After living in a skilled nursing facility for almost a year, Randy Schiell, 68, returned to his two-bedroom condominium in Denver right before Thanksgiving. His wife, Jan, and their son and daughter-in-law, Chris and Marjery, had decided they wanted Randy, who has advanced Parkinson's disease, to live the rest of his life with his family.

Before the pandemic, Jan visited her husband daily at the facility. When visitation rights ended abruptly last March, she worked with the staff to see if Randy qualified for hospice. In May, he was approved for hospice care, which allowed Jan to visit him two hours a day. “I started visiting him once a week, then twice a week. Eventually I saw him every day for two to three hours,” says Jan, a former paralegal assistant. “The nursing home was lenient with my visiting because of hospice care.”

At first Jan's main concern was that Randy would contract COVID-19, but then she began noticing that the facility's care was slipping. “I walked in one morning and saw that Randy was obviously dehydrated, which had happened several times before,” she says. “Because of COVID-19, he was isolated in his room with the door closed, and we knew he was not getting the right care. That's when we realized it was time for him to leave.”

Isolation was the main reason Susan Koehn took her 94-year-old mother, Wilma Schuerman, out of a nursing facility in Cedar Falls, IA. When lockdowns took effect, Koehn was unable to visit Schuerman, who has mild cognitive impairment, but after a few weeks Koehn was able to see her mother during an eye exam. “Right away I could tell she was dehydrated, had lost weight, wasn't clean, and didn't respond to conversation,” says Koehn, a retired bookkeeper. “That's when I decided I had to bring Mom back to her home.”

Many families across the country are facing similar decisions, especially as the surge in COVID-19 cases has led to outbreaks in nursing homes and assisted living facilities, which continue to prohibit visitors, restrict communal dining and social activities, and limit specialized services such as physical therapy. Meanwhile, these facilities are dealing with shortages of nursing and health aides, many of whom have become sick with COVID-19 or need to stay home to take care of their own children or older parents.

“Living in a nursing home has been an isolating experience during the pandemic,” says Benzi M. Kluger, MD, FAAN, director of the neuro-palliative care service at the University of Rochester Medical Center in New York. “It's a huge problem for anyone with a neurologic illness, and more so for people in nursing homes. It can lead to depression and anxiety; I've also seen it worsen memory and behavioral symptoms.”

After Koehn's mom moved home, she started coming out of her shell. “She wanted to go out with me and was more interested in food again and put on some weight,” says Koehn. “She was more like her old self before the pandemic.”

At the beginning of the COVID-19 crisis, elder care agencies were receiving many calls from families asking whether they should bring relatives home. “Our phones were ringing off the hook in the spring,” says Sandy Markwood, chief executive officer of the Washington, DC–based National Association of Area Agencies on Aging, the largest nonprofit network helping older adults and people with disabilities live in their homes. The calls dropped off somewhat over the summer but have picked up as cases are rising again, she says.

“Every week about one to two families ask me whether they should bring their loved ones home,” says Christina L. Vaughan, MD, associate professor of neurology and chief of neuropalliative care at the University of Colorado Hospital in Aurora. Some families are opting for hospice care, which allows them to take the patient home and receive additional support, says Dr. Vaughan.

If you are thinking about bringing a relative home from a nursing home or an assisted living facility, follow these tips offered by neurologists, families, social workers, and other experts.

Consider These Factors

To determine how prepared people are to care for a loved one at home, Dr. Vaughan poses several questions. Is the family able to provide the level and type of care required? In some cases, that may include using such items as feeding tubes and bedpans. Do family members feel adequately trained to administer treatments and medications? Do they have the patience and fortitude to handle a loved one's agitation, disorientation, or frustration? Do family members have time to adequately care for the person? Can they ensure their relative's safety? Do caregivers have help and backup plans in case they get sick?

