Caring for a loved one who is seriously ill or injured can be a rewarding responsibility, but it’s also an extremely challenging one that often takes its toll on the caregiver’s health.
Caregivers lift their loved ones, bathe them, provide emotional support and companionship, and administer medicines. They also manage medical appointments, make sure their loved one is fed, and pay complex medical bills. And they do all of this for someone who may have behavioral issues or may not even recognize them anymore.
The Burdens of Caring
According to the Family Caregiver Alliance, a national nonprofit caregiver support organization, family or friends care for 65 percent of older Americans. The majority of those caregivers are women who also have jobs outside the home.
“The number of Americans who require caregiving will only rise in coming years as baby boomers age,” notes Nancy Shomo, GC-C, BSW, who coordinates bereavement services and provides counseling for patients and families at Sentara RMH Medical Center.
Caregivers who are caring for aging parents along with their own children—caregivers who belong to the so-called “sandwich generation”— are particularly susceptible to stress.
“That type of situation really isn’t something you can prepare for,” says Tammy Carter James, RN, MDiv, one of the chaplains at Sentara Martha Jefferson Hospital. She experienced it herself a few years ago when she was caring for her mother, who’d had a stroke; was dealing with her responsibilities as a mother to her own children; and was attending seminary—all while still holding a job.
“It catches you unexpectedly,” James says. “There’s no instruction manual to help you through the challenges. That’s probably a good thing, though—most of us would run in the opposite direction if we knew what we had to face!”
Both James and Shomo agree that caregivers who isolate themselves or don’t have good family or community support usually endure greater stress—and male caregivers are more likely to isolate themselves, according to James. “Men seem to be less likely to engage the help of others,” she says. “They often become very protective and controlling of their loved one’s care.”
Those caring for patients with Alzheimer’s and dementia also experience high levels of stress, since the conditions can only worsen over time, with accompanying changes in personality, according to James.
Shomo, at Sentara RMH, and James, at Sentara Martha Jefferson, work with nurses, social workers and doctors who experience the stress of caregiving in their professional lives. Professional caregivers, in fact, often experience the same kinds of stress as those caring for loved ones at home.
“They lose sight and neglect to nurture themselves,” Shomo says. “It’s important for professional caregivers to get a chance to grieve when they lose a patient, and I frequently get calls for assistance from nurse managers at Sentara RMH. In those cases, my role is to help staff process stressful situations, individually or as a group.”
Self-Care for Caregivers
According to Shomo, the burden of caregiving, whether professional or personal, is like holding a glass of water. “It may not seem heavy at first, but if you hold if for long enough, it will become heavy,” she says. “You have to put it down and rest before you can pick it back up again.”
Letting go of the burden for a short time can help you feel refreshed for the next task, she adds. That’s why it’s important for caregivers to take time for themselves. “We’re all unique, so self-care is different for everyone,” adds Shomo. “Figure out what you need to do to recharge—it could be something as simple as reading or taking a bath.”
It’s essential for people who provide care for others to know the signs of stress (see the accompanying caregiver stress test). Feelings of depression are common, Shomo notes, and caregivers may have trouble sleeping, or they may quit exercising.
“You may feel impatient, especially with your loved ones, or get too rough with them,” says Shomo. “And you may stop eating, or even overeat.”
James adds that it’s common to see caregivers who were once neat and tidy start to look disheveled and messy because they aren’t taking any time for themselves. “You can just tell the caregiving is taking a toll on their bodies,” she says. “Caring for a loved one who is ill is a lot like caring for an infant. Even at night, you’re never really able to get into a deep sleep—you’re constantly listening for signs of needed assistance from your loved one.”
Letting Others Help
Allowing others to help you is essential, but sometimes it can be difficult. “Your stress level can be better managed if you surround yourself with adequate resources and understand that you can’t do this alone,” James says.
