When your loved one was diagnosed with a brain tumor, it may have instantly and completely changed the dynamic between you two. Suddenly, you have a new role of being a caregiver, possibly in addition to being a spouse, parent or child, while continuing to work or maintain other responsibilities.
The caregiver burnout
“You’re understandably so focused on your loved one’s brain tumor diagnosis. It’s easy to put your own needs aside. But that can lead to caregiver burnout,” says Eleanor Miller, MSN, RN, OCN, an oncology nurse navigator at the Abramson Cancer Center at Penn Medicine.
“Patients with brain tumors are usually very reliant on a caregiver, because they’re not always able to do as much as they want to or were previously able to do, due to side effects from the tumor location or from treatments,” Eleanor explains.
For example, they may not be able to drive, so the caregiver has to do it. There’s the logistical aspect of getting them to and around the hospital for doctor’s visit or daily radiation treatments. Same with managing medications, helping with feeding and dressing, and staying on top of insurance.
Additionally, “the person you knew a few days ago might not be quite the same,” Eleanor notes. “Some side effects are recoverable with rehabilitation. But there can be physical or emotional changes.”
When it all falls on you
“A lot of caregivers are just in go mode. They try to be strong, so they put on a good front,” Eleanor says.
Then, come the signs of burnout:
- You are more irritable or upset.
- You’re anxious.
- You’re not sleeping or eating.
“That’s going to start to affect them,” Eleanor warns. “If they aren’t sleeping or eating well, or emotionally taking care of themselves, then it’s really hard to sustain that caregiver role in the best, most effective way.”
Overwhelmed, exhausted, drained—and scared
As a nurse navigator, Eleanor helps brain tumor patients and their caregivers get access to specialists, supportive services, and education. She has met quite a few caregivers who are often at their breaking point.
Guilt is also common. “There’s uncertainty about what the future holds—whether it is a temporary situation, a permanent side effect, or a terminal illness,” Eleanor says. “So they feel scared about the unknown or stressed or frustrated, and they feel really guilty for those feelings. But they don’t always want to admit that.”
“Many just want to be back to their normal life a month or two ago,” Eleanor notes.
What you can do to avoid caregiver burnout
To avoid getting burned out, Eleanor recommends caregivers seek out help from their family and friends, as well as their medical team—including nurse navigators, social workers, and counselors.
And do it day one, not weeks into treatment when you’re starting to feel overwhelmed.
“It’s not that people don’t want help, but they don’t know how to delegate tasks,” Eleanor says. “Sometimes it’s hard to teach friends and family how to take care of a loved one. So, it’s easier to just do it yourself.”
“But if that’s the case, you can still take help,” she adds. “Someone can get your groceries, do your laundry, or come sit with a loved one so you can take a nap or get out of the house.”
“You’re not weak for that,” Eleanor adds. “It’s actually a sign of courage and strength to ask for help.”