When the kids were young, we owned a Dachshund named Hershey. This dog was small, brown, shorthaired, and as busy as our young family. The kids would play in the yard with Hershey in the middle of their shenanigans. The shrill childhood voices mixed with Hershey’s small-dog yippy barks were familiar sounds. Puppy naps happened snuggled with a kiddo on a bed or the couch.

Doug participated in the bedtime routine at our house and had a specific task, storytime. Stories not from the brightly colored rhythmic children’s books we had stacked in every room but from Doug’s whimsical creativity and unique voices for every character. Doug was a playful storyteller engaging the kids’ imaginations before they drifted to sleep. Hershey was the protagonist, center stage, and always the hero.

Hershey went to the moon, swam in the ocean, climbed Mt Everest, saved the kids from the villains, and flew with a cape. In Doug’s conjured-up escapades, the kids were often in some random dilemma, and the dog consistently won the day. Occasionally the stories concluded with a nail-biting “To Be Continued…” because it was getting late, and it was time to go to sleep.

“Tell us a Hershey story,” the kids begged. “Tell us the one about…” I always smiled when their requests became specific because Doug made up those stories on the fly. Listening to him trying to recall the particulars the kids remembered was laughable. They keenly corrected Doug’s detail mess-ups as he willingly pretended he remembered. After the kids were asleep, I laughed with Doug about the impromptu storyline maneuvers he made. He would smile and say, “I just fake it until I make it. As long as Hershey wins in the end, we’re good.”

I am not innately colorful, spontaneous, and quick-witted like Doug. I am more black-and-white. I tell the truth easier than I freely make up a story on the spot. If I was elected to tell Hershey stories, Hershey would have been less adventurous, more practical, and dog-like in his ways – tail wagging, yippy, four paws firmly planted on the earth and no cape.

Advancing dementia has reintroduced story time in our home. The kids are not Doug’s audience. I am. Doug is the storyteller and participant with minimal vocabulary and enough creative energy for two. I am the playground mom hovering from a comfortable two-step distance, ready to intervene and prevent possible disaster, busy behind the scenes keeping him safe. These current stories are not fabricated and imagined; he knows them as authentic sensory experiences. Hallucinations are real to the hallucinator.

Before dementia, I naively excused hallucinations as belonging to a drug-addicted homeless person who saw scary things and was scary, calling out in exclamation and reaching wildly for the invisible. I am not as naïve now and admit my perception was woefully unfounded and probably Hollywood generated. Admittedly, hallucinations can frighten the hallucinator and their loved ones, but that is not always the case. In Doug’s case, the golf course is usually the stage, and he is rarely afraid.

Doug has been a golfer all his life. As a young child, he rode on the back of a golf cart and watched his grandparents and parents play. He still swings a golf club like a natural, the smell of fresh-cut grass is seared into his psyche, and even with limited language, he can recite the names of some golf greats. But alas, in Doug’s dementia reality, we live on an active golf course. We don’t. We live on a hill, in a cul-de-sac, with neighbors on all sides.

Wandering and hallucinations like to travel together. Stories are frequently told about grandpa, mom, or a loved one with dementia found meandering alongside the highway with cars speeding by or roaming through the schoolyard, sometimes miles away. These can be scary experiences for the wanderer, the family, and the people who encounter them. Just the thought of it raises my blood pressure.

Doug likes to go. He wants to be outside. He likes to “walk the course” even in poor weather conditions. Golfers golf rain or shine. Keeping a close eye on him is required. I have changed my shower schedule, I know where he is when I use the bathroom, I have door alarms on doors leading outside, a child lock on the man door to the garage (which doesn’t deter him at all), there are locks on the yard gates, and he wears a trackable iWatch. But even still, escape happens. I frantically scurry to find and join him when Wander and Hallucination walk hand in hand.

It’s easy to unthinkingly hold Doug responsible for his escapes and illusionary episodes, expecting that with a little lecture from me, my frowning face, and an excellent reason why not, he will remember and not do it again. After all, he’s an adult, looks like himself, and should know better. But, unfortunately, just the opposite is true. Doug’s changing brain is step-by-step diminishing his ability to reason, understand, and calculate safe and unsafe, right and wrong, true and untrue, good and bad. All his experiences, hallucinations or not, are authentic and rational to him, and my frowning, stressed-out face only muddies the waters and causes Doug anxiety.

I am learning to be in the experience with him. For example, our dog was outside barking, and Doug commented, “The dog!” I questioned, “His bark?” Doug responded, “The golfers.” I said, “Oh yes, I bet the golfers don’t like a barking dog. I’ll bring him in.” I did, and Doug relaxed; all was good again. The dog was no worse for wear, our neighbors were grateful the barking stopped, and the golfers in Doug’s storyline could continue with their game.

The afternoon and evening are Doug’s most bewildering times of the day. His brain is tired from earlier activity, and he struggles to make clear sense of the world. Mirror and window reflections take on new personas. Random strangers show up unannounced and join Doug at the table or on the couch. Invisible things float by that he reaches for. Naps, complete with deep breathing, muscle twitches, and head bobbing, are almost instant when he sits down and closes his eyes.

None of this appears to stress Doug; he takes it in stride. So far, we are lucky his hallucinations are mostly kind and haven’t led him into chaos or frightening places. I sincerely pray that this peaceful pattern continues.

It’s strange living in someone’s altered reality, but I am learning to play within his storyline, wherever it leads. I’ve added a little spontaneity, color, and wit to my routine. Sometimes I’m one of his characters; occasionally, I’m helping golfers get situated or talking with the invisible friend on the couch; other times, I’m the playground mom keeping Doug safe. Whatever my role at any given time, I try to remember to smile, speak with kindness, and take it one day at a time, as I fake it until I make it. After all, as long as Doug wins in the end, we’re good.

Karen