Being a lung cancer caregiver is both a rewarding and challenging experience. Families and loved ones of lung cancer patients take on many roles during the lung cancer journey. It helps to know what to expect, where to find answers to questions and how to ask for help and get support.
For new caregivers, there are three essential principals that I’d like to focus on; getting educated, getting support and becoming an advocate.
Here are some practical tips that may help those who have willingly accepted this role for a loved one diagnosed with lung cancer.
Get Informed and Organized.
Get educated. Learn about your loved one diagnosis. It’s important to understand the type and stage of lung cancer, whether or not there is any metastasis (cancer that has moved outside of the primary location) and what treatment options are available to pursue. Getting informed and becoming educated about lung cancer and your specific experience is an ongoing process. There are many ways you can get informed and learn about lung cancer.
• Talk to the doctor
At diagnosis there will be forms, printouts, folders, booklets or CDs explaining what cancer is and the different types of treatments. Read them, jot down questions and meet with the treating doctor/facility to ask them to explain what you are reading and how it applies to you. With the patient, keep a log, journal or list of questions for the doctor that you can ask at every appointment.
• Research online
There is a vast amount of information online about cancer and lung cancer and all the different treatments, procedures and medications. Be very cautious about which website you peruse and only visit credible websites. You may visit LUNGevity’s Caregiver Resource Center to access the many resources we have available for people impacted by lung cancer who have been properly vetted. You can also submit questions to our Ask the Experts.
Ask for help. Caregivers willingly and selflessly devote their time to care for their loved ones battling lung cancer, while oftentimes neglecting themselves in the process. It is important to remember that there are resources available to help lung cancer patients and to help caregivers be the best they can be. One of the biggest challenges in asking for help is taking that first step. Given everything else you are focused on while caring for your loved one, asking others for help can take some of the pressure off of to do everything ourselves.
• Asking for and arranging for help
Reach out to family members, friends, neighbors, co-workers, clubs and churches. These are the people who care the most about the patient and they WANT to help. You can also visit LUNGevity’s Caregiver Resource Center for resources on organizations that help you schedule or arrange chores and helping opportunities for volunteers, lists of in person lung cancer support groups and ways to find other resources that help with day to day caregiving responsibilities. Some patients find hope and meaning in being a part of a support network or being mentored by a survivor.
• Seeking out support for yourself
It helps to know there are other caregivers experience the same things that you are experiencing. Talk to other caregivers, seek their advice and learn from their experiences. You can access LUNGevity’s free LifeLine Support Partner Program to be matched with another caregiver who can mentor you and offer you support, you can participate on an online message board and always accept help for yourself from family and friends who care about you!
Become an advocate.
Becoming a patient advocate takes time. You need to be well informed about the patient and their disease. You will need to become comfortable in asking questions and seeking out answers. You will need to form a working partnership with the treating medical team. You also need to be an advocate for yourself, your personal needs and what you are going through during this time.
• Advocate for the patient
The healthcare advocate can be the primary caregiver or a third-party who will advocate for the patient, with their permission. They will be at doctor’s appointments, write down notes, asks questions, relays information on side effects and the patient’s general well-being and keeps accurate health records. Having a healthcare advocate lessons the chance that things will be lost in the “process” of the medical system, side effects aren’t ignored and information is relayed about the patient properly.
• Advocate for personal time
If possible, take time away from caregiving and away from lung cancer. This may be in 5 minute increments, a single morning or an entire day off with the help of family and friends. Research shows that taking this personal time is important, as it allows caregivers to relieve stress and ultimately be a better caregiver. Remember that your health is as important as that of your patient’s health, and avoiding the signs of caregiver fatigue can be detrimental to both you and your loved one. Caregiver fatigue is very real.
Lastly, it does help to know you aren’t alone and that resources are available to help you help the one you love.