Like many of us, a Colorado woman thought that life was ready to take an upturn when the last page of the 2020 calendar turned and 2021 dawned.
She believed the new year offered a chance to move on from the social unrest of the previous one, as well as a pandemic that unexpectedly swept through the nation. In January 2021, there were signs of hope, notably a vaccine to blunt the spread of COVID-19.
In the blink of an eye, that briefly held hope vanished.
A sudden disaster
Her husband was driving alone on a northern Colorado highway in mid-January when he suddenly lost control of the car and hit a guardrail at 55 miles per hour. He wasn’t seriously hurt, but couldn’t explain the very strange accident.
Two weeks later, the man asked his wife to make him a doctor’s appointment after revealing that he’d been suffering severe headaches. After a series of tests, the man’s physician surprised the wife with a question: Had one of his eye’s pupils always been smaller than the other? She didn’t know.
The physician ordered a CT scan, which led to an MRI that produced a shocking finding: The man had five tumors on the right side of his brain. A biopsy in February 2021 at UCHealth University of Colorado Hospital on the Anschutz Medical Campus yielded more devastation. He had glioblastoma, an aggressive cancerous tumor that invades and destroys brain tissue.
A subsequent MRI showed more tumors. About a month after the car accident, the man began chemotherapy and radiation. The year that had begun with rays of hope plunged into darkness.
“We thought 2021 was going to be a great year, and 28 days into it our world was rocked,” the woman said. “We never could have imagined it.”
On August 11, the glioblastoma took her husband’s life. After six months of supporting and caring for her husband, she had lost her life partner. Their 15-year-old daughter had lost her father.
“It was the first traumatic event I had ever experienced,” she said.
The unrecognized stress of caregiving
That the caregiver dealt with powerful stress in 2021 seems self-evident. Yet the idea that people caring for their loved ones might benefit from help in dealing with the pressures of daily tasks, along with the needs of their own lives, is still relatively new. A trial now underway at the University of Colorado is examining if targeted interventions can help caregivers manage their stress more effectively. Researchers are recruiting patients with solid organ tumors and their caregivers from cancer centers throughout the UCHealth system.
The study focuses on caregivers who are employed. These people carry the burden of fulfilling their job responsibilities effectively while also shouldering the caregiving tasks at home, said Dr. Cathy Bradley, principal investigator for the trial. Bradley is associate dean for research at the Colorado School of Public Health and deputy director of the University of Colorado Cancer Center.
“I don’t think stress and its corollary effects have been adequately estimated at all – especially for the working age population,” said Bradley, who focuses her work on the impact of cancer on individuals and families.
Bradley noted that thanks to advances in treatment and medical management, there are now some 17 million cancer survivors in the United States, a significant number of whom rely on their caregivers. Many of these caregivers, in turn, must maintain employment, not only to financially support their loved ones, but often to maintain health insurance.
“Unfortunately, caregivers have few employment protections and sick leave is often unpaid,” Bradley said. “Employed caregivers seem especially vulnerable to pressure from all aspects of their lives. We wanted to develop an intervention to help them.”
Methods to manage stress remotely
The study compares two programs of “virtual stress management intervention” – one delivered via Zoom or by telephone in weekly one-to-one interactions between the caregiver and a trained professional, the other via short online videos that caregivers can review any time and at their own pace – with a control group that receives no stress management program.
Researchers use a variety of tools to measure stress, among them tests of “depressive symptoms” and analysis of saliva and hair samples to show levels of cortisol, a hormone released by the adrenal glands. Higher than normal levels of cortisol can be an indicator of increased stress.
Both virtual approaches cover a range of topics, such as strategies for managing and coping with stress; balancing the demands of work and caregiving; getting outside support for employment and legal challenges; coping with uncertainty, and more.
Groundwork laid by a previous study
This treatment for stress prevention was previously tested in a study led by the late Dr. Mark Laudenslager, a professor of Psychiatry at the University of Colorado School of Medicine who founded the department’s Behavioral Immunology Laboratory. Laudenslager and his colleagues concluded that the technique, dubbed PsychoEducation, Paced Respiration, and Relaxation (PEPRR), reduced stress in caregivers of patients who received stem cell transplants.
That work led to the current study, with its focus on the needs of employed caregivers, said Orah Fireman, a licensed clinical social worker with the CU Department of Psychiatry. Fireman works with the study participants randomly assigned to the PEPRR intervention.
