A caregiver's advice for dealing with cancer
Being a caregiver to a cancer patient comes with a lot of responsibilities. To help, we’ve put together information on many of the biggest challenges caregivers take on, including how to manage medications, communicate with your loved one’s medical team, deal with legal and financial issues and handle medical issues you may encounter.
Cancer treatment usually involves taking a lot of medicine. On top of drugs that attack the cancer, patients may take medications for pain, nausea, low blood counts and other treatment- or cancer-related symptoms. Some patients may take up to 20 pills a day. Keeping track of these medications can be a challenge. With some organization, you can make sure loved one is taking the right medication at the right time. Learn more about managing medications.
Taking care of a cancer patient
Cancer patients spend less time in the hospital and more at home than ever before. This means caregivers do jobs that used to be handled only by trained health care professionals. To help, MD Anderson offers information on managing common cancer symptoms and performing basic medical tasks at home.
- Constipation: Prevention & self-help for severe constipation
- Pain Management
- Nutrition, including loss of appetite
Communicating with the health care team
Many cancer patients need help talking with their care providers. Sometimes it’s because of age, sometimes because of illness. In these cases, the caregiver steps in to help listen, ask questions and let the team know how the patient is doing. Here are some simple steps care providers can take to make these conversations as effective as possible:
Try to keep good notes of your appointments from the beginning. Most patients and caregivers are overwhelmed by what they’re going through. Keeping a record of what you’ve been told can help you cut down on miscommunication and remember what you need to do.
Ask questions. It’s the health care team’s job to help patients and loved ones understand the condition, its treatment and its side effects.
Don’t expect yourself to remember every question you have for the doctor. Write them down in a notebook and bring them to your appointments.
Use that same notebook to take notes during the appointment. It will be easier to go back to these notes than to call the hospital about something you forgot.
MD Anderson patients have access to the MyChart system. This online tool allows patients and caregivers to send secure messages directly to their care team. These messages are for non-emergency situations only.
Legal and financial issues
Handling the paperwork that comes with a cancer diagnosis is one of the biggest jobs a caregiver takes on. Here’s what you need to know about:
When Stacy Sager found out her husband, Craig, had acute myeloid leukemia in April 2014, she was terrified. “You have a mix of emotions,” she says, “because you just don’t know what lies ahead.”
But the wife and mother quickly adapted to life as a caregiver. She recruited friends and family to help manage their household in Atlanta, and began traveling with her husband to MD Anderson for treatment.
“I thought it was hard when we were driving an hour to the hospital back home,” Stacy says. “But now I’m flying back and forth two or three times a week. And I hate flying. So I got over that fear real quick.”
Identify the best information sources
After her husband’s initial diagnosis, Stacy started gathering information. “Knowledge is power,” she says, “so I tried to get as much information as possible.”
Stacy worked in health care for more than 15 years, so she felt comfortable and knew the right questions to ask.
“I encourage caregivers to talk to their physicians. Dr. Naveen Pemmaraju spent hours answering any question I had. And that was very helpful. But don’t go on the internet and get scared by statistics. They’re just numbers. We ignore them.”
Maintain a normal home life
Once Stacy and Craig had more information in hand, they shared what they knew with their children.
“Kids are resilient, so we didn’t hide it from them,” Stacy says. “They’ve seen daddy with IV poles and masks. But we try hard to keep their lives as normal as possible. And we work with their school counselors to make sure the children aren’t acting out in any way.”
The biggest change in the children’s lives is their awareness of their father’s fragility.
“They couldn’t have friends over for 18 months because of germs and the risk of infection,” Stacy says. “And every day, they had to come home, strip off their clothes, put on fresh clothes and wash their hands. Elementary school is a breeding ground for germs, so if some kid is coughing next to them, they also know to get up and move.”
The challenge of balancing home and hospital
With Craig now facing his third bout with cancer, balancing the needs of her sick husband and their school-age children remains a constant struggle for Stacy.
“I constantly feel the guilt of leaving Craig and leaving the children,” she says. “The kids don’t want me to leave and he doesn’t want me to leave, so it’s this tug of war. It helps that Craig is very understanding.”
The importance of self-care
After her husband’s diagnosis, Stacy learned the importance of taking good care of herself.
“For the first year and half, I was really focused on Craig,” she says. “He had several infections and it was very stressful.”
Stacy was so affected by her husband’s health challenges that she developed shingles and an autoimmune disease from the stress.
“At that point, I had to take a step back and go, ‘I can’t live my life like this anymore,’” she says. Since then, Stacy has started exercising again and eats healthy foods.
“As a mother, especially, you always put yourself second,” she says. “But what I’ve learned is that caregivers have to take care of themselves first. Because if we’re not healthy, we can’t provide the care and love a patient needs.”