What to expect when you become a caregiver– and how to cope with the challenges

Like most people who become caregivers, Carol Coulther had no warning.

But in 2016, her husband, Rich, had a stroke as he was about to leave work for their home in Rockaway, New Jersey – and the whirlwind of demands began.

Immediately, she was in charge of keeping track of doctors and monitoring his care. He’d been devastated, physically. “It took six weeks before he could move a finger,” she said.

But as her husband moved between care facilities and began to make progress, Coulther found herself planning for what life would be like when he was discharged.

Coulter was one of millions of other people in the United States who found themselves serving as a caregiver. Estimates vary, but a report released in July by the AARP and National Alliance for Caregiving said that in more than 59 million people were caring for an adult with a complex medical condition or disability.

Each caregiving situation is unique – and challenging, said Dr. Colleen McIlvennan, a nurse practitioner who is also a professor of medicine in cardiology at the University of Colorado Anschutz Medical Campus in Aurora.

“No one’s prepared to be a caregiver,” she said. “It’s a lot of on-the-job training.”

But McIlvennan, who has both personal and professional interest in caregiving, and Coulther, a volunteer leader of the American Heart Association’s Support Network’s online Stroke Caregiver group, said caregivers can take steps to prepare for the challenges that lie ahead.

Their suggestions include:

Find a way to organize things

“You have to write everything down and stay organized,” Coulther said. “So that’s the first thing I did.”

She already had some caregiving experience. Before her husband’s stroke, the couple and her brother had helped her mother after her series of heart attacks and strokes.

Coulther’s background as a special education teacher also helped. “I went into teacher mode,” she said. “I got a binder, and I made dividers for doctors, medications, what therapists were saying.” When it became clear her husband would eventually be coming home in a wheelchair, she started tracking what equipment she’d need, such as a hospital bed and an accessible commode.

Space was cleared in what used to be their dining room. Her daughter, Rachel, worked on touches that would make it feel like home.

They kept track of appointments and home visits from nurses, occupational therapists and physical therapists on a big calendar on the refrigerator. “I wasn’t responsible for it,” Coulther said. “All the OTs, the PTs, everybody just wrote on there.”

Learn how to ask questions

Coulther said that being a medical advocate is a huge part of being a caregiver.

McIlvennan understands this firsthand. She decided to be a nurse after her father had a heart attack while she was still in high school. Over the years, while her mother handled day-to-day care, McIlvennan helped with the medical side of things from afar until his death four years ago. Now, she helps organize the medical aspects of her mother’s care.

Learning how to ask questions is an important part of being an advocate, McIlvennan said. If something doesn’t seem right, “be sure that you get clarification as to why you feel that way.”

Professionals don’t mind questions, McIlvennan said. “It is absolutely what we’re there for.” Questions tell the health experts that the caregiver is engaged and wants to collaborate as a team.

As a professional, she often starts conversations with caregivers and patients by asking what’s their understanding of the situation or diagnosis. A caregiver could ask the same thing of their health care team.

Coulther learned that timing for questions mattered.

“If I wanted to talk to a nurse or a doctor, I would say, ‘When is a good time?’” It showed she had a question but understood they might have other demands. “I always got a good response from doing it that way.”

Don’t be afraid to ask for help

“Caregiving is an overwhelming responsibility, and often one person cannot do it themselves,” McIlvennan said. If a caregiver is afraid to ask for help, it can be “a really, really difficult experience.”

Caregivers can start finding help by asking their health care team what programs are available for their specific situation, she said, whether it’s stroke, heart surgery or McIlvennan’s specialty, heart failure patients who need a left ventricular assist device, or an LVAD. (She helped write an American Heart Association scientific statement on caregiving in that situation.)

The American Heart Association and the American Stroke Association offer caregivers resources, including the Support Network that Coulther is part of. The network promises a private place to connect with others who are going through similar experiences and receive emotional and informational support for all kinds of heart and stroke conditions.

Coulther and her husband got help from family. Their daughter quit her job to be with him when he first came home, which let Coulther return to work.

The couple later attended a “stroke camp,” where Coulther first had the chance to talk to other caregivers. “It was life-changing for us,” she said.

Coulther has continued to draw on support from other survivors and caregivers online. She recently drew on their help when she and her husband were preparing to travel to the wedding of their son, Tim. People jumped in with suggestions and also congratulations, “because we’ve all become friends,” she said.

Expect things to change

“The intensity of caregiving fluctuates over time,” McIlvennan said. So caregivers need to be ready to adapt.

Coulther said she wished she’d known from the start that nothing about caregiving stays the same for long. In her case, that was often a good thing, as her husband kept improving. But even that meant “as soon as we got something working and we got a routine going, everything would change.”

The lesson she learned from that experience is to hold off on making permanent, costly changes to your home. When her husband was discharged, he needed a wheelchair, which could have required building permanent ramps. But now he gets around with a cane, which would have made such changes unnecessary.

Learn how to take care of yourself

Caregivers experience a lot of emotional strain, McIlvennan said, but often feel like they can’t express it, because the focus is on the patient.

But self-care is important for caregivers, McIlvennan said. The common metaphor is that you need to put on your own oxygen mask before you can care for those around you.

Caregivers could start by identifying sources they can lean on – and being willing to use them, McIlvennan said. “Because if they’re not taking care of themselves, it’s impossible to take care of the patient.”

Coulther agreed that self-care was important, but taking your focus off a loved one is almost impossible at first. “You just really can’t, and you just really don’t want to.”

But over time, caregivers can find ways to ease into taking breaks. “Don’t expect that you're just going to go out and have lunch with friends for two hours, and you're going to be comfortable,” Coulther said. “You have to do it slowly.”

Maybe you can go sit alone on your porch for a while, she said. “And maybe just going in the back and reading is enough.”

Coulther, a painter, wasn’t comfortable having her husband out of her sight in the early days. So she moved her supplies to be with him. Eventually, she felt comfortable moving supplies back to her art room and spending maybe half an hour at a time there.

Be willing to have hard conversations

Caregivers are often involved in situations in which end-of-life discussions need to happen, McIlvennan said. “Having those conversations with your loved ones early is extremely important so that everyone is on the same page when something does happen.”

Answers may change over time. “But at least opening the door to have those conversations is extremely helpful” for anyone, but especially someone who’s navigating a chronic illness.

Hold onto hope

Caregivers know that especially in the beginning, caregiving is all-consuming and exhausting. “There’s just no answer for that,” Coulther said.

But she tells people to keep looking ahead.

“I tell people, it’ll get better,” she said. “You just have to kind of get through it, and it will get better.”

The American Heart Association’s Support Network provides caregivers many ways to connect, share, and heal together. Learn how at supportnetwork.heart.org.