Health & Medicine

Can mom live alone? One family’s struggle with Alzheimer’s

On Meredith Holden Cuffe’s last evening in her own home, her son Rich spent the night to keep watch over her. Meredith, at 87, was living in the same two-story cottage on a wooded hilltop in Placerville that she had moved into with her husband nearly four decades before. But for months, someone always had to spend the night, and Rich, his wife, Linda, his siblings and a niece had been taking turns.

It was early June, and the next morning, mother and son walked through the garden together, admiring the star jasmine, which had burst into bloom. Then, having coordinated their efforts ahead of time, Meredith Cuffe’s family settled her into a pickup truck and tricked her into leaving the home she loved.

Strong-willed but tiny, Meredith had lived alone in the home since her husband, Patrick, died nearly 35 years earlier. But now she was entering the middle to late stages of Alzheimer’s disease, the progressive and incurable brain disorder that affects 5.1 million Americans. Doctors had told her family that she needed 24-hour supervision, and they couldn’t do it anymore. They were exhausted after months of providing care and trying to navigate the paranoia, mood swings and delusions that Alzheimer’s has created in her deteriorating brain.

After long months of debate and planning – and trying to shake off their feelings of guilt – they reluctantly made the choice to place her in permanent care.

They were not at all convinced the day would go well.

After stopping at Rich’s El Dorado Hills home for a break, the family suggested an outing to Carmichael for lunch.

“She said, ‘I want to go home, because there’s somebody in my house,’ ” said Rich, 60, a retired pipe fitter and plumber.

A few seconds later, her anxiety dissolved, momentarily forgotten. She decided she liked the idea of lunch, so she got in her son’s car. They drove instead to Walnut House, an assisted-living center in Carmichael. When they had visited a month earlier, so the staff could meet Meredith and assess her level of dementia, she tartly informed her family that the center was a place for old people, not her.

“You’re a traitor and a liar, and you’re breaking my heart,” she told Rich.

As soon as they pulled up on June 3, the Walnut House staff took over, seating Meredith in the quiet courtyard garden while Rich and Linda took a few of her possessions to her new home, a small private room with a single bed. Meredith was calm but confused.

“I’m not sure what’s going on here,” she told her son.

The center’s director, Tina Barringer, who has spent her career caring for people with dementia, told the Cuffes they should leave. They did, and well into the evening hours, Meredith tried repeatedly to find a way to call the police, because she wanted to go home.

It was not, to Barringer’s experienced eye, an especially hard introduction to permanent care. But for the Cuffe family, it was a wrenching choice at the end of a difficult journey.

“I still feel guilty having to have her go into care,” said Karen Musial, 64, Rich’s older sister, and she broke into tears. “She was good to us all of her life. But we had to do this.”

Two months later, the sadness lingers, but family members also feel relief at having Meredith settled into permanent care. What they didn’t realize was that she would flourish there, too.

A toxic spread

The public generally associates Alzheimer’s with forgetfulness – a gentle decline into dottiness, really – and not with behavior that can seem so erratic as to border on psychosis. But as the toxic plaques and tangles of Alzheimer’s disease proliferate through the brain’s neural pathways, the damage spreads from the hippocampus, where memory is formed and stored, to the frontal lobe, which helps regulate behavior.

The moderate stages of Alzheimer’s can bring agitation, sleeplessness and restlessness, often in the form of wandering. People with Alzheimer’s can have difficulty planning and organizing. They can forget to pay the bills, and forget how to add and subtract. Their judgment suffers. They become paranoid and frightened and express the same concerns over and again. In some cases, their personality transforms: They suffer delusions and hallucinations and can erupt in outbursts of violence.

“The entire brain is affected over time,” said Dr. Shawn Kile, a neurologist with the Sutter Neuroscience Institute Memory Clinic in Sacramento. “Eventually, you’ll get general brain involvement and atrophy. The entire cortex deteriorates.”

Evidence shows, he said, that the use of Alzheimer’s medications such as Aricept and Namenda at the moderate to severe stages of the illness can help tamp down symptoms and make caregiving easier for families. So can antipsychotic medications, if appropriate.

