She used to see her daughter and grandson every Sunday, go to church, and even help cook dinner that night if it was a recipe she is familiar with. But there are no more visits, no more church, and no more trips to places like the grocery store due to the pandemic of COVID-19.
Lynn resident Sam is his wife’s caretaker. She suffers from Alzheimer’s disease and the resulting dementia, but, under usual circumstances, the couple maintains a sense of normalcy by having a routine. Sam did not wish to identify himself or his wife by name.
“It’s not so much that routine helps her memory, it’s more that it gives her joy, a sense that there are people that come see her and care,” Sam said.
Sam said his wife has barely left the house since the coronavirus outbreak, and he has minimized his trips out of the home because he’s worried about getting them both sick in their old age. He has made lots of phone calls to friends and family, and always gets his wife on the phone, but it’s not the same as the frequent in-person visits.
“She asks (where her daughter is), and she asks when she’s coming,” Sam said. “It’s sad to hear, and there’s no sense in saying, ‘I’m sorry, we don’t know when she’s coming back.’”
A lack of regular communication has been the most difficult of the COVID-19 pandemic for his wife, Sam said, and the rest of their days haven’t been that different than normal. They wake up around the same time each day, and do things in a very specific order. They get dressed, then eat breakfast sitting in the same seats they do every day, with the television always on in the background.
“It can get tough trying to figure out what the rest of the day is like. We are watching a lot on TV,” he said.
Dr. Eric Reines is a physician with the nonprofit healthcare organization Element Care, which serves the elderly throughout Essex County and northeastern Middlesex County, with four offices in Lynn, and other locations in Beverly, Gloucester, Lowell, and Methuen. Reines has provided geriatric care to dementia patients at their homes, at Element Care offices, and at nursing homes during his past 12 years with the organization, and said having a normal routine is critically important.
“Right now, it’s rough. It’s a heartbreaking situation,” said Reines.
Element Care’s day care services are closed right now, and visitors are not allowed at its nursing homes, except in extreme situations such as end-of-life visits. And, for the many seniors with dementia who are confined to their homes right now, they can’t have visitors like children and grandchildren to brighten their days.
“The biggest thing is family and loved ones can’t visit. We try to set up ways to Facetime or Zoom or Skype between people with dementia and their families,” Reines said. “Sometimes families will visit just to knock and wave through a window, but, on a case-by-case basis, sometimes that can be more upsetting than no visit at all.”
Reines said people with dementia may not understand why they haven’t been visited. It’s also difficult that caregivers are getting sick, and strangers will have to fill in, confusing dementia patients. For those with very poor memory, doctors may even suggest that caregivers tell a white lie.
“If the memory is bad enough, you can tell them, ‘They were just here yesterday, they can visit tomorrow,’” Reines said. “I don’t like to tell white lies, but sometimes that’s the better part of the battle.”
People with dementia staying inside are being given activities like watching TV, doing puzzles, and playing word games. Objects that are familiar to them, or pictures, can be helpful in keeping a small sense of familiarity in their lives, Reines said.
“Some (people) are getting listless, just lying in bed, depressed,” Reines said. “Some insist on getting more upset if they are being held back.”
Reines said “it’s not worth the fight” if a person with dementia gets extremely upset and needs to go out for a walk. He added they should be wearing masks, and even gloves and goggles — that can be confusing as well — and staying 6 feet from others.
“Really, routine is important. If whatever part of routine is something you can still maintain, do that,” he said.
There are so many “unknowns” when it comes to COVID-19, Reines said, and that also applies to dementia patients. It’s unknown how long the pandemic will last before their routines may resume, and it’s unknown if they will be affected long-term by the current lack of normalcy.
Making sure that people with dementia are as comfortable as possible, while also minimizing the possibility of them getting sick, is about all that can be done.