The Burden of Caring for Elderly Parents

June 25, 2007 — -- First you get phone calls that seem kind of strange. Mom is quitting her bridge club because "they think I'm stealing from them."

A week later, she mentions an old boyfriend from the war who's coming to take her to dinner. You think, OK, it could be true.

Then the police call from her house. "Your mom thinks there's someone hiding under her bed."

Now you know. The forgetfulness, the fantasies, are dementia, Alzheimer's, something like that. Your sister suspects the worst.

This isn't just the story of one petite brunette wtih terrific legs who was called "Shorty" by her husband, granddaughters and daughters, including me.

This is the story of millions of Americans caring for elderly parents and maneuvering in the murky worlds of medicine, law, hospitals, nursing homes, guilt, fear and family ties.

A USA TODAY/ABC News/Gallup Poll of baby boomers finds that 41 percent who have a living parent are providing care for them -- either financial help, personal care or both -- and 8 percent of boomers say their parents have moved in with them.

Of those who are not caring for an aging parent, 37 percent say they expect to do so in the future. About half say they're concerned about being able to provide such care.

It's estimated that 34 million Americans serve as unpaid caregivers for other adults, usually elderly relatives, and that they spend an average 21 hours a week helping out, according to a study being released today by AARP. Millions more grown children are calling regularly, flying into town every few weeks or months or just stopping by to take Mom or Dad to the doctor.

Among boomers who are helping their parents, 89 percent say the responsibility is only a "minor sacrifice" or "no sacrifice at all," according to the USA TODAY poll. But as their elderly parents get older, some boomers are beginning to worry they won't be able to care for them in the future.

AARP estimates that the economic impact of this "free" care was about $350 billion in 2006. That's more than the U.S. government spent on Medicare in 2005. It exceeded the size of the federal budget deficit in 2006.

AARP estimates that unpaid caregivers who contribute financially spend an average of $2,400 a year on care. Those who put in more than 40 hours a week spend much more: an average of $3,888 of their own money each year, AARP says. But when a parent actually moves into the children's home, the total cost isn't really added up. Families pay and pay and pay, emotionally and financially.

The typical unpaid caregiver is a 46-year-old woman who works outside the home while taking care of a relative, according to AARP. That burden forces her to cut the hours she works at her regular job by about 41%, causing her salary and benefits to fall sharply.

The National Alliance for Caregiving (NAC) estimates that $659,000 per person is lost in pensions, Social Security benefits and wages as adult children -- mainly women -- take time off from work to care for their parents.

The physical toll can be severe, too. Caregivers report having one or more chronic conditions, such as high blood pressure, at nearly twice the rate of all Americans. Of those who say their health has worsened because of caregiving, 91 percent report depression.

Caring for elderly parents also can threaten the emotional health of caregivers and their families. Being the "parent of your parent" can unlock your family's hidden dysfunctions -- "You were always Mom's favorite!" -- and reopen old sibling rivalries and conflicts: "You're trying to kill our father!"

If you never really got along with your parents or your siblings, it can be even more stressful. Elder care can exhaust and sometimes demoralize the caregiver who's on the front line. And it can frighten and confuse elderly parents.

"My dad was never a gentle soul when we were growing up; he was a military guy," says Nia Wilson, a lawyer with the state of Pennsylvania. "His kids were additional troops he had to keep in check."

Now she spends most weekends driving about five hours from Harrisburg, Pa., to Washington, D.C., where her 84-year-old mother is caring for her 90-year-old father, who has Alzheimer's. Her two brothers live nearby but don't help much, Wilson says.

"They think they help, but not as much as I would like," she says with a sigh.

In most families, women -- daughters or daughters-in-law, aunts or nieces -- typically assume the burden of care, according to the NAC. Wilson says her parents want to stay in their home, even though they probably belong in an assisted-living facility, she thinks.

"We keep raising the idea with Mom," Wilson says. "But she says, 'Don't worry about me. I'm OK.' "

Starting to Take Over

After a second midnight call from the police, the sergeant tells my sister: "You all need to do something about your mom." But what?

A plane trip back home to Louisville, and we face her: "Shorty, you have to see the doctor. We've made an appointment. Let's go."

She smiles and nods.

The next thing we know, the skittish 75-year-old woman has sneaked out of the front door and scampered across the street to a neighbor's house. We find her hiding -- literally hiding from her daughters -- behind a tree in Mr. Trinkle's backyard.

She's frightened by what she senses is happening to her. On some level, she realizes she's losing her ability to think and reason. But right now, she's afraid of what might happen to her. She's afraid she'll be taken from her home and placed in a nursing home.

So she runs. What now?

A friend suggests calling in a man. "Women of that era will do what a man tells them," she says.

I call my ex-husband, a man Shorty has known since he was 8 years old. "Put on a suit and tie and bring the Mercedes over," I tell him. "Shorty will go to the doctor with you."

He does. He talks her out from behind the tree and into the front seat of the big car. "Can I go, too, Mom?" I ask, tentatively.

Shorty talks only to John: "Tell her she can come, but she has to sit in the back seat."

Starting to take over for your parents can be one of the most distressing experiences of a lifetime. "It's so much more difficult, because they are our parents; we are the children," says Julie Lucero of Vacaville, Calif.