Shomo often tells her clients that it’s easier to deliver a casserole than to receive one. “Show grace to other people,” she advises. “Allow that person to feel good by accepting help from them.”
Caregivers also should be sure to access available community resources like palliative care, hospice care, adult care centers, Meals on Wheels, senior center classes and respite care for caregivers who need a short break.
Recognizing Emotional and Spiritual Needs
Here are a few steps caregivers can take to care for themselves:
• Share your feelings: Find a support group or start your own group.
• Be honest: Don’t hide the truth from your adult children.
• Don’t be a martyr: You can’t help anyone if you’re not healthy.
• Give yourself credit: Pat yourself on the back—you deserve it.
• Journal: Write down your feelings. You don’t have to share them with anyone.
• Laugh: Spend time with friends, or just talk to someone on the phone.
It’s also important for caregivers not to lose sight of their spiritual health while caregiving.
“Yoga classes, meditation, prayer or retreats are all helpful for recentering and focusing on what’s important,” James says.
Self-Care Tips for Caregivers
Follow these tips to keep yourself healthy—they may help you to be a better caregiver.
• Eat healthy, drink plenty of fluids and exercise.
• Try listening to relaxing music, tapes or podcasts.
• Space out caregiving activities to allow yourself rest periods.
• Reorganize your priorities to avoid overloading yourself.
• Ask for help.
• Share your feelings with a friend or spiritual adviser.
How Can You Help a Caregiver?
Do you know someone who is a caregiver? Avoid saying to them: “Let me know if I can help.” You likely won’t hear back, because it’s so hard for most people to ask for help, James says. Try these suggestions:
• Ask the caregiver to think about his or her needs.
• Call to set up a time to show up and help.
• Offer to stay with the ill person while the caregiver goes out for a few hours or takes a nap.
• Coordinate meal delivery with friends, family and neighbors (you can do this online).
• Send cards—they’re a good mood booster—or a gift certificate.
• If you visit, don’t stay too long—caregiving is hard work, and visitors can add to the stress.
If you need caregiver services:
At Sentara RMH, call 540-564-5118 or email firstname.lastname@example.org.
At Sentara Martha Jefferson, contact the chaplains at 434-654-8407, or contact Palliative Care at 434-654-5597.
Do You and Your Loved Ones Have an Advance Directive?
An advance care plan, also known as an advance directive, enables you to record the type of care you want to receive if you become unable to speak for yourself. Information is available to help you have the “TALK” with your loved ones about your care decisions.
T—Take time to have the conversation with your physician and family.
A—Always be open and honest.
L—Leave no doubt about your values and preferences.
K—Know that advance care planning is a quality-of-life choice.
To learn more, go to Sentara.com and search for “advance care.”
Sentara Martha Jefferson offers an informal Caregivers Coffee drop-in meeting.
Where: Third floor of the Cancer Center Conference Room
When: Alternate Wednesdays, 10:45-11:45 a.m.
Registration is not required. Call 1-800-SENTARA for details.
Caregiver Stress Test
Caregiving is challenging and stressful in many ways. This questionnaire can help you become more aware of your emotions and stress level.
_____ I find I can’t get enough rest.
_____ I don’t have enough time for myself.
_____ I don’t have time for other family members, besides the person for whom I care.
_____ I feel guilty.
_____ I don’t get out much anymore.
_____ I have a hard time getting along with the person for whom I care.
_____ I have conflicts with other family members.
_____ I cry a lot.
_____ I worry about having enough money to make ends meet.
_____ I don’t feel I have enough knowledge or experience to give care as well as I’d like.
_____ My own health is not good.
_____ I would like to get information about caregiving issues and resources.
If you checked one or more of these statements, you may have an unhealthy level of stress. Consider looking for assistance to help you take care of yourself. Self-care can improve the care you provide for your loved one.
Test adapted from The Caregiver’s Handbook, published by San Diego County Mental Health Services, San Diego, Calif.