Families struggle with visitor limits at nursing homes

Credit: Kaitlin Schroeder

Alzheimer's caregivers face significant burdens in the workplace.

Credit: Kaitlin Schroeder

Two proposals in Ohio call for 'essential caregiver’ approaches.

Some family members of residents in nursing homes and assisted living communities have been advocating as the coronavirus pandemic drags on that they aren’t just visitors but a relationship essential to the wellbeing of their loved ones.

There are two proposals — similar to ones in other states — under consideration in Ohio that would create an “essential caregiver” program, which would let residents designate a family member to get expanded visiting access to see their loved one while still taking COVID-19 safety precautions.

Ohio Department of Aging received a proposal for an essential caregiver pilot program submitted by LeadingAge Ohio, which lobbies for nonprofit long-term care providers like nursing homes and assisted living facilities.

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“What they would be able to do then is visit at a higher regularity and stay longer to to assist their loved ones. So it is a way to fight social isolation,” said Patrick Schwartz, spokesman for LeadingAge Ohio.

Indoor visiting has recently started and outdoor visits have been allowed since the summer under restrictions, but families have struggled and continue to struggle during the pandemic

Winston Ferguson, whose mother moved to a memory care unit in Huber Heights during the pandemic, said it has been difficult to not be able to go inside and see his mother’s living space and having to do a virtual tour and sign the paperwork outside. He wasn’t able to help hang the pictures on the wall and get her home situated.

When his late father lived in a nursing home before the pandemic, he said he was able to stop by unscheduled and observe things like cleaning practices and advocate for any issues to be resolved.

“The difficulty, especially for people that are new, is that we can’t go and see the conditions of how our loved ones are being treated … It’s our job as a caregiver to be their protector," he said.

How to get help

Alzheimer’s Association offers free caregiver support groups, education programs, and care consultations. These services are available by phone or online during the COVID-19 pandemic. Call their Helpline at 800-272-3900.

Essential care

Texas, Minnesota, Florida and other states have implemented versions of an essential caregiver program and activists in other states have been pushing for the approach to be adopted.

Beth Gianforcaro, Ohio Department of Aging deputy director for communications and government outreach, said while they have seen elements of the approach, they will continue to work with LeadingAge and others to learn more about how effective these plans are.

“But it’s important for families to know, in addition to routine in-person visits, they can schedule compassionate care visitation when their loved one needs more physical or emotional support than a routine visit allows. The need and frequency for these compassionate care visits is a joint decision by the home and the families," Gianforcaro said, adding anyone with questions or concerns can call the State Ombudsman’s office at 1-800-282-1206 or OhioOmbudsman@age.ohio.gov.

This “essential” visitor approach was also recommended by a federal commission that was tasked with reviewing nursing home safety and quality during the pandemic.

When the independent Coronavirus Commission on Safety and Quality in Nursing Homes released its findings in September, it urged the federal government to require nursing home owners and administrators to encourage residents to designate an “Essential Care Partner” who can visit in-person when other visitors may not be allowed.

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Besides the proposal before Ohio Department of Aging, State Rep. Tracy Richardson, R-Marysville, on Oct. 2 introduced legislation that allows essential caregivers to enter long-term facilities to provide care and support to a facility resident during the COVID-19 state of emergency.

“For too long, residents of long-term care facilities have been separated from their loved ones,” Richardson said in her announcement of the bill. “Emotional health is critical to quality of life, and the COVID-19 pandemic has created a barrier to human connection for so many individuals.”

The bill when introduced was joint-sponsored with State Rep. Mark Fraizer, R-Newark, and 28 co-sponsors.

House Bill 770 proposes that a long-term care facility resident or a legal representative may appoint one essential caregiver and one alternate essential caregiver, and includes safety restrictions like wearing personal protective equipment.

Patrick Schwartz, spokesman for LeadingAge Ohio. CONTRIBUTED

Schwartz said if essential caregivers are eventually allowed through legislation like HB 770 or by the DeWine administration, LeadingAge would want there to be flexibility as needed for providers.