What families tend to do – what the Cuffes did with Meredith for years – is try to talk their loved one out of the delusions, as if reasonable explanation could persuade someone with dementia to ignore what their atrophying brain tells them is real. Professionals suggest families do the opposite: Agree with them, then redirect their attention elsewhere.

“You can be right, or you can be kind,” said Denise Davis, program director for the Alzheimer’s Association in the Sacramento region. “That’s the way I look at it. I can talk to the context of their concern, or I can talk to their feelings.”

When Rich and Linda Cuffe finally began attending an Alzheimer’s Association caregivers’ support group in El Dorado Hills earlier this year, they tried to take that advice to heart. They wanted to keep Meredith happy, and they desperately wanted to keep her in her own home, on her own land, where dawn filters slowly through the treetops and she could live a quiet life.

“We thought we could hold off long enough that she’d pass away at home,” Rich said. “We thought she’d die there, but it doesn’t work that way.

“We waited. And things started happening.”

Center of the clan

For so long, she was the one who held the family together, the stern center of a hardworking, raucous clan.

Rich Cuffe recalls his late father, Patrick, as a loving and affectionate dad, a career pipe fitter, a storyteller who entertained the guys on the construction site, a veteran card player, a heavy drinker. Meredith was far less demonstrative, a devout Catholic and sensible stay-at-home mom raising three boys and two girls in a modest Carmichael neighborhood not far from today’s Mercy San Juan Medical Center complex.

“She had a lot of stuff on her plate,” Rich said.

On Mother’s Day, the extended family would get together at Carmichael Park for a picnic. The kids, including a passel of cousins on their dad’s side of the family, would run through the park while the grown-ups played cards. On Christmas – then and for decades to come – Meredith would cook for hours and gather the clan around her.

“We had a good family life,” Rich said. “My dad had some lean years. If you wanted something, you made money for it. I had a paper route at 12 or 13.”

By age 18, in the early 1970s, Rich was out of the house, starting his own career in construction. And his parents were busy building their dream house in the woods on the edge of Placerville. For a while, they camped on the site, cooking on an open fire and living in a tent.

Meticulously organized, Meredith kept detailed files of receipts from the construction, and she stored family photographs in a clear bin, with the photos tucked into labeled envelopes. Color snapshots show skinny teenage boys with long hair – Rich and his older brother Terry, who died in 2007, and a cousin or two – as they helped their father frame the small house under a brilliant blue sky and a canopy of trees.

And a few years later, here is Patrick Cuffe, sitting on the front steps, pale and emaciated from chemotherapy, struggling to fight the lung cancer that eventually killed him at age 51 in late 1979. He died in a hospital bed set up in the living room of the house he’d built, with his wife tending him until he drew his last breath.

In her early 50s, Meredith Cuffe was a widow. The kids – including a younger brother, Kevin, now 57, who lives in Placerville, and a younger sister, Cassie Ricketts, now 54, who lives in Ohio – were grown. She was alone.

And she thrived. With a handful of friends, she visited art galleries in Placerville and went to shows at the El Dorado Musical Theatre. She attended church every Sunday and volunteered in local politics. She planted a beautiful garden and hiked on her property. She lived frugally on a fixed income, and over the years, she sold 10 acres of the original 15-acre plot to accrue funds for her older age.

“She was independent and self-reliant,” said Linda, 56, a retired state analyst. “She was happy to be living alone.”

Lost and confused

It’s hard for her children to pinpoint exactly when Meredith’s thinking began to deteriorate. By the time she was in her 60s, Rich said, she was sometimes suspicious of strangers, worried that someone would cheat her out of her money or her land. Was that paranoia or prudence?

At 80, Meredith remained energetic – though she adamantly refused to see a doctor – and her thinking was sharp enough for her to pay her bills and manage her own affairs. But within a year or two, it was clear she was slowly losing touch.

She would tell her children that people were taking things from her car, then putting them right back. She installed a floodlight to illuminate the front deck at night, because she thought she could hear people trying to break in. She thought someone was stealing her clothes. She accused Rich, whom she had named executor of her estate several decades ago, of stealing money from her account.

“I’d show her the statement, but she’d call the bank to complain anyway,” Rich said.

“They knew her very well there,” Linda said.

A few years ago, when she started getting past-due notices from the utility companies, she finally allowed Rich to take over paying her bills, but she still believed someone – the bank, her kids, the neighbors – was stealing from her.

