November is National Family Caregivers Month, and since care provided by family members is a big part of the lives of many mesothelioma patients, we wanted to share some ideas about caregiving. With that in mind, we reached out to some experts on the topic to get some feedback and suggestions.
Finding a Support Community
Dr. Stephen Lottenberg is the facilitator of a caregiver group at the Cancer Support Community Redondo Beach (CSCRB)—a nonprofit organization that provides free support programs for cancer patients and their families. Dr. Lottenberg’s passion for cancer-related caregiving grew out of his own experience of providing care to two of his closest family members, his wife and daughter, both of whom were diagnosed with cancer.
Dr. Lottenberg says that joining a support group explicitly for caregivers is one of the most valuable things that those who are providing care to family members can do. “It eases the transition from the shock of diagnosis of cancer to that of the ‘new normal’ that the diagnosis brings on families,” Dr. Lottenberg said. “Being with other caregivers who are going through a similar experience allows caregivers to accept many aspects of the cancer journey—specifically feelings of loss of control and powerlessness.”
Such a community can also help caregivers move forward themselves. “The process of sharing feelings with other group members allows caregivers to release ‘stuck’ feelings and significantly ease the burden of uncertainty that comes with a diagnosis of cancer in the family. Being in a support group also allows caregivers to realize that the transition of this challenging phase can be shared – which can help reduce the possible psychological, emotional and physical problems caused by holding in feelings and emotions.”
Control the “What If” Questions
One of the biggest challenges that many caregivers face is uncertainty about the amount of time and effort they are giving to their family members, as well as the effectiveness of the care they are providing. Questions like “What if I had done this instead of that?” or “What if my family member had undergone this treatment instead of that one?” can cause caregivers to become emotionally scarred and move focus away from the care itself.
Leslie K. Saglio – a wellness coach and yoga and meditation instructor whose father and best friend both passed away from cancer and whose mother is a six-year survivor of cancer – says learning how to control those questions can help caregivers retain the mental and emotional capacity to provide care. “We cannot control what happens in life but we can control how we react and the experience we give it,” Leslie told the Mesothelioma + Asbestos Awareness Center. “Caregivers can easily burnout juggling between others needs while feeling exhausted, stressed and overworked. It’s important to consciously take the time to nourish yourself and replenish your energy. Caregivers cannot pour from an empty cup.”
In that respect, Leslie offers some advice on how caregivers can learn to control such reactions. Some of these are proactive, while others are reactive – but really, it’s about finding what works best for the caregiver.
Say “No” – “Wave that ‘No’ flag loud and proud,” Leslie advises. “Stop, slow down and allow yourself time to rest, restore, and re-energize.”
Be still – “Meditation helps to still the mind and body so we can live more mindfully instead of from a reactive and anxious state,” Leslie says. “Start with just five minutes everyday for one week, and then try gradually increasing this over time.”
Just breathe – “Focus on your breath,” Leslie recommends, “and this will instantly bring you to the present moment. Take a deep breath, inhale through the nose, exhale through the mouth. Repeat twice more and then breathe normally. Notice that with every breath things change.”
Give thanks – “A practice of gratitude can change your vibration, your perspective, and your experience of this difficult time,” Leslie counsels. “Start to see the blessings to bring more peace and joy in your life, by writing everyday three things you’re grateful for in a gratitude journal.”
Befriend the Health Experts
Primary caregivers for cancer patients may often be put in a situation where they need to talk with doctors, nurses, and other health practitioners about their loved one’s care. In these situations, it’s important to remember that everyone is working toward the same goal, the successful treatment of the person with cancer. However, in the moment it can sometimes feel like the caregiver is struggling, especially if they disagree with or don’t fully understand the course of treatment that is being proposed or given to their family member.
Adrienne Gruberg founded The Caregiver Space, a nonprofit organization that provides support for both family and professional caregivers, as a result of her own experience with taking care of her husband and her mother-in-law, both of whom eventually passed away due to cancer. She says that it’s important to develop a working relationship with medical staff, including everyone from surgeons to the orderlies that clean the bedpans. “Do what you can to engender respect,” Adrienne suggests, “so when you ask questions or need help, you’re taken seriously and given good information and timely service. This means dressing the part to make a good impression and dealing with nurses and floor staff with respect for them.”
She also notes that it’s important to make the most of your time both in and out of the hospital. “Be prepared for doctor’s visits. Have scans, X-rays, medication schedules, and dosages available. There are lots of tools to help you keep organized, and there’s always the good old binder.” Adrienne adds that you should bring something to keep you busy while in the waiting room, whether it’s a high-tech device like a tablet or something non-electronic like knitting or a crossword puzzle. “Keeping yourself occupied will keep you from getting aggravated about having to wait and wait and wait. Accept the fact that appointments usually won’t be kept on time. Do what you can to keep yourself calm.”
More Caregiver Tips Coming
Throughout the rest of November, we will be sharing more caregiver tips from experts and providing more information for family caregivers of those who have cancer. In the meantime, share your own caregiving tips with us on Facebook and Twitter.