Safety and socialization

With visiting at senior living communities, residents have both social needs and infection control safety needs that have to be balanced.

The novel coronavirus poses a higher health risk to older people with multiple underlying conditions and can quickly sweep through a facility where people live closely together. The essential workers are also bear risk from the exposure.

From April 15 to Oct. 14, 2,800 Ohioans have died from COVID-19 who lived in long-term care facilities, according to preliminary data from Ohio Department of Health.

Social isolation and loneliness also are health risks, associated with higher rates of dementia, depression, high blood pressure, cognitive decline and death.

Some facilities have not restarted visiting or started and then paused, amid concerns of rising cases or challenges staffing and overseeing the visiting process.

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What an essential caregiver program does, is it recognizes some family members are critical to that residents' well being and it is part of striking this balance between infection risk and social needs. In Minnesota, caregivers get screenings and guidance on wearing personal protective equipment.

“If you can identify these essential folks, and give them a little training to hopefully reduce the risk of any kind of spread of the disease, then you get the best of both worlds … particularly for people that have any kind of dementia, this has been just so disorienting,” said Robert Applebaum, with Scripps Gerontology Center at Miami University.

Latoya Peterson, AARP Ohio associate state director of advocacy, said AARP is advocating that with expanded visitation, there needs to be ongoing and regular testing, transparent access to metrics and case information, access to virtual visiting as an option and adequate staffing to monitor the visiting process. AARP has started posting data resources and checklists to its website to help families.

“When we believe in visitation being expanded in these facilities, it has to be done safely,” Peterson said.

Latoya Peterson, Associate State Director of Advocacy, AARP Ohio.

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Indoor visiting starts, families say challenges remain

Ohioans living in long-term care communities are able to have loved ones visit for short visits with other safety measures.

The visitor rules have left some family members with loved ones with Alzheimer’s watching as time goes by and moments and memories are lost. Being on the outside has limited some caregiver’s ability to advocate for their loved one’s care.

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Sandy Barnett, of Springfield, said her husband Randy Barnett is living at Bluebird Retirement Community in London and she described this time as heart wrenching.

Randy Barnett sits next to wife Sandy Barnett, with their sons Joe, left, and Josh, right, standing behind them. CONTRIBUTED

Her husband was diagnosed at 48 and is now 53. She said unfortunately he is not verbal and remote options like FaceTime are not the same as it is for someone whose loved one speaks so being able to visit in person is her only communication.

“He has to touch me, see me physical, hear my voice, all those things are trigger points for him and you see his face light up every visit," Barnett said.

Allowing inside visiting is an improvement, but she said families should be able to go straight to their loved one’s room at least in her situation at Bluebird because Randy’s wing has it’s own outside door that could be used for families of just the Alzheimer’s unit. She said they could give longer than just 30 minutes, allow each family to sanitize their loved ones own room after each visit and make them remain in their rooms during their visits.

Meanwhile, Barnett said she constantly worries with this pandemic, with the limits on visits, and with the disease that the individuals will eventually forget loved ones, and Sandy Barnett said she fears that day when Randy will forget who she and their sons' are to him.

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She said she appreciates the Bluebird staff, and to those nurses and aides for all they do above and beyond for him.

Barnett said she would advise other families when looking into an assisted living or nursing home facility for their loved ones to ask questions about their turnover of staffing and their staff-to-resident ratios, which she said are so important to the quality of care they will receive.

Barnett said she can’t express enough how important consistency is for an Alzheimer individual, saying it’s not true that consistency doesn’t matter for people with “memory loss.”

“They do remember even if they may not be able to communicate verbally with you,” she said.

Ferguson said the facility where his mother lives has good leadership and he thinks the nurses do a great job, but he also wants to be able to check for himself how things are going.

He said he would recommend for families currently with loved ones living in nursing homes to call the facility frequently, get a good email for management, and to have an ongoing relationship with the site supervisor to the nurses.

“You have to have that type of basic communication on a regular basis,” Ferguson said.

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