Tips to help yourself and your loved one live with a chronic disease
“Caregiver” is a title held by more than 65 million people in the United States, who are currently helping a loved one manage a chronic condition.
A caregiver can be a significant help for those living with a chronic disease as part of a patient’s health care team, but there can also be many challenges, especially for those caring for patients with cancer. Not only do caregivers provide emotional strength and support, but often also help a patient with daily needs, such as filling prescriptions or scheduling doctors’ appointments.
At an educational event recently held for those living with the blood cancer, chronic myeloid leukemia (CML), caregivers had the opportunity to ask questions of medical experts. In honor of November’s National Caregiver Month, Dr. Eric Feldman, director of hematological malignancies at Weill Cornell Medical College, provides advice for a few commonly asked questions:
How can caregivers manage their role as part of the patient’s health care team?
Being a caregiver can be overwhelming, and some important tips include:
Educating yourself: Staying well-informed about your loved one’s condition will make you a more valuable resource for them. For example, with CML, the cancer-causing enzyme Bcr-Abl is responsible for sending signals to produce cancerous white blood cells. Knowing about the disease, including which medications are designed to specifically act against this enzyme, can help you to be an active participant in ongoing treatment discussions.
Helping track results: Creating a “results journal” which is dedicated to storing test results along with his/her testing dates can help a patient keep track of this information. With CML patients, tracking the levels of Bcr-Abl is important for monitoring to see if the patient has reached the lowest level of disease.
Joining a caregiver support group: Greg Stephens, founder and director of the National CML Society, urges caretakers to connect with others going through similar experiences as an opportunity to learn new ways to help a loved one. These same connections can also be a source of emotional support.
What is the most important tip?
It’s important to not forget about yourself – even if it means saying “no” to your loved one. When balancing the needs of the patient, it can be easy to forget your own. One of the most common challenges is stress, but being stressed can also make it harder for you to provide care. So make sure to take time for yourself. This will help you be there to help your loved one as best as you can.
Can you provide some advice for long-distance caregiving?
Providing care doesn’t have to be reserved to only those family members and friends who live closest to the patient. For those who live farther away, some suggestions include:
Planned visits: Seeing your loved one in person, as often as your schedule allows, can be a very important way to show your support for the patient and also for those caregivers who live closest. Be sure to talk with them ahead of time about what you may be able to do to help.
Just because you live a greater distance from the patient, doesn’t have to mean that you cannot be an integral part of their support network. Having a plan in place will keep you from getting overwhelmed and stressed.
Think creatively: For patients and caregivers, it is important to have honest and open discussions with health care providers so they can play a more active role in disease management. For family members/caregivers who live far away, this can be a challenge. Stephens suggests that if you cannot attend appointments in person that you discuss with your loved one ways in which you can be more involved with their scheduled appointments by phone or teleconference. The patient’s doctor may also offer creative ways for you to be more involved.
Where can I go to find more information about cancer and the role of caregivers?
For more information about cancer, visit the National CML Society (www.ncmls.org). For more information and to connect with other CML patients and caregivers, visit the Novartis sponsored social networking site www.cmlearth.com.
