Caregiver’s anguish: ‘I need to be 2 people’

No! No! Don’t leave me here. I want to go home, she implored.

The decision to place her mother in assisted living had been gut-wrenching, but Beckett knew it was time. Increasingly disoriented, her mother started forgetting the location of her apartment. She repeatedly visited the front desk for assistance. It wasn’t safe.

Beckett tried to comfort her mom, telling her she’d make friends.

But she didn’t have much time. She needed to get home to nurse her newborn baby. It had been 12 hours since her last breast-feeding.

She stood for a moment, caught between the desperate needs of her family: an ailing parent terrified of her new surroundings and an infant who needed her to survive.

She wrenched herself away from her mother.

“I love you, Mom,” Beckett said, crying. “And I will see you soon.”

Beckett didn’t realize it at the time, but that awful moment in 2007 epitomized the travails of what some experts have dubbed “the sandwich generation” — those responsible for taking care of aging parents and rearing children at the same time.

More than 24 million Americans now wrestle with double-duty care-giving, according to the National Alliance of Caregiving. The trend has quickened because Americans are living longer and couples are having children later.

That has put Generation X moms such as Beckett, 42, into responsibilities they hadn’t planned for and changed the trajectory of their careers, family life and mobility.

Beckett worked in marketing and sales and once considered herself a career woman. But she quit working completely when her job was eliminated 18 months ago.

Between her mom, who is now 75, and her kids, she couldn’t do it all.

“Some days it was the kids, sometimes my mom,” she said. “I felt like I was at the max of what any person could do.”

Demands at every turn

Beckett grew up in east Cobb, attended the University of Georgia and got married in 1997. Raising a family was intended to be an interlude in her career.

She settled in an established, east Cobb neighborhood with spacious, comfortable homes that was less than a mile from the neighborhood where she grew up.

Open with emotions, she can cry easily when talking about her mom. And she’s affectionate. She embraces her mom every time she visits — as well as the staff at her mother’s assisted living home — and hugs her kids often.

She tries to compartmentalize the demands of home life and those of her mother. When she’s with her family, she focuses on the moment, and relishes their moments together: lacrosse games, playing in the backyard, going on annual beach vacations.

Her typical day begins at about 6 a.m. In the early morning, she prepares breakfast, tosses a load of clothes in the washing machine and cleans the kitchen. Her two older children, Will, 12, and Luke, 9, catch the bus to school before she drives her youngest, Faith, 5, to preschool.

Then she runs errands, sometimes buying clothes for her mom. At 11 a.m., she visits her mother and helps her eat lunch. At 12:30 p.m., she picks up daughter Faith. At 1 p.m., she folds laundry and gets dinner started.

She makes time to play with Faith and squeezes in time to pay her mom’s bills.

Afternoons she helps with the boys’ homework or drives them to after-school activities.

Then it’s dinner, bath time, reading time and bed time for the younger kids at 8:30. Will, the oldest, goes to bed closer to 10.

But even when playing with her kids in the backyard, panic can set in.

“I’ll suddenly remember that I left my cellphone in the car and then I run to go get it, and there’s seven missed calls from my mom,” she said.

The mix of sadness and concern never really goes away. It’s always there hovering. It can swoop down at any moment.

On a recent afternoon, she learned that her mother had fallen out of her wheelchair at her assisted living home. Her mom was OK, the center told her, but her mom’s blood pressure was low.

She couldn’t rush to her mother’s side because she needed to pick up son Will at school. He was waiting for her. Her husband, Bryan, was away on business.

“It was like, ‘Here’s this feeling again: I need to be two people to be where I need to be.’”

Never saw it coming

Beckett’s mother, Beverly Gaines, is now in the advanced stages of Alzheimer’s and living at Sunrise Senior Living in east Cobb. She’s lived with the disease for about eight years.

Red-headed and feisty, she used to be strong and independent. She adopted her only child, Beckett, after losing a baby after birth. She played tennis, traveled the world, and ultimately became “super grandma” to Beckett’s own children, hosting sleep-overs for her first-born grandson, Will.

Gaines never saw herself slipping away.

