Help for the helpers: Why caregivers need self-care
“I couldn’t even think about my needs.” That’s how Tamesha Keel describes becoming a caregiver after her mother, Mary Keel, was diagnosed in 2013, at age 65, with metastatic breast cancer. She had moved into Tamesha’s Florida home a year before.
Her mother, who also had moderate Alzheimer’s disease, went to an adult day program while Tamesha worked, but her caregiving duties were still heavy. Tamesha bathed and dressed her mother when she became weak, cooked meals, gave her medicine and did other chores.
Feeling overwhelmed, Tamesha talked with family members who had been caregivers. “My aunts said, ‘You must take care of yourself. You can’t be up all night and then go to work.’”
Recognizing the wisdom in that advice, Tamesha got help from community volunteers who knew her mother. When she could afford it, she hired nursing assistants. This gave Tamesha time to sleep more, get massages, meditate, pray and talk with a therapist. Those things helped her create what she calls “an environment of love” for her mother and herself. Mary Keel died from metastatic breast cancer in 2014.
Tamesha, 39, now works as a coach and consultant in Arlington, Virginia. Her work includes encouraging caregivers to care for themselves. She likens it to adults on airplanes being told to put on their oxygen masks first before helping children and others.
“If something happens to you, where is your loved one then?” she says. “You really need your own oxygen to not only survive, but to thrive.”
Caregivers can be partners or spouses, adult children, parents, friends or neighbors. Caregiving can be both an enriching and difficult experience for the giver and receiver. Some caregivers set aside their own needs to help the other person. They may think it’s selfish to pay attention to their own wellbeing. But ignoring self-care can cause stress or burnout, which may trigger guilt, anger, resentment or depression.
For any stage of disease, breast cancer caregiving can be stressful. The intensity of needs may rise or fall with treatments, ongoing side effects or other issues. Yet there are differences in caring for someone with early-stage breast cancer or someone with metastatic disease.
Hands-on care for early-stage disease is usually time-limited. When primary treatment ends, most caregiving tasks also end. Caregivers who cut back on work, school or activities often return to their usual schedules while still being supportive of their loved ones. Still, though it may be temporary, the help you give your loved one with early-stage breast cancer is important and needed.
Greg Sayles, of Bettendorf, Iowa, cared for his wife Joy, then 63, after her diagnosis of early-stage breast cancer. Greg drove her 3 hours away, to Chicago, for surgery and again every 2 weeks for 5 months for follow-up appointments related to breast reconstruction. He emptied her drains after surgery, cooked meals, did housework and gave Joy encouragement when treatment zapped her energy and strength.
Despite Joy’s urging that he take time for himself, Greg, who was retired, gave up his regular golf games for about 9 months while Joy was in treatment. “I didn’t like to leave her for long periods of time,” he says. He resumed after she healed from reconstructive surgery.
For metastatic breast cancer, active caregiving might continue for years. Treatment may change, but it does not end. Caregiving duties may increase as the disease progresses. Caregivers’ time, strength, spirit, income and relationships can be affected. Caregivers also provide long-term emotional support for their loved one, while needing such support themselves.
Almost every day, Sara Strauss drove about 15 miles to her mother’s home outside Philadelphia. Her mother, Deb Strauss, 64, was diagnosed with metastatic breast cancer 24 years ago and had been receiving chemotherapy for a year. Deb had difficulty walking and using her left arm. Sara, 32, emphasizes that she enjoyed being with her mother and chose caregiving because she wanted to do it. But she made a point of going home each night.
“It was important that I wake up in my own bed, with my own surroundings,” Sara says. “That made it easier to maintain relationships with my friends and do things that a normal young person living in the city would be doing.”
Caregivers can mistakenly overlook their own needs. “You have to think, ‘How am I going to maintain and sustain myself for the long haul?’ That’s why self-care is so important,” says Christina Bach, MSW, MBE, LCSW, OSW-C, an oncology social worker.
Self-care for caregivers benefits both sides of the caregiving relationship. Sisters Jennifer and Debby Simpson have been navigating long-distance caregiving. Debby, who was diagnosed with early-stage breast cancer in 2000 and metastatic breast cancer in 2004, had a heart attack in Paris in 2014. Jennifer flew to Paris, stayed for 3 weeks and accompanied her sister home to Chicago. Jennifer then traveled regularly back and forth from her Albuquerque, New Mexico home.
