Millions of people experience the challenges of long-distance caregiving
Long-distance caregivers of people with Alzheimer’s disease help manage finances and bills; some coordinate and manage in-home care or communicate with a nursing home about day-to-day care; and some provide moral support for a spouse who is living with the person requiring care. While long-distance caregiving presents unique issues and can be stressful, there are ways to manage the responsibility.
Caregivers and experts offer tips and advice for meeting the challenges of long-distance caregiving.
Every three weeks, Pam McNamara boards a plane in Chicago and travels to Omaha to see her parents. Her dad, 82, is in relatively good health; but her mom, 80, has advanced dementia and is confined to a wheelchair. For the past three years, McNamara’s mom has required assistance with all the activities of daily living (eating, bathing, dressing, etc.) and now has in-home care 18 hours a day.
“It has been difficult to see her decline,” McNamara admits. “My biggest stress is knowing that I can’t see my mom on a regular basis. It’s hard to know that she’s been having a couple of bad days and I can’t be there to help her myself.”
McNamara is one of the millions of Americans experiencing the challenges of long-distance caregiving. Some people who are helping loved ones from afar may not view themselves as long-distance caregivers, as responsibilities take many forms. Caregivers help manage finances and bills; some coordinate and manage in-home care or communicate with a nursing home about day-to-day care; some simply provide moral support for a spouse who is living with the person requiring care.
“There is a level of psychological and emotional stress that occurs for people who are long distance,” says Beth Kallmyer, vice president of Constituent Services for the Alzheimer’s Association. “It’s the stress of wondering does my mom have enough help? Is she eating every day? Is she still driving OK? Has she left the stove on? When you’re long distance, you don’t know, and that can be very stressful.”
While long-distance caregiving presents unique issues, there are ways to manage the responsibility. McNamara and leading caregiving experts spoke with Be Smart. Be Well. to share their insights on meeting the challenges of long-distance caregiving and offer tips and advice for caregivers.
Get organized
“If you find yourself caring for a loved one from afar, there are some really basic things that you should do right off the bat to make life easier for yourself,” says Amy Goyer, AARP’s caregiving expert. “You want to make sure you know who all their doctors are. You want to get the names and phone numbers of any neighbors. Find out where all the hospitals are in the area. Really educate yourself.”
Then, gather important insurance, financial and legal information. “You’re going to want to understand their finances,” Goyer says. “You want to be sure and get copies of their advance directives; and if they don’t have advance directives, make sure that you get that done so that you know what their wishes are for their care.”
In addition, be sure to speak to your loved one’s doctors about a Health Insurance Portability and Accountability Act (HIPAA) release form, says Kallmyer. HIPAA requires healthcare providers to have written authorization from a patient before they can share health information about him or her with a third party, including caregivers. “The long-distance caregiver could call the doctor, and if there’s a signed release that says, ‘yes you can speak to my daughter,’ then they can speak to you and they don’t have to worry about HIPAA,” she explains.
Assemble your team
Long-distance caregiving is not a one-person job and it can’t be managed completely from afar—no matter how organized the caregiver might be. All long-distance caregivers should assemble a team that includes at least one set of local eyes and ears, our experts advise.
“Whether that is figuring out cousins in your hometown, or friends of the family or hiring people to help you manage the situation locally, you are going to need additional support,” McNamara says. “There’s no way that you can manage a complex caregiving situation from long-distance without help.”
Having local help is particularly important when caring for someone with dementia or Alzheimer’s, as long-distance caregivers might not be able to pick up on changes in behavior that put the person at risk, Kallmyer says. “It’s a good idea to have somebody on the ground to confirm what’s going on,” she explains. “That could be a friend of your parents, it could be a neighbor that you check in with and say ‘Have you seen changes around the house or in how they’re dressing or acting?’ It’s good thing to get some eyes on the ground.”
Consider professional help
Many families make a geriatric care manager part of their caregiving team. A geriatric care manager is a professional who is trained to understand the needs of aging people and can connect families to local resources, Goyer explains.
“They may do a consultation for you and help you assess the situation, find out what services are available and make recommendations. Or they can be an ongoing part of the caregiving team who monitors the care,” she says. “If your loved one suddenly has to go to the hospital and you’re six hours away, you can call a geriatric care manager and ask them to meet your loved one at the hospital. They can be your eyes and ears when you’re at a distance.”
To find a geriatric care manager, Goyer advises contacting the National Association of Professional Geriatric Care Managers or the local Area Agency on Aging, non-profit, local programs that help aging Americans and their families plan for care.
Keep the family peace, share responsibilities
In many families, caregiving responsibilities are shared amongst family members. McNamara considers herself lucky that her siblings all work together to ensure responsibilities are truly shared.
“One of the things that my siblings and I talked about early on was we wanted to divide and conquer the responsibilities,” she recalls. “It was very important to me that my brother and sister who live in Omaha not bear the lion’s share of responsibilities. We as a family had the desire to share that responsibility across five of us, even though three of us don’t live in Omaha.”
Dividing responsibilities and matching them to each family member’s strength is key, Goyer agrees. “You may have one sibling who’s really good at accounting and is able to manage your loved one’s finances. You may have someone else who’s better at hands on-care and providing nursing care, so they take on that role,” she says. “You can really divide up and and juggle all the different tasks that need to be done if you have good coordination.”
Use technology and web-based tools
Long-distance caregiving is not easy, but it’s become more manageable thanks to advances in technology. “It’s a really good idea to embrace technology because it’s giving us a great advantage now,” Goyer says. “You can use technology to manage finances. You can use video chat so that you can actually see the person when you’re talking with them, and get a read of how they’re doing. There’s medication-monitoring technology where you can actually know if your loved one took their pills out of their pill box every day.”
“Using technology is critical for long-distance caregivers,” McNamara agrees. “I would not be able to do what I do without technology. That has involved utilizing Google Docs to set up a caregiving log, as well as a staff calendar. I also use online ordering of groceries and Amazon for medical supplies.”
Technology can also serve as the eyes and ears for caregivers who are far from their loved ones. For example, smart-home sensors can alert families if a loved one has fallen. “It’s not about spying on them,” Kallmyer says. “It’s about ensuring their safety and helping you determine when things progress to a point where they need more supervision and care.”
Schedule in-person visits
Technology makes long-distance caregiving easier, but there’s still no substitute for an in-person visit, Goyer says. “As often as possible, you do need to try to visit in person and get a read for how the person is doing. For some people that may be once a week, or it may be once a month. For others, it may be a couple of times a year, but you need to prioritize that,” she says.
And when visiting, pay close attention to small details about your loved one’s environment and daily functioning, Goyer adds. “I recommend that people stay the night if your loved one’s living in their home. You don’t really get a full picture unless you’re there for a few days and being in the home all the time,” she explains.
While in-person visits are an opportunity to do a status check, they’re also important for the caregiver’s peace of mind. “I think it’s very important, as a long-distance caregiver, to see your loved one as often as you can manage it,” McNamara says. “I can check in and really see – with my own eyes and heart – about what’s going on. It helps me manage my stress about the situation. I would worry a lot more if I wasn’t making a regular visit to see my mom and my dad.”
Enjoy time together
Long-distance caregiving can feel overwhelming, and there are many details and tasks to manage. Whenever possible, long-distance caregivers should step back from their to-do list to enjoy time with their loved one, Goyer recommends.
“I recommend that people proactively plan activities and times that are joyful. It may be that the person absolutely loves music and you can spend time together listening to music or singing or making music,” she says. “If you can infuse and create that joy in your caregiving situation, you’re going to handle the stress so much better.”
Even a quick phone conversation can be helpful, Kallmyer says. “It’s nice to share a moment when something funny happens to you. Call and share that, if that’s something you normally would have done,” she says. “It doesn’t have to be an hour-long call; it could just be 15 minutes. Being present—as a loved one, not just a caregiver—is the key thing.”
McNamara’s mother now speaks only a few words, yet McNamara still finds ways to connect with her; and that’s what sustains her during the challenging times of long-distance caregiving. “If you focus on all the responsibilities that you have, then you will get overwhelmed,” she explains. “It’s those small moments of joy and grace that take place, and that’s where you need to focus. If you can hold onto [that], then that is going to help you manage the stress of the situation.”
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