It’s not a matter of if, it’s a matter of when. People with Dementia will wander. According to the Alzheimer’s Association, 6 out of 10 people with Dementia will wander at some point. I think it’s higher, those are the wandering “incidents” that are reported.
Why? From what I learned with a Mom with Dementia and from working with caregiving families for several years, they want to go home. Home, as in a place where they feel safe and where things are familiar. That’s the problem with this progressive, degenerative brain disease: familiar places aren’t so familiar anymore. I contend they are lost in their own minds, so they are seeking a place where they no longer feel lost. They could very well be in their own homes and still leave to find “home”.
Had a tough story to cover this week, one that hit too close to home. A 75 year old woman with Alzheimer’s walked away from her RV at a campground in Julian on Saturday while her caregiver husband was taking a quick shower. Today is Thursday. She’s still gone. There are searchers…on foot, on motorcycles, in cars, with dogs, in helicopters. But there’s a heck of a lot of brush and trees and farmland, and empty sheds and horse trailers in Julian. And she’s still gone. Heartbreaking.
I talked to her husband, a man she’d been married to for 30 years, who was so pained because he was supposed to be “in charge.” He does the dishes, he cleans, he cooks, he has one sided conversations with his love because she can no longer participate. She is able to do one thing, he told me, she makes the bed every morning. And he just wants her back.
I talked to her son-in-law off camera, because he is Dave Mustaine, the lead singer of Megadeath. He was cool, but in a sad place, hurting for his wife,daughter of the missing woman, Sally. I shared the story with both of them of the time my Mom wandered.
At the tender age of 61, Mom was diagnosed with Lewy Body Dementia. Doctors said she could no longer live alone, and we moved her into an assisted living facility in her town. Because she was 61–a good 15-20 years younger that the rest of the folks who lived there–and because she liked to paint and draw, once a week, a bus picked her up and took her to the senior center for an art class.
She wasn’t able to do too much at that point, but she liked taking out her colored pencils and paper and sitting with the other folks. That was until one day when she asked where the bathroom was. They found her later, on the street, flagging down cars. “Where are you going Linda?” “I want to go home,” she said.
When their environment changes, they get even more confused. They have to do a re-set to re-evaluate where they are, how they are going to operate, and that’s a tough task for someone with a brain disease like Dementia. I still hurt thinking about her level of panic, walking out of the bathroom and having no idea where she was. Trying to get somewhere familiar. I have no doubt that if she got into a cab, or if someone picked her up, she would have asked to go home, to the home she lived in for 20 years. Except now someone else lived there.
Thankfully, she didn’t get too far, and they came to get her from the assisted living. But that was the end of art class. We did some crafts and drawing in her room after that.
I went online and ordered her a bracelet. It had her name on the front, and her address, the words “Lewy Body Dementia” and my phone number on the back. It was gold with some beading, so it looked like jewelry. My Mom loved her jewelry. Now, of course, I know there are other options…like the Medic Alert/Safe Return bracelet offered through the Alzheimer’s Association, which has a registration aspect. There is the Take Me Home program in San Diego through the Sheriff’s Department. And there are new GPS devices coming out all the time. If only the folks with dementia would wear them. Mom used to cut or break her bracelets and watches off her wrist when she couldn’t figure out how to undo the clasps.
We were lucky. Others aren’t so lucky. I think of how confused Sally was. How she was looking for her husband, her touchstone, and because he was not in sight, she may have taken off. Or maybe she was looking for another room that was familiar to her.
I did get to do a little bit of educating on my live shots for this story (I’m a tv news reporter) talking about searchers not yelling her name because she might think she’s in trouble and not answer. Or the importance of searching low, because she may either see an obstacle in her path and turn away from it, or go under it and potentially get stuck. Or a trick I learned at an all day Dementia education class, to sing part of an old song as you look for wanderers in those early hours. “Row, row, row your boat, gently down the stream…” and listen for them to finish the rest of the song for you.
Sally’s still gone. It happens all the time. I ask you, if you have this in your family, not to say “Oh, she hasn’t wandered yet…” but to do something to try to prevent it. Put dead bolt locks high up or on the bottom of the doors. Put a bell or an alarm on the door. Put a black mat in front of the door on the inside, because with their depth perception issues, it may look like a hole and hopefully they would avoid that area. Buy a wall covering that looks like a bookcase and hang it on the door. Register them with local police. There are so many things we can try to do.
We, as caregivers, do the best we can. Bob is Sally’s caregiver. he was doing what they enjoyed, camping…something they did together. He was giving her nice experiences, as he had one sided conversations. I wish him and the rest of the family peace. They did the best they could. This disease is horrid. #ENDALZ