In the early stages of my mother's disease, I woke up every morning with a familiar knot in my stomach. Before even opening my eyes, I'd paw at the bedside table for my cell phone. How many of her calls had I slept through?
The countless calls I'd answered every night since her erratic behavior began quashed any lingering hope that her condition was temporary. Sleep was elusive for her, and the phone was a lifeline during tormented nights when hallucinations ruled her consciousness.
Her hallucinations were sudden and startling. Still capable of managing a checkbook and handling appointments, she also described seeing small people, animals, and my recently deceased father.
By then she had moved to an assisted living facility—a converted historic building in a popular urban setting—that was ill-equipped to handle residents with dementia. Once charming, its bathroom doors were too narrow to accommodate a wheelchair. The winding hallways were confusing labyrinths for anyone not living next to the elevator. Call buttons and pull cords that once summoned staff hung from the walls like costume jewelry, pretty but useless.
The persistent hallucination of my father gave my mother a renewed purpose. She fretted about getting him to dialysis and how she would pay for it. She wondered how the nurses would cope with the return of a patient who had died six months earlier. She worried about telling the facility that her husband was now living in her apartment. Meanwhile, on her more lucid days, she capably argued with the IRS about the previous year's tax refund.
Ignorant that hallucinations can be an early sign of dementia, I assumed her behavior was grief-related. I wanted it to be grief-related. I worked hard to coax her back to reality. But the harder I tried, the more agitated she became.
Stress and dementia are like dance partners. Sometimes one leads, sometimes the other. Either way, they create their own rhythm. I had to learn to play a slower melody.
On the advice of various caregivers, I sought out new ways to bridge the gap between my mother's world and my own. Using an iPad and earbuds, I conjured images of Frank Sinatra and pumped his voice deep inside her head. For a moment, as she lifted her gaze in recognition, it was 1947 again.
Or I would bring a familiar prop, such as her old knitting needles and some brightly-colored yarn, and pair it with a "how to knit" video. As she grasped the cold metal knitting needles, felt the rough texture of the wool in her hands, and heard the voice of the instructor, her face would light up. The fact that her gnarled fingers could no longer knit never really mattered.
My mother's dementia progressed, and we went from a mixture of good days and bad, to a stage where she barely moved and was intermittently conscious. I kept the music on and continued to paint her nails. In her final days, I walked the halls of the dementia care wing, in and out of conversation with the many extraordinary caretakers who were like family by now. We traded stories about our parents, keeping them close as they faded away.
Lewy body dementia is a formidable foe, but by focusing on our shared connections—to my dad, to music, and to knitting—my mother and I found smoother waters in the midst of a wider storm.