Research has shown that caregivers actually have higher depression and anxiety than patients with cancer, according to Vicki Mackie, founder and executive director of Sites and Insights, an international nonprofit dedicated to using color, art, and mindful healing programs to transform the lives of those impacted by cancer. When caregivers are struggling, the psychological and physical ramifications can be significant, worsening not only their own quality of life but also the quality of life of the people in their care.
At the AONN+ 13th Annual Navigation & Survivorship Conference in New Orleans, Ms Mackie discussed different types of caregivers and their telltale signs of distress, as well as useful tools to help these crucial members of the cancer care team come out on the other side.
Sites and Insights
“We provide programs that have been proven to help heal the emotional trauma that comes along with a cancer diagnosis,” she explained. “We do this for patients, survivors, caregivers, and clinical caregivers.”
A survivor of metastatic breast cancer, Ms Mackie founded her nonprofit on the firm belief that art helped her stay present, beat the odds and, ultimately, survive, even when doctors made it clear her prognosis was poor. After discovering how much her creative outlet helped her heal, she began leading workshops and collecting data on other patients and caregivers who participated.
“I was astonished at the outcome data I was receiving, particularly at how many people were telling me the workshop helped them with their emotional and mental well-being,” she said. Eventually, Sites and Insights was born.
Types of Caregivers and “Signs of Trouble”
Although more caregiver categories do exist, Ms Mackie focused on 3 different types: clinical caregivers (oncology navigators, physicians, nurses, social workers, etc), caregivers of loved ones, and sandwich caregivers (ie, clinical caregivers who also care for family members at home).
According to Ms Mackie, signs of trouble can vary depending on the type of caregiver. For the clinical caregiver, burnout and compassion fatigue are common side effects of the job and can be incredibly detrimental.
“Compassion fatigue is a huge hurdle in clinical caregiving, and the key to dealing with it is early detection,” she said. “Burnout can be a consequence of compassion fatigue, but it can also stand alone due to the many hours you all put in on a daily basis.”
Signs that a clinical caregiver might be struggling with compassion fatigue include avoiding/dreading dealing with patients, reduced ability to feel empathy, addiction/substance abuse, frequent use of sick days, detachment, feeling tense/agitated, and being sleep-deprived.
She noted that detachment can be subtle at first and often easy to miss. “If you find yourself distancing yourself from people at work, pay attention to that sign,” she advised. “Again, early detection is key.”
For caregivers of loved ones, fatigue is a major side effect. Anger and resentment are also common, and they are very often suppressed since people do not feel like they should outwardly complain about taking care of a loved one.
Frustration and negativity, self-isolation/withdrawal, depression, relationship conflicts, loss of empathy and emotional energy, and even physical symptoms like nausea, dizziness, and headaches, can all take their toll when caring for a loved one.
The sandwich caregiver can often exhibit negative reactions toward others, have difficulty sleeping, and experience nightmares. “If you are having recurring nightmares, pay attention to that,” she said.
Confusion, feeling overwhelmed/helpless, relational disturbances, constant thinking/dwelling (aka “chattering brain”), being less efficient at work, and loss of independence are all further signs of trouble in the sandwich caregiver.
Ms Mackie emphasized that loss of independence is incredibly common in these caregivers, and it can have a significant impact. “When you’re always taking care of someone, you have no independence,” she noted.
The Health Impacts of Caregiving
When caregivers are displaying any of these signs of trouble, the body exhibits a weakened immune response, resulting in diminished antibody production against both influenza and pneumonia. Studies have also shown that chronic and acute stress can trigger a lethal T-cell response.
“I cannot tell you how many cases of flu, and particularly pneumonia, I had when I was a sandwich caregiver,” she said.
A wide variety of immune-related disorders and illnesses can also occur, including cancer, chronic illness, allergies, and delayed postoperative recovery.
When the immune system is impacted, the physical and psychological side effects go hand in hand. According to Ms Mackie, anger weakens the liver, fear hurts the kidneys, grief weakens the lungs, and worry affects the stomach.
“And hatred is the worst emotion for your immune system,” she said. “Research has shown that it almost diminishes the immune system; it not only hurts you physically, mentally, and emotionally, but because it is such a strong emotion, it starts manifesting more anger and hatred.”
Quieting the Chattering Brain
Up to two-thirds of caregivers report clinically significant symptoms of insomnia, and one of the major contributors to insomnia is the chattering brain. We all experience thought and chatter in our heads, but when it becomes disruptive, it can overwhelm and lead to anxiety, depression, and stress.
But according to Ms Mackie, there are ways to deal with the chattering brain. First, quiet the mind with a concentrated focus (ie, reading, meditating, walking, doing a puzzle). Spend more time in the present, and focus on staying right here, right now.
“Staying right here, right now sounds simple, doesn’t it? But it’s not; you really, really have to practice,” she said. “I tell people in our programs, if you take no other tools home with you, take this one. The key is remembering when things get difficult, that you’re OK right here, right now.”
Practice gratitude, as well as acceptance. “When we fight something, it becomes stronger. But acceptance actually gives us power,” she noted. “Cancer can blow your feelings of control right out the window. But while you may not have control, I guarantee you have power, and that’s huge.”
Caring for the Caregiver
First and foremost, the clinical caregivers have to take time for themselves—listening to the body, resting, and refueling.
“Get a mirror, put it right up to your face and say the same things to yourself that you say every day to your patients,” she said. “Take care of yourself.”
Set realistic limits, open lines of communication, and share burdensome feelings with someone else. Consider taking turns with a trusted coworker or friend, and trade off purging any emotion that needs to come to the surface.
“Don’t let all that bad stuff stay down inside. Unstuff it; get it out,” she said.
Lastly, the clinical caregiver should always remember to give themselves credit where credit is due.
Caregivers of loved ones should focus on self-care, accepting help when it is offered (while practicing saying “no” to others when they need a favor), and finding a backup for their responsibilities when a break is necessary (even if that looks like a short-term nursing home).
Sandwich caregivers should set boundaries, ask for and accept help, find social support/local resources in their communities, and focus on what they can realistically provide for those in their care.
Remember that no matter what kind of caregiver you are, it’s OK to cry. Often, when someone is crying, our first instinct is to do anything to make them stop. But crying actually does help us feel better, as it releases toxins from the body. “So cry away,” she urged. “And let other people cry.”
Finally, research has shown that laughter and play are beneficial to physical, mental, and emotional health. “So laugh as often—and play as often—as you possibly can,” Ms Mackie added.
Supporting the Cancer Caregiver Survivor
To truly support the emotional/mental health of caregivers, healthcare professionals should promote caregiver distress screening, encourage a paradigm shift from patient-centered to family-centered care, and strongly advocate for policies that broadly acknowledge the caregiver burden as a national healthcare issue.
According to Allison Applebaum, PhD, “caregiver-focused distress screening programs have the potential to improve the quality of care for all those affected by cancer.”
“Pay attention to caregivers; notice their body language, and talk to them alone if it seems appropriate,” Ms Mackie advised. “I guarantee that caregiver knows more about your patient than the patient is telling you, and the impact the caregiver has on the patient’s health is huge.”
More on Compassion Fatigue
Promoting Compassion Satisfaction in an Oncology Navigation Program
Brook Blackmore, MSN, RN; Erica Williams, RN, BSN, OCN, CBCN