The Reed – Rick's Story

Laura’s orchestra colleagues and her oboe students noticed the changes first. Her usual superlative playing (she did all the top gigs in New York and Boston) was becoming inconsistent and expressionless. In lessons, the detailed critiques for students’ work were diluted to “sounds nice.” Personally, I was just bugged by her new quirks and habits, her inattention to me, but I figured I was just a frustrated selfish middle-aged guy in a marriage that probably needed attention.

Within a year, our lives were on a precipice. Laura was unable to work, to safely drive, to make rational decisions. Every personality trait seemed either lost or distorted. The chaos would soon be summed up with a diagnosis from Dr. Brad Dickerson at Massachusetts General Hospital: Laura had Frontotemporal Dementia.

How could I possibly take care of her, myself, my kids?  How would I maintain my bassoon playing to the standards required of my job in the Boston Symphony? After months of no sleep, with no time to practice, and no time to do the arduous meticulous work bassoonists do making their reeds, I was desperate. Over days, I labored to carve out an acceptable reed. In the nick of time, I was rewarded: a new reed that would hold me for a few more weeks of tough performances. In seeing my new creation, with demented but honest and innocent pleasure, Laura reached out, picked up the reed, and snapped it in half. I gently closed her alone in our room, safe from my rage, and let myself fall apart in the hallway.

The FTD "journey" is a hell of a trip.

At my first FTD support group meeting I met Katie Brandt, a young FTD caregiver for her husband, caregiver for her father suffering from Alzheimer’s, and mother of a preschooler.  A force of nature, Katie quickly became an undisputed leader in our group, so important to all of us, within a few years she was hired by MGH as Director of Caregiver Support. Through advice, tears, and surprising bursts of unrestrained, beautiful laughter, she and the others in the group helped me to learn that my family and I could manage. With the brilliant team at MGH, with the steadfast help of many friends and neighbors, and even some strangers, our family coped, and we maximized the meaning of every moment of Laura's diminishing, sad last years of life. Only recently, 3 years after her death, memories of her before FTD are coming back:  her smarts, her charm, her beautiful oboe playing, her successes, her fun, her patient motherhood. It is that last item I miss everyday as I watch our kids take charge of their young adult lives. She’d be bursting with pride.

Kristo Kondakci