Americans Spend Millions On Caregiving
Many are forced out of their jobs and homes because of the strain to provide for their loved ones

Story from OC Register

Jodee Kalmen drew the caregiving card four years ago.

She was 50 when her husband, Peter, then 57, was diagnosed with frontal lobe dementia. His ever-worsening symptoms had already cost him his job.

She was a stay-at-home mom with two sons but became a school bus driver. They lived off her small salary, his Social Security Disability, the equity in their home.

Today, she is one of 44 million Americans responsible for caregiving a spouse or parent. The backbone of the nation's long-term care system, they represent $375 billion annual value in the care they provide.

But in these hard economic times, a new survey shows caregivers are facing escalating financial and emotional hardships that are rarely, if ever, addressed in national debates about funding health care.

There are statistics, data and websites offering help, but the truth is caregiving is where childcare was years ago, says Sherri Snelling, senior director of Cypress-based Evercare.

Few employers offer benefits. Many adult children are losing their jobs, forcing them to move in or move home parents who were in care institutions. Most caregivers are not prepared for the expense and the emotional drain.

In the next two weeks, we'll look at the data and the solutions, the questions and the few answers.

The Kalmens thought their future was secure.

"My husband and I did everything we were told to do; buy a home, save money for retirement and open college funds for our boys," Jodee Kalmen says. "What they did not tell us was that dementia was going to enter our lives and devour our financial future.

"Besides watching my husband slowly die, I have had to live on pins and needles riding the uncertainty of the economy."

After 21 years in her home, Kalman says she is down to her last financial resource — her husband's IRA, which has been decimated by the declining stock market. She's already refinanced the home three times.

She has no health insurance because she lost her job.

"I am scared," she says.

She's not alone.

A survey conducted by Evercare by UnitedHealthcare and the National Alliance for Caregiving concludes 43 percent of caregivers have taken a pay cut or have been forced to work fewer hours as a result of the recession.

Some have taken on additional job or are able to work more hours, but almost 50 percent told surveyors they have exhausted their savings and 43 percent have had to borrow money to continue caregiving.

"These people are a significant part of our society, yet their economic impact is often unmeasured and, frankly, they are discounted in the view of the public," says Dr. Alan Sokolow, chief medical officer for United Health Care.

The concern is a potential cutback in individual caregiving, he says. Many have said they are cutting back or might be forced to cut back hours spent caregiving because of employment-related demands.

"There needs to be continuing awareness of the importance of providing assistance for caregivers," Sokolow says.

But the facts are these:

•With 30 years added to the average lifespan in the 20th century, most boomers can expect to spend some years as a caregiver for parent or spouse.

•The increasing number of childless women and others without family ties brings new challenges to financing caregiving.

•Caregiving only recently became an employee benefit for some workers; few caregivers are able to access these benefits today.

•64 percent of caregivers are struggling to pay their own bills.

•63 percent have stopped saving for their own retirement or future caregiving.

•36 percent say they have found that government agencies or nonprofit groups are less able to provide services or outside help.

Next: Where caregivers can look for help today, and in the future.