How are your babies? Asking patients about their young children shows compassion and opens the door to recommending resources. Even just a 10-second conversation strengthens clinician-patient bonds, especially when patients share a joyful story or cellphone picture.
What if a patient's "baby" is a disabled parent, sibling, or adult child? Asking How are you doing with the caregiving? opens opportunities to understand patients' challenges and needs. To illustrate how just a few words can make a huge difference for patients who are also caregivers, here's my story.
My children were one, three, and five years old when I first faced cancer. Soon after my youngest graduated college, my then 85-year-old mother developed dementia. As her sole caregiver, I managed my chronic health conditions and her gradual decline. Then I developed aplastic anemia. Acutely distressed about my ability to continue caring for her, I leaned on lessons learned that had helped me through years of doing cancer-and-kids.
* Prioritize your well-being. The best thing I could do for Mom was to stay as healthy as possible. Overextending myself or neglecting my needs would hurt me and Mom.
* Take care of the what-ifs. I began creating a document detailing Mom's doctors and medications, passwords (bank accounts; pharmacies); nanny-cam access, and preferences for everything from breakfast foods to brand of toothpaste. My anxieties escalated while updating her legal documents so my husband could take over if needed. Fortunately, I knew my distress would abate once the document was complete, as it had after I took care of the what-ifs for my children.
Except it didn't. That's when I consulted a psychologist recommended by Mom's geriatrician and told her about my crying every time I thought about Mom's future. In my case, efforts to find peace with possibly dying before Mom exacerbated my guilt about burdening my husband and worries about the quality of Mom's care.
Guilt arose partly because she was "my" mother (unlike "our" children). Because guilt makes sense only if you've done something wrong, and neither my illness nor Mom's dementia was my fault, logic put that issue to rest.
Yet my angst about Mom's care and burdening my husband persisted. Unlike with my children, I couldn't trust that things would be okay, whatever happened to me. For good reason. When I was in chemo, people showered my children with love and attention, and happily helped keep their diapers clean. Throughout my years of caring for Mom, nobody volunteered to help change her diapers. While dealing with Mom's frequent mini crises, it felt like my aplastic anemia was threatening not only me, but also Mom and my husband.
Another difference was how, whatever happened with my cancer, the mission at home was the same: helping my children cope and grow. I found comfort in knowing that if I didn't survive, my husband's burden would be lightened by his innumerable opportunities to experience love and joy. I envisioned him enjoying bonds with our children made even stronger through adversity. Mission-accomplished moments would be-and, indeed, were-celebrations of newly independent adults with hopeful futures.
In contrast, Mom's condition precludes any coping and growing. Her ties with others will inexorably loosen as her memory fades. The mission-accomplished moment will be a somber celebration of life eliciting her caregivers' grief and relief.
Relief. I shuddered the first time I thought, If mom died, I wouldn't have any of this stress or these worries. Feeling ashamed, I confided to the psychologist, I'd be relieved. She didn't flinch. You're right, she stated, then clarified that we were talking about a situation, not an emotion. Her death will bring relief from caregiving responsibilities and worries. That's a fact.
It was also a fact that I'd feel emotional relief, too. That reminded me of what I'd learned from my first recurrence and shared at support group by joking that I found the cure for fear of recurrence: Go ahead and have one. Then you'll stop worrying!
Sometimes, getting what we want comes at too great a price. My desire for relief from caregiving means only one thing: I'm human. However much I might wish for relief, I'll always do my best to care for Mom without compromising my health. With that insight, my shame vanished thereafter.
Because of my fortunate circumstances, my caregiver distress resolved after only two counseling sessions. I have funds and lots of support. My heart aches for patient-caregivers strapped for money, doing all the caregiving themselves or choosing between paying for their own meds or their dependent's care. Other patient-caregivers don't have family members willing to step in. Worse, some face the exhausting stress of lifelong family rivalries and disagreements about who should do the caregiving and how. Those patient-caregivers need help.
During routine cancer care, along with asking about pain and falls, ask, Are you doing any caregiving for someone? If yes, one approach is to ask:
* How much caregiving are you responsible for? Their answer helps calibrate caregiver burden.
* What parts of the caregiving are most stressful? Normalize the stress associated with caregiving to encourage disclosure of struggles, whether emotional, practical, financial, social and/or spiritual.
* Who is giving you support as a caregiver? Prescribe caregiver counseling. and follow up on it. Emphasize that addressing stress helps patients cope with illness. If relevant, mention that dealing with the emotional problems of those in their care may make it more difficult to handle the emotional challenges of survivorship.
* Which services are helping with your caregiving? Social-work professionals can link patient-caregivers to local, state, and national organizations providing needs-based assistance.
As our population ages, increasing numbers of patients face the challenges of caregiving while ill. Surprisingly little is written about this scenario, even though the added physical and mental strain may impair patients' ability to cope. Asking How are your babies? helps patients with children at home. So, too, asking How are you doing with your caregiving? may prove vital in helping many patients and the innocent bystanders under their care.
WENDY S. HARPHAM, MD, FACP, is an internist, cancer survivor, and author. Her books include Healing Hope-Through and Beyond Cancer, as well as Diagnosis Cancer, After Cancer, When a Parent Has Cancer, and Only 10 Seconds to Care: Help and Hope for Busy Clinicians. She lectures on "Healthy Survivorship" and "Healing Hope." As she notes on her website (http://wendyharpham.com) and her blog (http://wendyharpham.com/blog/), her mission is to help others through the synergy of science and caring.