Within a month, Margaret said, Joe had developed inappropriate behaviors such as blowing his nose on a tablecloth or opening packages in stores. By July, he was incontinent.
“Both Joe and I have suffered,” Margaret said. “I like to say we were robbed of this past year. We are not getting younger, so a loss to us at this stage of life is enormous.”
A year ago, her husband could independently bathe, dress himself, and use the toilet. Now Margaret must put him on the toilet after meals, waiting maybe 45 minutes for him to defecate or urinate. To keep him on the commode, she sits nearby and plays a game on an iPad—she said he enjoys watching.
Margaret has to stop her husband from wandering into the kitchen and eating constantly: He is 5 foot 6, and Margaret said he has gained 35 pounds in the past year. She can no longer take him to grocery stores, because he pulls items off the shelf, opens the packages, and begins snacking.
Joe is now disoriented in his own home. “He’ll put a pan in a dresser drawer. He’ll put towels in the bedroom. He doesn’t realize what he’s doing,” she said.
“I am his caretaker. He would go with anybody. I don’t know if he really even knows me,” Margaret said of her husband of 52 years. “I take him into stores and he wanders away from me. There’s no anxiety about being separate from me.”
Margaret feels like she lost her husband as a partner many years ago. But in the past year, he has lost her as well.
The Alzheimer’s Association calls memory-loss patients the pandemic’s “hidden victims.” For most of 2020, nursing-home patients were not permitted to have visitors or socialize with other residents. Meanwhile, patients who lived independently were also denied access to the day programs that are vital to slow their disease progression.
The directions came from the Center for Medicare and Medicaid Services (CMS), which regulates nursing homes. The precautions were meant to keep memory-loss patients safe from COVID-19. But for many, the cost of this isolation has been a deeper state of decline. Some patients have stopped recognizing their spouses or children. Others have lost the ability to care for themselves in simple ways. Some have become nonverbal.
Read: There is no one pandemic anniversary
Everyone has lost a year to the pandemic. But dementia patients have, in some cases, lost many years—or perhaps even all of the relatively healthy time they had left. Their caregivers, meanwhile—daughters, sons, spouses—have lost something too. After all, they are the ones with fully intact memories. They know how their loved one’s faculties have diminished, how their relationship has crumbled, how awful the personal toll of the pandemic has been.
State and federal health agencies are trying to determine how many Alzheimer’s and dementia patients have died prematurely during the pandemic. Early studies suggest that these deaths are about 10 percent higher nationally compared with recent years. Medical researchers have also yet to determine how many years or months the typical patient has lost to pandemic isolation. But neurologists, care-facility directors, and family members of memory-loss patients say they can attest to the decline.