All of these are important considerations, agrees Cari Friedman, a clinical social worker at the University of Colorado Hospital, who has been affiliated with the Parkinson Association of the Rockies for more than two decades. She adds another for those taking care of people with Parkinson's disease, who can have violent dreams at night due to REM sleep disorder. “Are caregivers ready to have their sleep disrupted to handle these outbursts?”

Be sure to discuss all the “what ifs”—everything from falls and injuries to rapid declines in health, says Dr. Vaughan. “For some families, these conversations are hard, but it's important to think about the future and what could happen, and have plans in place.”

These might include creating living wills that indicate your relatives' wishes regarding their care if they become incapacitated, says Roxanne Sorensen, a geriatric care manager with Elder Care Solutions of WNY outside Buffalo, NY. Other helpful legal documents include medical orders for life-sustaining treatments (MOLST) and physician orders for life-sustaining treatments (POLST), which specify a patient's directives regarding resuscitation, use of feeding tubes, and other medical procedures. Visit the National POLST organization to find documents for each state. “These documents aren't static like a living will or health care proxy,” explains Sorensen. “They require a doctor to review them regularly with patients.”

Determine what to do if loved ones get sick or sustain serious injuries—you'll need a plan for how to accommodate and care for them when they're released from the hospital or rehabilitation center, says Dr. Vaughan.

Currently, Koehn's mother lives in her own home and has assistance from several health aides in addition to her daughter's help. If the situation worsened, Koehn would move her mother into her house, a five-minute walk away. “We have a room on the first floor that we could convert to a bedroom,” says Koehn.

Find Out Policies

Before moving somebody from a residential facility, talk to the staff about whether residents can return, advises Sorensen. “They may have to reapply and get back on a waiting list,” she says.

Both Jan Schiell and Koehn double-checked on that. “My mom can return, but my goal is to keep her home as long as possible,” says Koehn. Schiell learned the nursing home would need Randy's medical information, an evaluation of his health status, and insurance coverage before deciding whether to readmit him.

Rely on Your Care Team

The Schiells spoke with Randy's neurologist and social worker early on about bringing him home. “His neurologist provided moral support and cautionary advice about how transitions can be hard for patients both emotionally and physically,” says Jan. “The social worker was also extremely helpful. She handled the arrangements with the paramedics to transfer my husband home.”

“Working with the doctor, therapists, social workers, and chaplains helps families understand what they're getting into before they make the final decision,” says Dr. Vaughan. “This is a life-altering decision that isn't for everybody, so you can't go into it without talking to others about what to expect.”

Friedman adds, “I understand that families want to remove their relatives from places where there might be COVID-19, but they need to think through all the pros and cons of becoming a full-time caregiver.”

Assess Thoroughly

Moving can be disruptive, says Dr. Vaughan, who suggests families determine whether their loved ones would be happier at the facility than in a new environment. “Your relatives might miss favorite friends, aides, or therapists, so it's important to take this into consideration.” Even adjusting to a different and unfamiliar living space, no matter how comfortable or cozy, can be upsetting and disorienting.

Koehn says her mom was not seeing other residents at her nursing home once communal meals and social activities were suspended, and she was happy to return to her own home. She had moments of confusion about where she was and why, but those episodes lessened over time, says Koehn.

“For those with dementia, any sort of uprooting from a familiar environment can lead to agitation or frustration and an overall unsettled feeling,” says Dr. Vaughan. It also may increase the risk of falls or wandering, so families need to bear that in mind and do what they can to prevent such incidents. In the case of falling, that may include removing clutter and tripping hazards. To prevent wandering, stick to a regular routine, which can reduce agitation and restlessness, and install devices—a bell or an alarm, for example—that signal when a door or window has been opened.

Seek Services

“It's critical to know where to get extra help and how to coordinate health aides during COVID-19,” says Dr. Kluger. “Talk to agencies about precautions for managing risk and express all your concerns.” Contact community resources and local agencies for information on services such as home health aides, meal delivery, and palliative or hospice care. “Local resources can help shoulder the burden of care for families,” says Markwood.

