When a loved one with dementia wanders away : NPR
Caregivers of people with dementia often reach their breaking point when their loved one moves away alone. How “running away” can lead to institutional care.
SCOTT DETROW, HOST:
Helping someone with dementia can be incredibly difficult as the disease progresses, especially if they live at home. Ashley Milne-Tyte shares how caregivers decide whether or not to entrust their loved ones to memory care.
ASHLEY MILNE-TYTE: Dr. Marc Rothman is a geriatrician who makes house calls in New York. He visits many dementia patients 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 care for someone with advanced dementia at home, you’re essentially creating a nursing home for that person. You have to take care of the care. You must take care of your diet, medications, leisure activities.
MILNE-TYTE: With housework, medical appointments, rehabilitation.
ROTHMAN: And you have to somehow take care of yourself at the same time.
MILNE-TYTE: In addition to general feelings of upset, specific factors may prompt caregivers to move their loved one to a nursing home or other facility – factors like increased paranoia, outbursts of aggression, or the tendency of some people to get up and leave wherever they are and then get lost. Elizabeth Edgerly is a member of the Alzheimer’s Association.
ELIZABETH EDGERLY: They might want to go home, even though they’re already there. But the house they are in now is not suitable for them. Sometimes people leave because they were able to hold a job they retired from 30 years ago.
MILNE-TYTE: This behavior can be terrifying for caregivers, people like Valérie Staats. She and her wife, Shelley Schultz, spent decades working in healthcare. Shelley is about to turn 70 and suffers from Alzheimer’s disease. Valérie takes care of her at their home near Buffalo.
VALERIE STAATS: So if you’re cold, I have another blanket that I can put on you if you’re cold. But are you okay?
SHELLEY SCHULTZ: I’m fine.
STATISTICS: OK.
MILNE-TYTE: But an event in the fall caused Valerie to rethink home care. She’d brought them home after a long day, settled Shelley down for a nap, then returned to the car to clean up.
STATATS: I thought I would rest for about five minutes. A few hours later, I woke up.
MILNE-TYTE: She was exhausted, and now it was the middle of the night. She went in and found Shelley gone. The AirTag Valerie uses to track her didn’t even show a signal.
STATATS: Now my panic is up there. It feels like panic can fill your chest. And I go out, I look for her, I go around. I couldn’t find it.
MILNE-TYTE: She called the police. A search began and continued for hours. As the sun rose…
STAATS: They’re packing their bags, and then all of a sudden I hear an officer say they found her.
MILNE-TYTE: Shelley was cold but okay. Valérie was overcome by guilt. She now constantly worries about Shelley’s safety, especially since she has health issues of her own. She is about to move Shelley to a secure memory care unit at a nearby senior living facility that they both know. Memory care is more than just a way to keep people 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 goal is to not see what you can’t do. Our goal is to see what you can do, and let’s build on that.
MILNE-TYTE: He says having memory care can open a new life for people with dementia because the staff works so hard to engage them.
SHOOK: What do you like to do? Oh, do you like teaching? Well, we have kids here, and, you know, maybe you’d like to work with Sally on her homework.
MILNE-TYTE: In addition to hosting children, Shook says his business allows residents to keep their pets to improve their quality of life.
STATATS: How are you, darling?
MILNE-TYTE: This is not the case everywhere, however.
STATATS: 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 considers where her wife will be safest and happiest. Nighttime is one of the few times when Valerie sometimes feels a sense of their former intimacy, when she isn’t just telling Shelley what to do or not to do.
STATATS: OK, baby. I love you. Good night, darling.
SCHULTZ: I love you. Good night.
STATISTICS: OK.
MILNE-TYTE: If Shelley does indeed live in a memory care center, Valerie says, she hopes to spend her time with Shelley as a loving wife, not just as a caregiver. For NPR News, I’m Ashley Milne-Tyte.
(SOUNDBITE OF TAY IWAR SONG, “REFLECTION STATION”)
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