10 Things You Should Know about Caregiving

Disability Connection Newsletter

November 2015

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10 Things You Should Know about Caregiving

1. Preparing to Be a Caregiver. While it may not be the first thing that comes to mind when everyone in your family is healthy, having a plan for your potential role as a caregiver can ease stress if a serious health issue or disability does arise. The Family Caregiver Alliance (FCA) shares tips for talking to parents – or any loved one – about what their needs might be if an illness or injury results in a disability. Holding a family meeting ensures that everyone involved in caregiving is able to share their opinions and agree on an action plan. Medicare.gov’s fact sheet on what every caregiver should know is a good starting place to learn the basics of caregiving, including tips for talking about the future and legal and financial considerations. Another planning resource for caregivers is the FCA’s webinar, “Caregiving 101: Exploring the Complexities of Family Caregiving.” Learn how to plan ahead legally and what you should know about money. Finally, take some time to educate yourself about first steps for new caregivers.
2. Financial Help. In addition to looking after the physical and emotional needs of loved ones, caregivers often take on their financial stresses and burdens, too. This can include paying bills, banking, filing insurance and benefits claims, managing savings and investments, dealing with housing issues and filing taxes. The Consumer Financial Protection Bureau’s “Managing Someone Else’s Money” publication has helpful information about matters such as powers of attorney, court-appointed guardians, trustees and government fiduciaries. They have also released guides for 44 states for financial caregivers. AARP offers many resources for financial caregivers in the Legal and Financial section of their onlineCaregiving Resource Center. Disability.gov’s Guide for Family Caregivers includes information on possible financial compensation for caregiving under the “Can I Get Paid to Be a Family Caregiver?” section.
3. What You Need to Know about Medicare and Medicaid. When it comes to managing someone’s Medicare or Medicaid coverage, there’s a lot a caregiver needs to juggle and understand. First of all, it’s important to know the difference between Medicare and Medicaid. Questions and Answers about Medicare for Caregivers is a good place to find information about what Medicare does and doesn’t cover. In particular, while Medicare covers hospital stays and skilled nursing facility care, it doesn’t cover long-term care (also called custodial care) if this is the only type of care a person needs. Medicare’s Caregiver Resource Kit contains several tip sheets, including information about taking care of yourself and how to find caregiver assistance near you. Regarding Medicaid, states run their own programs, so you’ll need to contact your state’s Medicaid office if you have questions about what it does and doesn’t cover. Read Medicaid.gov’sexplanation of Medicaid benefits to learn more. Healthcare.gov also has information about Medicaid eligibility, as well as how to find out about Medicaid programs in your state. You can find more information about how these programs cover expenses on Disability.gov.
4. Getting Additional Support. Your loved one may require additional support outside of a primary caregiver to fully meet his or her needs. Feel like you need a helping hand? The FCA offers a list of 25 organizations that take care of caregivers. AARP’s 12 Resources Every Caregiver Should Know Aboutincludes additional organizations that can help. Learn how toask for help when caregiving becomes too much to bear. Your local area agency on aging and the Family Care Navigator can direct you to nearby services. The U.S. Administration on Aging’s Eldercare Locator connects visitors to services for older adults and their families. You may find that respite services or in-home care are the best options for your situation. Learn how to select and hire home help, including how to perform a background check. Medicare.gov can also help you find and compare home health agencies. You may also want to think about finding the right kind of out-of-home care for your loved one. An assisted living facility or other care community may provide the right environment where your loved one can receive the best possible care.
5. A Profile of Young Caregivers. According to the American Association of Caregiving Youth (AACY), between 1.3 and 1.4 million young Americans age 8 to 18 provide care for a member of their family; meanwhile, an estimated 10 million 18 to 34 year-olds fill that role. At a time when most of their peers are focusing on school or careers, these individuals have the added responsibility of performing critical care tasks for a loved one, most often a parent or grandparent. Their age and inexperience can create additional challenges and often there aren’t many support groups focused on this age range. TheAACY addresses the needs of pre-teens, teens, families and care professionals through education and awareness, research and direct services. Email your questions toinfo@aacy.org. If you’re between 20 and 39 years old and have a loved one diagnosed with cancer, you can register to join a 15-week online support group through CancerCare.org. It’s also very important to learn how to take care of yourselfwhile caring for someone else.
