Caregiving for a loved one with a serious illness can be incredibly rewarding. It’s a way for us to show that we care. It can deepen our bond with a loved one, give us a sense of purpose, and help fight feelings of powerlessness.
At the same time, caregiving can be stressful, taking a physical and emotional toll. This makes self-care particularly important, especially in light of COVID-19.
Challenges of Caregiving
The stress of caregiving has very real consequences. Data shows that as many as 70% of family caregivers experience symptoms of depression. Similarly, the Centers for Disease Control and Prevention report that caregiving is associated with high rates of anxiety and depression, the use of psychotropic medications, worse physical health, compromised immune function, and early death.
Financially, more than two-thirds of caregivers have to lower their expenses to provide financial support to a loved one. Nearly as many have to tap savings or sell assets, and nearly one-fifth have to borrow money to meet caregiving needs. Meanwhile, the uncompensated value of family caregiving is estimated at over $470 billion per year.
The pandemic disrupted every part of our daily lives. It changed how we work, shop, eat, worship, and interact. It dealt a heavy blow to our economy. What’s more, it left many people struggling to meet basic needs, such as food and shelter.
It also magnified the already considerable stress of caregiving. Hospitalized loved ones are left alone due to visitation restrictions. Communication with doctors and/or loved ones is restricted to zoom or phone calls. Caregivers may not see loved ones for days, weeks, or months on end. In some cases, overworked medical staff have difficulty providing updates on a regular basis.
Missing Support Systems
Simultaneously, important support systems are more difficult to access. Courtney Roman and Rani Snyder of the John Hartford Foundation write that “COVID-19 has forced most home-based and congregate supports that family caregivers rely on – such as respite, home health aides, and adult day centers – to shut down, causing more work and potential burnout.” Due to the importance of physical distancing, caregivers are on the clock longer, unable to access assistance from friends and family. Caregivers also face limited options for restorative activities such as dinner with friends, fitness classes, and support groups.
Recent data suggests that patients with both chronic and acute conditions continue to delay or avoid medical care due to fears about coronavirus. A Kaiser Health News report in May indicated that nearly half of Americans had skipped needed medical treatment due to COVID. For 11%, this led to a worsening of their conditions.
When patients decide to “wait out” symptoms at home, serious responsibilities such as giving medication, operating home medical equipment, dressing wounds, and bathing rest on caregivers. This not only claims more time and energy but can increase stress, especially if a caregiver is called on to perform functions for which they have received little or no training.
When people do seek professional consultation, appointments are often held via telehealth. At times, this can be helpful; telehealth appointments can increase ease of medical services and enhance access to care by allowing patients to meet with providers without leaving their homes. At the same time, the use of technology can be daunting for some caregivers, especially older adults who haven’t grown up in the digital age. The cost of technological devices and inconsistent availability of virtual networks serve as additional barriers. Many Americans lack access to networks necessary for wifi or may not be able to afford the devices needed to facilitate effective telehealth. A 2019 study suggests that as many as 160 million U.S. residents may lack access to broadband services.
In-person treatment also suffers. Some of the caregivers I work with have described the anguish of dropping loved ones at emergency rooms knowing they can’t enter. Despite their best efforts, healthcare employees have struggled to manage the amount of seriously ill patients at their hospitals. This can result in sparse communication about treatments, procedures, and even end-of-life care. Before the pandemic, a caregiver could time trips to the hospital to coincide with medical team rounds, where they could receive updates and ask questions. Now, sometimes life and death decisions are made by phone or video calls, which can be agonizing for caregivers.
Certain aspects of treatment during the pandemic can place both patients and caregivers at risk of experiencing medical trauma. Research suggests that hospital patients who experience respiratory failure, mechanical ventilation, and intensive care stays are more likely to experience treatment-related trauma than other patients. For caregivers, feelings of powerlessness associated with being unable to physically comfort loved ones can exacerbate feelings of fear and helplessness.
Sustaining Yourself as a Caregiver
Caregiving can be exhausting, anxiety-provoking, and draining if you don’t tend to your own needs. It may feel impossible, or even selfish, to prioritize yourself at times when the demands of caregiving feel all-consuming. It’s important, however, not only for your own well being but for the loved one who’s relying on you.
Below are some suggestions for maintaining resilience.
Take Time For Yourself, Daily
The caregivers I work with often say, “I don’t have time to take a break.” If you catch yourself thinking along those lines, pay attention. You’re on the road to burnout, which serves neither you nor your loved one.
It’s necessary to take a break from caregiving each day, even if it’s just for 30 minutes. Take a walk or run. Read something fun. Meditate. Savor a meal. You might question whether 30 minutes of “you-time” can make a difference, but the cumulative positive effects can be considerable.
Tend to Your Medical Needs
It’s common for caregivers to forego their own health while caring for a loved one. In the hierarchy of medical needs, back pain or a toothache may seem inconsequential, but those “small” physical stressors can build up over time and impact your well-being. Assuming you’re comfortable with the precautions your providers are taking, don’t delay your own treatment.
Reach Out to Other Caregivers
Caregiving can be an isolating experience, and many of the clients I work with express the relief of talking to someone who “gets it.” The Caregiver Alliance operates several support groups for specific disease conditions, such as Alzheimer’s, stroke, and cancer. In Washington, DC, Iona Senior Services runs support groups for adult caregivers. Many hospitals and health centers also operate online support groups.
Eat and Sleep Well
Dr. Marilyn Wei of the Harvard Medical School writes that “[m]aintaining adequate sleep and nutrition are key to preventing caregiver burnout. She suggests consistent nighttime routines to promote restful sleep, such as breathing exercises or meditation. Light stretching can also relax the body, sending the signal that it’s time for rest.
Eating well is also paramount to maintaining health and energy. Research indicates that food can affect your mood, psychological health, and sleep patterns. If food is the fuel your mind and body run on, make sure that fuel is of high quality.
Talk to a Counselor
Arielle Mesa, a Viva Center therapist who works with family caregivers, writes that “therapy can provide a vital outlet for processing your feelings and thoughts about caregiving, grief and loss.” It is common to feel overwhelmed as a caregiver, and to have feelings of anger and resentment, which can be hard to accept, let alone share with others. These emotions simply mean that you’re human, and may indicate that you’ve exhausted your coping strategies. A therapist can provide a non-judgmental environment where you can explore and express these feelings so that they don’t wear you down or lead to hopelessness.
Being a family caregiver at any time requires selflessness, patience, resolve, and frankly, guts. For the past seven months, it’s demanded even more. Nurturing your mind, body, and spirit is a gift you give not only to yourself but to your loved one as well.