Editor’s note: Chatham County’s population is one of the oldest in North Carolina. For many families in the county, this will mean a struggle with Alzheimer’s disease or another dementia-related condition. This story — the first of two parts, to be concluded in next week’s edition — tells the story of one Chatham woman’s experience as a caregiver for an aging parent, and what today’s (and tomorrow’s) caregivers can learn from her experience.
It was the middle of the ‘90s when Jessica Bryan first thought something was amiss with her mother.
Bryan, the managing broker at Real Living Carolina Lifestyles Realty in Pittsboro, was living in the same Los Angeles subdivision as her parents at the time. It was neighborhood game night. Though they were older than most of the neighbors, Bryan’s parents had been embraced by the community and frequented such gatherings. Yet this night in particular, Bryan’s mom just couldn’t grasp the rules of the evening’s game.
No matter how many times they were explained, she remained confused and kept making mistakes.
In time, Bryan would come to see this as an early indicator that something was wrong.
“I didn’t really think about it much until a few months later,” Bryan recalled in a recent interview at Real Living Carolina’s Pittsboro office. “[My mom] called. … She was out and she couldn’t find her car. She called and she was very agitated. Then there was another time when she couldn’t figure out how to start her car.”
Diagnosis would take another five years, but Bryan thinks of the game night in the San Fernando Valley as the beginning of her mother Pauline Pulizzi’s quarter-century of living with Alzheimer’s disease. Bryan eventually became Pulizzi’s caregiver, as her once-dignified mother’s mind and behaviors changed inexorably.
Bryan’s experience is hardly unique. As people age, risk of dementia increases. Alzheimer’s is the most common form of dementia, granted, and the two terms are occasionally used interchangeably, but dementia takes other forms as well: Parkinson’s disease, vascular dementia and Creutzfeldt-Jakob disease being a few examples.
Per the 2017 Chatham County Community Profile, Chatham is already older on average than much of the rest of North Carolina, with more than half its residents 45 or older. Within the next five years, some projections call for a significant increase in the number of people over 50 years of age, which could make Chatham the 4th-oldest county in the state — up from its current ranking of 8th, with much of this growth occurring in Chatham’s northeastern corner. (In one example of this impact, Briar Chapel’s latest expansion, which includes an assisted living facility, is geared toward attracting residents 55 and older.)
In short, the portion of Chatham County residents at risk for dementia or with loved ones at risk for dementia will grow. The future will see more Jessica Bryans, doing their best to care for aging parents.
And there will be more Pauline Pulizzis.
“What a crisis we are in. I’m getting people in their 30s telling me, ‘I’m scared to death. My mother is showing signs,’” says Bryan. “Yeah. She’s 60. She’s showing signs already. There are people in their 40s that are showing signs already, and that is scary.”
Susan Hardy, community care manager with the Chatham Council on Aging, recommends that people in this situation sit down with their parents and ask how they envision their lives as retirees. This way, if a parent ends up with dementia, their wishes are known and there’s a plan in place. Yet there aren’t many non-seniors at the Council’s workshops, she notes, though they are designed to educate everybody.
“Any kind of workshop, I encourage young people to take as well,” Hardy says. “You’re going to be old someday too.”
As for Bryan, she didn’t set out to be a caregiver for Pulizzi, but she accepted the mantle when it came to her. Today, she advocates for Alzheimer’s awareness; among other things, this takes the form of books she has written — some of which are written for readers with Alzheimer’s. Bryan speaks from the perspective of an experienced caregiver, sure, but also as someone who has seen the disease strike both of her parents and her brother as well.
“I’m now a senior citizen. I don’t like to think of myself in that way, but I am. And I want to create a better tomorrow for my children,” she says. “I am trying very hard to think of how I can set things up so they won’t have to face what so many people are facing yet today. I don’t really have a solution yet, but man, am I going to make a lot of noise.”
