Jeff Tennant’s wife, Susan, used to tell him that she thought she would die from cancer. Susan had good reason to be concerned: Her mother was diagnosed with breast cancer in the 1960s, survived, and later, at the age of 87, died of cancer-related complications; her father died of lung cancer.
“Because of that, we were careful to maintain her checkups and mammograms,” Tennant says of his wife.
Sadly, Susan was right. Years after having a lumpectomy and surviving breast cancer, she was back at the doctor for a routine checkup in 2014. This time when the tests came back, they showed a different diagnosis: ovarian cancer.
She spent the next two years in and out of the hospital undergoing treatment. When doctors eventually told her there was nothing else they could do, Jeff Tennant retired early to take care of Susan at home before she died at 61 in January 2017. Their daughter, Adrian, 32, also quit her job to help.
In the United States, more than 1 in 6 Americans work as a full-time or part-time caregiver. Being a caregiver isn’t easy, and it isn’t a one-size-fits-all role. Not only do caregivers provide medical care, but they can also act as an advocate, social worker, insurance claim specialist, financial adviser, housekeeper and more — all while juggling their own lives, which often includes a full-time job or managing their own families.
“In my case, it was a full-time job,” Tennant says. In fact, it was more than that.
“Any full-time job I’ve ever had, I’ve had at least two days off. But when someone is lying at home in a bed, you tend to do it 24/7.”
Each caregiver has a different day-to-day reality, says Kimberly Fradel, care coordinator with UNC REX Cancer Care. “They take on a lot of various roles to ensure quality care of their loved ones while maintaining the household activities that patients can no longer do.”
Pat Travis became a caregiver after her boyfriend, Michael Roseborough, was diagnosed with cancer in January 2016. The doctors didn’t know where the cancer had started and couldn’t effectively treat it. Travis says her boyfriend was given six months to a year to live and survived for 11 months until his death at the age of 58 in November 2016.
“When he was first diagnosed, I was still working. That was hard, but at that time he could still do quite a bit of stuff for himself,” Travis says. “Then I retired in June, and it just so happened that he started to really decline in that time.”
“This was probably the most devastating experience I’ve had,” she says. “It was just very painful seeing him suffer.”
The weight of being a caregiver and seeing someone you love in pain can come at the expense of a caregiver’s physical, emotional, mental and sometimes financial health. “Caregivers have a unique role in that they are living the same experience, but in a completely different way than the patient,” Fradel says. “They share in the worry and responsibility. They try to respect the patient’s right to make their own medical decisions, which may or may not be what they would choose.”
But if caregivers don’t take care of themselves, they won’t be able to give the best care to their loved ones. If you’re a caregiver, consider these five steps to help you succeed in this challenging role.
1. Remember you have needs, too.
When a loved one is diagnosed with a debilitating condition, it can be easy to keep your sole focus on his or her needs. “When someone is so sick and approaching death, you kind of just think, ‘Why should I take care of myself? Everything is good with me,’” Tennant says.
But it’s important to remember that your needs are a priority, too. Getting enough sleep, maintaining a healthy diet and staying active are all necessary to staying healthy for yourself — and the person you’re caring for.
“If I don’t take care of myself, I can’t take care of him,” Travis says. “I made sure that I ate, got the right amount of rest and exercised.” Travis says she also journaled, which “really helped to clarify and clear my mind.”
2. Find your village.
Because of a caregiver’s unique role, talking with people who understand the responsibilities of a caregiver can help alleviate some of the stress and pressure.
“It can be helpful for caregivers to connect with one another to not only talk about the worries and challenges, but also to share the moments of hope,” Fradel says. “It can feel empowering to recognize that you’re not alone.”
Consider attending a caregiver support group, offered at both UNC REX Healthcare (Sharing Support) and UNC Lineberger Comprehensive Cancer Center (Caregiver Conversations), for people helping care for someone with cancer. You can also consider seeking professional counseling.
Counseling helped Travis her sort through both the process and aftermath of caregiving and grief. “When you go through a loss, you don’t realize some of the problems you have are a result of that loss. For me, talking to someone just gave me clarity and convictions of my thoughts,” she says.
3. Stay organized.
From doctors’ visits to treatment schedules, there are many moving parts that go along with being a caregiver. Staying organized, writing things down and keeping information handy can help keep you on track.
“Our patients get a treatment notebook at the start of treatment, and we encourage patients and caregivers to keep all of the important medical information in that notebook so they can easily access it,” Fradel says. “Sometimes patients and caregivers will include insurance and financial information so that it’s all in one place.”
Tennant says that caregivers have to “become a student of the process,” which includes taking a lot of notes. “I would constantly have Susan and other people asking me questions. ‘How is she doing? What is she doing? Why this, and why that?’” he says. “By writing, I started getting good at organizing my thoughts and actions.”
Tennant also kept a calendar that included what was happening every day and medication information. “You basically have to document the process because you never know who may need to come in in the middle of the process and become an important part of it, and they need the history and documentation about what’s going on.”
4. Make use of your resources.
Many of the concerns of a patient can fall to a caregiver, and it’s easy to become overwhelmed. But it’s important to remember that you have resources available to you in the form of your medical team. Doctors, nurses, social workers and financial counselors can help you with your varied concerns.
“If you are worried about finances, for example, or the logistics and pragmatic parts of being a caregiver, reach out to your team,” Fradel says. “An oncology social worker will be knowledgeable about the types of resources available to you in your area.”
5. Ask for help.
A caregiver’s responsibilities can be demanding, and taking on too much can be harmful to your overall health and well-being. But it’s important to remember that you may have people around you that want to help — all you have to do is ask.
“When I’m feeling stressed, confused, frustrated or feeling down, I have no problem reaching out to people. I think that’s something that a lot of caregivers don’t realize that they should feel comfortable doing,” Travis says.
Help can come in a variety of forms — be it friends, family, church, support groups or counselors. Make your requests specific, so people know exactly how to help: If you need someone to pick up the kids from soccer on Wednesday or to pick up a new prescription, say that.
Fradel also recommends using social media as a way not only to distribute information, but to safely ask for help. “There can be many logistical, practical, financial and emotional concerns that come up in a patient’s course of treatment. Caregivers benefit from having others help,” she says. “Using social media to ask for what they need — whether it be meals or rides to treatment — can be beneficial.”
If you don’t use social media, Fradel suggests designating a friend to be your point person who can relay updates. “That gives the caregiver the opportunity to really focus on themselves and their loved ones,” she says.
Remember, sometimes the person you’re caring for has the same hopes, fears and questions that you do. Share those messages with your loved one. You might not want to worry him or her with how you’re feeling, but Fradel says this type of communication can help make the situation feel less heavy and more manageable.
Learn more about cancer support groups available for caregivers through the UNC Lineberger Comprehensive Cancer Support Program and UNC REX Cancer Care.