There are more than 65 million caregivers who are an essential part of a patient‘s health care team in the United States. They not only provide emotional strength and support but also often help a patient with their daily needs, such as filling prescriptions or helping schedule doctors’ appointments. But while being a caregiver to someone in need can be a significant help, it can also be a daunting responsibility. Greg Stephens, Founder and Director of the National CML Society, can relate.
“When my mother was diagnosed with chronic myeloid leukemia, or CML, I not only had an immediate concern about her overall health, but also about the added responsibilities and pressure that it would bring to our lives,” says Stephens. “I was committed to being the best caregiver I could, and staying as organized and well-researched as possible, but CML is not a disease that can be treated quickly. Instead, I think of it as a marathon, since my mother’s disease required ongoing treatment and care.”
CML is a blood cancer that in most patients can be controlled and managed for many years by working closely with a physician to develop the best possible treatment plan. Plans are decided based on a number of criteria, such as age and progression of the disease, and include a combination of daily medications, routine blood tests and regular check-ins with doctors. Dr. Javier Pinilla-Ibarz, Assistant Member of the Malignant Hematology and Immunology Program at the H. Lee Moffitt Cancer Center in Tampa, knows firsthand.
“When I tell patients they have CML it can be scary because it is a cancer that requires ongoing, active management for many years and the treatment process can be a lot of responsibility for a patient to manage on their own. Having a friend or loved one by the patient’s side can be a tremendous help. Not only can they help remind the patient of what to do to control their disease, but they can also be someone a patient can talk with to help keep spirits high.”
November’s National Caregiver Month is a great time to celebrate caregivers. The following tips are designed to help caregivers manage their role as part of the patient’s health care team:
* Helping track results: Creating a “results journal” which is devoted to storing test results along with his or her testing dates can help a patient keep track of this information. For example, for CML patients, tracking the levels of the cancer-causing enzyme, Bcr-Abl, is important for monitoring the progression of the disease.
* Caring for yourself too: Balancing the needs of the patient with your own needs is essential. A caregiver who’s stressed out or overwhelmed might not be able to care for a loved one as well as they want to.
* Educating yourself: Staying well-informed about your loved one’s condition will make you a more valuable resource for them. With CML, the enzyme Bcr-Abl is responsible for sending signals to produce cancerous white blood cells. Knowing about the disease and which medications best target and inhibit this enzyme will help you to be an active participant in ongoing treatment discussions between your loved one and their medical team.
* Joining a caregiver support group: Connecting with other caregivers is an opportunity to learn new ways to help a loved one. There is a great strength in knowing you are not alone.