“There are multiple stressors on caregivers, who are sometimes not getting the attention they need,” Fireman said. “They are focused on their husband’s, wife’s, or partner’s needs because they are the ones who are ill. Caregivers may feel like they shouldn’t be paying attention to their own needs because they are healthy. But we know that stress can impact the caregiver’s health as well.”
A wide variety of challenges
Each caregiver experiences stress differently, Fireman added, but there are common challenges that may add weight to their emotional and physical burdens. These include guilt, distress over role changes in a marriage or partnership, and loss of sleep. Difficult symptoms, such as memory loss, headaches and skin rashes may follow. The combined effects can produce depression and a sense of hopelessness.
“Caregivers may feel they are just putting one foot in front of the other and going, going, going,” Fireman said. “They may not realize that the things they are experiencing, both physically and emotionally, are actually related to stress and that they are not taking the time to address them.”
Fireman said her one-on-one sessions with caregivers begin with a check-in of how things have been going and guided breathing for relaxation. She then moves on to a specific topic and discussions about different coping strategies “for problems that can be directly addressed and for those that are uncontrollable.”
The strategies include applying techniques such as deep breathing, muscle relaxation, biofeedback, mindfulness and cognitive behavioral therapy. Fireman also helps caregivers develop concrete plans that “fit their unique needs for sustaining their energy for caregiving long-term,” Fireman said.
“A lot of the work is helping them to recalibrate and realize how important it is for their partner that they take care of themselves,” she said.
Coping with a sudden loss
For the woman whose husband died of glioblastoma, the diagnosis was “a gut punch” and the emotional pain and stress only increased as she watched his rapid decline. Over a period of just a few months, he lost his ability to walk and speak and suffered other serious health setbacks brought on by his cancer treatments and medications, including blood clots in his lungs and kidney stones.
With assistance from her supportive employer, the woman held onto her job and her medical insurance. With reduced hours, she was able to plan two trips with her husband and their daughter, first to Florida and then to Vermont for a six-week stay on the shores of Lake Champlain. Three weeks after they returned from Vermont, her husband died..
The stress was immense, she said. “Day to day I wondered what the next day would bring. I was losing my partner, who couldn’t talk to me anymore.” There were trips to the emergency department. She worried about her job, simply because of self-imposed pressure to live up to her duties. Their daughter experienced a “rude awakening” as cancer upended what had been a “charmed life.”
Tools to manage the stress
The woman discovered Bradley’s trial through My Health Connection, the patient portal for UCHealth. She volunteered for the study, and was randomized to the PEPRR intervention arm with Fireman and began the weekly Zoom meetings in May.
Several stress-reduction techniques proved helpful, the woman said, including body scans she used to gradually relax each part of her body. With focused breathing and meditation, she managed to talk herself “off the ledge” during especially stressful stretches, she said.
Most of all, she appreciated the weekly connection with Fireman, who helped her cope with the sadness of her loss and understand how she could relieve her stress by becoming more aware of it and finding positive responses.
“I wouldn’t have stopped to do [the exercises] on my own,” the woman said. “I would have just clenched my muscles tighter. Meeting with Orah weekly held me accountable to do these things that I wouldn’t have the self-starter motivation to do otherwise.”
Help with a long road ahead
The sessions have ended, but she continues to work on short- and long-term goals for dealing with losing her husband. She keeps a notebook with reminders to be grateful for small but sustaining things in life, stay mindful of everyday beauty, do tangible things for herself and build self-esteem.
Of course, it remains to be seen if the one-on-one or self-directed interventions really do help to reduce the negative impacts of stress on caregivers. The trial is ongoing and it will take time to analyze the results once it’s over. But without drawing conclusions prematurely, Bradley is optimistic.
“Our expectation is that if caregivers take care of themselves, they will have lower health care utilization and provide better care to the patient – who may also have lower health care utilization,” she said. “I would like to see these interventions offered as part of the standard of care.”
For her part, Fireman believes caregivers are themselves an important resource for advancing the quality of patient care.
“The resilience that people show is amazing,” she said. “Caregivers really want to help future caregivers and contribute to the knowledge that can help other people who may go through what they are going through.”
For more information on the study, contact Heather Rouse at Carewell@cuanschutz.edu; 303-724-4237.