It’s not easy caring for a loved one with breast cancer who lives more than an hour away. As a long-distance caregiver, you might feel unsure about how to best help, worried about the future, or guilty that you can’t assist more with your loved one’s day-to-day care.
“It’s hard enough to deal with all the unknowns that go along with a breast cancer diagnosis, such as not knowing how your loved one will respond to treatment. But when you don’t live nearby, you may feel even more helpless,” says Veronica Cardenas, Ph.D., a licensed clinical psychologist who is part of the Patient and Family Support Services team at Moores Cancer Center at UC San Diego Health.
In this guest blog post, Dr. Cardenas shares eight tips on how to take an active, meaningful role in caring for your loved one when you don’t live nearby:
1. Talk with your loved one about how you can help
First, you should directly ask the person you’re caring for, “How can I be most helpful?” It can cause friction when caregivers make assumptions. Some of the things you can offer to do when you don’t live nearby include:
- Calling in during doctor visits to take notes and ask questions
- Handling insurance forms, medical records, and household bills
- Finding out who you can contact on your loved one’s medical team to get advice quickly or after hours. Some cancer centers have a 24/7 hotline staffed by nurses, or an online patient portal for messaging.
- Helping out financially or setting up a GoFundMe page to raise money for medical and living expenses
- Asking the hospital social work team about resources for in-home supportive care and assisting with setting that up if your loved one needs it
- Using websites such as CaringBridge and Lotsa Helping Hands to send updates to family and friends about how your loved one is doing, and to have them sign up to help with tasks such as preparing meals, providing rides to medical appointments, or stopping by to visit
Also, it’s good for people to keep doing activities they enjoy during cancer treatment. You could suggest to your loved one that you watch the same movie, listen to the same album, or read the same book and then talk about it together. If you share a hobby — such as knitting, photography, or watercolor painting — you could each work on a project and share your progress. Those can be good ways to connect from a distance.
2. Learn about your loved one’s condition
Take the time to learn about your loved one’s individual diagnosis and treatment plan. That way, you’ll be better prepared to talk with your loved one’s medical team if you need to and you’ll know what to expect. For instance, it may be helpful to learn in advance about potential side effects that can develop if your loved one is going to have chemotherapy or radiation and what you could do to help them feel better. At the same time, though, you shouldn’t assume your loved one will experience any particular side effects or complications. Each person has a unique experience with treatment.
3. Make the most of your visits
It makes sense to visit during the times when your loved one needs more hands-on help, such as when they’re recovering from surgery or receiving chemotherapy treatments. They may not have the energy to do the things they normally do, and you can support them by providing rides, cooking meals, picking up prescriptions, and assisting with domestic chores. Notice if a task needs to get done, and then offer to take it on. If your loved one is feeling tired and overwhelmed, it helps to generate ideas. For instance, offer ideas of what you can make for dinner. And keep in mind that just being physically present in the room can have a lot of value for your loved one, even when you’re not doing much of anything.
From the beginning, be clear on your objective for the visit. Patients tell me that they sometimes feel their loved ones want to treat a visit like a vacation. Typically, the patient doesn’t want to feel like they have to “host” and tend to you. That just makes things harder for them.
If someone else is taking care of the patient locally full-time, give that person a break when you visit. Ask that person what they normally do, and then offer to take over those tasks for a few days. Give that person a chance to recharge so they won’t get burned out.
4. Stay in touch
Set a time each day or week for phone calls or video chats with your loved one so you can ask how they’re doing. Don’t take offense if your loved one doesn’t always feel like talking about their condition or treatment and sometimes prefers to talk about something else.
Another thing that patients often tell me they appreciate is receiving an uplifting voicemail or text message from a family member or friend who doesn’t necessarily expect a call or text back. Just send a message like, “Hey, just wanted to say hello and that I’m thinking of you. Hope your day goes well.” Or you could cheer them on and tell them you’re proud of them. It’s so simple, but it can be so helpful. Some patients also say they love receiving a card they can hang up or a care package. Those little gestures can go a long way.
Lastly, don’t stop checking in when treatment ends or when your loved one is taking a long break from treatment. The healing process can take months or years. Keep letting your loved one know that you’re still thinking about them.
5. Protect your loved one’s privacy
People often forget to be sensitive to the patient’s desire for privacy. For instance, sometimes family members or friends share too much information on Facebook, and that can cause friction. Ask the patient what’s okay to share with others, and what’s not. Don’t share details without the patient’s consent. Some examples of details patients often don’t want shared are: the stage of their cancer, whether they’re having a mastectomy, or details about their reconstruction surgery.
6. Don’t let yourself get burned out
Caring for a loved one with breast cancer can be a marathon, and the initial instinct of family and friends is often to give, give, give at the beginning. But be mindful of pacing yourself so that you don’t burn out. Whether it’s about how to space out your visits or how to provide financial support over time, try to plan ahead.
To be an effective caregiver, you can’t lose sight of your own self-care needs. Try to eat and sleep well, exercise, stay on top of your own medical appointments, and stay connected to your own social network.
If you feel that you could use more support, consider reaching out to a peer who has had a similar experience and can share tips about how to get through it. Often, you’ll find that you know someone in your community, like a neighbor or work colleague, who has been a long-distance caregiver for someone with cancer. You could also look for an online support group for cancer caregivers or contact a local cancer center to see if they offer a support group or individual psychotherapy for caregivers.
7. Take a team approach
For many people with breast cancer, treatment can take a year or more. For those with metastatic breast cancer, treatment doesn’t end. In either situation, it’s not ideal for all the caregiving to fall on one or two people. Think about whether you can put together a team of family members and friends — some who live nearby and some who live further away — who can step in during times when more support is needed.
Chances are, some people have already offered to help and they just need specific instructions on what to do. Fortunately, coordinating the efforts of a caregiving team is something that you can do from afar by phone, email, and text. And as I mentioned above, you can use sites like CaringBridge that allow people to sign up to do tasks on particular dates. Just remember to include your loved one in decisions. They might prefer certain people to take a bigger role in their care or to come by to check in on them.
8. Realize that this experience can bring you closer
I have seen many situations in which a patient and a loved one became closer after a breast cancer diagnosis. In some of those cases, the relationship was strained prior to the diagnosis. What often happens is that the patient and the loved one end up talking more and seeing each other more.
Of course, each situation is unique, and not all relationships are strengthened by a cancer diagnosis. But for some people, it can be helpful to realize that an experience like this can provide an opportunity to grow and strengthen a bond with a loved one. Later, you could both say, “We got through this together.”
Have you found ways to support a loved one with breast cancer from afar? Join the discussion in the Community at Breastcancer.org in the online forums for Caregivers, Family, Friends and Supporters and for Family and Caregivers of Loved Ones with a STAGE IV Diagnosis.
Veronica Cardenas, Ph.D., is a licensed clinical psychologist. As part of Patient and Family Support Services at Moores Cancer Center at UC San Diego Health, she provides psychological assessment, diagnosis, and ongoing therapy for patients and families who are experiencing issues that are either related to the cancer experience or are interfering with cancer treatment.