“When I heard you were doing a caregiver survey, I thought, ‘Finally—someone cares.’ ”

“There are times when you want to say ‘I’m done!’ but you have to keep going.”

“Being a caregiver was one of the most challenging and rewarding roles I’ve played in my life. It truly brought my husband and me closer, and we share something special from what we faced in our later 20s to early 30s.”

Being the caregiver of a loved one with a serious illness can be a tough job, both physically and emotionally. And as revealed by these quotes from anonymous caregivers in a new study, it’s a role that’s often under the radar despite its importance for patients’ well-being.

Today, researchers at Fred Hutchinson Cancer Research Center presented the results of this study, the largest ever, on the well-being of informal caregivers—mostly spouses—of cancer survivors who had received a blood stem cell or bone marrow transplant.

“What was surprising to us was that a large number of caregivers are doing very well,” said Stephanie Lee, MD, MPH, of Fred Hutch, the senior researcher on the study. “So that’s great to see. But there’s a substantial proportion of them, about 20 percent, that are doing much worse than the general population.”

The National Cancer Institute–funded study identified several factors that are linked to poor physical and mental quality of life in this subset of caregivers, even years after their loved one received a transplant.

This research “opens up the floor to studies of how we can support caregivers we think could be at risk,” said Kareem Jamani, MD, who presented the findings in a talk at the annual meeting of the American Society for Hematology in Atlanta. “And even outside of the research realm … maybe we as clinicians will realize, hey, maybe the caregiver needs some support here, not just the patient.”

Caregiving: lifesaving and life-changing

In blood stem cell and bone marrow transplantation, which is used to treat leukemia and other blood diseases, caregivers “play a really important role through a very difficult and traumatic process for patients,” Jamani said. In fact, having a caregiver is so important for a patient’s outcomes—even survival—that doctors in the Fred Hutch/University of Washington Cancer Consortium require their patients to have one before undergoing a transplant, Lee said.

Benny Juarez, 50, of Oakland, California, is one of them. Juarez has dedicated the past several years of his life to taking care of his girlfriend, Kristin Kleinhofer, who in 2014 was diagnosed with relapsed leukemia. She received a transplant of donated umbilical cord blood through a Fred Hutch trial in 2015.

Kleinhofer is now cancer-free, but getting to this point has been harrowing, for both her and, in a different way, for Juarez. Over the course of a year, she went through standard-of-care chemotherapy, experimental chemotherapy, an experimental immunotherapy and the transplant. These were punctuated by stressful searches for each new treatment option and mired in serious side effects that lasted long after her cancer was sent into complete remission.

The caregiving role can be exhausting, Juarez said. From overseeing medications and managing medical appointments to assisting in the activities of daily living, there’s so much to do. Because a transplant replaces a patient’s immune system, the patient is vulnerable to infection for a long time as the new system takes hold—meaning that even cooking a meal requires extra effort; for example, food-preparation areas, dishes and utensils must be sterilized to reduce the patient’s infection risk. Add to the extra physical work the emotional impact of seeing a loved one face death, dealing with stressful medical emergencies, and becoming more isolated from family, friends and hobbies.

“It’s day by day, and sometimes minute by minute. It just goes on,” Juarez said. “You’re just really alert and really ‘on.’ ” He looks back wryly at what he expected when he took on the role: “I thought she’d just be tired and I’d have some quiet time. I was really surprised that there was not too much downtime and time for oneself.”

One of the hardest things is when it all does come to an end, Juarez said. The patient (hopefully) recovers. The need for caregiving diminishes. The whirlwind dies down. You finally have the chance to reflect on the nightmare that you’ve lived. And those reflections are difficult to escape.

At the same time, said Juarez, his experience has made him rethink his focus in life. He’s gone back to work in corporate accounting—he’d stopped working to focus on caregiving—but recently he’s been taking a month off between contract gigs. “People are floored by that. I would have been floored by that, too,” he said. “You re-evaluate what’s important.”

Shining a light on the hidden struggles of caregivers

Juarez’s thoughts are echoed by many of the anonymous comments from caregivers who responded to the Fred Hutch team’s survey. The pages of comments shine a light on lives transformed by caregiving—for better and for worse—and reflect the trauma the caregivers experienced throughout their loved ones’ illness.

The caregiver comments reveal a wide range of feelings, from anger and depression to contentment and pride. And they shower both gratitude and admonitions on the doctors who saved their loved ones’ lives while sometimes leaving the caregivers to feel overlooked.

“Twenty-five years ago, the questionnaire might have seemed more appropriate. We have dealt with these issues on our own over the last 25 years and you just now resurface these feelings?” wrote one.

“Here in the transplant program, we’ve actually always involved caregivers in the medical care and the social support of the patient,” said Lee, who is the research director of the Fred Hutch Long-Term Follow-Up Program, through which the caregiver study was conducted. “And we had gotten a lot of comments that maybe we were not as attentive to what the caregiver experience was.”

The Long-Term Follow-Up Program provides lifelong care and monitoring to people like Kleinhofer who have received a blood stem cell or bone marrow transplant. For years, the program has sent annual surveys about quality of life to people who have received a transplant, information that has helped guide research to improve long-term post-transplant care. But from 2014 to 2015, the mailing included a second survey for the caregivers. The survey asked about physical health and mental and emotional well-being, using the many of the same questions for the caregivers and patients.

