Title: Symptoms of Agitation
Subject: Meryl Comer

You know, stories unfortunately involving Alzheimer's gloss over the unseemly details of the journey. I call it our version of pain management, but it doesn’t do justice to the cruelty of the disease and the behavioral changes, like agitation, that isolate and demean the very dignity of the loved one that you as a caregiver, you know, are vowed to protect. What is not uncommon in dementia, and it was true of my husband, was this episodic personality shift to something more aggressive, egocentric, somewhat emotionally abusive. And as his mind began to unravel, the slightest frustration and sense of loss of control set him off. And as a physician misdiagnosed four times, it gave him license to target me as an adversary. So, his demeanor and behaviors day-to-day were unpredictable.

From my experience with my husband, agitation could range from being aggressive to when being offered help at Thanksgiving time to carve the turkey, he grabbed the knife and pointed it toward my son and then slammed it down and walked out the door. Nothing to provoke the behavior, but an extreme and frightening behavior for the family at the table. I took him to a gym, because I had seen people in wheelchairs in facilities and I thought the muscle memory is gone. And I tried to work through it by helping him with his repetitions. The mistake I made was that I was making him stronger, so I had compounded my problem. In the hospital, I was the only one who could get close to him, he knocked out my front teeth while I was trying to give him a shower. And I pressed the buzzer, and the nurses came running. They were afraid of him, so I was the one doing the shower duty.

There is some adrenaline rush with the agitation. If my husband grabbed my arm, and I have a photo that looks very loving, but if I had tried to pull my hand away, he would have broken my wrist. So, it runs the gamut. The agitation was usually followed by the paranoia. “Someone is looking in the window”. “Someone’s going to – is stealing things from me”. I would always find them and say,” Oh, I'm sure you’ve just forgotten them”. And then, at night the hallucinations were serious. Things came out of the wall. It was bizarre. So, here I am. I would go capture them with a pillowcase. As amusing as this may sound, say “I’ve got them”, walk down the steps, open the door, and say “They’re gone” and come back up and get ready for the next round. It was a survival strategy for me to live in his world rather than contradict or correct him. He wouldn’t understand it. He didn’t have the insight to understand it. So, I played in his world. Otherwise, I was the target.

My best advice to caregivers is don’t try to argue with a loved one who has dementia. You won’t win the argument and if you concede, what have you given up? It’s a survival strategy. Does it really matter? Let it go. Let it go. The literature review on agitation of dementia show how little we know about how to manage the intersections where I call it the scaffolding of one’s identity begins to fall apart. But it is a necessary first step if we’re ever going to treat the ravages of dementia.