By strict definition, a caregiver or carer “is an unpaid or paid person who helps another individual with an impairment with his or her activities of daily living. Caregiving is most commonly used to address impairments related to old age, disability, a disease or a mental disorder.” Statistics show that the amount of caregiving that is done as unpaid work exceeds the amount done as work for hire. According to an AARP report, “family caregivers in the United states provided 37 billion hours of care – worth an estimated $470 billion- to their parents, spouses, partners and other adult loved ones in 2013.” To put it into proper perspective, this total is higher than the annual Gross Domestic Product of 168 of the world’s recognized countries. The total is also $8 billion more than the combined sales of Apple, IBM, Hewlett Packard and Microsoft for the same period, and is $28 billion more that the total Medicaid expenditures for the same period. AARP’s analysis also notes that caregivers spend an average of 18 hours per week providing care to a family member and that 60% of family caregivers caring for an adult are employed either full or part time. Of local interest is that Florida has approximately 2,670,000 caregivers which ranks third behind California and Texas in the United States. Based on Florida’s 2013 population the fact is that 13.6% of the state’s population serves as a caregiver to someone else.
What if anything is being done to facilitate and support personal caregiving? Many efforts at the Federal level, including multiple additional Medicare and Medicaid benefits have been made available to those with chronic health issues and to assist caregivers in offsetting challenges in both cost and care. At the state level, thirteen states (not including Florida) have enacted the Caregiver Advise, Record, Enable (CARE) Act as of June 5, 2015. An additional 29 states (not including Florida) have introduced the CARE Act in state legislatures in 2015. “The CARE Act features three provisions: 1) the hospital must ask the patient if he or she would like to designate a family caregiver, and the name of the family caregiver is recorded when a family member is admitted into a hospital; 2) the family caregiver is notified if the individual is to be discharged to another facility or back home; and 3) the facility must provide an explanation and instruction of the medical/nursing tasks (such as medication management, injections, wound care) that the family caregiver will need to perform at home.” Many states are assessing the needs of caregivers in their constituencies and exploring and enacting multiple efforts at providing solutions that will provide real time assistance and longer term support to this labor of love. One key area is in Respite Care, the act of providing temporary relief from caregiving tasks. Funding for this effort has been increased in a handful of states enabling caregivers there to take some time off to recharge. At a local level, NU-HOPE Elder Care Services Inc. (863) 382-2134 provides a variety of services that may complement the family caregiver’s efforts, including Respite services. An Elder Helpline can be accessed at 1 (800) 963-5337 where information and referral specialists are available to discuss services, support groups, and other resources to the caregiver community.
The Heartland Library Cooperative libraries also have a wealth of information to provide general knowledge or to support your individual caregiving needs. Of note are: The Mindful Caregiver – Finding Ease in the Caregiving Journey by Nancy L. Kriseman . “The Mindful Caregiver highlights two major approaches to help transform the journey: adopting a practice of mindfulness, which helps caregivers become more self-aware and fully present with the person with whom they are caring, and honoring the spirit side of caregiving which offers new ways of connecting to one another. These approaches take into account not just the needs of the care recipient, but also the needs of the caregiver and other people in his/her life.” Therapeutic Caregiving by Barbara J. Bridges, R.N. describes itself as “A practical guide for caregivers of persons with Alzheimer’s and other dementia causing diseases.” Of particular focus is for the caregiver to remember to care for themselves while supporting someone in great need. Subjects given particular attention are setting realistic expectations, making the best possible decisions, advocating effectively, and evaluating available resources and services.
Those of us not serving in the role of a caregiver can nevertheless provide a measure of support for those that do. We might ask them if we can run some errands, do research in gathering caregiving and resource information, get their house cleaned or yard work done, bring a meal, provide a respite evening away, or just check in and ask them how they are doing. Simple, random acts of kindness will be appreciated and long remembered.
If you are a caregiver please know that your efforts are so appreciated by the loved one you care for, even if they cannot express it other than with their loving eyes. For those of us not serving as caregivers, let us be more aware of those that are and let us support them with actions from our hearts, remembering the words of Mother Theresa, “It is not how much you do, but how much love you put in the doing.”