Caregiving in the ER - Part 1
With little doubt, many families in this situation probably wish they could turn back the clock to a time when they could discuss long term care options in the relative quiet before an unexpected (or sudden) emergency strikes.
You can help this situation immensely wherever you work in long-term care. Start by understanding why so many families are unprepared to step into the caregiver role. And then take a look at how your organization responds to families before, during and after their own emergency care situations.
In the end, family caregivers will value your support as they adjust to the new demands following their loved one's visit to the ER.
‘A Silent Army'
Who is this family caregiver? More than 43 million Americans serve as unpaid caregivers for adults age 50 and older, according to "Caregiving in the U.S.: A Focused Look at Those Caring for the 50+," by the National Alliance for Caregiving in collaboration with AARP, 2009. Given that their caregiving duties might require them to provide a loved one with a range of caregiving support, from transportation, housekeeping, companionship, bill paying and so on, it can be said that unpaid family caregivers truly comprise ‘a silent army.'
Surprisingly, most caregivers say they have a difficult time coordinating care. According to “Caregivers Survey 2012,” sponsored by Genworth, researchers found that one in two caregivers don't self-identify themselves as caregivers, and nearly two-thirds of those said it took an urgent event, such as a hospital stay or emergency room visit, before they realized a loved one needed long-term care.
Little wonder that a visit to the emergency room can be so overwhelming for so many family caregivers. To understand why caregivers are so unprepared, we identified four common mistakes they make.
The Four Common Mistakes of Family Caregivers
They haven't had 'The Talk.' As with most things in life, the first step is the hardest. Planning long-term care and everyone's role as a caregiver is a lot to digest, particularly if their parents haven't given their future much thought. The way to move forward is to have ‘The Talk.' As your parent's health, finances and lifestyle change, so will their needs and views. Also, laws, financial programs and local options will change. So revisit these conversations regularly.
They haven't organized key documents. Understanding the legal issues associated with long-term care is important for families. While every caregiving situation is unique, there are a few commonly used legal documents worth knowing about. They include a Living Will, Durable Power of Attorney, a "Do-not-resuscitate" Order and a HIPAA proxy. These documents are important because family members will want to be able to make decisions that are in line with their loved one's wishes if he or she is incapacitated. Disagreement and confusion among family members can be minimized if there are advanced directives to be followed. In addition, healthcare professionals are trained to honor a family's wishes. The HIPAA proxy can be particularly helpful because it allows a caregiver to have access to speak with doctors and clinicians and view medical records even if their loved one isn't totally incapacitated.
They have misconceptions about LTC financing. Contrary to what most people believe, private health insurances, HMOs or Medicare (outside of some long-term subacute coverage) don't cover long-term care costs. They usually only cover expenses relating to an illness or injury, and that's only for hospital visits, doctor visits, and prescriptions. Even the most comprehensive private health insurances won't pay for assistance with daily activities. The only private insurance available that offers coverage for such activities is a long-term care policy. Another common misconception is that long-term care insurance and disability insurance are the same thing. This is not true. Disability insurance only replaces income when someone gets hurt or ill, but LTC insurance covers home care, assisted living, or nursing home expenses related to long-term care. Note: Hospitals are required to provide a screening and emergency care without inquiring about a patient's ability to pay.
They haven't explored their care options. Consumers have more options today than ever before when it comes to long-term care. The biggest change is in home care. Today there are 11,000 Medicare Certified Home Care Agencies in the U.S., a 20 percent increase from 2008, according to Medicare.gov. That compares to largely unchanged 15,100 Medicare Certified Nursing Homes over the same period—a clear sign that seniors increasingly prefer to ‘age in place' at home. Elsewhere, there are new kinds of senior housing complexes—with varieties that include assisted living facilities and continuing care retirement communities—that don't look ‘senior' at all. Public programs are another care option new to many family caregivers. Some public programs offer financial assistance, while others will coordinate transportation and adult day care, among other services.
As you encounter the family caregiver in your organization, keep in mind that they will be looking to you for understanding and advice. Stay tuned for Part 2 of this article where you will find 16 Tips to Help Families in Crisis.
Bob Bua is President of CareScout, a Genworth company specializing in caregiving support services. Charlotte S. Yeh is Chief Medical Officer of AARP Services, Inc.