Her mother Pauline was born Pauline Gamburg on June 6, 1919, and raised in New York. Her talents flourished at a young age, and she sang on a weekly radio show as a 6-year-old and excelled at school. As an adult, Pauline valued manners and decorum. Bryan remembers her mother as an intelligent, elegant woman whose Depression-era upbringing made her especially resourceful. Pulizzi was an excellent cook. And though their family was financially lower-middle class, Bryan says, her mother always made sure there was money for the arts, for music lessons, for finer things.
“She sent me to a finishing school, for example,” Bryan says. “I know how to entertain the Queen of England. If I have to do it, darn it, I’ll do it.”
This was the woman Bryan had called mom her entire life: elegant, but down-to-earth; dignified, intelligent, funny and musically talented. Indeed, Pulizzi was a lifelong learner who took Spanish and Italian classes in her 70s.
Alzheimer’s, however, had other plans. When Bryan’s husband Skip accepted a job offer, the family moved from LA to north Chatham. Her parents moved with them and lived in an apartment built into the new home. Bryan noticed little changes at first. Her mom would misplace things (once, she found Pulizzi’s eyeglasses in the freezer), though moments of forgetfulness that can be chalked up to Alzheimer’s might also just be part of aging — or of simply being human.
“Look, if I couldn’t find my car and I was sure I had parked it here and all of the sudden I can’t find it, I might think that somebody stole it, too,” Bryan says.
Yet after Bryan’s father Nicholas died in 2002, Pulizzi started exhibited undeniable signs of dementia. So five years after that game night in the San Fernando Valley, Pulizzi was tested and diagnosed with Alzheimer’s. Considering that Pulizzi had just lost her husband to Alzheimer’s, Bryan didn’t tell Pulizzi the results. She felt they would simply be too devastating.
Pulizzi didn’t need constant supervision — not yet — and remained in the home she shared with her daughter and son-in-law. Bryan is a Realtor and frequently worked out of her home office. She recalls that during this era, Pulizzi would come into the room while Bryan was on the phone with a client and just stand there, listening and watching.
“Yes, Mom, can I help you?” Bryan would say.
“No, no, no. Finish your conversation.”
“No. You tell me what you need.”
“Have you ever seen this picture of your father?”
“Yes, like, 20 times today, thank you very much!”
Hardy teaches a class called Powerful Tools for Caregivers, typically once in the spring and once in the fall. This class is comprised of six sessions, with the next instance taking place in September and early October at the Eastern Chatham Senior Center. Among other things, she teaches caregivers how to communicate with someone with dementia. “I call it the little dance,” says Hardy.
And the steps to this dance?
Hardy calls them align, agree, realign and resolve.
For the first step, you align with whatever the other person is saying, even if they’re talking about someone who’s many years dead. Like partners, you dance side by side. Step two is to agree with them — say, “yes, I remember that” — and the dance moves forward. Step three, if the other person is stuck on a topic, you can realign them to a different subject — this is where the dancers twirl. And finally, Hardy says, you have taken the person with dementia’s mind off of the thing they were adamant about. This, she says, is when the dancers resolve and bow.
Yet Bryan realized that on top of her dementia, her mother was grieving her departed husband — and was powerfully lonely to boot. Bryan floated the idea of a retirement community with assisted living and memory care, but Pulizzi was having none of it. Pulizzi’s grandmother had been in an old-style nursing home where, as Bryan says, people just sat around in wheelchairs drooling. Pulizzi had no vision of retirement communities other than that, and she flatly refused.
But then came the fall.
It was a bad one.
Editor’s note: In the second and final part of this story to be published next week, Jessica Bryan struggles to cope in the aftermath of her mother’s fall. About the author: Corbie Hill is a freelance journalist and editor who lives in Pittsboro with his wife and two daughters. His work has appeared in the News & Observer, INDY Week, No Depression, Our State and a host of other publications. Follow him at Twitter.com/afraidofthebear.