Self-Care for the Caregiver

Beverly Molnar’s husband, Tim, has undergone 16 surgeries since being diagnosed more than 25 years ago with Cushing’s syndrome, a disorder that causes the body to make too much cortisol. “He is in constant back pain,” Beverly says.

“The lasting effect of the Cushing’s for him was that he got osteoporosis that required back surgeries. Now he hardly ever leaves the house except for doctor appointments.”

She misses the camaraderie that the couple, who live in State College, PA, enjoyed on their frequent outings.

“We used to do everything together,” Beverly recalls. "We would take walks. We traveled a lot. It’s hard not to be able to do these things.”

'Emotionally Exhausting'

Caring for someone with chronic back pain is hard, says Scott Krakower, M.D., a psychiatrist with Zucker Hillside Hospital in Queens, NY.

“It is emotionally exhausting on everyone’s part,” he says. “When you have a spouse or significant other with back pain, you want to be as helpful as possible but sometimes it can feel like you are just doing and doing, and not getting anything in return. You can get to the point where you feel exhausted and upset, and you can lash out.”

Chronic pain is invisible and can be isolating, says Jacob Hascalovici, M.D., Ph.D., the co-founder and chief medical officer for Clearing, a digital health care platform.

“Back pain can keep a person from doing the things they love,” he says. “Having a strong social support system is critical for many reasons but when it comes to pain, it can help with the feelings of isolation.”

Who Is a Caregiver?

A caregiver for someone with chronic back pain could be a spouse, a grown child, or a close relative. Whatever the relationship to the patient, it can be a challenging role.

Mary Andrew’s husband, Paige, has had back pain for years, she says. The discs in his lumbar spine are compressed and his pain periodically flares up.

“You never know when it is going to happen,” Mary says. “He may just turn the wrong way and then be flat on his back for days. The hard part is that I don’t ever know when it will happen.”

While it’s key for someone in chronic pain to have support from loved ones, it can be challenging for the person offering care and support, Dr. Hascalovici says.

“Seeing someone you love in constant pain can have a negative impact on your mental health,” he says. “And caring for another person limits what the caregiver can do. The caregiver can be operating on less sleep and less time to do things that are important to them. So there are consequences to the caregiver that are often overlooked.”

Self-Care Is Key

It is important for caregivers to create time and space for themselves, Dr. Hascalovici says.

“You need to take your own pulse first, and by that, I mean you need to invest in your own lifestyle, getting the right amount of rest, managing stress, and eating right,” he advises.

Not feeling guilty about self-care measures is important.

“Self-care is the catalyst that will make you a better caregiver,” Dr. Hascalovici says. “If you need a yoga class for your mental and physical health, you should not feel guilty about going.”

Of course, taking time for yourself is often easier said than done. But caregivers need to ask for help, too, Dr. Hascalovici says.

“And if you don’t ask for help, you are probably doing a disservice to the person who requires care,” he says. “Remember, it takes an army.”

Dr. Hascalovici recommends reaching out to a social worker through your doctor, or contacting your health insurance company to learn about resources that may offer respite for caregivers.

Empower the Person in Pain

Mary Andrew says that she feels it is important to involve the person in their care as much as possible.

“Make sure they are doing what they are supposed to be doing to help themselves, because if they can help themselves, it helps the caregiver, too,” she says.

Her husband is faithful about doing his exercises, and he goes to a chiropractor regularly.

“I make sure he has what he needs, and I don’t mind doing that,” she says. “It can be hard sometimes to make sure they are not overdoing it, not turning the wrong way, not wearing the back brace when they are supposed to.”

Watch for Mental Health Issues

Not everyone is as motivated as Paige Andrew to do all he can to get out of pain. If a person with back pain refuses to engage in activities that could be helpful, like daily walks or physical therapy, they may be depressed.

“About half of all people with chronic pain also have anxiety or depression,” Dr. Hascalovici says.

If you notice the person you care for is not motivated to do anything to help herself, one approach is to bring it up to her.

“Not every person will be responsive,” Dr. Hascalovici says. “It is not the caregiver’s responsibility to make a diagnosis, but you should bring it up with the provider and see if it is something to explore.”

If you find that the person in pain is unwilling to take the doctor’s suggestions and get regular exercise, you may want to raise the issue with the doctor.

“But include the person in any talks you have with the doctor and don’t try to go behind their back,” says Jeremy S. Smith, M.D., orthopedic spine surgeon at the Hoag Orthopaedic Institute in Irvine, CA. “You should all work together to come up with a plan.”

Find Your Support System

Molnar helps her husband daily with anything that comes up, which includes everything from personal care to driving him around. And while it can be grueling, Beverly has learned that it is all much easier to deal with if she gets support for herself.

“Taking care of yourself is the biggest thing you can do,” she says. “You really need to have a support system.”

For support, she often turns to Well Spouse, a Freehold, NJ-based organization that offers emotional support for spouses who are providing care to an ill spouse. Molnar also regularly gets together with friends.

“Find people who can help you with the practical aspects of taking care of the person with pain,” she advises. “Have a support system so you can take care of yourself, too.”

Dr. Krakower feels that it is important to maintain a regular schedule because it can cut down on stress.

“Pain is exacerbated with stressors,” he says. “The less you have to worry about in terms of schedule, the better.”

Also, try to get some exercise and eat well, he says.

“It is natural to feel angry and resentful sometimes, and to lash out,” he says. “This is when it can be a good time to separate yourself and take a break. Go out, see your friends, and have some clear separation.”

Dr. Smith sees many families in which the support person feels resentful.

“My biggest piece of advice is to try to be supportive without being co-dependent,” he says. “And don’t give up on the person.”