What it’s like to deal with the coronavirus and dementia at the same time

Sheltering in place is hard for just about everybody, but imagine you are Monnie Davis and your 24-hour-a-day companion is your husband, Carl, who is six years into an Alzheimer’s diagnosis.

He can no longer go to his day program — it’s closed because of the coronavirus — which had been a break for both of them. It was also a big part of his routine. Routines matter for people with dementia. Without them, behavior often worsens.

Carl, 71, is much more anxious now. He paces all the time, and looks out the windows a lot. He doesn’t talk much any more, but he’ll say things like “I have to go.”

Monnie, who like her husband is a retired pharmacist in Penn Valley, finds it all “frustrating beyond belief.” It’s hard to keep him busy, and there’s only so much she can do to distract him from his restlessness.

The need for social distancing is adding to the loneliness that plagues dementia caregivers. They have limited time for socializing in the best of times, but they also often have to shoulder extra stress and responsibility without the partner who helped them navigate the world.

“We’ve been married for almost 49 years,” Monnie Davis said. “To lose your best friend and husband and companion of all that time, that’s lonely.”

Alison Lynn, associate director of social work at Penn Memory Center, said she’s hearing from many caregivers who, like Davis, are dealing with frustrated loved ones. When told they can’t do their usual things, some people with dementia are yelling and crying.

Other caregivers agonize over how much to see aging relatives who still live alone, but need help with preparing food and taking medicines. That issue, Lynn said, is causing so much sibling infighting that no families would talk to a reporter about it. Some are keeping paid caregivers despite concerns they could expose loved ones to the virus. “It’s really a heart-wrenching, difficult choice for them,” Lynn said. Some caregivers, she said, are keeping semi-independent parents home with them for the time being.

» READ MORE: I knew my patient as her husband’s superhero caregiver. Then she dropped her mask.

Another trend that surprised her, though, was caregivers who say that years of learning to accept the uncertainties in a dementia diagnosis helped prepare them for the coronavirus era. A retired teacher in Mount Airy, who said she is too private a person to share her name, is in that camp. She cares for her 80-year-old husband. She listens to other caregivers talk about their journey and knows her mild-mannered husband could one day become much more difficult. “I’m living in that space," she said, “where the parameters are not clearly defined.”

The coronavirus has its own unknowns. The risks are much higher for older people, but most do survive. Even seemingly healthy young people can die, for reasons that doctors do not yet understand. The trick for living with both diseases, she said, is “finding peace within the space of the unknown” and adjusting to unpleasant changes.”

Lynn and Cynthia Clyburn, another Penn social worker, have written a “stay-at-home survival guide” for dementia caregivers that explains the disease and precautions, offers general tips on what to expect and how to relieve anxiety, and gives ideas for activities that may keep people with dementia occupied for a while.

The memory center is also offering virtual support groups, which have been well attended, Lynn said. Virtual meetings hold some appeal for people who find it hard to break away from caregiving. Monica Townsend, training and consultation specialist at Comprehensive Services on Aging at Rutgers University Behavioral Health Care, said Rutgers is also offering virtual support groups.

Several caregivers said they worry about what would happen if they got a bad case of COVID-19. Davis said she would normally turn to her daughter, but her son-in-law has a lung infection and can’t be exposed to the virus. Her three children are holed up in their own homes. “I had plenty of backup until this happened,” she said. “When this is over, people need to make a backup plan that doesn’t involve someone from your family.”

A Burlington County woman has gotten an extra dose of stress. Her 57-year-old husband, who has early-onset dementia, got the disease, and their family business is struggling during the shutdown. She did not want their names used because she has not told some people that he got the disease. He is recovering well, she said, and she has not had symptoms.

She’s been able to prompt him to wash his hands more frequently, but has had to tell him over and over why she can’t sit next to him and why he can’t go visit nearby relatives.

“Where are the kids?” he asks. “Why isn’t anybody coming over? Can’t they just come over?”

In the meantime, she’s missing one of her stress relievers — exercising at the gym. For now, the basement will have to do.

» HELP US REPORT: Are you a health care worker, medical provider, government worker, patient, frontline worker or other expert? We want to hear from you.

Brigitte King, 74, has been tuning in to a meditation show four times a week to help her stay calm while her husband, John, shadows her around their house in Fairmount. Like other couples, they’re taking more walks. She’s doing her best to explain social distancing. They don’t have masks yet. She’s covering her face with a scarf. She can’t get him to do it.

Monnie Davis has kept her husband busy by getting him to go outside to weed, rake, and sweep. She used to fight his efforts to wash the dishes. Now she lets him do it, then puts the dishes in the dishwasher.

Townsend said caregivers need to make sure they’re taking care of themselves. “We want our caregivers to be mindful of their own signs of frustration, taking moments to themselves to kind of address that,” she said.

She said caregivers don’t necessarily need to explain the coronavirus to get loved ones to maintain some distance. That could be frightening and lead to more agitation. Instead, in the grocery store, a caregiver can just say, “We need to make a little space so they can handle their groceries."

Lynn said caregivers should set new routines. Some have cleverly included frequent hand washing into their new schedules. Washing dishes is also a good opportunity for washing hands. Twiddle muffs, which are usually used to keep people from fidgeting, can also keep hands away from the face.

» READ MORE: Montessori techniques for kids are helping Philadelphia-area memory care patients live better

When people with dementia are frustrated by sheltering in place, she says, start by empathizing. “I know you want to go. I wish you could go too … but none of us are allowed to go right now,” she suggests saying. To relieve anxiety, caregivers can also say, “You’re safe in the house with me.”

For activities, she said, people with dementia often feel useful when they fold laundry. It doesn’t matter how well they do it, and caregivers can ask them to fold the same load over and over. Some patients like to sort coins. Many enjoy puzzles or looking through old photo albums.

Some families are writing cards for health-care professionals. People who can no longer write can often draw pictures. Many are doing family history projects. Lynn said some are also taking virtual vacations. They can watch videos about a country, and then listen to its music and eat its traditional foods.

The Mount Airy teacher said this is a good time to put a lifetime of coping skills to work. She recalled what her mother told her as a child. “She used to say, ‘Make yourself happy,' so that’s what I’m trying to do, make myself happy."