6. Caring for America’s Heroes. In addition to National Family Caregivers Month, November is also Warrior Care Month. Wounded Service Members may require varying levels of care, depending on the seriousness of their conditions. Those injured while on active duty and their caregivers may be eligible for special programs, including respite care. The U.S. Department of Veterans Affairs (VA) offers caregiver support programs for families taking care of Veterans. Programs include Comprehensive Assistance for Family Caregivers, which provides services for seriously injured post-9/11 Veterans and their caregivers. Use the Caregiver Eligibility Checklist to see if you might qualify. The VA’s Caregiver Toolbox has information for family members new to caregiving, including diagnosis and care fact sheets,checklists and tips to help caregivers take care of themselves. Caregivers of World War II and Vietnam era Veterans can visit the VA’s Geriatrics and Extended Care section to learn about long-term care options for older Veterans, including home and community-based services. Caregivers of Veterans can also take the free Building Better Caregivers™ online training course. For more information call the VA Caregiver Support Line at 1-855-260-3274 or your local Caregiver Support Coordinator.
7. Long-distance Caregiving. Caring for a loved one who lives far from you comes with a unique set of challenges. How can you provide help and support when you’re not even in the same area? However, there are many tasks that can be accomplished long-distance, including helping with finances, providing emotional support, arranging for in-home care or finding an assisted living facility. Caring From a Distance(CFAD) offers information, support and resources for the 6.9 million Americans who are long-distance caregivers. Use CFAD’s service directories to find help near you. Learn how to gather important documents and put together a caregiver support system. You can also read the stories of other caregivers. The National Institute on Aging’s guide, “So Far Away: 20 Questions and Answers about Long-Distance Caregiving,” provides additional information, as does the Alzheimer’s Association’s Long-distance Caregiving page and Easter Seal’s “Tips for Staying Involved Long-Distance.” Readthis article from the Texas Department of Aging and Disability Services to learn more about first steps to take, important things to know about your loved one’s medical history and how to stay connected.
8. Taking Time for Yourself. Caregivers dedicated to caring for a loved one may find themselves feeling stressed out and unable to take time to care for themselves. Remember that even if your primary responsibility is to be another person’s caregiver, you should also focus on your own wellbeing. Be sure to look out for any signs associated with caregiver stressto prevent harmful effects to your health and figure out how to manage what you’re feeling. According to the FCA, the stress and burn out experienced by caregivers often results in neglecting basic health needs, including sleeping, exercising and eating right, , taking time to recover from illnesses and seeking proper medical attention. To ensure that your caregiving responsibilities don’t take a toll on any of these areas of your health, the Alzheimer’s Association recommendssimple steps you can take to care for yourself. Caregivers may also experience depression, so if you notice symptoms such as negative feelings or changes in certain habits or behaviors, it might be helpful to explore the coping strategies and treatment options that are available. Most importantly, know that you’re not alone, and that there are many support services for caregivers.
9. Support Groups. One of the best ways for caregivers to get help is through family caregiver support groups. Under theNational Family Caregiver Support Program, all states and territories receive funding to provide support to family caregivers, part of which helps cover the organization of support groups. If you’re searching for a support group, the Caregiver Action Network has key tips about finding one that’s right for you. Support groups can be found in your area by reaching out to local government agencies, or by connecting with any of the “25 Organizations that Take Care of Caregivers” recommended by the American Society on Aging. You can also find information and support through AARP’s telephone support line. Call 1-877-333-5885 (1-888-971-2013 for information in Spanish) Monday through Friday from 7:00 a.m. to 11:00 p.m. Eastern Time and Saturday 9:00 a.m. to 5:00 p.m. Eastern Time. Can’t make it to an in-person caregiver support group? There are also ways to find online support for caregivers. For instance, AARP provides an online forum for caregivers to interact and post about their caregiving questions and stories. The FCA also offers online support groups for caregivers and loved ones. If no support groups for caregivers currently meet near you, consider forming one using this toolkit on “Creating an Effective Support Group” for guidance.
10. Providing Care for a Child with a Disability. Caring for a child with a disability can be a rewarding experience, but it can also present challenges. The Centers for Disease Control and Prevention shares tips for family caregivers of people with disabilities, noting the importance of advocating for and empowering them. Parents of children with disabilities can find support through Parent to Parent USA, an organization found in almost every state. Another great resource for caregivers of children with disabilities is the Center for Parent Information and Resources, which provides information on early intervention, school services, therapy, local policies and transportation. Additionally, the Sonoran University Center of Excellence in Developmental Disabilities Education, Research and Service at the University of Arizona has created “A Roadmap for Family Caregivers,” which provides information and insights about caring for children with disabilities. If parents need assistance in caregiving for a child with a disability, local chapters of organizations like The Arc, United Cerebral Palsy (UCP) and the National Down Syndrome Society can connect them to resources and information.