More MS news articles for September 2002

Growing number of caregivers chasing far-flung assistance

Hard-pressed relatives often don't know about or can't seek resources

August 20, 2002 Tuesday
Tricia Bishop
The Baltimore Sun

The Klingelhofers were celebrating the arrival of their hard-won disabled-accessible van last week with a movie in the videocassette recorder and their feet up: Bernadette's on the couch, her husband, David's, on his in-home hospital bed.

David, 39, is in an advanced stage of multiple sclerosis. His first symptom - blurred vision - appeared the day after their wedding. Now, 16 years later, his gall bladder has failed, he is legally blind in one eye, he can't move anything but his head and he has lost his ability to speak.

Bernadette, 41, is his sole caregiver. She spends her days doing for him all the things able people do for themselves. The number of caregivers facing such challenges is growing rapidly across the board, but especially for those caring for older Americans.

"Between '87 and '97, there was a threefold growth - from 7 million to 21 million - in the number of family caregivers caring for people 50 and older," said Gail Hunt, executive director of the National Alliance for Caregiving, citing data gathered by AARP. The rise is expected to continue as baby boomers and their parents age.

But help for hard-pressed caregivers appears to be on the way, in Maryland and across the nation.

Congress is expected to consider a bill called the Lifespan Respite Care Act, which would aid caregivers by providing fill-in care (or funds for it) so they could take a break, which they rarely get.

And last year, the federally funded National Caregivers Support Program began giving grants to state departments of aging for resource improvement and development. The state agencies disseminate the money to county aging offices, which use it as they see fit, often for caregiver education, training and respite time.

Maryland got $2.1 million this year and distributed the money based on county poverty levels and population. Anne Arundel County received $119,611; Baltimore City, $584,236; Baltimore County, $272,590; Carroll County, $38,751; and Howard County, $40,041.

"It's not a lot, but it helps," said Sue Vaeth, senior care manager at the Maryland Department of Aging.

The state also is collecting data on caregiver numbers and their concerns through the Maryland Caregivers Support Coordinating Council, which recently held forums throughout the state. The council, which is made up of community members and human service agency representatives, is expected to make recommendations for support in a report to Gov. Parris N. Glendening due Oct. 1.

Meanwhile, Maryland counties are building caregiver programs of their own, collecting data, distributing relief funds and identifying potential sources of help.

"People have no idea that so much (help) is out there," said Barbara Harris, the public education manager and caregiver coordinator for Howard County's Office on Aging, which estimates that 19,000 caregivers live in the county.

"Of course, we still have a long ways to go, and people still have to rely on their neighbors and communities and churches, but all together, we're making a lot of headway and a big difference in people's lives."

But finding the assistance isn't easy.

Bernadette Klingelhofer writes lots of letters from her apartment in Columbia and sometimes makes as many as 50 calls a day to organizations, trying to find what she says is necessary assistance: money for the new van, adequate housing, realistic rent, a break every now and again, and access to information and programs that recognize her group as a big part of the population.

"It's unbelievable how much help and how much goodness people are able to give us," she said. "But I've had to fight for all of it."

For every Bernadette Klingelhofer, human resource agencies estimate that there are dozens of others - people helping their elderly parents, infirm neighbors, abandoned grandchildren, ill spouses - who aren't getting help because they don't know it's available or because the effort required to reach it is too great.

In testimony before the U.S. Senate last year, Suzanne Mintz, president of the National Family Caregivers Association, attributed the growth in caregivers to the aging population, medical science extending the lives of the chronically and developmentally ill, and health-care policies sending people home from hospitals sooner and still in need of care, which often falls on family members.

Although difficult to track definitively, government and nonprofit sources estimate that between 26 million and 54 million people in the United States - 500,000 in Maryland - provide some type of care for friends, family members or neighbors. If paid, the nation's caregivers would earn nearly $200 billion.

Most caregivers are women, and they often report health problems of their own - back problems, depression, sleeplessness from worry. Klingelhofer has broken ribs trying to move her husband.

Businesses also suffer from the drain on caregivers. A 1997 study by the MetLife insurance company concluded that U.S. employers lose between $11.4 billion and $29 billion per year in workday interruptions, missed days and lost employees who quit to devote their time to giving care.

As another step toward helping caregivers, Howard County held its first Caregiver Fair in May, and Harris has created a database for keeping track of area caregivers.

A Caregiver Resource center is also in the works there, and the county aging office is sponsoring a series of lectures and workshops for caregivers at the Florence Bain Senior Center in Columbia.

"What we're trying to do is to educate people who are giving the care so that they can be more efficient and effective," said Manus J. O'Donnell, director of Citizen Services in Howard County. "And then ... we want to help them find the resources they need to assist them."

O'Donnell points out that caring for family is a time-honored tradition and a generally accepted familial duty, but one that often appears unexpectedly.

Pat Owens of Thurmont never thought she'd be dealing with PTA meetings and teen woes at age 59, but she and her husband had to adopt both their grandchildren after the children's parents could no longer care for them.

"It's been tough, and financially it did put an extra crimp on things," Owens said. "We had to take a second mortgage on the house to take care of everything."

There are 4.5 million children growing up in grandparent-headed houses, according to AARP - a 30 percent increase since 1990.

"There are a range of reasons for that," Owens said. "Divorce, death, some sort of medical or mental illness. But probably the single biggest factor for the increases is because of drug addiction."

Owens, whose 27-year-old daughter has a drug addiction, is chairwoman of a new state program based in Frederick called "Solutions for Children and Caregivers." The group is working to establish a group of lawyers who will offer free advice and service to grandparents trying to gain custody of their grandchildren because of parental neglect.

Without legal custody, which can cost $20,000 to $40,000 to obtain and requires surrendering the child to the courts for a time, it's very difficult to get a child medical attention or enroll him or her in school.

Most school systems have a form that will allow caretakers to register a child under certain conditions.

"We only use it in four circumstances," said Linda Martin, a pupil personnel worker in Howard County, "the parents' death, incarceration, residency in a drug or alcohol rehab facility, or abandonment. And the caretakers have to have documentation to prove it."

Bernadette Klingelhofer said she hopes the recent developments mean the outlook is improving for caregivers, but she won't believe it until she sees it.

"If the ripples don't reach us," she said, "then the rock's too small."

Sources of assistance rising with number of caregivers

As the number of caregivers -- people voluntarily attending to ailing family and friends -- grows, so do the resources available to them.

A good place to start looking for help is with local offices of aging, which can suggest contacts for many caregiving situations.

Other sources include:


800-677-1116; Helps find community assistance for seniors.

Administration on Aging:

202-619-0724; Offers guides, fact sheets and resources for caregivers.

National Family Caregivers Association:

800-896-3650; Offers education, statistics and tips for advocacy.

National Library of Medicine: Links to overview sites and those that address issues such as caring for people with cancer or Alzheimer's disease.

National Alliance for Caregiving:

301-718-8444; Offers tips for caregivers and a list of resources.

Family Caregiver Alliance:

415-434-3388; California-based nonprofit group with an eye on caregiver legislation and public policy.

Maryland Department of Aging:

800-243-3425; Has a number of caregiving resources, along with a 90-page guide for grandparents available online

Maryland Caregivers Support Coordinating Council:

410-767-7323; http://www.dhr. Run by the Maryland Department of Human Resources, the council posts minutes of its meetings on the Web site, along with dates of forthcoming meetings, which are open to the public.

© Copyright 2002 The Baltimore Sun Company