You don’t have to look far these days to find someone taking care of the well-being of a parent, spouse, or friend. You may, in fact, be one of them. If you are, you’ve joined the ranks of some 65 million adults nationwide who have taken on that role. By definition, a family caregiver can be anyone (a relative, friend, or neighbor) who provides assistance related to a primary physical or mental disability and are unpaid for those services.
According to recent studies, the average family caregiver spends approximately 20 hours a week helping family members to remain at home. Many give considerably more time than that.
If you’re one who does, you know that aside from being physically present it’s not unusual to be on call 24 hours a day, 7 days a week, often without a break. In fact, family caregivers, particularly those taking care of older adults, often find themselves emotionally stressed, physically exhausted, and financially less well off than they ever would have expected.
Many have never prepared for the responsibility they now hold. Even fewer know where to turn for help when they become one. There are a number of reasons for this. The majority of family caregivers cite a lack of awareness of what is available to meet their own or their family’s needs. Others fear drawing attention to their situation, or see a stigma associated with their own or another’s condition. Compounding the stress, many caregivers say they often don’t know what they need, and don’t want to appear a burden in asking for help when they do.
The problem goes even further. With an increasing number of older adults comes an increasing demand for services. Administered state wide through the various state Departments of Aging and Independent Living, these services include adult day, home delivered meals, home maintenance, information and referral, protective services, and transportation, among others. Unfortunately, due to continued budget cuts at the state and local level many elders and families find themselves on waiting lists for assistance that could no longer be made available. Accordingly, many family caregivers who fill that gap do not receive any supportive services at all.
Whether the lack of support stems from budgetary constraints, a lack of knowledge of available resources, or simply an unwillingness to ask for assistance, the fact remains that family caregivers are the last line of independence for many elders who might otherwise be readmitted for hospitalization, assisted living, or long term care. Instead, family caregivers help to reduce unnecessary hospitalization and costly Medicaid-funded institutionalization.
Yet despite evidence to the contrary, many states continue to spend more on nursing home care then they do on helping older adults age at home. Kentucky for example, spends approximately 81% of all long-term care dollars on nursing home care.
Until we change current thinking, primary responsibility will continue to fall on individuals and families to better educate themselves about their role, their loved one’s needs, and where to turn for assistance. Help may be available through local governments, community organizations, private and nonprofit agencies, religious organizations and state and national associations.
One source that my family and I reached out to about four and a half years ago was the Alzheimer’s Association www.alz.org. We did so after learning that my wife’s father had been diagnosed with Lewy Body dementia. Currently, more than 5 million Americans are living with Alzheimer’s or other dementia. My father-in-law was just one of an estimated 69,000 Kentuckians already impacted by dementia related diseases. Among the services offered to us by the Association was access to local support groups and educational sessions, a 24 hour professionally staffed hotline (1-800-272-3900), and online information on early-stage, middle-stage, and late-stage caregiving.
It’s important to know that whatever situation you find yourself facing, there are a number of valuable resources you can still turn to for help and support. Two of the more comprehensive ones are listed below.
The Caregiver Action Network www.caregiveraction.org serves a broad spectrum of family caregivers ranging from the parents of children with special needs; to the families and friends of wounded soldiers; from a young couple dealing with a diagnosis of MS; to adult children caring for parents with Alzheimer’s disease. CAN is a non-profit organization providing education, peer support, and resources to family caregivers across the country free of charge.
The Family Caregiver Alliance www.caregiver.org is a important resource for information and assistance. Through their Family Care Navigator www.caregiver.org/family-care-navigator they help families in all 50 states locate government, nonprofit and private caregiver support programs. The Navigator lists programs for family caregivers as well as resources for older or disabled adults living at home or in a residential facility. It also includes information on government health and disability programs, legal resources, living arrangements, disease-specific organizations, FAQs, a glossary and more. There is no charge to use the Navigator.
If you find yourself in the primary role of caregiver, experts agree there are a number of things you can do for yourself. Among them, it’s important to recognize that you’re not alone. Seek support from other caregivers and take care of your health. Accept offers of help, make time for respite breaks, and give yourself credit for doing the best that you can.