Once after an appointment with a client, I was waiting on a doctor to finish up with a subsequent patient, review some tests, and give orders and prescriptions. It was a bit of a wait, so I had stayed behind to handle the details while the client went home with a companion caregiver. Making polite conversation to help pass the time, the doctor’s nurse asked, “Is that your mom?”
The answer “no, that’s not my mom” led into a discussion about my role. The nurse went on to express her love for working with Alzheimer’s and dementia patients and other individuals who no longer have cognitive capacity. The conversation went on a tangent about behavioral presentations in dementia, and she started to describe this resident she once cared for in a group home, before becoming a nurse, who exhibited “shadowing” behavior. She said, “She would follow me around everywhere … creep up behind me, scare the crap out of me. I’d never hear her coming. I’d look up, and she would be hiding behind a door, or creeping around a corner, peeking at me. Staring at me. Spying on me. Everywhere I went, she was there, just like my shadow. I worked the night shift, so I was the only one there.” The whole experience was understandably unsettling for the caregiver. Imagine, thinking you’re the only person awake in a house and being suddenly startled by a wordless, motionless figure standing so closely that what startles you to her presence is that you can suddenly feel her breath on your neck. Kind of sounds like the setup to a slasher flick, if you’re an aficionado of the genre.
Oddly enough, this friendly and obviously compassionate nurse provided enough detail that I got an odd feeling that I knew exactly who she was describing. It’s probably just a similar case, I thought. Shadowing and other types of behaviors she described are not unheard of. It could be someone else. Probably is, I thought. But heck, now my curiosity had the better of me, so I asked “What was her first name?”
It truly is a “small world”. I had been the resident’s guardian for years through her death, starting right after the point that the resident’s brain deterioration led her to require a higher level of care than was available in the setting.
When I came across this article by Alzheimer’s Support, What is Shadowing for the Person with Alzheimer’s and Dementia?, I thought, how helpful would this insight have been to that caregiver who went on to become a nurse? This will remind me to explain to caregivers, if clients or wards are shadowing them, to think of it like a small afraid child of their own is acting this way. While one may not know how to react to a parent or other adult patient exhibiting shadowing behavior, I think we can all imagine ways in which we might respond to a child who was acting in this manner. Imagine strategies you could employ to reassure a frightened child who can’t sleep?
“I don’t think there are any monsters under your bed, but if you ring this special magic bell, it will make them all go away, I promise you.” At 3 am, it’s easier and more effective to keep the closet monsters at bay rather than trying to convince the resident that closet monsters do not exist. That’s what we mean when we talk about non-pharmacological interventions. As your advocate, I’d rather give you a bell than a pill.
My one regret on the case of our mutual client is one over which I had zero control: I wasn’t involved sooner. Nothing could be done about the patient’s brain disease, but I know I could have kept her in a less restrictive setting than the one I found her in for much longer, perhaps until her last day among us.
To my ward, wherever she is now: Thank you. Thank you for the lessons. Thank you for the privilege of advocating for you.