In December of 2019, Jane, a 40-year-old married woman with a son in elementary school, was diagnosed with pancreatic cancer. Soon thereafter, her husband Michael became her primary caregiver— someone who provides ongoing assistance to and advocates for a care recipient, helping them through activities of daily life such as bathing, dressing, using the restroom, and coordinating their care. Life was difficult but manageable.
Then COVID-19 hit.
Michael and Jane went through a mentally exhausting period of time, facing challenges we are all so innately aware of now. And as the sole caregiver, Michael was terrified of allowing others in his house and experienced financial woes, stress, and anxiety. He had support to get through it—continued counseling and care management for his wife, as well as assistance in applying for government entitlements and access to local food pantries.
But many other people in their position suffered alone. For the past year and a half, many caregivers remained invisible — working a 24/7 job with no income and experiencing pain, loss, and suffering without any form of support. In recognition of Mental Health Awareness Month, it is essential that we begin to address the toll the pandemic has taken on our caregivers and make up for not advocating for them sooner.
The COVID-19 pandemic has changed all of our lives, causing widespread feelings of fear and stress and an overwhelming sense of loss. Though life is beginning to return to “normal,” many people continue to struggle with feeling isolated and anxious. Caregivers, specifically, are at great risk of experiencing a profound sense of loneliness. Their role is inherently isolating, often requiring them to watch their loved one’s health slowly deteriorate while reconciling with the fact that there is nothing they can do to prevent the progression of that sickness.
Being a caregiver for a loved one is also often a full-time job, and without proper training, it can be emotionally and physically draining. Like Michael, family caregivers were met with difficult choices throughout the pandemic around whether to have home care in place or pause on treatment to limit their loved one’s exposure to the virus. And as a result, many caregivers found themselves living with constant fear and anxiety and no one to turn to for help.
Over the past year and a half, we have seen the need for caregiver support explode. Too many are struggling with economic insecurity, food insecurity, and a lack of mental health resources. The first right in the Caregiver’s Bill of Rights is the right to take care of oneself, and yet too many caregivers are left with no choice but to sacrifice their mental health to continue doing their job—a sacrifice we do not expect of other essential workers.
The first right in the Caregiver’s Bill of Rights is the right to take care of oneself, and yet too many caregivers are left with no choice but to sacrifice their mental health to continue doing their job—a sacrifice we do not expect of other essential workers.
If caregivers make up nearly 20% of the population, why are they so often overlooked in conversations around mental health?
Caregivers need to be reminded that self-care is not an act of selfishness – in fact, it will enable them to take better care of their care recipient. Just as we are instructed to put our own oxygen masks on before helping others when flying, it is essential that caregivers care for themselves before trying to care for others. This includes going to the doctor regularly, socializing with friends and family (whether in person or remote), eating healthy meals, establishing regular sleep patterns, making realistic expectations for oneself as a caregiver, and taking a moment to breathe. Caregivers should also take part in the many resources available to them such as respite programs (adult day care, home health care), helplines, caregiver support groups, supportive/mental health counseling, government entitlements, and educational programs on being a caregiver.
As a society, we must also show up for caregivers. Caregivers should be formally recognized as essential workers and be compensated accordingly with a livable wage that values the work they do. Employers must consider the needs of their employees who are unpaid caregivers by giving them flexibility with remote work. And at an individual level, we must step up to support our family members, friends, and community members who are caregivers by offering to lend a helping hand; offering to run a simple errand whenever possible can make all the difference.
By understanding and addressing these issues, we can work towards building a national community of support for caregivers—so that they never again have to sacrifice their mental health to take care of a loved one.
We will all be caregivers or care recipients at some point in our lives – something we must keep in mind as we consider their needs. Implementing mental health support systems and resources for caregivers today will one day benefit every one of us.
WRITTEN BY
Maria Lever