Caring for the Caregiver: How to Support a Loved One with Lung Cancer
Chronic lung diseases don’t just change the life of patients, but also that of friends and family. When someone is diagnosed with a disease like lung cancer, a loved one often assumes responsibility of helping that person take care of him or herself and navigate this illness, including working with health professionals to make decisions. According to the Centers for Disease Control and Prevention (CDC), more than 34 million Americans are unpaid caregivers to an adult who is ill or has a disability, and more than half of caregivers say their own health has worsened due to caregiving. A lot of times, it can feel like a second job.
Mary Nelson has spent the last 21 years being a caregiver for her husband, Jim, who was diagnosed with chronic obstructive pulmonary disease (COPD) at the age of 55. Jim had a lung transplant five years ago, and now he and his wife travel the country giving presentations about caring for the caregiver.
“It’s hard for a lot of people, especially as the disease progresses,” Jim said. “As time goes on, the caregiver is going to take on more and more responsibility – the patient may not know what medication to take, can’t take care of himself. It’s not a pretty picture.”
The Nelsons now travel the country speaking at conference and workshops and sharing the lessons they have learned about being a caregiver. Below are a few tips they have that caregivers of lung cancer patients can use as well.
It’s OK to Ask for Help
It’s natural for many caregivers to take on more tasks at home, in addition to taking care of their loved one, while trying to hide that they are struggling. This isn’t good for the patient or the caregiver. “As a caregiver, you need help and you need to not be afraid to ask for it,” Mary said. This can mean hiring someone to shovel the snow or taking on fewer projects at work, Jim said. For the Nelsons, keeping communication lines open helped them work through these challenges.
Learn as Much as You Can
Mary encourages caregivers to learn as much as they can about their loved one’s disease through books, websites and support groups. Being informed about Jim’s disease enabled the couple to work with the doctors to create a care plan and strategies in case of emergencies. “We both needed to find out about his disease, about how it would progress, about what we could do to help,” she said. The American Lung Association offers web content specifically curated for caregivers of loved ones with lung cancer.
Things Will Change, but You Can Adapt
Chronic illness brings major changes to the lives of both the patient and the caregiver. “To be a caregiver is almost like having to put a life on hold,” Mary said. “You can make all the plans you want and if the patient isn’t feeling well that day then you aren’t going for that walk or movie like you planned. You have to give up expectations,” she said. “Flexibility allows you to handle the challenges better.” Mary said remaining positive and checking her attitude have been crucial in managing the difficulties of having a husband living with a chronic lung disease. “When someone is fighting just to take a breath, you have to think about what you can do.”
Take Care of Yourself
Self-care is imperative for both the patient and the caregiver. For Mary, that was volunteering once a week at hospice, and Jim understood that was her time to rejuvenate. Also, just like the patient needs exercise daily, get plenty of sleep and eat nutritious meals, so does the caregiver. Caregivers need to take care of themselves and make sure they are meeting their basic health needs and that they have healthy coping mechanisms. “There is guilt because the caregivers don’t want to take care of themselves,” Jim said. “But if they don’t take care of themselves, they will burnout.”
Learn more about lung cancer from the American Lung Association here.
Where have you found the most support during your lung cancer journey?