Comic: Monica and the Melanoma Check

Where to start

“People should begin planning as early as possible,” explained Cory Fosco, retired social worker with 34 years in long-term care and author of The Question of When. “Many people wait until someone falls, gets hospitalized,or can't manage medications anymore. By then, options shrink and costs climb.” Socioeconomic differences play a role, too: “The broader issue is that lower income families tend to reach a crisis point sooner than higher income families,” said Evan H. Farr, a certified elder law attorney.

To counteract crisis, plug into these resources:

1. Start with the Eldercare Locator, a public service providing a searchable database of resources.
2. Contact your local Area Agency on Aging, “The single best free resource in the country,” according to Fosco, these agencies can help navigate a caregiving crisis.
3. Family Caregiver Alliance provides a HelpHub with a wide range of resources to help with planning.
4. Family Caregiver Services by State is a tool to locate available programs and services in your area.
5. If it’s financially feasible, the Aging Life Care Association can help you locate and hire a geriatric care manager.

Navigating finances and insurance while caregiving

“Prioritizing determination of whether or not the parent may be eligible for Medicaid supported care at home is crucial,” said Farr. “If so, then the vast majority of other planning considerations will follow naturally from this determination.”

1. Home and Community-Based Services: “Families should place priority on determining whether a parent might be able to receive Medicaid Home & Community-Based Services (HCBS) prior to assuming that institutional care is the only viable option,” said Farr. Check your state’s eligibility requirements with this online tool and contact your state Medicaid agency to apply.
2. State Health Insurance Assistance Program: Find a local SHIP for in-depth counseling and assistance with Medicare, for free.
3. Legal Services Corporation (LSC): “Most counties in most states offer legal aid services through the Legal Services Corporation (LSC), a national program providing low-cost/free civil legal aid to low-income Americans,” explained Farr. “Not every branch offers elder law services but some do.”
4. NCOA's Center for Economic Well-Being: This service from the National Council on Aging helps connect older adults and their caregivers with benefits programs and financial education. Use their BenefitsCheckUp tool to get started.

Challenges of being a caregiver

“Family caregivers are facing several major challenges, and they often all happen at once. They are balancing work, their own families, finances and increasingly complex care needs for a parent,” said Molly Minnick, RN, CCM, CDP, an Aging Life Care Association geriatric care manager and health advocate. “It is the combination of all these responsibilities happening at the same time that creates the greatest strain.” To handle it, reach out to family members and friends for help. “Caregiving works best when it is not one person doing everything but rather a team with clear roles,” Minnick advised.

1. Get paid to be a caregiver: Some state Medicaid programs allow family members or friends to be paid for caregiving. There are also some options through long-term insurance, local/state agencies and veterans programs.
2. Caregiver Action Network: Offers a wide variety of resources to support family caregivers, including its National Caregiver Help Desk, a hotline that provides access to experts who provide personalized support and guidance for caregivers. They also offer an app, virtual chats and support groups.
3. Training Calendars from The Senior Alliance: Find upcoming caregiver training from a variety of organizations.
4. Caregiver Support Groups: This list from The Senior Alliance provides online and in-person options for a variety of situations.
5. AARP Caregiving Resources: This guide provides educational materials and tools, including The Caregiver Answer Book.
6. Family Caregiver Alliance online support groups: Connect with other caregivers in a local or online support group tailored to your needs and situation.
7. Patient Advocate Foundation: Get free, one-on-one support from case managers to understand how to best manage the health conditions your loved ones are facing.
8. The Alzheimer’s Association: A comprehensive hub of resources for dementia care, including a 24/7 helpline, local chapter support, caregiver education and care consultation services.
9. National Respite Locator Service: From ARCH National Respite Network and Resource Center, this collection of resources can help you locate nearby respite care, which offers caregivers short-term relief from caregiving.

Caring for loved one at home

Whether your aging parents are remaining independent in their own home as long as possible or you’re caring for a loved one in your own home, there are resources to make the situation easier.

1. National Family Caregiver Support Program: Offers a list of programs and services to match a variety of circumstances (located at the bottom of the page under “Additional Resources for Caregivers”)
2. Medicare.gov: A searchable database that can help locate a wide variety of home health services.
3. Local Area Agency on Aging offers a wide range of volunteer services to help with daily chores or personal care, such as home-delivered meals and homemaker assistance.
4. Meals on Wheels America: Besides home-delivered meals, Meals on Wheels also helps with pet food and assistance, transportation and social programs. What’s available varies by region. Use the search tool to find and contact a local provider.
5. Home Care Association of America: A searchable database of providers for home care services.
6. Program of All-Inclusive Care for the Elderly (PACE): Some older adults may qualify for comprehensive care program, which is available through Medicaid and Medicare in participating areas
7. National Adult Daycare Services Association Find a Center: Use this interactive search tool to find options for adult care centers in your local area.
8. Non-Emergency Medical Transportation State by State Profiles: Medicaid covers non-emergency medical transportation in many situations. Each state manages NEMT differently. Use this database to find the state information and who to contact for arrangements.

Finding a facility

“Most families move through a sequence: occasional help, then regular home care, then a higher level of care,” said Fosco. “Sequencing that deliberately is different from reacting to each new crisis.” Look for a facility before it’s needed, if possible, so the process is less stressful.

1. Medicare’s “Your Guide to Choosing a Nursing Home” is a good starting point with practical information about what to look for in a long-term care facility.
2. Find a dementia care program through this searchable database of vetted programs.
3. Medicare's Care Compare: Recommended by Fosco for “quality ratings on nursing homes, home health agencies, and hospice providers.”
4. Finding Local Services is a government site with multiple links and resources to help locate facilities and compare costs.

“Many caregivers do not realize that support may be available to them, in part because every caregiving situation is different, and it is not always clear what kind of help is needed or where to find it,” said Minnick. When you’re not sure what’s possible, reach out to one of the resources above and ask. There may be more help available than you realize, both for your loved ones and for you as a caregiver.

Resources

American Heart Association Cardiovascular Health in Girls and Women Resource Center