What your loved one wants (and doesn’t want) from a caregiver

When someone you care about is diagnosed with metastatic breast cancer, caregiving becomes a long-term responsibility. Every person has unique needs. But experts say there are a few things nearly everyone wants, or doesn’t want, from a caregiver.

We hope you will use this article as a starting point to talk to the person you’re caring for about how they feel, what they want, and how to keep your relationship strong as you go through this together.

Want: To be heard

Having a caregiver who wants to take charge when their loved one just wants them to listen is a common complaint among women being cared for by male partners, says Matthew Loscalzo, LCSW, an oncology social worker and executive director of the department of supportive care medicine at City of Hope, in Duarte, California.

Kathy Townsend, 47, from Helotes, Texas, was diagnosed with metastatic breast cancer about a year ago. Her husband Richard is her main caregiver.

“My husband’s first instinct is to try to fix whatever is wrong,” Kathy says. “Sometimes I just need a shoulder to cry on or just have someone listen and let me vent. I’m learning to let my husband know when I need him to do something and when I need him to just give me comfort.”

When your loved one complains about pain or depression, your first instinct may be to run to the store for medicine, or to say “You should plan an outing with friends. That will make you feel better.” But the person you’re caring for may want you to stay there with them or for you to say something like “I’m sorry you’re having a rough day. Can you tell me more about why you’re feeling down?”

The first statement shows you’re listening and that you care. And the second question shows curiosity.

“It’s best to be curious and to listen,” Mr. Loscalzo says. “I don’t think any two things make people feel more heard and more understood.”

Open communication throughout the course of the disease is important because needs can change, says Jennifer Bires, LICSW, OSW-C, an oncology social worker at the George Washington University (GW) Cancer Center, in Washington, DC.

“Someone may feel one way when they’re first diagnosed, and they may feel another way 6 months into their illness, or a year, or 5 years down the line,” Ms. Bires says. “Communication may look different at a different point in treatment or disease progression.”

Want: To maintain healthy relationships

Spouses, parents, children, siblings and other loved ones provide different types of care to each other throughout their lives. But you may not have experienced the depth of caregiving that a metastatic breast cancer diagnosis can bring, until now. With it, you may feel a shift in the roles between you and the person you’re caring for.

If you’re caring for an adult child, it may feel natural to slip back into the parenting role. But remember that just because this is your child, doesn’t mean she is still a child. To her, relying heavily on you may feel like a giant step backward.

If you’re an adult child caring for a parent with breast cancer, you may feel good about helping after everything your parent has done for you. But your parent may no longer feel like the authority figure they once were. Or, they may feel guilty about taking up your time.

“I struggle with the idea that my son may feel like he cannot move on with his own life because he is worried about us,” says Kathy.

These issues can create power struggles, says Shara B. Sosa, LCSW, OSW-C, an oncology therapist at Life With Cancer, in Fairfax, Virginia. Cancer takes away a sense of control, she says. Add to that the feeling that someone is taking away their power, and that can create tension in relationships.

“After a while I realized that I needed my husband to step back and allow me to take control of my diagnosis. I wanted to do my own research and find my own way around learning about my disease and how to cope,” Kathy says. “This was important to me, so I could feel like I had control.”

Ms. Sosa suggests continually asking your loved one, “How can I best help you?”

“That question really helps people living with cancer feel in control of their own lives,” she says.

If you’re caring for a spouse or significant other, you may struggle to keep your romantic relationship strong. Ms. Bires says intimacy is important to many couples, but you may feel uncomfortable talking about it. You may fear hurting your partner, and the person being cared for may feel unattractive or unsure of what their body can handle.

There are many other ways to be intimate without intercourse if it’s not an option or a desire of both partners, Ms. Bires says. She encourages partnered caregivers to seek out more information from healthcare providers. They can help you kick off a conversation.

“Getting tips on how to talk and how to decide on activities that both people feel comfortable with can be really important,” she says.

Mr. Loscalzo says it’s common for a man to react to stressful situations, like caregiving, by withdrawing emotionally and socially. That can make his partner feel alone, angry and critical, leading a man to withdraw further. If this sounds like your situation, Mr. Loscalzo recommends you consider seeing a counselor together, to help you get on the same page.

“Couples who overly focus on the bad aspects of any kind of serious situation do less well than couples who are in balance, who can talk, and have multiple good cries, and tell jokes, and go out and do things together,” Mr. Loscalzo says.

Kathy and her husband agreed to celebrate with a couples’ outing each time she had a scan showing the cancer was stable.

“It is very easy to allow cancer to infect every part of your lives as a couple,” she says. “Learning to put cancer away and just be together has become a vital part of our relationship.”

Don’t want: For end-of-life plans to replace life plans

“I think that initially [after a metastatic breast cancer diagnosis] caregivers tend to think ‘OK this is it. We’ve been given a death sentence,’” Ms. Sosa says. Loved ones may rush into “end-of-life” activities, like preparing or changing wills, or fixing up the house in case they need to sell it. It’s important to think about these sorts of practical concerns, but it’s also important to be sensitive. Watching people plan for life without her can be very traumatic for your loved one.

“It’s this panic-driven decision-making that I think is so hard for the person living with cancer, because they’re just trying to digest what has happened,” Ms. Sosa says, adding, “The worst thing that you can do is stop making plans with someone living with advanced cancer, because then they think you are done with them.”

They may not feel comfortable making long-term plans, says Ms. Sosa, but suggesting enjoyable activities for you to do together in the near future — a day, a week, or a month away — may help people with metastatic breast cancer continue to feel hopeful and supported.

Don’t want: To be a burden

After being diagnosed with a serious illness, most women’s greatest concern is not for themselves but for their family, Mr. Loscalzo says. They don’t want to cause a drastic change to their loved ones’ lives, or to need to rely on family, especially if they are used to caring for everyone else.

“I love my husband. He is my best friend. I don’t want to be a burden to him or steal away his happiness,” Kathy says. “That will only put more strain on our relationship.”

If your loved one can’t work, or medical bills are piling up, she may worry about being a financial burden or taking up too much of your family’s time and energy. She may worry about losing her independence. It’s important to ask about specific concerns, and to talk about them, Mr. Loscalzo says.

Instead of asking “Is there anything you can’t do, that you need me to do?” Ms. Sosa suggests you ask, “Is there anything you want help with?”

The second question highlights your desire to help, rather than the other person’s limitations. Don’t assume the person you’re caring for doesn’t want or isn’t able to do something; ask first.

“[Your loved one] wants to know that they are still an active, contributing member of the family,” Mr. Loscalzo says. “I don’t think there’s anything I’ve heard more often in the 35 years I’ve been doing this work more than that. That cuts across cultures. That cuts across age groups. It is pretty consistent.”

We dedicate this article to the memory of Kathy Townsend, a Living Beyond Breast Cancer Leadership Volunteer.