Be an Effective Caregiver No Matter Where You Are

Caregiving looks different to everyone. Some folks need help managing finances; some need supervision with their medications. Still, others will require in-home health care arrangements or help to navigate the confusion of insurance claims and benefits.

According to Shane Burley, a freelance writer from Portland, Oregon, Susan Enguídanos, Ph.D. and Melissa O'Connor, Ph.D., a professor at The Fitzpatrick College of Nursing at Villanova University, for many older adults, caregiving is a difficult word and a topic not easy to discuss. There are ways to shift (or start) this conversation and establish good caregiving practices.

First, think about making long-term care plans well in advance. If the older adult doesn't name one person in the family to manage their affairs, the family should designate someone.

It's important to be organized, says O'Connor. "Get a notebook and don't go anywhere without it," she adds. Add contacts like doctors and services offered by their friends, neighbors, and acquaintances. Include a list of medications, doses, and frequencies. Then, finally, add their doctors (past and present) and the number of local hospitals. 

Find out if they have a Managed Medicare insurance plan. These plans come with a case worker who could serve as a vital resource. Be sure to include all insurance information, as well as their Social Security number, which might be required when inquiring about specific insurance coverage in an emergency.

If the older adult agrees, the caregiving family member should be added to their bank account. Find out if they are willing to share paperwork summarizing doctors' appointments. There's also digital content to consider; 75% of older adults spend time online each day. Think about a plan for their passwords, social media accounts and photos.

Complete these tasks with the older adult's cooperation, permission and participation. However, don't share sensitive or private documents with anyone. If the caregiver is added to any accounts or given access to decision-making regarding the older adult, keep both digital and paper copies.

Caregivers should stress to their loved ones that they'll do everything to keep them in their homes for as long as possible. To prevent falls, which are a known precipitator of decline, "suggest making home modifications such as installing a higher toilet, chair or grab bar in the shower, replacing an old stair railing and putting in brighter lighting," says O'Connor.

According to the Centers for Disease Control, non-fatal falls cost Medicare $29 billion each year, $12 billion if privately paid for, and $9 billion for Medicaid.

For people hesitant to create a caregiving plan, Enguídanos offers this advice: "Take charge early. You'll be in control when naming your medical power of attorney, creating a living will, family trust, and advanced directives."

By wrapping up loose ends yourself, you'll save your family the burden of worry, the stress of significant decision-making for you, and the potential guilt of wondering whether they made the right choices. Instead, they'll honor your wishes, and you can feel at peace knowing your affairs are in order.

Leave everything to others, and you're saddling them with what could be years of paperwork, legal fees and potential guilt. Unfortunately, Burley understands this too well. His parents tried to talk to him about end-of-life topics. But, he says, "I wasn't ready to listen or talk."

He figured they'd handle it later. But, ultimately, it was too late. He was left to pick up the disorganized pieces of their lives. It took six years after his mother's death before Burley was finished with her affairs.

"If you're responsible for someone's care and you live long distance, you have to evaluate their situation," says O'Connor, adding that FaceTime is an option if you can't be there in person.

On FaceTime, you can judge how they are doing based on what you see and how they interact with you. Send a neighbor or friend to check on them. If there's an emergency or your gut tells you something could be wrong, you need a point of contact. Someone other than the older adult should keep you informed, says O'Connor.

"They might not tell you if they've fallen because they don't want to bother you. And if you start noticing cognitive issues, have the neighbor investigate and then call you," adds Enguídanos.

Studies show that 47% of caregivers say looking after a loved one is a meaningful experience. But others, like Burley, lived on stress and uncertainty. "I didn't know who to contact, where to go, or how to get started."

O'Connor advocates asking about local resources with those professionals who cross your path. For example, home health care nurses, social workers and case managers are valuable resources to establish rapport with and cultivate when thinking ahead.

Enguídanos recommends hiring a geriatric manager, too. They can look in on the older adult and be a powerful resource to guide you throughout the care process. AARP provides a wealth of information to caregivers.

The National Institute on Aging (NIA) also has several resources. In addition, O'Connor endorses checking with your loved one's county or state to see if they qualify for assistance. Caregivers should remember to take care of themselves. Research shows undertaking the many responsibilities of this role can be difficult and stressful. Caregivers can experience psychological distress; their health and finances can suffer.

Caring for an older adult takes patience, preparation and love. It can be difficult. Burley admitted it took years for him to recover from caring for his mother. "I didn't work for two years," he said. "I took antidepressants for a while until I felt better."

As for feeling guilt for a decision made on behalf of the older adult, "Forget the guilt," says O'Connor. You'll do the best with what you have to work with."