Q & A: What Caregivers Should Know

In a story for All Things Considered, Rebecca Peterson talks candidly about the difficulties of caring for her husband, Stewart Selman, who was dying from a brain tumor. Peterson gives us a complicated story of what it's like to care for someone with a potentially fatal illness. She experienced both compassion and anger, which is a fairly normal reaction when one spouse cares for another, according to Sarah Gupta.

'A Year to Live'

Gupta is a social worker and director of support services for the Brain Tumor Society. She spoke with NPR about what families should know when caring for a loved one who is sick.

Q: Rebecca Peterson spent a lot of time struggling with her responses to her husband's illness and her role as his caregiver. How typical is that?

People tell me, 'I've thought of divorce. I feel like I'm drowning.' And when I talk with caregivers, the biggest sigh of relief comes when I tell them those feelings are normal. It's not wrong at all. Anger, resentment, frustration, guilt, confusion, doubt — they're not comfortable feelings, and they're not talked about as much as grief and loss, but they're all part of death and dying.

Q: In her essay, Peterson said she feels she somehow failed, because there was no "transcendent" moment for her family during her husband's illness, as a neurologist had led her to believe might happen. It's easy to understand why support groups work in positive, spiritual messages, but you don't necessarily expect that from your doctor, do you?

It's hard to tell people negative news. It is not easy to deliver with any cancer, but especially with brain tumors. There are so many unknowns and it's so scary that I think doctors want to allay fears. I have heard of people being told not to worry, and frankly, that's not reasonable, regardless of what kind of cancer it is. I think doctors want to make people feel better, make them hopeful. That's the thing, you don't want to say anything that's going to take away people's ability to hope.

Q: Once a diagnosis is given, what are some of the first things patients and families should do?

Ask what's really going to happen. What can I expect? What can I prepare for? Immediately see if there's a mental-health social worker, a case manager or psychologist within that medical practice, or a support service to put a frame on it that's more person-centered. As you walk into that room, your physician is going to be focused on the body and the symptoms and the treatment. Walking out of that room, you want to interact with a person who is going to focus also on all the emotional and social implications of the diagnosis.

Q: Peterson said sometimes she felt frustrated because when there was a problem, she didn't know which doctor to call first. How do caregivers figure out who to call?

Pinpoint members of your treatment team that you can communicate with. That's essential. People need to know whom they should get in touch with in all phases. Especially in between treatments, because those times can be very scary. If there's nothing active happening, you're sitting there with your mind trying to figure out what's going on in your body. Those can be times that are very anxious

Q: How can families be better prepared to handle the changes that come with a chronic or terminal illness?

Accept the unknowns. The word "prepared" means outlining every single step you're going to take, but that's not possible. You have to deal first with your powerlessness over those unknowns and the loss of control. The way a tumor behaves and the way your body responds is not within anyone's control, including a doctor's, for that matter.

I think right at the beginning getting connected with some kind of support is vital. It's very important to be with other people who know where you're coming from, whether it's a peer network or individual counseling if group work doesn't fit for you. In the initial phases, there's a limit to what friends and family can do. They're going through their own processes of trying to figure things out.

Q: How do you ask for help from your friends and family, especially when you need so much?

You need to be very direct with friends and family about what you need. In those moments, people learn who sticks and who doesn't. And if someone can't help, that's OK. Your friends and family have to take care of themselves, and if they tell you this in a good way, it's honest. That’s better than faking it until they break down.

Make a list, it can be your dream list. It doesn't have to be practical. Give it to people whom you feel secure and comfortable with. The reality is, in that mode you need help, so start getting it right away. Some people do have great nurturing systems, but many don't. In that case, it's getting help from community-based resources.

Q: When you're working full-time, taking care of the kids and your sick spouse, like Peterson, what else can you do to get relief?

Take time off. I know a lot of caregivers would say, "When???" But the psychological sensation that you're taking time for yourself is very important in any time of your life, especially when you're caring or taking care of someone who's ill. You're still a separate person; you still need to take care of yourself. Get time to go for a walk, go to a support group, go out for an evening. I know that's easier said than done, but coming back and feeling like you're sort of re-invested in yourself puts you in a better place to take care of someone.

And it is hard to leave your house to go to places for support. I definitely recommend turning to online and phone communities for caregivers. The caution I would throw out there is make sure they are led by people with formal training in support services. Many organizations also have support publications, usually free of charge. Bring those types of support into your realm, so that you can process and get your feelings validated. I also think there's a relief in the anonymity, that you can really be yourself. You don't feel like you look weak, you don't have to be concerned about maintaining certain facades over the phone or in email.

Q: How can parents help children cope?

People don't give children enough credit. Regardless of their age, they absorb everything, every emotion. Giving them ways to act and to express their feelings and ways to make them feel like have some contribution is very important. For example, they can make sure the person who is ill has water. They can do their homework next to them. And there are ways to work around a patient's unpredictable behavior to make kids feel like they don't have to hide. For brain tumors, books on coping with dementia and coping with changes in personality would be helpful for parents helping their children adapt.

Q: And what do you do when your loved one dies?

Again, be direct with family and friends, and set limits. Knowing your own limits is probably a very important thing as well. People are so wrapped up in caregiving that after it's over, they can break down, physically, in terms of getting ill, and mentally. Getting support from very beginning is going to help you cope in the most effective way possible. I hear people say they just want things to go back to normal, but you're making a new normal. You have to realize that things have changed, or you're not going to cope with what has happened.

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