For the past two years, Lucero's 79-year-old father, Edward, has been living in her home with her three children.

"Right now," she says, "we're fighting about his driving. Not out of malice, but because I know it's better for everyone if he doesn't drive anymore. Heaven forbid if he injures himself or someone else."

Her father, who has had some fender benders and mistakenly parked in the wrong driveway, disagrees. "They can take away my driver's license, but I'm still driving," he declares.

After Shorty had been driving fairly cluelessly for two years or so, we hid her keys. Her dementia had progressed to the point that she didn't remember that she couldn't find the keys. She had been a widow for 25 years; driving was vital to her.

A battle over keys can be the first struggle between elderly parent and child. "It's my responsibility now," Lucero says. "I have to decide."

Obtaining Legal Rights

One trip to a gerontologist with Shorty confirms what we suspected.

"Your mother is very charming," the young doctor says. "She even flirted with me. But she really doesn't know what's going on." She couldn't tell time or count change. She didn't know who the president was. She didn't know what day it was.

The doctor prescribes an anti-psychotic drug to help with the voices in her head. He checks her into a psychiatric ward for four days, primarily to give my sister and me time to figure out what to do.

"She can't live alone," he says. "She needs 24-hour care."

So we begin the trek across town to assisted-living facilities and nursing homes. Both of us are single working women, so taking Shorty into either home isn't an option.

Some facilities we see are elegant replicas of colonial homes with oriental rugs and cherry wood furniture. Lovely, but we realize she likely needs more medical care than those retirement homes could provide. (We suspect they were decorated more to please the adult children than the residents.)

Other facilities are starker, more medicinal. In one, a man was screaming. Shaken, we go home.

We try in-home care. But Shorty keeps firing people. We try her former house maid of 30 years, a woman who was 78 herself. She stays about five days, until Shorty throws her clothes out an upstairs window, yelling, "Get your —- out of here!"

We try an apartment at an assisted-living condo. Shorty calls a taxi three days later and has herself taken home. She lives at home alone for another year, with my sister stopping by each day after work to check on her. Very stressful.

Finally, we have her committed. We get a lawyer, take her to court and have her declared incompetent.

We sit across from a jury and testify against our own mother. My sister is named her guardian. We check her into a nursing home with an Alzheimer's wing. That means the doors are locked.

"You're doing the right thing," the lawyer says.

Maybe, but we feel terrible.

Ray Payton knows the feeling.

She had to go to court to have her grandmother declared incompetent. Now she must file forms with the court every six months to prove she's not wasting or stealing her grandmother's money.

"I'm the legal guardian of my grandmother, who has dementia," says Payton, 35, whose parents are deceased. "I thought, 'How could me, a grandchild, take her to court so I could pay her bills?'

"I felt like I was being a bad granddaughter."

Straining a Family

Every rivalry you had with your brothers and sisters, every argument you had with your parents, every effort you ever made to become independent can be put to the test once your parents become old and sick.

You find yourself arguing with your siblings, arguing with your spouse, arguing with your parents, arguing with yourself.

"The No. 1 thing you'll fight about is money," says David Horgan, a producer of TV commercials from Ludlow, Mass. His 69-year-old mother-in-law moved in with him and his wife, Julie, and three kids about three years ago.

"We fight about Grandma a lot. My wife will say: 'What do you want me to do? It's my mother!' And it goes back and forth, and then it escalates. As a good daughter, she always feels guilty, and I always come out the bad guy."

They've spent thousands of dollars on a new air-conditioning system for their home because of his mother-in-law's lung problems. He loves and admires her but feels crowded in his own home.

"The toughest thing is that she is a beautiful woman, the kindest and nicest person," he says. "She'd do anything for you. But as soon as you live on top of each other, it's hard."

Lucero has nine half-siblings. Her father, who divorced her mother when Lucero was young, lived with one son for two years. He has only Social Security and some veteran's benefits, about $600 a month. No savings. He can't afford a nursing home or an assisted-living facility.

She wishes his other children would help more. "It was my choice to take him on, but now that he lives with me, they say, 'Oh, Julie's got it covered.' "

In my mom's case, one daughter lives near Shorty, the other — me — lives hundreds of miles away. So the nearest sister gets the burden of visiting every week, often twice. She's saddled with the emergency runs to the hospital and trips to the doctor's office.

The faraway sister spends thousands of dollars on plane tickets and rental cars and buys most of her mother's clothes and necessities. She spends money to keep up her mother's house, so we can sell it. She spends money because she's not there to help, and she feels guilty about everything.

Shorty's money starts draining away, faster and faster. Nursing home care is $60,000 a year. After a few years, her savings are nearly gone. So we sell the house and most of her stuff. We divide the valuable and sentimental things. I ship home my new antiques.

We realize we've done exactly what Shorty feared that day she ran across the street and hid behind the tree: We've sold her belongings, taken her rights and put her in a nursing home.

In our minds, we know we did the right thing. But we feel terrible.

Epilogue: Evelyn Fetterman died in February at age 84. She had been living in assisted living or a nursing home for 10 years. Her daughters are sad and tired. They miss their mom the way she used to be. They're relieved that it's all over. And for that, they feel terrible.