‘I would rather him be lonely than dead’ — how to manage when someone you love is in a nursing home

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When Katherine Klingseis realized nursing homes and assisted living facilities would soon be locked down because of the coronavirus, she got her hands on a flip phone and went to see her 78-year-old dad after work on Thursday.

Klingseis, a writer in Ames, Iowa, didn’t know when she would be restricted from seeing her father and she wanted to make sure she had a way to stay in direct contact with him. She has purposefully stopped going to his facility for now because she doesn’t want to unknowingly infect him, but the 30-day prepaid flip phone has come in handy, she said. “I am calling him a lot,” she said. “He doesn’t seem worried or concerned.”

She didn’t mind getting screened before she saw him, which included having her temperature taken via her forehead and answering questions about recent travel and contact with others who may have tested positive for the coronavirus. Screenings might be inconvenient, but it’s a way to keep residents safe, she said.

Her only concern: how the staff is balancing caring for patients and themselves. Limiting visitor access to nursing homes and assisted living facilities makes sense, as it reduces the risk of catching the disease, but it’s hard to steer clear of the coronavirus if staff and nurses become infected. “I am hoping they get some relief if they have been contaminated or if they show any symptoms, that they don’t feel they have to stay there,” she said.

See: Confusion and anxiety about who’s more at risk for coronavirus

Nursing homes, assisted living facilities and senior centers care for some of the most vulnerable people when it comes to the coronavirus, also known as COVID-19, the infectious disease sweeping the globe. Older people and those with underlying health issues, such as heart and lung disease, are the most at risk of complications after contracting the coronavirus, according to the Centers for Disease Control and Prevention, and those in their 80s have a higher death rate than any other age group. The CDC is advising these Americans to stay at home and stockpile food and medications for the foreseeable future.

There are more than 200,000 cases of coronavirus in the world. China, where the infection began, has more than 81,000 cases, followed by Italy, with 31,500 cases — and no steadying of the disease in sight yet. The U.S. is ranked eighth for most cases, with a little more than 6,500 people tested positive and 114 deaths in 18 states. U.S. government officials are rushing to get more screening and testing in place, while countries around the globe are locking down and closing borders.

Washington state has had the most deaths in the U.S., partially linked to an outbreak at a nursing home in February. More than 26 residents of the Life Care Center in Kirkland, Wash. have died, and another 30 people have tested positive for the coronavirus, according to the facility’s latest update on Monday.

A vulnerable population that needs protecting

Having a loved one in a nursing home during a health crisis is stressful, with so many questions and not enough answers. Some facilities have been continuously updating residents’ family members about policies in place, but still, a lot is unknown, said Gail Tedesco, whose mother is in a nursing home in Virginia. Her mother, who suffers dementia, understands her family can’t come see her right now, but she is not aware of the depth of the situation, Tedesco said.

Meanwhile, Tedesco is wondering what the next steps should be. She’s put a call into the nursing home’s business office to see what their contingency plans are, and wonders if the patients would ever be released back to family members in the event of a shutdown. She also worries about the health of the medical staff and caregivers. “It is the most vulnerable among us we need to be protecting,” she said. “Not just them, but the individuals who work in that space.”

For Tedesco and her family, and others who have loved ones with dementia or Alzheimer’s, there are also personal fears, such as how long the coronavirus crisis will last and how it will impact loved ones’ cognitive decline. Among the numerous questions Tedesco has about this is also “What are you going to be confronted with when this is over?” and “Will they remember you?”

Tedesco and her family are doing the best they can to stay in contact with her mother. “That is where I’m feeling at a loss,” she said. They were considering standing outside of her window to wave hello one day, but her phone doesn’t reach that far so it’s not as though they could really have much of a conversation face to face. She and her sister, Judy Kelly, are working on a schedule so that they and their husbands can make a call to their mother every day around the same time. Keeping her in the present is very important for a dementia patient, Kelly said. “I keep telling myself she is in the best place she can be right now.”

Her mom’s nursing home did initiate calls about restricting access, which she appreciated (compared with some other less-fortunate scenarios others have mentioned on social media, where they can’t get in touch with administrators), Tedesco said. She’s hoping they continue with more updates soon.

Also see: How to make sure your loved one is protected from coronavirus if they’re in a nursing home

One of the most important ways Americans can help society is to stay home, as many government officials across the country have said to do, said Nicole Aimée Schreiber, a comedian based in Los Angeles. She posted a video to Twitter on Sunday, pleading with others to take this seriously and protect the elderly and immunocompromised. “I had that meltdown when I saw videos of people going out to brunch or out at bars drinking,” she said. “I couldn’t help but imagine what if people working at my dad’s facility were doing the same thing when they’re not there.”

‘This will not be the end of the world’

Her 75-year-old father, who lives in a nursing home in Michigan, has advanced Parkinson’s disease. She hasn’t had as many opportunities to talk to her dad as she’d like, but said the caregivers at the facility have been helpful to her family. Her mother, who is 73 and a doctor working at a hospital, is his point person and has access to the facility, but Schreiber and her brother have asked her not to go. “I would rather him be lonely than dead, and I never thought I’d say that phrase in my life,” she said. “This will not be the end of the world, we just need to listen to what the experts are telling us to do, quarantine and distance ourselves.”

Living in a nursing home or assisted living facility may be more lonely for now, especially as more centers close off access to visitors and keep only necessary staff on hand.

“However isolated we feel, imagine how isolated they feel,” Schreiber said. She hopes facilities and centers come up with programs to mitigate some of that loneliness, such as more video chatting with loved ones.

Although she hates the idea of her father and others being lonely, she knows it’s better than the risks associated with the disease for the more vulnerable members of society. “As bad as we feel that our loved ones are isolated, as long as they are safe and keep safe, we will get through this and be together again,” she said. “A little loneliness is far better than losing someone forever.”

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