When Debbie and Andrea’s sister shut down and stopped talking, after she publically obsessed over the beauty of her own feet, after the length of her sentences fractured into one word, after her blood was sent off for scrutiny, the pieces of a sad family puzzle finally fell into place. Their sister has a newly identified genetic mutation called chromosome 9 open reading frame 72 (C9ORF72) that can cause either frontotemporal dementia or motor neuron disease.
She stares at me, owl-eyed, empty. There is no embarrassment when time ticks on. She stares. A sound breaks her gaze and her eyes lock on to a new target. She is nowhere to be found. The old her, that is. The woman who showed such immense joy and love as a mother is gone. Her husband moves her around the streets of their city like he is pulling a 100-pound weight on wheels in his hand. She goes with the flow. He and the children have built a life around this new woman – this wife and mother who is lost to a genetic disease that has stolen everything human about her. She is only 38 years old. She no longer speaks. She stares. She is led to the bathroom, to the shower, to the table where they put a fork or spoon in her hand for her to eat.
Mary and Dick had almost 50 years walking arm-in-arm in marriage and in life when she began holding on tighter than she ever had. Her pace slowed. She pulled on her husband’s arm. It was a subtle change that would give way to other curious happenings around their home. She was the consummate organizer, planning trips that would take them all over the world, managing the bills, the meals, the social activities. She was an education champion and elementary school office manager. Now, everything was taking more effort. Bills went unpaid. Things went missing. She couldn’t plan international trips. She was frustrated. She had fits of anxiety and anger, uncharacteristic of her naturally easy-going way.
Almost 30 years ago, a middle-aged man traveled to an Alzheimer’s Association meeting with a copy of his mother’s autopsy in his bag. It read simply: dementia lacking distinct characteristics. He’d had his mother’s brain sent cross-country to try to figure out why she – and her two brothers and a cousin – died with a dementia that caused them to act impulsively and irrationally. It wasn’t just the bizarre behavior he was curious and concerned about. In illness, his mother’s brain was shrinking, and she’d lost so much of who she had been in her younger years. (She was 50 when people began noticing something very odd about her behavior.) But as her cognitive skills diminished she gained something rather remarkable: an exquisite talent for painting gazelles and churches and people.