This week, Real World Health Care continues our series on caregiving by speaking with Deborah P. Brown, Chief Mission Officer of the American Lung Association. Brown oversees strategic planning and implementation of the Association’s health promotions programs, advocacy efforts and research programs. We talked about lung cancer programs and services offered by the Association for both patients and their caregivers.
Lung Cancer a Top Priority
Real World Health Care: The American Lung Association has a broad lung-health mandate. Where does lung cancer stand in terms of your overall mission?
Deborah Brown: The American Lung Association envisions a world free of lung disease. Our mission is to save lives by improving lung health and preventing lung disease, as well as to reduce the burden of lung disease on patients and their families. Lung cancer is a priority for the Association, and supporting caregivers is an important aspect of what we do.
Support for Lung Cancer Patients and Their Caregivers
RWHC: How does the American Lung Association help lung cancer patients and their caregivers?
DB: Being diagnosed with lung cancer is difficult. It quickly becomes overwhelming as people process their diagnosis, cope with their emotions and try to navigate the health care system.
We support lung cancer patients and their caregivers by providing comprehensive educational content at www.lung.org/lung-cancer. Our content navigator tool tailors information to each person’s journey, whether they’re a patient, caregiver or health professional. We also offer a toll-free Lung HelpLine at 1-800-LUNGUSA that provides expert bilingual guidance from nurses and respiratory therapists.
Because lung cancer patients and their caregivers value being able to speak directly with others who are in their shoes, we offer a free online support community. It’s a wonderfully caring and kind community of people facing similar challenges.
We also offer a number of resources dedicated to caregivers, including articles, videos, tips sheets and more. These resources cover everything from how to talk about lung cancer and cope with your emotions to self-care tips and how to prepare for the future.
Caregiving is Emotionally and Physically Draining
RWHC: How can family caregivers address the challenges they face when caring for a loved one who has lung cancer?
DB: Being a caregiver in any capacity can be emotionally and physically draining. We believe that family and friends can be better caregivers and advocates by understanding their loved one’s journey and their needs throughout the ups and downs of treatment. Because lung cancer patients are often immuno-compromised, it’s important for caregivers to stay as healthy as possible and up-to-date on their flu shots and other vaccines. And it almost goes without saying: they should never smoke around a lung cancer patient.
When caring for a loved one with lung cancer, it’s important to keep in mind that anyone can get lung cancer, regardless of prior smoking history. However, if the patient has smoked in the past, they may feel guilty and ashamed. Caregivers should reiterate that they are not to blame for their cancer and that they need to let those feelings go.
RWHC: What sort of advice would you give to family caregivers?
DB: Let your loved one know you love them, you are there for them and you are ready to help them, no matter what. Learn as much as you can about lung cancer so you are better able to advocate for them and help them navigate the health care system. The priority is making sure they get the best possible treatment they can.
Understand your loved one’s boundaries. Some patients want their lives and activities to go on as normal and don’t want a lot of help, while others may feel overwhelmed and need assistance. Respect the wishes of your loved one so you can give them both the assistance and the space they need. Open communication is key. However, be mindful of your role. Your loved one may or may not want to tell people about his or her cancer. Do not share information meant to be kept private.
We offer a full range of caregiver tips on our web site, and I encourage your readers to visit the site to get more detail. They can learn about the importance of:
- Keeping appointments and following treatment instructions.
- Getting to know the patient’s care team.
- Letting the patient speak first during doctor appointments.
- Helping the patient stay organized.
Taking Care of the Caregiver
RWHC: How can someone be a better caregiver?
DB: Accept that it’s normal to feel a wide range of emotions. While a positive attitude can improve both your and your loved one’s moods, it can be easier said than done. If you have a hard time staying positive, confide in someone you can trust. Talking about your feelings with a therapist or social worker specializing in cancer may be beneficial.
As mentioned before, stay healthy by staying up to date on your doctor visits and vaccinations. Get plenty of sleep, eat a balanced diet and try to do some form of physical activity every day. Allow yourself to take breaks from caregiving to recharge yourself.
Ask for help if you’re overwhelmed. Use your support system to help you run errands or do chores. Stay in touch with family and friends. Join a support group for caregivers. Some people find strength and support in religion and faith-based organizations.
Remember that every question you have is worth asking. Sometimes medical providers don’t bring up topics because they aren’t sure you want to hear about them. Don’t wait for the doctor to start all of the conversations. Ask all of your questions and make sure they get answered in a way you understand.