Many of my clients are caregivers. They are often caregiving for their children with disabilities or for their elderly parents. Others are more distant relatives who have taken it upon themselves to care for their loved one. Although their situations vary greatly, I see many recurring themes. I see strength, compassion, and selflessness on a grand scale. I see struggle, grief, and a unique optimism that finds joy in the little moments. I would like to touch on some of those struggles and offer some solutions and hope.
Society fails to recognize the great sacrifices made by caregivers across the country. Approximately 34.2 million people in the United States are caregivers for an adult age 50 or older, according to a 2015 AARP report. About half are caring for a parent. Some caregivers retired early, reduced their hours to part-time, or quit their jobs entirely to care for their loved one. Unpaid family caregivers contribute $470 billion worth of care to the US economy. What I personally find the most frustrating is that this sacrifice is assumed by society and often goes unthanked and unrecognized. Caregivers often feel a sense of duty to sacrifice their careers, their time, and often, their own health. This results in martyrdom of our most kind and deserving citizens. Not only should we as a society better appreciate and care for our caregivers, but we must support caregivers in caring for themselves.
There are a few different ways to get support as a caregiver. Your local Area Agency on Aging can connect you to local resources. The Family Caregiver Alliance distributes an excellent newsletter and their website has information on public benefits, disease-specific nonprofits, and a number of helpful tools like the Family Care Navigator State-by-State Guide. The National Alliance for Caregivers also has many helpful resources on their website, including webinars, workbooks, and information on financial support and tax benefits available to help with caregiving.
As a caregiver, it can be challenging to accept respite care or assistance from home health aides. There is a sense of guilt associated with caregiving that discourages caregivers from utilizing supports. These supports, however, can give the caregiver needed time off and allow the caregiver to establish healthy boundaries. Limitations on when the caregiver is providing care and in what ways, and areas the caregiver provides care, can prevent strains on family dynamics and preserve a relationship with the loved one who is being cared for. The medical needs of a disabled or elderly loved one may become increasingly complicated and some duties may be best delegated to a healthcare professional. The costs of home healthcare services can often be covered by Medicaid or other public benefits.
It is important to make sure that the caregiver is cared for, as well. I cannot possibly overstate the importance of self-care and the importance of avoiding compassion fatigue. Taking time away from caregiving to self-care – spend time with other friends and family, exercise, engage in hobbies, rest – can make a caregiver healthier, more emotionally stable, and overall, a more effective caregiver. Caregivers often suffer from depression and develop health issues of their own. Caregivers and their families should make the time to plan for the caregiver’s own retirement, health care, and aging. Spending time with other caregivers and getting to know other families dealing with the same illness can provide invaluable emotional support. The local Area Agency on Aging and disease-specific nonprofit organizations will have contact information for local support groups.
Caregivers are an incredible resource, not just to our economy, but to our families and to our society. If you have a caregiver in your life, reach out and offer them some of the same compassion and support they provide their loved one every day. Check in with them and ask, “Are you okay?” Because of their selfless nature, they may respond initially with, “I’m fine.” Persist, and be sure they know they are not alone. If you are a caregiver, remember that you are worthy of the same joy and comfort you fight to provide your loved one. Do not hesitate to reach out for the support you need and deserve. You are so very valuable.