Caregiving and Communication: Tips for Talking, Listening and Sharing
When Kate Jiggins, of Seattle, Washington, was diagnosed with breast cancer in September 2015, her husband Julian worked fewer hours to help care for her and their two young children while she had chemotherapy.
“[My husband] has stepped up to the max to help me deal. But it’s put a lot of pressure on him, and I have a lot of guilt about not being able to take care of things I normally do,” says Kate, 38. “That’s why we try to keep communication really fluid so there’s not an explosion. We talk things through.”
It can be overwhelming to care for your partner, parent, child or other loved one with breast cancer. Communication is the basis of any relationship, but sometimes emotions get in the way.
Experts suggest several methods to help both you and your loved one communicate and cope with the changes a caregiving role can bring to your relationship.
Talking About Cancer
As a caregiver, you’ll likely talk to your loved one’s healthcare providers, other people with cancer and other caregivers to find out about breast cancer. You may also do your own research.
To make sure you have good medical information, Sara Goldberger, LCSW-R, senior director of programs at Cancer Support Community, recommends going with your loved one to the doctor and asking questions of the medical team. For online research, use sources that have been vetted by healthcare providers, such as the National Cancer Institute, the American Society of Clinical Oncology, the American Cancer Society and Living Beyond Breast Cancer.
As you learn more, you will be faced with decisions about what to tell or not tell your loved one. Ms. Goldberger recommends asking what the person wants to know.
“None of us are mind readers,” she says. “Some people are information seekers and some aren’t, but I wouldn’t make assumptions.”
Deb Benn, 58, of Lafayette Hill, Pennsylvania, was selective about what she shared with her sister, Lynn Folkman Auspitz, who was diagnosed with breast cancer in 2009. Deb cared for Lynn, who is now LBBC’s manager of community engagement, while Lynn was undergoing chemotherapy.
“I didn’t want her to worry. I wanted to bear it, I guess,” Deb says. “Lynn is a very positive person and I wanted that [positivity] to fill her, not some negative concerns. If someone was going to give her negative information, let it be the doctor.”
Whether you choose to share a lot or a little, Deb encourages caregivers to be honest. “If your loved ones ask a question, answer it,” she says.
Coping With Relationship Changes
It may be hard to talk about how caregiving might change your relationship. But it’s normal for relationships to change after the trauma of a breast cancer diagnosis.
“No. 1, our sex lives are nonexistent,” Kate says. “Julian is holding down a full-time job and doing all the stuff I don’t have the time, energy or health for. There’s not much time to connect on a husband and wife level.”
While some partners feel the experience deepens their relationship, it’s common for caregivers to feel stress, resentment or other frustrations, Ms. Goldberger says. You may feel your relationship has become one-sided. Your loved one may worry about being a burden to you. “That’s why communication is so important,” she says. “You don’t want to let things go.”
If you are caring for a parent with breast cancer, you may feel good about caring for them as they once cared for you. But your parent may feel awkward about this role reversal. It may be embarrassing for you to help with tasks such as bathing, Ms. Goldberger says. If you are a parent giving care to your adult child, she may not like that she is grown up but still being cared for by you.
It’s important to regularly have open and honest conversation about what kind of help your loved one needs, Ms. Goldberger says. “Sometimes help may mean physical care, while other times it’s just having someone to talk to.”
If you are struggling, Ms. Goldberger recommends joining a support group, going to counseling or talking to a social worker where your loved one is getting treatment.
Listening and Sharing
Good communication lets each of you express your thoughts and feelings and helps you both understand each other’s limits and needs. Keep the lines of communication open by asking not only how your loved one is feeling, but also what they are feeling.
“The key is to listen more and talk less,” Ms. Goldberger says. Ask questions that cannot be answered with a simple “yes” or “no,” and allow your loved one to talk so you can understand what they are trying to say to you. For example, ask, “What did the doctor say?” rather than “Did you speak to the doctor?”
Be prepared to hear anything. Your loved one may be thinking about death or be worried about the future, and the words may prompt strong emotions for you that may influence what you say or how you behave. Be aware that your loved one will react to how you communicate, including your tone of voice, body language and facial expressions.
You don’t have to have a reply, but be ready to listen. Keep the conversation going by saying “Really?” or by rephrasing what was just said. You should also be prepared to just be there with your loved one and remove pressure to talk.
Sharing can help you deal with conflict, support each other and reduce anxiety.
“It’s important for [Julian and me] to be open with each other, to keep our emotions untangled. Otherwise it’s too easy to project our emotions about the situation onto each other,” Kate says. “I would much rather that my caregiver be honest with me than feel stifled and overwhelmed. Those emotions aren’t going to go away, and burying them isn’t going to serve either of you well. So sit down and unpack before it becomes too much.”
Remember that, as a caregiver, you shouldn’t feel alone. It’s important to share your feelings and be heard. It can be helpful to tell your concerns to someone other than the person you’re caring for, such as a healthcare professional, friend, clergy member, another caregiver or a support group.
“I’ve got colleagues at work who went through the same thing, so I chatted to them about it,” Julian says. “Talking with others in similar situations is helpful to understanding issues that you’ll need to deal with and make decisions about.”
Navigating Strong Emotions
Caregiving can take a physical, mental and emotional toll. “Being tired and stressed all the time has added a load,” Julian says.
Kate agrees. “There has been more bickering than there usually is because nerves are frayed. We typically get along very well.”
Sometimes it’s important to take a break and not react in the moment. “If you feel your blood pressure rising, start with a moment of reflection to collect your thoughts. Ask yourself if this person meant to hurt your feelings. Then come back when you are calmer,” Ms. Goldberger says.
Once you’re ready to share your concerns, use “I” instead of “You.” For example, say, “I need a break” instead of “You never help me.”
It’s OK to tell your loved one you need time to take care of yourself. Ms. Goldberger recommends approaching this conversation by saying something like, “I’m feeling exhausted and overwhelmed, but if I can take a little break, I will be good to go.”
Asking for and Accepting Help
Every caregiver needs and deserves help. Learning to ask for and accept help can lessen stress and make communication easier.
Deb’s support team included her husband, adult children and friends. One friend who lived a couple blocks away would come over to make dinner, cook and clean up while Deb was caring for Lynn. “It was a tremendous help,” she says.
Kate and Julian have asked friends to help take care of the kids so they can have an occasional night out. “It’s important to maintain our connection. If we go out with our friends, it encourages us to talk about other things, such as the latest restaurant and what movies are out,” Kate says. “The simple stuff adds up and really makes a difference.”
Asking for help doesn’t mean you’re weak; it means you’re strong, Ms. Goldberger says. “You don’t have to do it all. No one can do it all.”