Cancer Caregiving From Long Distance

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A few days before Leslie Crowder started chemotherapy for breast cancer in Marietta, GA, she received a gift from her mother who was visiting from Philadelphia: a pink silk scarf printed with elephants.

“I have always loved elephants,” Crowder says. “As female creatures, they are fiercely protective of each other. When a female elephant is having a baby, or if she’s sick and needs to lie down, all the other females gather around her in a circle, facing out, so they can see what’s happening 360 degrees around and protect her.”

With the scarf, Crowder’s mother had found a way to circle the women around her daughter. Not only did Crowder receive a scarf, but her mother had also bought one for herself and her other two daughters. The plan was this: Every Friday, while Crowder was in chemotherapy in Atlanta, she, her mother, and her two sisters, nearly 800 miles away, would wear the scarf.

Week to week, as Crowder sat, stretched out in the vinyl recliner in the chemotherapy room at Wellstar Kennestone Hospital, she’d receive texts with photos of her mother and her two sisters (all in different locations) wearing the same scarf she was wearing. If her mother happened to be with family or friends during Crowder’s Friday morning appointments, Crowder would receive photos of those people – an aunt and uncle, her mother’s neighbors, old family friends – wearing the pink elephant scarf.

“It was a very special and unique way to feel connected,” Crowder said.

When a loved one is facing cancer and you’re miles away, it can be a challenge to figure out how to “circle the elephants.” Maybe you feel that your hands are tied by the distance. Or maybe you worry that anything you’d do from so far away wouldn’t help or matter all that much.

But people who’ve had cancer say that the support they get from loved ones all over the globe can be both meaningful and practical. What’s more, it can help you, the distant loved one, feel better, too.

It’s Normal to Feel Conflicted

So says Ranak Trivedi, PhD, assistant professor of psychiatry and behavioral sciences at Stanford University.

It’s common, she says, to struggle to figure out the right thing to do. Should you travel across the country, for example, to be with the person? How often could you do that? Or would you even move there temporarily? And, if so, what about your own life, home, and family (if you have one)?

Trivedi has faced these questions in both her professional and personal life. As director of caregiving and family systems at the Stanford Center for Asian Health Research and Education (CARE), Trivedi researches caregiver-care recipient needs and dynamics. Personally, Trivedi is a long-distance caregiver to her mother, who has had metastatic cancer for 17 years. Trivedi lives in Northern California. Her mother lives in Chicago.

“You often have to ask yourself, ‘Where do I place the bar for when I go to visit my mother in person versus when I do something from afar?’” Trivedi says. Even if you’d like to be there for everything, that might not be an option. Be compassionate with yourself about what you can offer.

Skip ‘Let Me Know What I Can Do’

While it’s not always possible or practical to travel to your loved one who has cancer, there’s still a lot you can do.

One way you can be a big help to your relative or friend: Don’t leave it to them to tell you how to help.

“A lot of people don’t know what to ask for or how to ask,” says Carrie O’Neill, of Falls Church, VA, who is in remission from Hodgkin’s lymphoma.

When you say, “Let me know if there’s anything I can do,” your loved one must still ultimately ask you to do something, which can be a struggle for many people. It also requires them to think up something for you to do, which may be more of a chore than you recognize.

Here are some ways around that.

“Offer choices,” Trivedi says. “Say, ‘Here are some ways I think I could help. Would you like it if I did one of these things?’” Or, rather than “Can I bring you a meal?’ try ‘I’d like to arrange dinner delivery for you one night this week. Which night works for you?”

Or try to connect with someone close to them both socially and geographically. Ask that person what you might do that your loved one would find meaningful or helpful.

Pitching In

There are many choices you can offer from afar. What you offer might depend on just how close you are with the person you want to support.

These first few ideas fall into the category of “pitching in.”

Meals. Through Grubhub, DoorDash, Postmates, Uber Eats, and many other delivery services or directly through restaurants, you can have meals delivered to most locations in the country. Meal kit services, such as Blue Apron, Hello Fresh, Hungry Root, Purple Carrot, and many others, deliver the raw ingredients and instructions for putting together an easy meal.

Household chores. Instacart, Amazon Fresh, and supermarkets themselves deliver groceries.

And food isn’t all you can offer. “You can find a cleaning company to come and clean the house of the care recipient,” Trivedi suggests.

Entertaining children. If your loved one is a parent of young children, thinking of those kids will make their whole family feel supported, too.

“Think about whether their young children could be entertained via FaceTime,” Trivedi says. She suggests sending the children coloring books, activity books, or the supplies for a craft project and working on the project with them via video chat.

Caring for the caregiver. You can also show support of your loved one by supporting their nearby caregivers. Think about the relative or close friend who lives close by and who regularly takes your friend or relative to appointments or is the primary caregiver at home.

