The Challenges of Being a Caregiver

Pictured: Minna and Bob Immerman

Because caring for someone with cancer can be emotionally and physically challenging, it is possible for a caregiver — who may be a spouse, son or daughter, friend or neighbor — to become tired, rundown, or even depressed.

“The healthcare system today places a heavy burden on the designated family caregiver,” says Dr. Jimmie C. Holland, Wayne E. Chapman Chair in Psychiatric Oncology at Memorial Sloan Kettering. “The caregiver is the person who keeps the family’s ’body and soul’ together, the trusted companion for the patient, the advocate in the healthcare system, and the one who ensures that the family’s finances remain adequate.”

“On a more mundane level,” she continues, “being a caregiver means getting the children to school, shopping, cleaning, going to doctor appointments, answering the phone, and snatching sleep whenever possible. The term ’multitasking’ must have originated from the concept of today’s caregiver.”

When Minna Immerman’s husband Bob was diagnosed with high-grade glioblastoma in 1996, the focus of her life became his battle with cancer. (Glioblastoma is the most common malignant brain tumor in adults. It tends to grow and spread aggressively and is probably the most resistant of all brain cancers to treatment.) As Bob’s primary caregiver, Minna spent her days multitasking. She gathered his test results, scheduled appointments, monitored his medications, kept family and friends up-to-date with his medical condition, and worried that he might not survive his cancer. She also worked full-time, teaching children who have autism. And throughout, she tried to maintain an upbeat, positive attitude.

Over the years, caring for Bob took a tremendous toll on Minna. When Bob reached the five-year mark following his original cancer diagnosis, Minna was diagnosed with severe depression. “It was almost five years to the day,” she recalls. “I’d been teaching for over twenty years, and then one day I had a panic attack. I came home, took to the couch, didn’t eat, and didn’t sleep. I collapsed.”

Minna immediately took medical leave from her job and began seeing a therapist, who prescribed antidepressants. Bob also started to see a therapist — to talk about his cancer and about the impact his disease had had on Minna. “Through all of this, I’ve had lots of people to talk to — my children and a wonderful circle of friends,” she says. “But talking to a therapist is different. In retrospect, I should have been seeing one much sooner than I did.”

Although Minna had relied heavily on the support of her daughters, family, and friends, she was always prepared for the worst, fearing that Bob’s cancer would return. Remembering how this felt, she says, “In our situation, I felt that a lot of the worrying was done by the caregiver and not as much by the patient.” But once the cancer seemed to be under control, she was no longer in a panic. Instead, she felt overwhelmed and became paralyzed by the gravity of the events of the last five years.

“I was so focused on Bob that I just wore myself out. I kept thinking that I had this wonderful family and friends, that Bob was doing so well, and the doctors were and are so supportive. But in retrospect, I was just holding it together.” One of their daughters described it this way — that Minna had held the family together for five years, and once Bob was “in the clear,” she needed someone to take care of her for a change.

It took Minna about a year to get back on her feet. Once she did, she started a new career training the next generation of teachers at New York’s Bank Street College of Education.

“It takes a village to get through cancer,” she states. “You can’t do it on your own. We had the support of friends and family and community, and I should have had therapy to support me, too.” Minna’s advice for other caregivers feeling stress? “You have to save your energy for yourself. I worried about Bob’s mom, I worried about my kids, I worried about Bob,” she says. “But as the caregiver, you really have to save that energy for yourself. You need to protect yourself.”

“Minna’s story outlines the problems of ’caregiver burden’ very well, which can become overwhelming,” says Dr. Holland. “A question or two about her welfare might have elicited her pain, and help could have been offered to her at an earlier point, when a ’meltdown’ could have been avoided. A simple statement like, ’This must also be hard on you. How distressed are you today?’ might have opened up the area for discussion.”

“The amazing thing is that there is often little acknowledgment of the caregiver’s burden,” continues Dr. Holland. “One woman I know said, ’People call all day long asking how my husband is, but nobody ever asks how I am doing.’ All caregivers want to know that someone cares, someone acknowledges just how hard it is to be in that role.”

Awareness of the emotional needs of caregivers and their families has risen in recent years, and an increasing number of hospitals, such as Memorial Sloan Kettering, are offering support services to address these needs. Some institutions also offer respite services, which is when a substitute nurse/helper is sent to the patient’s home to give the caregiver a day off.

“Despite these hardships,” Dr. Holland says, “most caregivers look upon the caregiving experience as extremely gratifying — it is an opportunity to help someone you love. Those periods of closeness and tenderness are long remembered.”