Oh, dear. There are not words. Knew this was a progression that would eventually occur, but I was so not ready for it. My husband seems so high functioning in some ways. He still goes to work. He still goes to the gym. He still walks. The walking may have to come to an end.
A few weeks ago, my husband diagnosed with bvFTD (dementia), disappeared. For three hours, I did not know his whereabouts. He did not answer his phone. Terrifying.
An apartment complex caught on fire across a major thoroughfare and up a hillside. My husband was walking in the neighborhood and saw the smoke. He immediately thought, “I want to go offer the fireman my help.” Like a child drawn to an ice cream truck, he made his way, not to the charming songs of a treat truck, but to the smoke emerging from the tops of the trees. He cut through a ball field, navigated between hedges, jumped a fence, leapt over a creek, played Frogger across a road below the underpass, trudged up the hill to the fire over two miles away.
My husband offered his help to the fireman. When questioned, “I wasn’t dressed to actually go into the fire, but I was willing to direct traffic, help with the crowd, and console people.” Seriously. His phone died filming the fire and taking pictures (keeping his phone charged is an ongoing struggle).
I was distracted with chores at the house and did not realize how much time had passed. He frequently walks in the neighborhood for 45 minutes or more. There has not been a wandering issue as of yet. So, it was not on my radar. I checked the GPS tracking app, and it registered him at the ballpark. There are games on Saturday. He was likely socializing with strangers there. That was my thought, initially.
Finally, the time elapse came to my consciousness. Where was my husband? I traveled to the park to track him down. No sign of him. Uh oh. I texted friends in the neighborhood where he may have strayed for food and conversation. Nope. Uh oh. Panic. Phone calls straight to voicemail. More panic.
I was about one minute from dialing 911, when a black SUV approached in the parking lot near the park. The SUV never came to a stop, but my husband jumped out. Wait. That’s a stranger. That vehicle has Florida plates. We live in Alabama. Panic again.
Needless to say, I was less than calm when asking my husband where he was and what happened. The story came in bits and pieces. He had no understanding of the danger he put himself in. He had no understanding of why I was concerned. Bottom line, he was lost. He didn’t know how to get home. He knew enough to ask for a landmark close to the house. A new behavior has begun. My hope was it was a one-off incident. Somehow, the long conversations and terse concern for his safety would stick with him despite his impassivity and more pronounced memory deficits.
Nope. It happened again. Three weeks later. This time it was music. The sounds came through the woods beckoning his investigation. And off my husband went landing at a youth baseball park over a mile away in an unfamiliar city. No idea how to return.
And, so, it’s time to rethink, develop new strategies, grieve. There’s no stopping the progression of this devastating disease. There’s only management of the symptoms and behaviors. I need strength. I need time. I need patience. It’s not just the patient that becomes lost with dementia. It’s me, our three boys, the caretakers, too.
Our Frontotemporal Dementia Journey 
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