I recently spent a weekend with eight of my college roommates for our annual get-together. Through the years we've always shared our life events, so it came as no surprise that our conversation turned to the topic of family caregiving. Like millions of fiftysomething women in the U.S. today, my former roomies are struggling to navigate the health care system on behalf of their parents - who now turn to them for help.
"Information is power," I told them. "So let me plug you in." I shared with them these tips I learned during more than a decade and a half of family caregiving experiences:
1. Find help and services.
BEFORE your loved one returns home from the hospital or a rehabilitation facility, make sure you ask about Medicare home health benefits. This program can provide medical help and services that may be needed for a safe and speedy recovery at home. It won't cover everything, but it can give you some support so that you're not on your own.
2. Meet with the caseworker.
BEFORE your loved one leaves the hospital, make sure to arrange for the caseworker to visit his or her home. The caseworker will make recommendations on hospital equipment needed at home and possible home modifications that could make things easier for everyone.
3. Track medications.
ALWAYS track medication changes. Prescriptions your parent or loved one is taking often change. The medication before hospitalization may not be the same after discharge and may change yet again during rehabilitation. Additionally, facility staff and physicians don't always talk to each other. Family caregivers may be the best source of medication history, so keep a record because medication mistakes can result in rehospitalization.
4. Check with the doctor.
ALWAYS check with your loved one's family physician if you have concerns about his or her health and well-being. You may notice changes in your parent's health in between doctor appointments. Don't be afraid to speak up. If one parent is caring for the other parent, ALWAYS be sure to check BOTH parents for signs of health issues or stress.
5. Ask questions.
ALWAYS ask questions about what options your parents or other loved ones may have. You may be eligible to receive financial support and services that you didn't know about. The more questions you ask, the more knowledge you have to help your loved ones continue living at home.
While these five tips may be helpful, long-term care still can be incredibly challenging to navigate. And it is all the more difficult at a time when you may be overcome with stress, fear or feelings of vulnerability. The entire experience can be a juggernaut driven by timetables, reimbursement rules and discharge referrals that can land your loved one in an institutionalized setting you never imagined or wanted.
Also of interest: The CARE Act: Caring for Family Caregivers
The good news: States are starting to shift their resources away from costly institutions like nursing homes and toward more care at home and in the community. This is a positive step for helping family caregivers and providing older Americans with care where they want to receive it - at home. But much more work remains because too many people are still being left behind.
Also of interest: Supporting Seniors, Family Caregivers: Where Does Your State Rank?
Family caregivers beware: Recent research has identified some disturbing trends in nursing home use that may point to disparities or inequalities in long-term care. A study published in the July 2011 issue of the journal Health Affairs found that while the number of white nursing home residents had fallen by 10.2 percent, "there have been steady increases in the share of older blacks, Hispanics and Asians in nursing homes in recent years."
"Perhaps as troubling, when minority elders do use nursing homes, they are more likely to end up in lower-quality facilities characterized by fewer resources, greater reliance on Medicaid, poorer service, and worse care than available in nursing homes in more affluent communities."
What's behind this disturbing trend, and what can be done? Illinois is trying to answer that question through legislation drafted by AARP that created a Long-Term Services and Supports Disparities Task Force. Passed unanimously in the state legislature and signed by Gov. Pat Quinn on Aug. 1, the bill directs the task force to:
- Look at all the services that help individuals stay at home as they age and the number of people they help.
- Identify any disparities in the types of long-term care that individuals receive based on race or ethnicity.
- Understand whether managed care plans and health care providers are able to offer culturally sensitive, competent and linguistically appropriate care to meet the needs of a diverse aging population and their family caregivers.
- Make recommendations to eliminate disparities and monitor the state's progress in eliminating those disparities.
At AARP, we're fighting to help seniors live independently at home and for the family caregivers who help them do so. Follow me on Twitter @RoamTheDomes for news on our caregiving advocacy and other AARP initiatives across the country.
If you're a family caregiver, you're not alone.
- To stay up to date or get involved with our caregiving advocacy in the states, sign up for the AARP Advocates e-newsletter or visit your state Web page.
- To find the tools and support you need, as well as ways to connect with other caregivers, visit the AARP Caregiver Resource Center.