The moment some caregivers reach when home care for dementia is no longer enough : NPR

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Dr. Marc Rothman visits many dementia patients and their families. He is a geriatrician who makes house calls in New York and its suburbs.

“Families often slowly tiptoe toward crisis,” he says, gradually overwhelmed by the demands of care and the vagaries of the health system.

He says caring for a loved one at home can work well for years, but when dementia becomes advanced, it means “basically creating a nursing home for a loved one — it’s incredibly complicated,” says Rothman, who is also CEO of a technology company called Lizzy Care, which helps families navigate the world of dementia. “You have to take care of care. You have to take care of diet, medication, entertainment. You have to take care of rehabilitation and appointments, and you have to take care of yourself at the same time.”

In addition to the general feeling of upheaval, specific elements may prompt family caregivers to move their loved one to a nursing home or other facility. One of the major problems is incontinence, Rothman says. Other triggers include an uptick in paranoia, aggressive outbursts, and the tendency for some people to get up and leave wherever they are, then get lost.

This behavior is often called “wandering,” although not all dementia experts use this term. Elizabeth Edgerly is senior director of community programs and services for the Alzheimer’s Association. “At the most basic level, wandering means someone wanders off and has difficulty finding their way back,” she says. But she says the person with dementia often has good reason to take this action in the moment — a reason why the term “wandering” seems inaccurate to some.

“They may want to go home, even though they’re already there, but the house they’re in right now isn’t right for them,” Edgerly says. “Sometimes people leave because they need to get to work, that job they retired from 30 years ago, or because they need to pick up their kids, kids who are all grown up.”

“Elopement” is another term used by caregivers, particularly when the person with dementia leaves a secure area such as their home and may then put themselves in danger.

A terrifying episode for a couple

Edgerly says this behavior is more likely to occur as the disease progresses. It can be terrifying for caregivers like Valerie Staats. She and her wife, Shelley Schultz, spent decades working in healthcare. Schultz is 70 years old and suffers from Alzheimer’s disease. Staats takes care of herself at their home near Buffalo, NY

An event in the fall led Staats to rethink home care. She had driven them home after a long day and settled her wife down for a nap. She then returned to the car to clean up. “I was like, ‘I’m going to rest for about five minutes,’” she says. “Hours later I woke up.”

Valerie Staats (left) and Shelley Schultz have so far suffered from Schultz dementia at home.

Valerie Staats

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Valerie Staats

She was exhausted and it was now the middle of the night. She came in to see Schultz. She was not in the bedroom, so Staats, calling her name, searched the rest of the house with a creeping sense of dread. Schultz was gone. The aerial tag Staats uses to track her didn’t even show a signal.

“Now my panic is up there,” Staats says. “Panic can fill your chest. And I go out, I look for her, I drive, I can’t find her.”

Staats called the police. A search began and continued for hours. As the sun rose, police told her they had to shift from an active search to waiting for reports of any sightings. Staats was on the verge of despair. Then she heard an officer say, “They found her.” »

Shelley Schultz was found just a block from the house. She was cold in the fall air, but she was okay. Edgerly says if a person is found within 24 hours, like Schultz, a good outcome is more likely. She says that beyond this period, “the statistics are really scary.”

Grim statistics, expensive care

Of the 60 percent of people with dementia who become lost at some point during their illness, she says, “nearly half of those people [who are lost for more than 24 hours] will be seriously injured, or even fatal, often due to exposure to the elements or road accidents.

After this incident, Valerie Staats was overcome with guilt. She now constantly worries about Schultz’s safety and has increased the number of sensors and locks she has throughout the house.

Staats also has health problems, and the pressure of trying to maintain herself, Schultz, the house and their pets becomes too much. She is about to move Schultz to a secure memory care unit at a nearby senior living facility that they are both familiar with.

Memory care is much more than just a way to keep people with advanced dementia safe, usually – but not always – in locked wings or floors. The facilities train staff in dementia care, which has different characteristics than standard nursing home care.

“We are completely passionate about improving the quality of life for people with dementia,” says Loren Shook, president and CEO of Silverado Memory Care, which has multiple facilities in 10 states. “Our goal is not to see what you can’t do. Our goal is to see what you can do, and let’s build on that.”

Shook says having memory care can open up a new life for some people with dementia because the staff can involve them in things they love, something many family caregivers don’t have time to do on top of everything else.

“One of our principles is to give people meaning and engage them in useful activities,” he says. “Do you like teaching? Well, we have kids here and, you know, maybe you want to work with Sally on her homework.”

He says that over the years his staff has helped thousands of people with dementia relearn skills their families thought they had lost, like the ability to feed themselves and walk.

He adds that wandering, aggression and other behaviors become less common when the person with dementia is busy and feels that sense of purpose. In addition to welcoming children, Shook says Silverado allows residents to keep their pets to improve their quality of life.

Memory care is expensive and some families pay out of pocket. Shook says prices at the Silverado start at $10,000 per month and vary depending on factors such as the property’s location and a shared or private room.

To interact as a couple again

Valerie Staats recently learned from the neurologist that Shelley Schultz was in a serious stage of the disease. Staats believes the time has come for his wife to move into the memory care unit at the nearby senior living community — a possibility the couple has talked about. The two visited the place together on several occasions, and Schultz stayed there for a few weeks when Staats needed to recover from surgery. She trusts the “very friendly and knowledgeable staff” to provide her wife, herself a former nurse manager, with the best possible experience.

Valerie Staats and Shelley Schultz hold hands.

Valerie Staats

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Valerie Staats

However, he will miss sleeping next to his partner.

Nighttime is one of the few times when Staats sometimes feels a sense of their former intimacy – when she isn’t just telling Schultz what to do and what not to do. Schultz no longer communicates much verbally. This is one of the things Staats lacks, since Schultz was a big talker. But tonight, as Staats tucks her in and tells her she loves him, Schultz responds, “I love you, good night.”

If Schultz does indeed live in memory care, Staats says, she hopes to spend time together as a loving wife, not just a caregiver.

This article was written with the support of a journalism fellowship from the Gerontological Society of America, the Journalists Network on Generations, and the John A. Hartford Foundation.