The daughter and mother can't have real conversations anymore, though in a way they have become closer. As her mother's caregiver, Jan Barron has tuned to the frequencies of her 86-year-old mom as she would to a baby. Jan hears her mother in the night and will wake suddenly if her mom has a need. After raising two children, Jan Barron, at 56, had not expected to be a mother again; the job of full-time caregiver comes close.
Barron and her husband, Jim, have arranged their lives around the needs of Jan's mom, Barbara, who is being drawn from our world into a maze of dementia. She no longer understands that some things could hurt her, and she must be watched all the time. Jan can hardly have a five-minute conversation with her husband without her mother interrupting. Barbara will hide food she doesn't want behind chairs or the wood stove, or will fling an orange slice out of sight if she can't finish it. Starting at 5 a.m., Jan's daily schedule is unrelenting. She and Jim could never spontaneously go out for dinner or to Providence for a show or to some friend's barbecue.
Gallery: See more photos of Jan Barron and her mother
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Somehow, Jan and Barbara can still pray together. The words of prayer seem to be imprinted somewhere in Barbara's mind where Alzheimer's and dementia can't reach. Or maybe the Hail Mary has been worn too deeply into her memory for the disease to erase.
To pray, Barbara sat in an overstuffed chair beside a grandfather clock frozen at 16 minutes after five, at home in Jamestown.
"Hail Mary, full of grace, the Lord is with thee. Blessed art thou among women and blessed is the fruit of thy womb, Jesus," Jan began.
With a surprising abruptness, her mother replied on cue, speaking rapidly, without punctuation: "Holy Mary mother of God pray for us sinners now and at the hour of our death amen."
They alternated several times, following the beads of their rosaries. Between verses, Barbara stared. Perhaps she was looking out the large window to a striking view of Narragansett Bay from Jan's home on the Jamestown shore.
Perhaps she was looking at the sky, bright on this cold April morning, or at the small whitecaps driven onshore by the wind. The Jamestown-Verrazzano Bridge arced over the water to the south, in front of the old Jamestown Bridge, in its last days before demolition, looking like the elderly shadow of the younger bridge.
Barbara Haggis exists purely in the moment. Those moments are not recorded in her memory anymore. In 15 minutes she probably would remember nothing of it.
Jan had dressed her mother in a pink jacket, white smock, black pants and sensible tan shoes. Family pictures on the wall nearby told the history of the generations, through periods of long hair and big shirt collars, traveling back in time to Barbara's own wedding in 1942. She raised four daughters with an iron hand, put them through Catholic school, and probably would have preferred to keep them all locked in the house until they turned 21. Her husband, Bill, worked for New England Telephone. He died 20 years ago.
Jan finds it hard to pinpoint when her mother's health began to decline. Around 2000, Barbara stopped cooking for herself. She needed help picking out her clothes. Her four daughters had a family meeting and drew up a schedule so that one of them saw their mother each day. Eventually, Barbara began calling people in the middle of the night. She'd go to bed in the afternoon, wake up rested at midnight, and dial. When she could not reach her daughters, she'd call strangers.
More than a year ago Jan's three sisters told Jan of their perfect plan for their failing mom: Jan would quit her support staff job at the University of Rhode Island, the family would pay her a salary from their mother's savings, and Barbara would move in with Jan and Jim.
She broke the news to her husband. The girls want me to quit my job and take Mom. After a moment of total silence, Jim replied: I told you 33 years ago that I'd agree if it ever came to this, so just go get her. Jan is still awestruck by his response.
Jan sat across from her mother and opened a leather-bound Bible on her lap. "This little story is from Matthew 18, 21-25," she asked her mother. "Jesus is trying to tell us something. Let's see what it is. Hmmm, Mom, this is the story of the unforgiving servant."
Barbara arranged her rosary beads on a TV tray table. She seemed rapt in the task.
"It's fine, Mom; looks fine like that," Jan said. She read the scripture. "Mom? Listen to the end. This is kind of an interesting story. Let's do one from Psalms."
