Hallucinations with CTE Dementia

If you have never dealt with a person who is hallucinating it is a shock to the system the first time it ever happens. Trying to figure out how to pacify someone who is upset over something that is not there is a no win situation. Having never dealt with this before, I tripped off down the logic and reality path that dead ends in total meltdown for the person who is hallucinating. It was not a good night.

We live at the end of a mile long gravel drive, there are large pasture fields between us and our nearest neighbors. Behind us is a wooded steep hill, belonging to a series of wooded ridges running up the landscape separating our valley from the one on the other side. There are no near neighbors behind us. The pasture fields in front and to the side of us are fenced with electric fences. We also have 7 dogs, 2 chihuahuas, 3 terriers, a catahoula, and a pit Bull mix. If anyone comes anywhere close the house is filled with the sound of dogs barking.

When my spouse insisted that trailer park punks were out in the yard, I argued with him. I pointed out that there was no one there. I went outside, he claimed they hid when the door opened. I told him the dogs weren’t barking, that if anyone were around the dogs would be barking. He said he didn’t know why the dogs wouldn’t bark at the trailer park punks and he grew more agitated with me because I wouldn’t believe him about the late night visitors. It went back and forth, his agitation growing with my frustration and fatigue. I did not know how to pacify my spouse. Little did I know at the time, but the trailer park punks were to become nightly visitors for the next several weeks.

After trying to handle my spouse’s hallucinations with calm honesty and logic and failing, I finally read up on hallucinations in dementia patients and discovered that playing along will usually defuse the situation. So off to plan B…

I went outside and yelled to scare ‘them’ off only to be told they hid until it was safe for them to continue with their odd harassment. Reflections of internal lights, like the lights on the coffee maker, became flashlights roaming the back hill behind the house. I found myself purchasing a Ring camera that lit up the front yard like a traveling circus. I could pull up the front yard on the phone and show him pictures to reassure him, only to be told that the miscreants were just out of camera range. I would be roused in the wee hours so I could hear non-existent voices conversing on the front porch, or a non-existent vehicle racing up and down the driveway.

I work rotating 12 hour shifts and many nights on my day shift rotation I would be wakened to investigate these capering punks in the yard, in the woods, or driving up and down the driveway…one night I took the catahoula on a leash up the trail into the woods behind the house. He kept looking over his shoulder at me, wagging his tail like, this is cool mom!!! I stopped about a quarter way up the steep hill and looked up at the thick canopy and asked myself, what I thought I was doing? Standing there in my pink crocs, and oversized pajamas, bed head, mostly blind without my lenses, dog on a leash at 2:30am, I realized it wasn’t working. I wasn’t accomplishing anything good.

I decided I would just stop trying to convince him one way or another. We were under the care of our primary physician, who had referred us to a very good psychiatrist. We were working out just where we were on this terrible journey. The last straw of this trying stage was the night I refused to get up and go deal with the trailer park punks and my spouse got his revolver and fired a couple of rounds up into the woods behind the house. Terrified, and riding an adrenaline rush I went out on the porch and I watched him strut around the house to tell me that he had taken care of it.

Our visits with the psychiatrist, who specializes in elder care, started us on the path of controlling the disruptive symptoms with medication. Once we got a couple visits in and the dosages adjusted, the trailer park punks stopped their nightly rampages.

The symptoms of this terrible illness vary with individuals. Hallucinations, agitation, aggression, personality changes, inability to make decisions, or take care of themselves, all mark the progression of dementia. No one set of coping skills is guaranteed to work when caring for a loved one. It becomes a loose adaptive process, because once you think you’ve got it…well, you don’t. Once you think you have a handle on it, it changes. The key is to find within yourself the understanding of what you are trying to accomplish and hang on for the ride.

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