As her health declined, she got lost driving to familiar places such as her neighborhood Publix, and was confused by simple things such as ordering off a menu. She worried incessantly.

She’d call her daughter 20 or more times a day, asking the same questions: “Where is my money? My house? My car?”

Gaines was arrested for shoplifting. She was convinced she had a job completing surveys on the Internet. She ordered dozens of magazines — they piled high in her bedroom, some in Spanish.

“It felt like moving mountains,” said Beckett. “Every time one mountain moved, another took its place.”

No matter how well she learned to juggle her mother’s needs and those of her children, something often seemed to throw her for a loop.

Once when she took her mom to the dermatologist to examine a suspicious spot on her fair skin, she planned ahead. She made the appointment in the morning when her sons were at school. She packed lollipops — for her daughter and mom. And then, while meeting with the dermatologist, her phone rang from her son Will’s school. He was sick. She needed to pick him up. Her husband was out of town on business.

“It worked OK in the end but there was this overwhelming feeling of being torn,” she said.

Within a month of being at the assisted living facility in 2007, Beckett’s mother was moved to the memory care unit. It didn’t go well. Gaines was more highly functioning than other residents; she was miserable.

In early 2012, she moved to another memory care unit — her seventh move in seven years.

“My mom was always there for me,” said Beckett, crying as she talked about the bond she has with her mother. “She did everything for me.”

Beckett said she feels an extra burden because she is an only child, and her father is now dead.

“It’s now my turn to take care of her,” she said. “But it’s hard because no matter what you do, she won’t get better. All I can do is help her be safe and comfortable.”

Unique challenges

Brian Carpenter, a family psychology professor at Washington University in St. Louis, said adult child caregivers for parents with Alzheimer’s face unique challenges.

The disease itself is hard to bear: Alzheimer’s is a long, slow decline without any hope of recovery. It can be excruciating to watch a once-alert person lose their ability to make decisions.

The behavior can also be erratic and unpredictable. A person with the disease might wander, leave the stove on, obsess over little things.

A person with Alzheimer’s may eventually lose the ability to recognize their children.

“Even the children we see that are doing wonderful jobs [taking care of their parents], there’s this feeling they aren’t doing enough, or they have feelings of inadequacy,” said Janet Cellar, an advanced practice nurse at Emory Alzheimer’s Disease Research Center. “You are being pulled in nine different directions. How do you prioritize that?”

For years, Beckett coped with daily levels of stress many people feel only occasionally.

Not surprisingly, mothers in the sandwich generation — between the ages of 35 and 54 — feel more stress than any other age group, according to the American Psychological Association’s 2007 Stress in America survey. And while nearly two-in-five men and women in this age group feel overextended, the survey reported that more women than men experience extreme stress and say they manage their stress poorly.

“For years, I didn’t feel like a regular person, but it gradually gets better,” Beckett said.

In some ways, her mom’s financial resources eased her mind. Gaines has long-term care insurance. And with the sale of her mother’s house, Beckett is able to cover the cost of memory care at Sunrise.

Beckett spends about $6,000 a month for all her mother’s needs. But just keeping up with the paperwork is like a part-time job, she said.

‘Consider it all joy’

Over time, Beckett learned to triage problems among her children and mother, and tackle the most urgent first. She adopted a daily mantra: “It’s time to put on your big girl panties and deal with it.”

Then she often recites a biblical verse, James 1:2, “Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance.”

When her dad was dying, something her mother said stuck with her.

“I remember she said, ‘God never said there wouldn’t be suffering.’”

She learned about Alzheimer’s support groups and found Alzheimer’s message boards. She posted questions.

How do you pay your parents’ bills? How do you get a loved one to move into an assisted living home if they don’t want to go? How do I get my mom to take medications when she won’t acknowledge she has a memory problem?

Beckett learned about “therapeutic lying” from the message boards. She realized lying can sometimes be useful. To get her mom out of her house and into an independent living apartment, Beckett told her that she and her husband wanted to move into it.

They staged a recall of her car to get her to turn over the keys. Beckett told her she got a call from the dealer: the engine might catch on fire; it was not safe to drive.