Nearly 850 survivor–caregiver pairs responded to the survey. On average, the pairs were six years past transplant, but for some, it had been decades.

Identifying caregivers who are struggling—and figuring out how to help

The team found that about one in five caregivers had poor physical or mental quality of life (or both) compared to the general population. Three demographic characteristics of the caregivers themselves were strongly linked to this poor outcome: age, education level and gender. Caregivers who had less education or who were female tended to have worse physical and mental quality of life. Those who were older than 60 had worse physical quality of life but better mental quality of life.

“So I think that lends itself to saying that we can probably identify these caregivers who might be at risk, even before the transplant happens, using those characteristics,” said Jamani, who is now at the University of Calgary but led the study’s data analysis as a visiting physician at the Hutch. “We can intervene before transplant, come up with a support plan for them.”

The study wasn’t designed to figure out the reasons for these links. But it may be that female caregivers have lower quality of life because the caregiving role is traditionally considered natural for them, Jamani suggested, meaning they get less support in their role from friends and family. And because, on average, income rises with educational level, perhaps financial stress is contributing to lower quality of life in caregivers with less education, he said.

Certain aspects of the patient’s health also affected caregiver well-being, the study found. For example, if a patient’s cancer had relapsed after he or she underwent a particular type of transplant (called autologous transplant), their caregiver’s mental health was more likely to be poor.

Such effects weren’t surprising, Lee said, as they confirmed what previous studies had found. And it makes sense, she said, that your mental well-being would be compromised if your loved one was having serious health challenges.

Lee said that this study provides her team with a lot of hypotheses for future research to pin down some of these effects—and to figure out how to help. They are now analyzing a second caregiver survey, distributed after this one, that assesses post-traumatic stress disorder. And they’ve just begun a small study testing an intervention to encourage positive ways of thinking in caregivers and their patients.

“We wanted to stop and analyze and figure out what to do with the results,” Lee said. “I’d love to think more creatively about what we can do for caregivers, both clinically in the [Long-Term Follow-Up] Program, and for research to try to help them.”

Support for the silent supporters

Lee said she hopes this survey will help caregivers feel that their voices are now being heard by their loved ones’ medical team.

“I want to thank all the caregivers who responded, because we really need to hear from them to start to understand their experience,” Lee said, “and to thank them for all they’ve done in silent support for the patient.”

Juarez appreciates his girlfriend’s many doctors and nurses who took the time to ask him how he was doing. It didn’t happen quite as often as he might have liked, but it made sense that their focus was mostly on the person with the life-threatening cancer, he said.

Some sort of program to help caregivers could make a huge impact, Juarez said, not only for the caregiver’s well-being but also for the patient and the whole family around them. It doesn’t have to be much, he said: Training in good communication skills. Some mental health support. And even just a listening ear.

“It would definitely help [caregivers] to be able to handle it a little bit better,” Juarez said. “Something as simple as sitting next to someone and saying it’s going to be OK.”

“If the caregiver’s happy,” he said, “other people can be happy too.”

Advice to caregivers

We asked caregiver Benny Juarez and Drs. Stephanie Lee and Kareem Jamani, who led a recent study on caregiver quality of life, what advice they would give caregivers. Here’s what they said:

  • Take care of yourself. Juarez, Lee and Jamani all stressed this. “Even a short walk is extremely helpful,” Juarez said. Caregivers who take care of themselves are better caregivers, Lee added.
  • Go to the doctor if you don’t feel well. For caregivers experiencing symptoms that seem like side effects of caregiving — like fatigue — go to the doctor to rule out any underlying medical problems, Lee said.
  • Know this: It’s not selfish to get help for yourself. Given the illness of the person they care for, some caregivers may feel like it is selfish to admit that they are struggling, too, and to seek help, said Jamani. But it’s not at all. Caregivers can reach out to friends and family, to the patient’s medical team, to their own doctor, or to a mental-health provider.
  • Find a listening ear. Talk to someone, said Juarez. Share how you’re feeling with a support group or even just a reassuring friend.
  • Work on your relationship. “The dynamics between patient and caregiver is huge,” Juarez said. Having well-developed communication and relationship skills helped him and his girlfriend navigate the challenges in her treatment and recovery.
  • Get organized. Juarez kept a careful spreadsheet of all of his girlfriend’s medications and their schedules to make sure she took all of them when she was supposed to. He was also diligent about taking notes at all doctors’ appointments to be sure that he’d captured the relevant information and instructions. One of the anonymous caregivers in the researchers’ study recommended an app, Pill Reminder, to keep track of meds.
  • Be prepared. In the evenings, Juarez would gather everything his girlfriend would need for the next day on his kitchen table or in a backpack so it was all ready to go for her frequent early-morning appointments. The preparation also came in handy for middle-of-the-night fire alarms in his apartment building when they’d have to grab everything and go outside for an unpredictable amount of time.
  • Keep the goal in mind. Trying to remember the long-term goal — a long, healthy life — can help caregivers maintain patience and energy to get through the stressful day-to-day events, Juarez said. And focusing on achieving near-term goals — even if that’s just getting to the next appointment — can help a caregiver keep moving forward, he said.

This article was originally published on December 9, 2017, by Hutch News. It is republished with permission.