Outside, the wind whipped off the Bay.
"Very good," Barbara said.
"Let's take a sip of our coffee," said Jan. "Can you take one sip? I like for you to have your coffee." Jan has an even, patient voice and often breaks into a cheery, trill laugh.
"One more little thing, do you want to help me make my bed?" Jan asked.
Barbara rose from the chair without help and they made the bed together. "Let's try to get the wrinkles out," Jan said. She tries to keep her mother active in the mornings, to tire her out before the day worker comes to relieve Jan for a few hours. Barbara loves to fold laundry, especially towels. Jan puts a load in the washer every morning so there will be something for Barbara to fold that night.
"I live here," Barbara said.
"Yes, Mom, this is where you live."
"Thank you for having me here," Barbara said. She says those exact words maybe 10 times a day. The words melt Jan, and help to soothe the frustrations of living with an elderly adult who needs constant care. Jan has come to think of those words as a code from God, telling her: Hang in there. They could never manage as Barbara's full-time caregivers, Jan says often, without their faith.
Jan spread a deck of cards, face up, over the kitchen table. "You know what we're going to do?" she told her mother. "We're going to collect them by numbers."
Barbara carefully collected the cards one at a time -- first the aces, then the twos and threes. . . . While her mother was occupied, Jan dashed to the bedroom to grab her things for class and for the gym. Barbara stacked the cards in neat rows, aces through 10s. She had trouble with the face cards.
"Do the king, queen and jack," Jan said.
"Where do I put them?"
"Just line them up: king, queen, jack."
"I'll leave them if you want them there."
"You want to do the chores?"
"I want to watch TV," Barbara said.
"It's too early for TV. Let's try the dominoes." She dumped a box of red dominoes on the table. "Make three big piles, all stacked up."
Jan knows her mother is in decline, yet is determined to "try to bring the person out through the disease" by giving Barbara as many household chores and mental tasks as she can do. Jan wants her mother to feel useful. Sometimes Barbara will simply stop moving and slouch, in the middle of dressing or some other task, shrinking into a physically withdrawn state, as if the disease were pulling her in. Jan tries to pull her out.
Lori Anderson, from Home Instead senior care, arrived at 9:30 a.m. to watch Barbara. Jan will joke that the respite of a few hours is critical to keeping her sanity. There is a little truth in every joke.
Jan drove a half-mile to Potter Cove, a stretch of lawn with a beach of broken clamshells on Jamestown's shore, and parked near a huge barren shrub. A cold wind stung exposed skin, but Jan lowered her window and sat alone in her car in the bright sun. After waking at 5 a.m. to see Jim off to work and to care for her mother, this was time to mentally regroup before her personal finance class at the University of Rhode Island. She drank coffee and thumbed through her textbook.
Early that afternoon, after class and a workout at the gym, Jan came home to find Barbara watching Judge Alex on TV. The case was about a family dispute. Everyone in the family hated each other.
"You know who I am?" Jan asked. "Who am I?"
"I'm your mother."
Jan and Jim try to include Barbara as often as they can when they go out. Sometimes there is no choice, for she cannot be alone. Jan needed to go to BJs to buy groceries. Getting her mother ready was a production. Barbara drifted out of the moment and wandered to the living room. "OK, Mom, why don't you get your bag and your gloves. Mom?"
"Thank you for having me here," Barbara said.
"You're welcome."
Most nights, the three of them sit for a movie from 7 to 9 p.m. They must keep Barbara awake until at least 9 for her to sleep through the night. If not, she'll be up before dawn, fully rested and walking around.
On this night, Jan and Jim got ready for their weekly "date," an evening out that gives them a feeling of freedom. Jan changed into a dinner outfit -- an olive sweater and a dressy black scarf. A friend arrived to watch Jan's mother. Barbara sat at her daughter's kitchen table and strung beads, living the moment.
Your turn: Have you ever cared for an ailing parent or family member?
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