Debby worried that caregiving would be too hard on Jennifer. She was glad when Jennifer established a routine of doing yoga, taking walks, going to a coffee shop to write, and sharing duties with Debby’s friends. “She would go visit her other friends” while in Chicago, says Debby, who at 55 is 4 years older than her sister. “I think that’s really important, not only for the caregiver but also for the person receiving care, to get a little break.”
Working with a therapist, Jennifer defined her own needs. “Therapy was helpful in identifying how to set boundaries but still be present and supportive,” she says.
Ms. Bach, who also is the psychosocial content editor for OncoLink.org, tells caregivers, “You can’t lose yourself” in caregiving tasks. “You need to find a nice balance [with self-care] because that makes you a better caregiver,” she says.
Veronica Cardenas, PhD, a licensed clinical psychologist in Patient & Family Support Services at Moores Cancer Center at UC San Diego Health, facilitates a cancer caregiver education and support group. There, she encourages caregivers to follow daily self-care actions used in cognitive behavioral therapy, known as G.R.A.P.E.S.:
G — Gentle. Be kind to yourself in your thinking and replace self-criticism with gentle thoughts.
R — Relax or rest. Give yourself downtime to unwind.
A — Accomplishment. Do something you need to cross off your own ‘to-do’ list, like pay a bill.
P — Pleasure. Include fun and enjoyment in your day. Do something that makes you smile or laugh.
E — Exercise. Add movement and physical activity, even if it’s just walking the halls while the person you’re caring for receives treatment.
S — Socialize. Maintain personal connections with friends and family.
Include self-care in your daily activities. Think about when you can fit in a few minutes for yourself. For longer breaks, if the care recipient does not want to be alone, or cannot be, arrange for someone else to visit while you go to dinner or a movie with others.
Caregivers’ self-care methods vary with their interests and situations. Some people take up a hobby or passion they used to enjoy. Others choose new activities or supports. Ideas to try:
- Running, walking or using an elliptical machine at a low speed can help mood and improve physical condition. Start with short distances or a few minutes and increase gradually. You may want to walk with the person you’re caring for, or meet up with a friend.
- Writing may help you express feelings or simply escape. Look for a caregivers’ writing group where you can choose to share your writing or keep it private.
- Handcrafts, knitting, coloring and other activities are restful, creative and even social, when done in a group or class.
- Prayer or meditation can be calming. Spending time with your religious or spiritual community may support you.
- Massage, reiki, yoga and mindfulness are integrative practices that many find comforting and strengthening. Some cancer centers offer these services and may also make them available to caregivers.
Let Others Help
Caregivers often resist asking others for help. You may feel you should be able to do it all, or that only you can do it the right way. “Check the accuracy of your belief” about someone offering help, advises Dr. Cardenas. In her experience, people who have more than one person caring for them do better than those with just one caregiver. “No one person can do it all,” she says.
Keep a list of specific tasks you need help with, such as “Someone to stay with Mom next Tuesday while I go to the dentist.” Then, when people ask what they can do to help, you’ll be prepared with answers. If you can, consider hiring respite or relief care so you can have time for your own activities.
Ask the person you’re caring for how much help is wanted. You may be surprised to hear the person wants to participate more in care or would like someone else to help at times.
Isolation is perhaps the greatest burden for caregivers. In a caregivers’ support group, people with similar experiences share advice and find a safe place to talk. In-person groups are held at hospitals and through organizations, but groups also meet by telephone or online.
At age 25, Mia W.* moved back home to help her mother who was diagnosed with stage IIb breast cancer. Now that her mother’s treatment has ended, Mia sees her role as being “more for emotional support,” and to assist with tasks such as financial paperwork. She works full-time and attends graduate school at night.
Mia uses an app called Project Toe to connect with other caregivers online. She says the app helps her feel as if “I’m not the only caregiver in the world. There are people also going through what I’m going through.”
“Taking care of yourself is not selfish, it’s necessary and essential to your ability to be a caregiver,” Ms. Bach says. “Because if you’re not taking care of yourself, you are no good to that person you want to take care of.”
*Name changed by request