming as well as rejecting for both partners, it is even more important to fortify the positive bonds in your relationship. The challenge comes when both partners feel stretched, exhausted, and possibly even resentful of one another and are unable to dig themselves out from under. If your partner shows an unwillingness to communicate how he feels about himself and your relationship, give him ”space.” Assure him he’s not alone to face this “tidal wave.” Encourage him to come to you when he’s ready, and leave the door open to share. If there is a barrier between you two, this could be the time to seek help. Set up regularly-scheduled sessions with a couples counselor, normally available as part of the hospital’s social services team, who can provide insight for both of you into the dynamics of your relationship, exercises to foster healthy communication, and aid setting realistic goals as life becomes more difficult. Dr. Talia Zaider, director of Memorial Sloan Kettering Cancer Center Family Therapy Clinic, believes this is a crucial period to create good, ongoing memories together, a foundation that sustains when things get tougher and will be part of your couple’s legacy. As a result of working with her throughout the cancer treatment, my partner and I have become a strong, united team.
Recommendations:
- Make a regular date with each other to have frank, non-judgmental discussions of the issues that matter. Examples: his expectations for you as medical advocate, end-of-life care, attempts at affection that are ignored. Counterintuitively, this might bring you closer when everything is out in the open.
- Be present in your interactions (get rid of the electronics) by listening with compassion, paying attention to pauses and shifts in body language, making frequent eye contact.
- Even if sexual intimacy is minimal to none, using touch to stay connected reduces tension, stimulates sensory awareness, and feels plain good. Examples: massage (scalp, belly, and lower back especially work) and tender handholding.
- Change in scenery: try a weekend away in the countryside, letting the beauty of nature afford you both a respite and something to look forward to (or, if that’s too much of an effort, regular walks in the park) for tranquility and joy. Snap photos to capture new memories.
- Bring more full-hearted laughter into your lives to lift your spirits: share silly jokes, happy stories and photos from the past, watch comedies with your friends and do other fun stuff.
Read next: Part 2 – You and Your Support Team
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.