A Marquee Sign Memory
Meet Norm & Peg Keiser, two long-time Poughkeepsie residents with a unique story to tell.
Before retirement, Norman Keiser was a history teacher for 10 years. He created his school’s first ever African American culture and history program. Later, at the human service agency Family of Woodstock, he established a program to help struggling teens in the area.
Today, Norm requires his wife’s help to get dressed in the morning.
“Some days are harder than others,” says his wife of 49 years, Margaret (Peg) Keiser. “I compare his memory to a blinking marquee light above the movie theater. The lights are gradually blinking on and off, appearing and disappearing all the time.”
Norm was diagnosed with early cognitive impairment in 2012. He started showing signs of memory loss five years ago, but doctors were hesitant to officially diagnose his condition. It was not until a visit with a neurologist in 2013 that the Keisers were told Norm has Alzheimer’s disease. A usually mild-tempered man, Norm now struggles to complete basic everyday tasks, like reading the paper or putting the dishes away, resulting in temporary bursts of anger.
The Alzheimer’s Association lists Alzheimer’s disease as the sixth leading cause of death in the United States, affecting over five million Americans. While the disease takes a toll on the entire country, costing the nation an estimated $236 billion every year, the emotional and financial distress to individual caregivers is significant.
“I have to be on 24 hours a day, seven days a week,” explains Peg, whose 99-year-old mother is also struggling with memory loss. “It’s scariest when I get sick. I’m the chief in charge, and I have yet to come up with a backup plan if I’m not around.”
Since Norm’s diagnosis, Peg spends more time at home, no longer drives and has sacrificed hobbies such as volunteering and weaving to take on the role of Norm’s primary caregiver. As a retired occupational therapist, Peg explains that she is doing the same thing for her husband as she had done for work. “I’m just not getting paid for it,” she jokes.
The couple lives together at their Poughkeepsie home on South Clinton Street. Every day, Peg wakes before her husband, starts breakfast and puts out his medication. She assists Norm in the shower, soaping the sponge and then giving him instructions.
“Remember your arms,” she tells him. “Your arms, Norm, not armpits.”
She gathers both their outfits for the day and organizes them on the bed. Often times Norm puts on whatever clothing he sees, dressing in pajamas during the day or putting on a dress shirt during the evening. Without Peg realizing, he has been known to leave the house wearing slippers.
“This shirt is pretty tight on me,” he tells his wife, as he comes downstairs wearing her sweater.
Peg depends on both their retirement funds for financial necessities, gradually spending more and more as Norm’s disease progresses. She compares the emotional toll to a roller coaster, constantly reminding herself to laugh at the everyday inconveniences that may arise. Physically, she admits to often feeling tired. The two visit a trainer twice a week for Peg to work through the stress and for Norm to remain active.
Norm attends the Friends and Family Adult Day Program in Hyde Park, where he is able to socialize, indulge in his love of sports and go on field trips. Community outings include local concerts, a visit to the Roosevelt estate and strolls across the Walkway Over the Hudson.
Peg asks her husband as he returns from the day program, “Do you remember what you did today?”
“Not today,” he says, “but I usually play ping pong and softball. I like playing sports.”
He mentions twice during conversation, “I love exercising.”
In his younger years, Norm ran 5–10K races, played tennis and was an expert player of chess and checkers. At 83 years old, he continues to dominate his opponents, usually his brother, in a game of chess. He enjoys political documentaries, though he often doesn’t remember the content of the program once it ends. An avid Mets fan, Norm watches his team play every chance he can.
“Everything stops in this house when the Mets are on,” Peg laughs as Norm gives a smile and puts thumbs up in agreement.
The Alzheimer’s Association provides a series of services for caregivers, both private and community-based. Services include care consultation, community meetings, a 24/7 hotline, caregiver support groups and classes to educate the public on Alzheimer’s disease.
“The biggest problem about a brain disorder is that you can’t see what’s happening,” says Elizabeth Johnson, a care consultant for Dutchess and Ulster counties.
A licensed master social worker, Johnson has worked with the Alzheimer’s Association for four years. In her experience, she has found that caregivers struggle most with understanding the disease. She is responsible for appropriately adjusting their personal expectations and teaching caregivers how to support their loved one, as well as themselves.
“The person changes day to day,” Johnson continues. “The disease is always progressing, so caregivers never know what to expect.”
Peg initially sought help from the Association to learn more about the disease. Three years ago she began attending caregiver support groups, where she meets other caregivers, shares ideas and learns how to give the best care possible.
“The biggest lesson I learned from the group is not to get angry,” says Peg. “He’ll be trying to read the New York Times and ask me to explain a story. Three minutes later he’ll ask me to do the same thing… It’s better for both of us to laugh it off.”
Peg describes caring for a loved one with Alzheimer’s as “creeping caretaking.” As the disease progresses, the responsibilities of the caregiver increase. The caregiver is constantly solving new problems and learning how to effectively manage certain situations.
A more recent struggle, she explains, is that Norm feels the need to remain helpful in the house. She says that Norm used to clean and put away the dishes, but now he doesn’t remember where everything goes. She usually stands by him, giving him the same instructions over and over, as she knows she can do the same job in half the time. She continues to look for ways he can preserve his independence while she maintains her sanity, exemplifying the need for a caregiver’s endless patience and self-sacrifice.
“The most important thing is that you find time for you,” Peg says. “While you’re taking care of them, you can’t lose track of who you are.”