Eleven percent of family caregivers live an hour or more away from their aging or ailing loved one, according to the "Caregiving in the U.S. 2020" study by AARP and the National Alliance of Caregiving. Many are tending to family members from a distance of hundreds of miles.
Long-distance caregivers have the same concerns and pressures as local caregivers — and then some. For example, they spend nearly twice as much on caregiving as do people caring for a loved one close by because they're more likely to need to hire help, take uncompensated time off work and pay for travel.
Often, the most significant challenge they face is simply staying informed and assured that the person needing care is in capable hands. That's why a long-distance caregiver can't do without good communication and a solid team on the ground.
Here are five steps to staying informed and effective as a long-distance caregiver and tips for putting the measures in place.
1. Establish access
Having good information channels and legal authority to make financial and health-care decisions is important for all primary caregivers, but it's even more so for those handling care from a distance. Try to arrange as much as possible during an in-person visit, when you can work with your loved one to locate, organize and fill out necessary paperwork.
- Start the money conversation. Discussing finances is often difficult, but you need to get the lay of the land. Devise a plan with your loved one for how to pay for health care and everyday expenses. Consider how much is on hand in savings and investments, the size of major payments such as housing, and whether your loved one has long-term care insurance.
- Request access to information. Ask whether your loved one can sign the forms or make the calls necessary to give doctors, hospitals and insurers permission to share information with you or another trusted family member. Don't forget things like banks and utilities. You may end up becoming the bill payer.
- Address legal issues. If your loved one hasn't yet designated a durable power of attorney for health care and financial decisions, ask whether you or some other trusted person can take on that role. If your loved one has no power of attorney and becomes physically or cognitively unable to choose one, the courts will have to step in.
- Know emergency basics. Can someone else get into the home in an urgent situation? Is an extra set of house or car keys stashed somewhere? Does the property have a burglar alarm, and what's the code? Keep a friendly neighbor's phone number handy, and ask the neighbor to do the same with yours.
2. Create a team
While you can handle plenty of important tasks remotely, such as paying bills and ordering prescriptions, you'll need others to be your eyes, ears and sometimes hands. It's natural for long-distance caregivers to feel guilty about delegating certain jobs, but don't try to do it all, especially if your loved one has more serious or complicated health issues.
- Build your team. Beyond medical professionals, it's important to reach out to friends, family and community groups to form a network of caregiving helpmates. Remember to consider your loved one part of the team.
- Determine roles. Ask what tasks, large or small, team members are willing and able to do. A neighbor might be happy to cut the lawn. Another family member might volunteer to drive to doctor appointments.
- Keep a roster. Compile a list of contact info for everyone and keep it up to date. The list should include hired helpers such as a housecleaner or dog walker. Be sure they know how to reach you as well.
Where the caregivers are
About 1 in 8 family caregivers lived more than an hour's drive from the recipient of the care in 2015, the most recent data available.
- 34% lived in the same household
- 40% lived less than 20 minutes away
- 13% lived 20 to 60 minutes away
- 4% lived one to two hours away
- 7% lived more than a two-hour drive
- 1% were not certain of the distance
Source: Caregiving in the U.S. , AARP/National Alliance for Caregiving
3. Find a local coordinator
- Verify credentials. Look for professional certifications, for example from the National Academy of Certified Care Managers, the Commission for Case Manager Certification or the National Association of Social Workers. Consider how long a person has been in the field, and request references. The Aging Life Care Association, a professional membership body, has a search tool to help you find licensed eldercare professionals in your area.
- Discuss availability and areas of expertise. Certified care managers offer a wide range of services, from a few hours’ consultation to develop a care plan to fully managing your loved one's care. That could include hiring and overseeing in-home caregivers and interacting with medical professionals, accountants and people with power of attorney.
- Consider cost. Care managers typically charge $50 to $200 an hour. Medicare does not cover this service, nor do most health insurance plans. But if you can afford it, an experienced manager may be able to save your family time, money and stress with even a brief consultation.
4. Stay in the loop
Establish ways to communicate regularly with your local team and loved one, whether through organization apps, group emails or social tools like FaceTime and Skype
- Make use of technology. With your loved one's permission — or the legal proxy's — you can put tools in place such as video monitors, wearable activity trackers, remote door locks to prevent wandering (if the care recipient has dementia), and even electronic pill dispensers that can notify you if someone has taken the prescribed medications.
- Find ways to coordinate. Set up an email group you can use to keep everyone up-to-date. Online scheduling tools such as Lotsa Helping Hands make it easy for you and your team to stay current on who's doing what and when.
- Look into workplace leave policies. You may be eligible for unpaid time off from work for caregiving under the federal Family and Medical Leave Act. If not, see if you can arrange to work remotely when you leave town for a caregiving visit.
5. Make the most of visits
Nothing replaces an in-person visit. When you can manage one, come with a list of things you need to know or discuss.
Try to stretch the visit so you can spend time with your loved one and also schedule key face-to-face appointments related to his well-being. Sitting down to chat with someone is far more personal and revealing than a phone call ever can be.
- Meet current and potential service providers. You may want to interview potential home aides or housecleaners, or meet with social workers or other professionals involved in your loved one's care to discuss any concerns.
- Note where new help is needed. Is a faucet dripping or the lawn overgrown? Does your loved one appear to be having trouble doing certain chores, such as laundry or grocery shopping? Help with tasks while you're there, but also evaluate whether you need to find someone local to assist day-to-day.
- Look for signs of abuse. Ask to see your loved one's checking account and look for abnormalities, and watch for red flags of physical or emotional mistreatment, such as bruises, unexplained injuries or an abrupt change in personality. Be very concerned if your loved one mentions someone you've never met who visits often and has been “helpful.”
- Have fun together. While you might have many practical tasks to check off your list, it's important to spend quality time with your loved one, who may have decreased mobility and feel isolated. Set aside a few hours to go out to eat or to the movies, or invite neighbors over for a potluck dinner.
Editor's note: This article, published on October 30, 2019, has been updated with 2020 information.