A Caregiver’s Guide to Caring for Yourself
For most people, a cancer diagnosis—especially one such as chronic lymphocytic leukemia (CLL), a slow-growing type of blood cancer—sets off a flood of emotions. According to a 2022 Emotional Impact Report commissioned by AbbVie, which surveyed patients diagnosed with CLL, 32% felt worried, 36% felt uncertain, 36% felt optimistic and 41% felt hopeful. And that was just at the time of diagnosis; emotions are liable to change over time and throughout treatment.
Alongside the patient, the caregiver is also on an emotional rollercoaster. At the time of diagnosis, “the caregiver who is a spouse or family member can suffer shock, sadness, and fear of the loss of the loved one,” says Patty Koffman, co-founder of the CLL Society and caregiver to her husband Brian Koffman, M.D.C.M., executive vice president and chief medical officer of the CLL Society and a CLL patient himself. “Additionally, some caregivers are impacted by real and immediate losses of income and career, and a derailment of expectations around ‘normalcy,’” she says. “They miss the life they had before.”
In their new normal, many caregivers find themselves overwhelmed by the responsibilities suddenly thrust upon them. “Caregivers are often involved in the logistics of cancer care delivery, like driving to appointments and keeping track of medications, which are complex and often involve a steep learning curve,” explains Arif Kamal, M.D., chief patient officer of the American Cancer Society.
That’s a big job, and it can take a mental and emotional toll—especially if caregivers try to take on the burden all on their own. Below is advice from cancer treatment experts on how to take care of a loved one dealing with CLL while also taking care of your own health and wellness needs.
How Caregiving Can Isolate You
CLL may develop more slowly than other forms of leukemia. In some cases, patients may not experience symptoms for several years. As a result, it often leads to a “watch and wait” disease management strategy that can be mentally taxing and cause caregivers anxiety. Not to mention the fact that the sheer length of time of the disease progression can wear caregivers down over time.
“Being a caregiver is a complex role that often involves varying emotions, including being overwhelmed or feeling guilty,” says Dr. Koffman. “It’s important for caregivers to recognize that these feelings are normal and to take care of themselves physically and emotionally. They dedicate a significant amount of their focus and energy on the care of their loved one. They should be encouraged to do the same in terms of self-care.”
The problem? Far too many caregivers try to shoulder the burden on their own, with only 21% of those surveyed reporting that they have support from others, making it difficult to take time away from caregiving. And although 81% of caregivers say they feel positively about caring for someone with CLL, three in four report that being a caregiver is more difficult than they expected.
As a caregiver, it’s important to remember that you don’t have to go it alone. “Caregivers [need to] seek out peer support in the form of a trusted friend, a fellow caregiver, or as part of a caregiver support group,” says Dr. Kamal. “Oftentimes, caregivers feel satisfied in their role, but also quite isolated, as friendships and usual relationships outside of the caregiving relationship are put on pause. Preventing social isolation will help ensure that caregivers remain connected to their communities.”
How Caregiving Affects You Mentally
The strain of watching a loved one battle cancer, coupled with the stress of navigating the healthcare system, can lead to burnout or even depression. This problem is compounded by many caregivers’ reluctance to seek help or unburden themselves.
“In my experience, caregivers feel guilty even acknowledging the fact that caregiving is sometimes difficult,” says Dr. Kamal. It’s important to acknowledge when the stress has gotten out of hand. “Though caregivers may experience difficult days as challenges,” says Dr. Kamal, “overall they should not feel down, depressed, or hopeless.”
To maintain your emotional well-being, consider making it a weekly priority to engage in hobbies that bring you joy. “Caregivers should be able to identify activities that bring them pleasure and joy outside of the caregiving duties,” says Dr. Kamal. “Oftentimes, caregiving becomes so engrossing that outside activities fall off.” If making time for tennis, reading, or baking seems impossible, Koffman offers this practical advice: “Put a daily self-care appointment on your calendar just as you would any other meeting or medical appointment,” she says. “Take time to refresh.” To help with this often-overlooked aspect of caregiving, the CLL Society offers a free online webinar: Giving Care to the Caregiver.
How to Connect With Others
While keeping in touch with old friends is important, you’ll also want the support of a network of people who understand what you’re going through. “Connecting with other caregivers is critical for finding a balance between caregiving and self-care and learning how to navigate a complex healthcare system,” says Dr. Kamal. AbbVie’s U.S. Emotional Impact Report further confirms that family, friends, social media, exercise, and faith are sources of emotional support for caregivers. “The less isolated a caregiver feels, through access to resources and sharing of their experiences with others, the better they’ll do,” he says.
To stave off feelings of isolation, the CLL Society offers support groups to help patients and caregivers make connections with others sharing the same experiences. “Often the best advice comes from the hard-earned wisdom and emotional balance that can only be offered by fellow CLL patients and caregivers who have already experienced the challenges you’re facing,” says Dr. Koffman.
The CLL Society also provides a suite of helpful forms and templates to aid caregivers in organizing patient records and doctor appointment questions, which can help alleviate the stress of navigating the healthcare system. While managing doctors’ appointments can be stressful, the medical professionals you work with can also be a great source of support. “Clinicians are increasingly recognizing that ensuring positive health outcomes for their patients depends on the availability of an emotionally supported caregiver over the course of the entire illness,” says Dr Kamal. “Caregivers shouldn’t feel shy in asking the clinical team for help.” In fact, findings from the Emotional Impact Report show that in addition to medical personnel, caregivers turn to psychologists and specialists for guidance and support.
Find out if your cancer center offers a navigator, a person who works closely with the caregiver to help them work within the complex health system. “A navigator can help shoulder the logistical and informational burden placed on caregivers so that they can spend more time being a family member or friend [to their loved one with CLL],” explains Dr. Kamal.
Finally, always keep in mind that despite the ups and downs, caregiving is an important role—one that should be a source of pride. “Caregivers bring priceless gifts,” says Patty Koffman. “Their presence grounds the ones they care for. They share the same hopes, shoulder the same burdens, and help us stay the course. They’re critical to the wellbeing, and sometimes, the very survival of the patients they care for.”
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