“I think people might forget that those people need support, too,” Trivedi says. “Ask yourself what you can do to help not only the loved one but also the boots-on-the-ground caregiver.”

Local caregivers might appreciate a meal, a cleaning service, or help with their small children, too. Ask them what would be helpful. Offer specific things and let them choose or tell you what they need.

Coordinating Care

You are probably not the only one who wants to support your friend who has cancer. No matter where you are, you can help coordinate the efforts of your friend or relative’s entire support network.

“I had one friend nearby who became the touchpoint for my international friends, so they would ask her what they could do to help,” says O’Neill. As the spouse of a diplomat, she’s lived in many countries and received support from friends around the world during her cancer treatment.

You could offer to be either the point of contact for your loved one’s network or the administrator of a care coordination website. An online search for “care coordination websites” yields many results. These are just a few:

  • Caring Bridge allows people living with an illness, or their caregivers, to write and post updates about their health.
  • Lotsa Helping Hands is an online care coordination calendar where people can sign up to provide any type of help needed, such as providing meals, driving the care recipient to an appointment, or picking up children from school.
  • Meal Train is an online tool for coordinating meals for someone in need, whether they are sick, home with a new baby, or grieving the loss of a loved one.

Taking on Remote Roles

Maybe your relationship with your loved one with cancer is close enough that, if you lived nearer to them, you would be doing a lot of the caregiving. You can still take an active role.

Here are some things you can do:

Provide emotional support. Boots-on-the-ground caregivers can get burned out providing all the hands-on care. They drive their loved one to appointments, make drugstore runs, and maybe even stay in the home with the person who has cancer. At the end of the day, they may not have the stamina to also provide a listening ear or a shoulder to cry on.

“They’re managing the logistics, which is different from the emotional aspects. So maybe you, as a long-distance caregiver, can provide that emotional support,” Trivedi says. You won’t have exhausted your emotional and physical resources to the extent a local caregiver might, so you can be available for long phone calls and video chats.

Join in on telehealth appointments. Look into whether you can attend your loved one’s doctors’ appointments via online video conferencing. This option has become more widely available since the COVID-19 pandemic.

Set up family meetings. Plan regular family meetings via video chat with the person who has cancer and their other caregivers to discuss health updates and address ongoing needs. Set up the meetings on a recurring basis, or schedule them as needed.

Hire professionals. At some point in your loved one’s care, especially if all their caregivers live at a distance, you might consider hiring a professional or two to provide local help. Home health services send health care providers to the home of the person in need.

You may also consider working with a remote care coordinator. These professionals can help find and coordinate providers for all the health care and daily needs of your loved one.

Showing That You Care

Your friend or relative’s daily needs, including meals and care coordination, may be covered. Maybe you simply want to show that you are “there in spirit.” There are many meaningful ways to do that.

Shortly after O’Neill started chemotherapy in Falls Church, VA, her mother-in-law reached out to her from Charleston, SC, with special instructions.

“She said, ‘Wherever you are on Sunday between 7:00 and 7:30, prepare yourself to receive healing energy and healing thoughts. Uncross your legs and be present in the moment. Be receptive to good things that might come to you.”

O’Neill’s mother-in-law is a reiki master. Reiki is a Japanese energy-healing technique. During the pandemic, she began leading a group for reiki practitioners around the country via Zoom. Each week, they would focus on different people who needed healing energy and send that energy to them using reiki techniques. On this particular Sunday, O’Neill was one of the people on whom the group would focus its collective intention.

“It meant a lot to know that there was this large group of people with this intention for me,” O’Neill said.

But you don’t have to be a reiki master to show your loved one that your thoughts are with them. An old-fashioned care package goes a long way. Both O’Neill and Crowder count care packages among the thoughtful gifts they received during their cancer treatment. Crowder appreciated that one of the packages she received didn’t seem to have anything to do with cancer – no pink coffee mugs or T-shirts bearing inspirational sayings about fighting breast cancer.

“It was filled with nail polish, lip gloss, and a tank top for running. Nothing about cancer. It was just all about things that I like, and it made me feel so normal,” Crowder says.

Tapping Into Tech

Many higher-tech gifts are also designed to show love and support from afar. Long-distance touch bracelets and long-distance touch lamps, for example, come in pairs. The caregiver and the care receiver each have one. Touching your bracelet or lamp sends a light signal to the other bracelet or lamp to show the recipient you are thinking about them.

Similarly, Love Box designs wooden gift boxes intended for long-distance relationships. Inside the box, a tiny screen shows pictures, messages and other digital images that the other person can control remotely. When your loved one opens the box, they can see a new picture or message from you.

But you don’t have to fill a care package with gifts or send a high-tech gadget at all. Even the outpouring of simple messages O’Neill received via social media from friends in Israel, Ukraine, Poland, and across the U.S. mattered a great deal to her.

“All these different creative ways of helping or showing support,” O’Neill says, “make a really big difference.”

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