Then came the day that she ran her car off a winding road not far from home, and a stranger stopped to help. Meredith was unhurt but rattled, so confused that she couldn’t remember where she lived or how to call her kids. The stranger drove her around for an hour, Rich said, before she could recall how to get home. Then he walked her in and got her settled, leaving a note for the family on her refrigerator.

The siblings told Meredith that the car was in the shop and instead donated it to charity. After that, Karen, who lives nearby in Somerset, took her mother to church every Sunday, and Kevin took her out for groceries and errands. The family visited more often. But the problems snowballed.

When she started leaving stove burners switched on, scorching the pans, the kids turned off the breaker and arranged for Meals on Wheels to deliver lunch every day. When she tried to cancel the meal delivery, Rich called the agency, begging that they ignore her request. When she started drinking more heavily – upping her usual two-beers-a-night intake because she couldn’t remember whether she’d had anything to drink – they bought her non-alcoholic beer.

“Listen, we waited a little too long,” Rich said. “We didn’t have a diagnosis because we couldn’t get her to a doctor. But there were signs.”

One night late last November, deputies from the El Dorado County Sheriff’s Office called Rich at home. They were with his mother, and she was confused. She had dialed 911 to report she was alone in a hotel room, waiting for her husband to come back to their room from a bar down the road. Where was he? It had been hours. She was worried, and she was lost.

She was in her own home the whole time.

The Cuffes understood something had to be done, but didn’t know what to do or where to turn.

A sobering diagnosis

First, they had to shake off their long-standing sense of denial. Rich and Linda started attending a monthly caregivers’ support group the Alzheimer’s Association runs at the El Dorado Hills Senior Center, where the facilitator gently suggested they get their heads out of the sand.

“We’re not telling people to do anything,” Davis said. “We want them to think about it, so they don’t have to react in a crisis. Maybe wandering develops in the person with dementia. Maybe the caregiver has an illness or needs surgery. What does the caregiver do then?”

The Cuffes learned that Meredith’s behavior was in many ways typical for someone with advancing dementia. And they learned that their feelings were shared by other people, too: their exhaustion with the constant demands of caregiving; their fear of being judged by others for not knowing how to cope with Meredith; their guilt over starting to consider placing her in a facility.

In practical terms, one of the most valuable things the Cuffes learned from the support group was that they should get Meredith’s power-of-attorney documents in order before she was diagnosed with dementia, or they would have difficulty making decisions on her behalf.

A week before Christmas, they took her to her primary care physician at Kaiser Permanente’s Folsom offices to begin the diagnostic process.

“A couple of years ago, you wouldn’t even have gotten her into the car,” Linda said. “We were nervous. We didn’t know if she’d balk. We distracted her with conversation on the way down. Then Rich took care of the copay while I walked her down the hall to look at the pictures on the wall. She likes artwork. I tried to keep her relaxed.”

After administering a brief memory test, the doctor referred Meredith for a neurology appointment, including a brain MRI and a thorough evaluation of her mental status. By March 21, she was diagnosed with Alzheimer’s dementia. She needed 24-hour care and supervision, the doctor told them.

“When you hear it from a medical professional, it gets you in the gut,” Linda said. “You know you can’t have denial. It was sobering.”

Family members stepped up their caregiving, staying in the hilltop cottage with Meredith every night. For a time, until Meredith’s mood swings wore her down, Karen’s 40-year-old daughter provided round-the-clock supervision.

Some days, when the kids saw her, she was serene, humming as she did the dishes, content to spend time with her family: Maybe, they hoped, they could keep her in her home, after all. On other days, she was angry and suspicious, accusing them of stealing, lashing out, demanding they leave her property.

On several occasions, Meredith sat in her living room and told Rich and Linda she wanted to go home. They would walk her around the house to reassure her. Here was the wood-burning stove that Dad installed so long ago. Here was the steep stairway to her bedroom. Here were the shelves filled with framed pictures of her smiling children and grandchildren.

Five minutes later, she’d ask again when she could go home.

“We did 24-hour shifts, and you get worn out. I get anxious, and I’d lose sleep,” Rich said. “And you have guilt. But we realized this was borderline neglect. We couldn’t have her continue living there.”