Through hospice care, the Schiells get extra help. Once a week, a nurse visits to take Randy's vital statistics, order medications, and irrigate his catheter. Three times a week, a health aide comes to the home to bathe Randy and deliver supplies such as absorbent underwear and cleaning wipes.

Home health aides visit Koehn's mother twice a day and assist with bathing, dressing, and cooking. They help launch Schuerman each morning and settle her each night.

Be aware that the pandemic has made finding reliable aides more difficult. “We have seen a significant drop in the number of available health aides,” says Sorensen. “That shortage is a big problem in many communities, and it may delay finding good ones for relatives at home.”

Take Precautions

Before bringing a relative home, everyone in the household should get tested for COVID-19. If you're hiring health aides, work with a licensed agency and be sure it follows all COVID-19 recommendations from the US Centers for Disease Control and Prevention. If an aide is unavailable for any reason, the agency should be able to find another one from its personnel pool and minimize disruption in service, says Sorensen.

Establish a protocol for health aides, says Friedman: “Take their temperature at the door; ask if they have any COVID-19-related symptoms and if they've been out of state or been exposed to anyone with the virus.”

Be sure aides follow standard COVID-19 procedures while in your home: wearing a mask, using hand sanitizer, and maintaining social distance where practical and appropriate. Many aides help with dressing, bathing, and feeding patients, which increases risk to both aides and patients, notes Dr. Kluger. “You can talk to aides about trying to limit their contacts outside of work, but this can be tricky, particularly as aides may live with other family members who are also essential workers.”

Koehn chose a service that ensures that aides are tested frequently and wear masks all the time. “To keep my mom safe at home, it's about being extra careful by limiting close contact and regularly washing hands,” says Koehn.

Adapt Your Home

You may need modifications in your home to accommodate elderly relatives who have physical and cognitive limitations, says Gregg Frank, an occupational therapist who co-founded Back Home Safely in Randolph, NJ, with his wife, Karen, a physical therapist. The Franks help families assess their homes, then recommend and supervise installation of any needed safety features, which could include grab bars and chairs in showers or bathtubs, commodes, hospital beds, stair lifts, handrails, and doorway ramps.

“With COVID-19, we cannot visit their loved ones in facilities to do an assessment, so we talk to the nurses or physical therapists to understand [patients'] abilities before we make recommendations,” says Karen.

Depending on the house, those recommendations may include widening doorways to accommodate a wheelchair, converting a first-floor room into a bedroom, installing nonglare lights on walkways and adhesive strips on steps and slippery areas such as bathrooms and showers, incorporating a device on the stove top that automatically shuts it off, removing hazards like dangling cords and unsteady chairs, and lowering light switches and door handles so they can be seen and reached more easily.

Before Randy came home, the Schiells installed grab bars, removed area rugs, created bigger spaces for him to move around in, and purchased a portable commode and an electronic lift to move him from bed to wheelchair, toilet, or chair. “Many things can make life easier for the caregiver and patient, but you have to do the research and ask questions,” says Randy's son, Chris, who quit his job and moved across the country to help care for his father. “We may buy a new car that allows us to get my dad in and out a lot more easily.”

Despite the changes in their lives, the Schiells feel they made the right decision. “Dad is doing so much better now that he's out of the nursing home and surrounded by people who love him,” says Chris.

Koehn feels the same way. “My mother is much calmer and happier, and I worry less about her now that she's home, where I can see her whenever I want to.”

Resources for At-Home Caregivers

• Back Home Safely: backhomesafely.com; 973-219-4147
• Eldercare Locator: eldercare.acl.gov; 800-677-1116
• Home Safety Services: homesafety.net; 888-388-3811
• Hospice Foundation of America: hospicefoundation.org; 800-854-3402
• Meals on Wheels: mealsonwheelsamerica.org; 888-998-6325
• National POLST: polst.org; 202-780-8352
• Senior.com Medical Superstore: senior.com; 949-713-1400