The COVID-19 pandemic has meant dealing with challenges most people never thought they’d face: toilet paper shortages, universal homeschooling and a novel virus that has killed more than 100,000 Americans in less than three months. It has also changed the caregiving landscape dramatically. Approximately 39.8 million people provide care to adults (aged 18+) with a disability or illness in America, and the onset of the pandemic—and physical distancing in particular—has made an already difficult job even harder.
Typically, around 13 percent of Americans are acting as distance caregivers, meaning that they live approximately 100 miles or more from the person or people for which they’re caring. But in the age of social distancing—especially when it comes to older adults and other vulnerable populations—caregivers who were once considered “local” have, in many cases, become distance caregivers, unable to provide their usual type of care. If you have found yourself in this position while caring for a parent or other loved one, here’s some expert advice for navigating our new reality.
What makes this situation different
Typically, the major disadvantages for distance caregivers include not being able to meet the staff at their place of care, not getting enough support from social workers, and simply not knowing how the patient looks on a regular basis. But these don’t necessarily apply in the current situation, which has more to do with formerly local caregivers’ access to healthcare providers—and in some cases, the patients themselves—becoming more limited.
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According to Dr. Sara Douglas, a professor of nursing and assistant dean for research at the Case Western Reserve University who recently completed a study on distance caregiving, the main challenge of being a “local” distance caregiver is having to think of alternative ways to get the benefits that you used to get during the “in person” experience, and recognizing the stress involved in doing so.
“For example, it is not uncommon for an oncologists’ office visits to run behind schedule,” Douglas explains. “When the caregiver was present with the patient, while the waiting was stressful, at least you knew why things were taking longer than expected (the MD is running late, the patient’s lab results had not come back yet, etc). When you, the caregiver, are waiting in your parked car, you have no idea what is going on and you can’t go up to the appointment desk [to] find out how much longer they think it will be until the oncologist arrives—that can be stressful.”
Tips for “distance” caregivers
If you have recently found yourself in the position of being a quasi-distance caregiver, Douglas has a few suggestions to help ease your burden.
Come up with a call schedule for appointments
Not being permitted to accompany someone into a medical facility presents a variety of challenges. One way to mitigate them, Douglas says, is to set up a schedule with the patient, wherein they check in with you and give you an update on their status during a visit (even if it’s just “I’m still in the waiting room”). If the patient doesn’t have a cell phone, have them ask the front desk if they can use the facility’s phone to provide you with an update. If that is not possible, Douglas recommends asking if you could speak with an assigned social worker to see if that person would be willing to call you.
Get in touch with the social worker
Write a note and ask the patient to give it to their social worker, if they have one. In this note, ask the social worker if he/she can call or email you at some prearranged point to discuss any questions, issues or concerns you (or they) may have.
“Utilize this wonderful resource to help provide you with information and support regarding your loved one’s care,” Douglas says. “In addition, social workers can often help provide strategies to reduce stress—whether it’s more traditional (e.g. deep breathing to manage anxiety), or perhaps some specific strategies unique to your situation ([if a] social worker reaches out to you at a specific time to see what questions or concerns you have).”
The support services that you once enjoyed as a local caregiver can still be accessed—in most cases, it just will require that you initiate the contact.
In her most recent study, Douglas found that using videoconferencing during oncology appointments reduced the stress and anxiety of distance caregivers who weren’t able to be there in person. This is only more relevant today; while some hospitals may have been reluctant to use apps like FaceTime for videoconferencing in the past, they have eased restrictions because of the pandemic, Douglas says.
“When COVID concerns become reduced, there will be some return to a more restricted use of telehealth/video conference technology,” she says, “but it will not—in my opinion— be as restricted as it was prior to COVID. So, take advantage of the fact that right now you can use a variety of platforms—and find one that you like and get the process started.”
Mental health and caregiving during a pandemic
The COVID-19 pandemic has not been great for our collective mental health, and caregivers and their loved ones are unquestionably suffering. According to Karen Whitehead, a social worker who specializes in working with distance caregivers, even if a patient is part of a community (like a nursing facility or retirement community), most residents are instructed to stay in their rooms.
If you’re caring for an older adult, Whitehead says to keep in mind that a situation like this is unprecedented in their lifetime, as well as ours. Because of this, she recommends staying in touch with people as much as possible. “While we can stay in touch via Zoom, Facetime or even a plain text, our loved ones may not be proficient with these types of technology,” Whitehead says. “Calling more frequently and sending a card or writing a letter, may be more familiar for older adults.”
If you are concerned that a loved one’s sense of isolation or depression is growing or their anxiety is significantly heightened, Whitehead says that it may be time to involve a mental health professional. If the person you’re caring for lives in a community, there may be someone they already know who could intervene. “Many older adults can be resistant to mental health services as it is not a typical part of their generation,” Whitehead explains. “It is often best to start with their primary care doctor or provider with whom they are most familiar. If you can express your concerns to your loved one first, this helps them to now feel blindsided and may help them be more open to talking.”
At the same time, caregivers shouldn’t ignore their own mental health. Whitehead suggests making additional arrangements that may give you more peace of mind, like setting up a medical alert system or a regular check-in schedule with the patient. “That can help to ease worries about them being alone for extended periods of time,” she adds. Otherwise, if you are growing increasingly concerned about their safety, bringing the patient into your home, staying with them yourself or hiring care staff may be a necessary step, Whitehead says—though that introduces a new host of pandemic-era concerns, particularly for patients from at-risk populations.
Having the nursing home conversation
Though discussing the possibility of moving a loved one into a nursing home or skilled care facility is never easy, COVID-19 has made that discussion—and decision—even harder. To date, approximately one-third of COVID-19 deaths in the United States have been residents or staff at nursing homes, so even if a nursing facility would be the best place for your loved one under normal circumstances, that might not be the case right now. “There is never a good time to have this difficult conversation,” Whitehead says. “Considering the risks and benefits to your loved one around COVID is important. If it is no longer safe for them to be in their current situation, or it is time for a new level of care, do your research first.”
For starters, states are posting long-term care COVID data. “Find out who has had cases and who has not. Visit the facilities yourself to see the protocols they have in place and ask about their plans going forward,” Whitehead says. “Compare this information to your state guidelines and the CDC guidelines. Most importantly, talk with your loved one’s medical providers to assist you in determining whether now is the right time, and what they suggest to minimize exposure for your loved one. If they would be safer with assistance in long-term care, that might be better than [the patient] staying home alone, falling and making multiple trips to the ER.”
Resources for distance caregivers
Whether you’re new to distance caregiving or an old pro, here are a few resources Douglas recommends: