The Emotional Cost of Caregiving
Whether you’re a professional, a family member or both, being a caregiver can be profoundly rewarding but extremely exhausting at the same. Many families have loved ones who are living with chronic medical conditions or facing end-of-life issues. In many cases, family members are often the ones who provide the care and support that a loved one needs. Financially, the value of that care is substantial to both the caregiver and the health care system.
A 2014 report from the RAND Corporation found that in the United States alone, the cost of informal caregiving is an unbelievable $522 billion per year. Many families struggle as they try to bridge the gap between providing care themselves and hiring someone else to help. As a summary of a report by the AARP notes, “Caregivers face the loss of income of the care recipient, loss of their own income if they reduce their work hours or leave their jobs, loss of employer-based medical benefits, shrinking of savings to pay caregiving costs, and a threat to their retirement income due to fewer contributions to pensions and other retirement vehicles.”
The financial cost of caregiving is well known, but the emotional and physical strain that results from extended caregiving are often not addressed. Fortunately, there are resources available that recognize the significance and scope of the role of a caregiver and offer support through the journey.
Requirements of Caregiving
For every family, the requirements of caregiving are different and depend upon a loved one’s condition. Someone who is ambulatory, meaning that they can move around easily, may only need limited help with basic household tasks. Others may need help with more complicated undertakings or even 24-hour supervision to ensure physical, mental, and financial safety. The intensity of caregiving is largely influenced by the severity of the disease and by how far along the disease continuum a loved one’s condition has progressed.
Some of the typical requirements of a caregiver might include:
- Transportation to appointments and to run errands.
- Basic household tasks, such as laundry and cleaning.
- Companionship and socialization.
- Meal preparation and possibly assistance with eating.
- Assistance with mobility — often using a device such as a walker or wheelchair.
- Assistance with showering, bathing, and dressing.
- Assistance with going to the bathroom.
- Skin care — which is more involved if a loved one is bedbound.
- Medication assistance — including filling medication boxes and administering medicines.
- Monitoring symptoms — such as taking blood pressure and blood glucose readings.
- Safety precautions to prevent falls and injuries — which is more challenging if cognitive impairment is present.
- Advocacy for a loved one’s needs within the health care system.
Challenges Faced by Caregivers
The fact that many family caregivers are also holding down full-time jobs, raising children, and providing financial support for the family member they’re taking care of means that caregiving can be challenging on multiple levels. Tax breaks and other benefits for caregivers in the Affordable Care Act have helped lessen the financial burden of caregiving, but, unfortunately, the law doesn’t address the emotional and physical burden on a caregiver. This added stress often contributes to additional health concerns, emotional struggles, and prolonged mental health adjustments. According to data from the U.S. Department of Health and Human Services, family caregivers face a variety of risk factors for poor health:
- Caregivers are at higher risk for stress-related illnesses, and their rate of depression is two times higher than the national rate.
- Sixty-seven percent of caregivers report not going to the doctor because family needs must come first.
- Fifty-one percent reported not having the time to take care of themselves, and nearly the same amount said they’re too tired to do it.
- Fifty-three percent state that caregiving has made their health worse, which also affected their ability to provide care for someone else.
- Research published in the Journal of the American Medical Association found that, within four years of conducting the study, older spouses who reported an emotional strain due to caregiving had a 63 percent higher mortality rate than older adults who weren’t caregivers.
Support for Caregivers
Although caregiving can be challenging, there are numerous resources available to help lessen the burdens that family caregivers face. This includes support related to financial, emotional, and mental health needs.
The financial burden can be extreme for family caregivers, but accessing the following resources can help:
- Medicare covers a variety of services, if a loved one is eligible.
- The Affordable Care Act has created a number of new benefits, including affordable access to health insurance that is more comprehensive.
- The Family and Medical Leave Act provides up to 12 weeks of unpaid leave and job protection for those caring for a spouse, child or parent with a serious health condition.
- Some states offer paid family and medical leave.
- Some states and cities offer job protection for family caregivers.
- The National Council on Aging’s Benefits CheckUp can help find benefit programs to help pay for medications, food, health care, and more.
- The Medicaid Cash & Counseling Program provides qualifying individuals with disabilities a flexible budget to use to support their personal care needs, including hiring personal care workers.
- The Department of Veterans Affairs has an array of support programs available for veterans and their caregivers.
- In some instances, income tax benefits may be available to family caregivers.
- A family member may be eligible to act as a “Representative Payee” for a loved one’s Social Security benefits.
- Some long-term care insurance policies will pay family members to care for a covered loved one.
Emotional and Mental Health Resources
The emotional toll on family caregivers can be extreme at times, and seeking help from available resources can be essential. These include:
- Home health agencies — to help provide care when needed.
- Adult day care— where seniors can socialize, receive medical attention and other services.
- Private care aides — who can help with care and other needs.
- Respite care services— to give caregivers a break or the chance to travel, when needed.
- Caregiver support groups— which are often geared toward a specific disease process that a loved one has and are available both locally and online.
- Agency on Aging— which has offices around the country to connect caregivers with local resources.
- National Alliance for Caregiving — which offers a comprehensive list of caregiving associations and groups.
- Patients Like Me — which is committed to putting patients first by providing an outlet for patients and families to share their real-world health experiences.
- Community-based palliative care — which is independent of hospice and provides comprehensive care and support to patients and families in their own homes.
- Hospice care — provides an array of services to support both patients at the end of their lives and their families.
One of the most significant things a family caregiver can do is to learn self-care to prevent caregiver burnout. Experts recommend self-care practices that include:
- Using stress-reduction techniques like meditation and yoga.
- Paying attention to health care needs.
- Getting adequate rest and eating a balanced diet.
- Taking guilt-free time off.
- Enjoying nurturing activities like a good book or a warm bath.
- Asking for support from others and accepting it.
- Talking to a trusted friend or counselor.
- Identifying and acknowledging difficult feelings and dealing with them.
In addition to the resources above, Family Nurse Practitioners play a pivotal role when it comes to recognizing and treating the emotional toll of caregiving. FNPs are in a great position to guide complicated conversations for families in need because they develop relationships with their patients over time. To help their patients, FNPs should keep up to date on the most recent interventions for caregivers and arm themselves to with the tools and resources outlined in this post. By preparing family members for the emotional and physical burdens of caregiving, FNPs can help alleviate stress and make the caregiving experience a rewarding one.