Charles Dickens’ opening words, in A Tale of Two Cities, aptly describe the paradoxes of caregiving:
It was the best of times, it was the worst of times, it was the spring of hope, it was the winter of despair, we had everything before us, we had nothing before us…
Dickens’ words highlight the fundamental paradoxes facing family caregivers whose loved ones face a debilitating or life-threatening disease. Conversations with hundreds of cancer caregivers made clear the importance of the right New Year’s resolutions, since caregivers can rarely (if ever) change the course of the disease.
1. I’ll preserve my own physical and mental health.
By definition, if you’re a family caregiver for a seriously ill loved one, you’re inundated with simultaneous activities that would make the day of a proverbial “one-handed juggler” seem dull. Between arranging, driving for, and taking notes at medical appointments, monitoring administration of medicines and fluids, reporting unanticipated side-effects, tracking financial records, researching clinical trials, preparing special meals, and ever so much more, you have little time or energy left to think about their own health.
Many caregivers accept that their patients may feel sad, afraid, overwhelmed, or anxious, but they don’t give themselves permission to do so. Many won’t even accept help and try to just “motor on” as they did before cancer struck.
Yet research has shown that compared to the rest of the population, cancer caregivers tend to face more physical and mental health risks because they don’t eat well, sleep less, exercise less, display more signs of depression, and defer their own medical visits. In fact, one study done by the University of California estimated that the stress of caregiving can take as many as 10 years off a family caregiver’s life.
Now that’s something worth making a New Year’s resolution about. You’ll be doing your patient (and yourself) a favor if you can keep yourself strong and refreshed. Just think of Mindy’s husband, who adopted a new hobby (bike racing) during their fight against her metastasized melanoma. He knew that the exercise and focus would keep him healthy enough to care for their three young children after her death.
So if you’re a caregiver, resolve to do one thing for yourself every day. Read, or walk the dog, or paint a picture. Write a letter. Call a friend. Take advantage of any and all respite opportunities. Let someone else spend an hour or two with your loved one so you can do something to recharge your batteries. Let friends and relatives help by preparing meals, bringing over a puzzle or movie, or taking care of the kids for the evening.
Even a half hour will remind you of life B.C. (before cancer) and refresh both body and soul. Keep yourself physically and mentally healthy on behalf of your loved one, your family, and yourself.
2. I’ll seek out palliative care to maintain my patient’s quality of life.
Every cancer patient deserves the right to experience treatment with a minimum of pain, nausea, anxiety, and treatment side effects. That’s what palliative care does, whether through medication or through evidence-based therapies like exercise, massage, meditation, or such creative outlets as art, music, or journaling. Unlike hospice, which is available only to the terminally ill, palliative care can and should be accessed from the day of diagnosis. Not every oncologist is trained in these practices — they represent an emerging medical specialty. You’ll have to seek it out deliberately and persistently, but it will be worthwhile.
Beyond enriching the patient’s quality of life, palliative care can help caregivers to heal faster. Mike’s wife kept him alive with a series of clinical trials and constant palliative care for 27 months after his terminal pancreatic cancer diagnosis in the late 1990s. As he was dying, he affirmed to her that he was pain-free, anxiety-free, and comfortable. To this day, she describes that fact as a victory over the cancer. She’s now a powerful advocate for increasing Federal cancer research and palliative care funding.
3. No matter what happens in caregiving, I’ll preserve my identity and self-confidence.
Too many caregivers totally lose themselves in caregiving and struggle to redefine post-cancer life, regardless of the outcome. For those whose patient comes out the other side cancer-free or at least in remission, fears of recurrence may dominate their lives. Those whose patient dies may feel guilt, perhaps wondering if there was something they could have done to change the outcome.
The problem is that cancer is a mystery, even to the scientists and physicians who work with it every day. There may not be understandable reasons why one patient responds well to a gold-standard treatment and another doesn’t, or why one patient’s cancer can be conquered while another’s just takes over. As a caregiver, you can only do what you can do.
Didier’s wife (a former successful medical equipment marketing executive) found herself nearly penniless and facing life as a single mother for her 4-year-old daughter and their son who was born 10 days after Didier died. He had told her how he wanted her to care for the children after he was gone, and — feeling overwhelmed — she took detailed notes.
Then, after three years of trying to comply with his wishes while she grieved, she realized that she had to take back control of her life. She still loves and misses him, but she has confronted that her intense caregiving had caused her to lose both herself and her self-confidence. So honoring the spirit of his wishes, rather than the letter of her notes, she buried her death-bed notebook at his gravesite and created her own “playbook” to enrich life for herself and the children. Didier’s wife has become Joanne again. She has chosen to really live her current life, and in doing so she’s rediscovered joy, both personally and professionally.
The new year is here. For caregivers, it brings an opportunity to reflect on caregiving so far and to set the stage for a newly fulfilling life — an opportunity not to be missed, regardless of how your caregiving may turn out.