Her mother accepted it.

“Part of me felt a tinge of guilt, but I also had this feeling like, ‘We did it.’”

She also realized she didn’t have to pick up the phone every time her mother called. Her mom called her at least 20 times a day.

“Over and over, it was: ‘Where is my money? Who stole my money?’” said Beckett.

She instructed the assisted living home to hold her mom’s bills and then she started paying them.

Beckett obtained durable power of attorney over her mother’s affairs. And she hired a geriatric care manager to help her. The geriatric manager ensured her mom’s medications were refilled, that she was being well taken care of.

Recently, she’s become more involved in advocacy. She went to the state Capitol last year to encourage more funding for Alzheimer’s research and passed out DVDs about her mom and Alzheimer’s to legislators. She also led a team of “Mimi’s Memory Makers” in the Walk to End Alzheimer’s event in October, raising $9,000 for the cause.

“It helps me feel like I am doing something positive,” she said.

Beckett has also learned to rely on her husband for support. He travels for business two to three days a week, but when he’s home, he’s hands on — helping the kids with homework, reading bedtime stories to Faith, helping coach his sons’ lacrosse teams.

And when Beckett is having a bad day, her husband Bryan will go with her to visit her mom.

“You are doing a great job,” he tells his wife.

He’s also a good listener.

“Tell me what it feels like,” he asks her.

And he reassures her.

“You are doing everything you can for her. Your mom is lucky to have you as a daughter.”

Hospice care begins

Eight years into the disease, the end is near for Gaines. And while it’s easier in many ways to care for her failing mom, it’s also harder emotionally.

Her mother has begun hospice care at Sunrise.

On a recent morning, Beckett brushed her mother’s hair. Beckett’s mother still gets her hair done every week. “Do you know how pretty your hair looks?” said Beckett. “Your hair looks so good.”

Gaines can no longer talk clearly but occasionally says a few words. She needs a wheelchair to move, and needs help feeding herself.

Gaines, leaning toward her left side, closed her eyes and appeared to drift off to sleep.

But suddenly, her hazel eyes opened. At first, her stare seemed distant, vacant. But then she smiled suddenly and looked her daughter in the eye, saying her name.

Beckett cradled her mother’s small hand. Her mom was having a good day.

“I love you, Mom,” Beckett said. “I love you. ... I love you.”

When a nurse entered to examine Gaines, Beckett told her mom she needed to let go of her hand for a moment. But Gaines held her hand tightly all the same.

Beckett still shops for her mom regularly. On this morning, her mom was clad in an outfit Beckett picked out — a matching khaki-and-white ensemble from Talbots. Until recently, her mom would always check the labels.

Beckett knows her mom is dying, and that her time will come soon.

Lately, she’s looking for one more outfit, her last. She knows how much her mom cares about what she wears.

She goes to Macy’s, Talbots, Ann Taylor. Nothing seems quite right — or pretty enough.

FAST FACTS

● 5.3 million Americans are living with the Alzheimer’s disease. More than half of all Americans know someone living with Alzheimer’s.

● Almost 30 percent of Americans have a family member with the disease.

● Two-thirds of the people over 65 who have Alzheimer’s are women. And among the 11.2 million Alzheimer’s and dementia caregivers in the United States, 60 percent are women. That is equal to 10 million women who either have Alzheimer’s or are caring for someone with the disease.

● One-third of female Alzheimer’s and dementia caregivers are part of the “sandwich generation,” which means they are raising children at the same time.

Source: Alzheimer’s Association’s Georgia Chapter

TIPS FOR DUAL CAREGIVERS

Take some time out for yourself: It’s easier to take care of other people when you are eating well, getting enough rest and regularly carving out some time to do something fun, such as yoga or gardening.

Connect with resources: Join a support group (www.alz.org/georgia for a list of support groups). Join a message board on ALZ.org (note: The Alzheimer’s Association has a new message board www.alzconnected.org that combines message boards with social media, which allows people to make Facebook-like connections).

Say yes to help: The next time you are in the grocery store and a friend offers to help, don’t politely pass. Accept the offer.