Going the Distance: Caring for a Loved One with Lewy Body Dementia

An excerpt from Going the Distance: Caring for a Loved One with Lewy Body Dementia by Betsy Jordan.

Bad Guys

It became more and more obvious that sleep was difficult for Pete. He often thought that “bad guys” were in the house.

It is true that we had had an intruder in our home at one point. Pete had heard a noise in the kitchen and actually saw the intruder, who took Pete’s credit card from his wallet on the kitchen table, with the intent of going to the bank and getting money. Pete saw the burglar jump out of an open window and run away. After that incident, we made sure to lock the windows, strengthen the fence and install new outdoor locks.

Unfortunately, Pete became hyper-alert to the point of sleeping with a baseball bat on the floor next to his side of the bed. He wanted to “catch that guy.”  One night he phoned 911 five or six times, even though no intruders were evident. I began to wonder if his reactions were outside the range of normal concern, so I ramped up my nighttime awareness, sacrificing some of my own sleep in the process.

Meanwhile, Dr. S., our family physician and good friend, as well as the police who had answered the 911 calls, convinced him that it was better to keep one’s cell phone next to the bed instead of a baseball bat.

For Pete though, there were still bad guys out there. It was not uncommon for him to wake me in the middle of the night to show me the bad guy.

“Betsy, quick, quick. Come look.” He gently but relentlessly tugged at my right shoulder. Once I finally sat up in bed, he pulled me to the window. We hugged the wall, while he cautioned me to hide behind the curtains so the bad guys wouldn’t see us.

“There,” he said with satisfaction. He was pointing at the house being constructed next door. “Do you see him, there on the roof?”

“No, I don’t see him,” I would reply, hoping that my not seeing the guy would put the issue to rest. I did not.

“I need to find him,” Pete said. Then he dropped my hand and left the bedroom. Before I took another breath he was in the back yard. Since he had dragged me out of bed, I didn’t even have a robe on, so I ran to the closet, grabbed a raincoat, and ran after my bad-guy-hunting husband.

I soon learned that denying the bad guys was not fruitful. Instead, I calmed him by telling him that he obviously scared the bad guy away. This made him feel better. He prided himself, as an ex-SEAL, in protecting others. I actually loved this about him. Still, protecting me from an imaginary intruder at 2 a.m. was not my cup of tea.

Eventually I could convince him to return to our bedroom. As we returned to sleep, I would spoon him, hugging his large, still muscular body close to mine, hoping I could hold on to the Pete I knew, and pretending that everything was fine.