The Caregiver's Perspective

March 3, 2016
Donna Kearney

This week’s blog post is from the Cancer Experience Registry February newsletter. This newsletter focused on the cancer experience from the caregiver’s perspective. To learn more about the Registry and to join, click here.

Dr. Northouse understands the caregiver experience. At age 27, her husband was diagnosed with stage IV Hodgkin disease. He survived and is doing well, but his diagnosis inspired Northouse to focus her research on cancer caregivers. She retired from the University of Michigan School of Nursing but continues to work actively to articulate the caregiver's role and improve the experience.

"One thing that people lose sight of is that caregivers are often expected to maintain their normal roles--to keep up their lives. That can mean taking care of the children, running the house work--juggling responsibilities. If you're sick, you have cancer, you don't always have those expectations. What often happens is that caregivers may give lip service to taking care of themselves during this time, but the truth is they put their own priorities way down on the list. They know they shouldn't lose sight of themselves, but in reality, it is very difficult. It's hard to find the time and to give yourself permission to do something for you when there are so many other demands. It's tough."

Northouse also believes it is critical for doctors and providers to view the patient and caregivers as a unit in every aspect of the treatment process.

"Each person is affected, and each person affects the other. We know that from our research. We do find some providers who say they are not responsible for the caregiver--that person is not the patient. The point is that the patient and caregiver are a unit, and we need to be sensitive to that. That means asking them how they are doing, asking for their perspective. Do they have any questions or concerns that I can answer for you? Caregivers should not feel like they have to sit quietly in the corner. You are treating the caregiver with the patient."

Caregivers are also in a constant state of vigilance--watching and waiting for something to happen, a new symptom or ache or pain that can signal a bad turn.

"Watchful waiting is the caregiver's job. Vigilance of that kind over a long period can be stressful. What does this mean? When should I get help? Am I over reacting or over reaching? Dealing with the uncertainty, especially when you cannot control it, is exhausting. Many caregivers also report they experience guilt. They feel like they didn't deliver the level of care expected by the doctors, or they missed something important. They often evaluate their care as less than optimal. It is difficult because the care today is so complex."

Northouse does have advice for people caring for a cancer patient: "Remember you are thrust into this situation. No one chooses it. You need to feel you are part of the process. You need information and to get your questions answered. Acknowledge that you are affected by this and recognize that this is a stressful situation. Try to maintain your social network and get as much support as possible. It doesn't have to be just the sick person and the caregivers. Your extended family and friends can be there for you and help out. It can be difficult, especially today when families are so dispersed, but it's important. Cancer can be life-threatening for both the patient and the caregivers."