Coping With Loss: ‘Every Day Is a Little Worse’
A few years into Joel’s diagnosis, the couple had settled into a rhythm, but the disease continued to disrupt it as Joel’s symptoms changed. “Joel doesn’t recognize the house half the time,” Cathy says, which wasn’t the case at first. After living happily there for three decades, she found it upsetting to know their home had become an unfamiliar source of stress for him.
The hardest part of Joel’s memory loss for Cathy is that she doesn’t know what to expect. “Every day is a little worse, and every day is different,” she says. The couple still shares a bed, but sometimes he rolls over and asks who she is or tells her to get out.
Seeing Joel slowly forget the people and passions he once loved can make Cathy sad. During the first three years of Joel’s diagnosis, she left signs around the house to remind him of who she was and to avoid the stove. “But now he has cataracts and can’t read,” she says. “It’s the biggest loss because he would sit for hours reading in the backyard. Now we watch the news every night, and he usually doesn’t understand.”
Cathy has less autonomy, too, since she can’t leave him alone. When she wants to run to the laundromat or get her nails done, a member of her family has to be available to stay with Joel.
These restrictions can impact Joel and Cathy’s ability to connect. She can’t ask him if he wants to do things spontaneously, since a break from routine can cause him to become agitated. They can’t walk around Prospect Park, which they used to do every day, because of Joel’s confusion and mobility issues, Cathy says.
“Another advantage of early diagnosis is that you can talk with your partner at the early stage while they still can, and ask what their preferences are,” he says.
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