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Helping someone with dementia can be incredibly challenging as the disease progresses, especially if they live at home. Ashley Milne-Tyte reports on how caregivers decide whether to move their loved ones into memory care.
ASHLEY MILNE-TYTE: Dr. Marc Rothman is a geriatrician who makes house calls in New York City. He visits many patients with dementia and their families. He says caring for a loved one at home can work well for years, but...
MARC ROTHMAN: If you're trying to take care of someone with advanced dementia at home, you're essentially creating a nursing home for one. You need to take care of the care. You need to take care of the diet, the meds, the recreation.
MILNE-TYTE: Along with cleaning, medical appointments, rehab.
ROTHMAN: And you've got to somehow care for yourself at the same time.
MILNE-TYTE: In addition to general overwhelm, specific things can prompt caregivers to move their loved one to a nursing home or other facility - things like increased paranoia, aggressive outbursts or the tendencies some people have to up and leave wherever they are, then get lost. Elizabeth Edgerly is with the Alzheimer's Association.
ELIZABETH EDGERLY: It may be they want to go home, even though they're already in their home. But the home that they're in now doesn't feel right. Sometimes people leave because they got to get to work in that job that they retired from 30 years ago.
MILNE-TYTE: This behavior can be terrifying for caregivers, people like Valerie Staats. She and her wife, Shelley Schultz, spent decades working in health care. Shelley's about to turn 70 and has Alzheimer's. Valerie takes care of her at their home near Buffalo.
VALERIE STAATS: So if you get chilled, I got another blanket I can put on you if you're chilled. But you're OK?
SHELLEY SCHULTZ: I'm OK.
STAATS: OK.
MILNE-TYTE: But an event back in the fall caused Valerie to rethink at-home care. She'd driven them back home after a long day, settled Shelley down for a nap, then went back out to the car to clean up.
STAATS: Thought I'll rest for about five minutes. Hours later, I woke up.
MILNE-TYTE: She'd been exhausted, and now it was the middle of the night. She went inside to find Shelley gone. The AirTag Valerie uses to track her wasn't even showing a signal.
STAATS: Now my panic is, like, right up there. It's like panic can fill your chest. And I go out, looking for her, driving around. Couldn't find her.
MILNE-TYTE: She called the police. A search began and continued for hours. As the sun came up...
STAATS: They're packing up, and then, suddenly, I hear one officer say they found her.
MILNE-TYTE: Shelley was cold but OK. Valerie was flooded with guilt. She now worries constantly about keeping Shelley safe, especially as she herself has health problems. She's close to moving Shelley to a secure memory care unit at a nearby senior living facility they both know. Memory care is more than just a place to keep those with advanced dementia safe. Facilities train staff in dementia care. Loren Shook is president and CEO of Silverado Memory Care, which has multiple facilities in 10 states.
LOREN SHOOK: Our focus is to not see what you can't do. Our focus is to see what can you do, and let's build on that.
MILNE-TYTE: He says being in memory care can open up a new lease of life for people with dementia because the staff work so hard to engage them.
SHOOK: What do you like to do? Oh, you like to teach? Well, we've got children here, and, you know, maybe you want to work with Sally on her homework.
MILNE-TYTE: As well as having kids visit, Shook says his company lets residents keep their pets to boost quality of life.
STAATS: How are you, sweetie?
MILNE-TYTE: That's not the case everywhere, though.
STAATS: OK, Skye-boy, calm down now. OK, no paws.
MILNE-TYTE: Valerie thinks about Shelley's bond with their border collie Skye-boy as she weighs where her wife will be safest and happiest. Nighttime is one of the few times when Valerie sometimes feels a sense of their old intimacy, when she isn't just telling Shelley what to do or not to do.
STAATS: OK, baby. I love you. Goodnight, honey.
SCHULTZ: I love you. Goodnight.
STAATS: OK.
MILNE-TYTE: If Shelley does live in memory care, Valerie says, she hopes to spend her time with Shelley as a loving spouse, not just a caregiver. For NPR News, I'm Ashley Milne-Tyte.
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