So he spent the spring evaluating permanent care options, first in El Dorado County, then Sacramento. He learned of a pilot program available in Sacramento County through the California Department of Health Care Services to help Medi-Cal recipients pay for assisted living. Without that waiver, which in some cases cuts assisted-living costs in half, a care home could have cost Meredith $3,000 a month or more. And they would have had to sell her home to pay for it.

The burden lifts

Over several months, the Cuffes visited small board-and-care homes and larger assisted-living centers – probably 20 residences in all, said Rich, who documented the search in an impressive stack of manila folders in his home office.

They had to get Meredith qualified for Medi-Cal, which she’d never had, so she could request the assisted-living waiver. They had to have her screened for tuberculosis and assessed for the level of help she would need with basic activities of daily living, such as dressing and eating. Rich made call after call to the social worker on Kaiser’s memory care team, the Area 4 Agency on Aging director in El Dorado County and the caregivers’ support group leaders, trying to figure out how to put the pieces together.

It was a long, difficult spring.

“You look at places and get depressed, and you stop,” Rich said. “And then you think, ‘We’ve got to push ourselves.’ ”

They visited Walnut House, an older, low-slung facility on Walnut Avenue, three times before they decided to place Meredith there. They worried that with its almost 90 residents it would overwhelm a loner like Meredith, who had been happy on her own for so long. But they liked the fact that residents didn’t sit in their rooms: They were up and making their way through the hallways, encouraged by the center’s enthusiastic activity director, Monica Amaro, to participate in bingo games and birthday parties.

And so the time came. On June 3, they dropped Meredith off. On Barringer’s advice, they waited a few weeks to visit her: Otherwise, Barringer told them, they’d be disrupting Meredith’s new routine and making her think she was going back to her home.

“You have to give them time,” Barringer said. “You keep them busy. You invite them to activities. They can be resistant. We’ve taken everything from them, and now we tell them when to eat and when to get up. For some of them, it’s a rough road.”

With Meredith placed, the family took a deep breath. Wisps of guilt lingered, but they realized they’d feel a lot more guilty if something happened to her all alone up in the hills at her house. For the most part, Rich said, he felt unburdened. They worried about Meredith feeling abandoned – but they also worried that she’d be so difficult to deal with that Walnut House would send her home.

In emails back and forth to Barringer, they learned that Meredith was adjusting to her new routine. She started attending Catholic services once a week at the center, and she ate meals with the same tablemates every day. Rich and Linda stopped by one day at lunchtime to drop off clothes in Meredith’s closet, and they watched her through the dining room window. She was chatting with her dining table friends, Rich said; she seemed more relaxed than she had at home.

She has good days and bad days, of course. She can grow anxious and worried. Sometimes, she’ll wonder why her car isn’t in the parking lot; sometimes, she asks to go home. But even Meredith’s moody days don’t seem all that difficult, Barringer said.

To the Cuffes’ surprise, Meredith again has thrived, attending a chair-exercise class every morning and getting to know fellow residents. She likes the food. She likes the staff, too, and she cheerfully introduces herself to them all over again every time she sees them.

Their own sense of relief has taken them by surprise, too – the relief of knowing that she is cared for, safe and comfortable.

“Some people really feel they’re letting their loved ones down,” Rich said. “I tell them, ‘You won’t believe the relief I’ve had.’ All the things I worried about, people with dementia don’t think like that. They can’t remember if they’re angry. You overthink it.

“Now I think, ‘Wow, why didn’t we do this earlier?’ ”

During Meredith Cuffe’s brief residence at Walnut House, her children have gradually filled her room with some of her favorite possessions. There’s a crucifix over her narrow bed, a comfortable rocker in one corner, a framed childhood silhouette of her youngest son on the wall near the sliding glass door into the courtyard. The bed is neatly covered by a quilt pieced together by Meredith’s sister Dorothy, who still lives in North Dakota, where they were born.

Meredith, energetic as always, still makes her bed every morning.

“Of course!” she said. “I had five kids.”

Visiting for a few hours on a warm and cloudy July day, Rich and Linda were pleased to find her in an upbeat mood.

“I wouldn’t think of moving,” she told them. “I’ve lived here for years. The one problem is, I can’t find my checkbook. I think somebody took it home with them. That’s what I think.”

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