Preparation is Key to Caregiving
As a membership coordinator for a healthcare organization, Christy Stretz knew more than most people about caregiving. But when her father died suddenly of heart failure, her life still turned into a trying, six-month struggle to get her Alzheimer's-stricken mother stabilized in a psychiatric facility and then resettled in an assisted living center.
By contrast, Barbara Glickstein, a public health nurse living in New York, had a far easier time with her octogenarian parents when her dad needed surgery for a melanoma and her mother showed early signs of dementia. Although they live in Florida, Glickstein managed the process through phone calls, visits and letters in a way that enabled her family to adapt to long-term care strategies.
Where Stretz was unprepared for what would happen, Glickstein's experience shows how planning and communication can ease the transition to caregiving that is facing tens of millions of Americans. The new health reform bill offers broad support in some areas, but the outcome for each family will still depend largely on how well prepared they are for what lies ahead. Knowing what to expect from family, government benefits and social service agencies is key to coping.
Forty-four million Americans already act as unpaid caregivers for a family member over 50, and the number will rise sharply as 77 million boomers drift into their retirement years. Until now, most caregivers have had to fend for themselves because no social support existed beyond the limited benefits of Medicare, Social Security and Medicaid. The new law adds benefits that will go a long way towards providing more support.
For example, it closes the “doughnut hole" in the current Medicare drug benefit and gives more families access to health insurance. The Patient Protection and Affordable Care Act also contains the Community Living Assistance Services and Supports (CLASS) Act, to help pay for home-based care.
Boomers will benefit from a voluntary long-term care insurance plan funded by payroll deductions. Benefits will kick in five years after coverage commences. Enrollees could receive as much as $150 per day if they are too disabled to perform normal activities like eating and bathing. Money can be used for transportation, respite and adult day care, home health aides, and equipment such as wheelchairs and safety rails.
"Your CLASS benefit could be used in conjunction with the Medicaid benefit so you wouldn’t have to spend down all your assets," said Nora Super, AARP director of Federal Government Relations. "It would provide a basic framework for long term care insurance, together with private insurance, and offer peace of mind. Most people have no savings for long-term care, and so many boomers are going into retirement age. We know that caregivers provide so much support. They can use some of these funds for transportation, respite and adult day care."
The legislation also includes other programs to keep disabled people at home and out of nursing homes such as the Community Choice Option, which will provide federal matching funds to states for home-based nursing care, strengthening Medicaid community-based supports and beefing-up funding for Aging and Disability Resource Centers.
Getting Ready
However, as the experiences of Stretz and Glickstein's show, there are simple steps that families can take in advance to ease the personal stress of caregiving, particularly as brothers and sisters try to make big decisions in a hurry. Disagreements over her mother's condition caused a rift in Stretz's family. "I think what took me by surprise was the collateral damage it caused between me and my siblings," she said.
Health experts and caregivers interviewed for this story offered tips for others:
1. Acknowledge that you're a caregiver. "As soon as you start helping another person, you are a caregiver," said Donna Schempp, program director of the San Francisco-based Family Caregiver Alliance. "Realize that others have been in your position and that there are resources out there. You don't have to make it up by yourself. Adult children of aging parents need to connect to other people."
2. Take care of yourself physically and emotionally. Multiple studies have shown that caregiving can take a toll on the health of the caregiver as well. "I think my dad just didn't know what to do," said Stretz. "He was of that generation; it was his burden to bear. They say that the caregiver dies first."
3. Check up on parents' physical and cognitive state. According to Schempp, it is important to understand the real issues involved in your family member's medical conditions and what to expect down the road.
4. Get legal and medical paperwork in place. Glickstein advises putting one's name on HIPPA forms before relatives get sick. Otherwise, doctors are not legally required to release information. She got her parents to sign a healthcare proxy, as well as living will forms in advance. A lawyer isn't always necessary, according to Glickstein, as every state has forms available. But expert guidance never hurts.
5. Determining who has access to funds, and make decisions about how money will be spent. Talking to a professional, whether an estate planning attorney to evaluate finances or senior social worker case manager, can help determine whether parents qualify for financial aid.
6. Have conversations about values. "How do you want to age?” asks Schempp. “What do you want for healthcare? If I had one fondest wish, it is that people would have all that stuff done." Glickstein agrees, saying. "If you ask an older person, 99 percent of the time they will feel better that they've talked about their wishes to an adult child."
7. Let family members talk about their feelings. Before trying to solve problems, listen to others. Set a formal agenda, and take notes. At the close of meetings, make sure family members have assignments for tasks and next steps. It may be that two meetings are best; one with family members to hash matters out in advance, then another with the ill family member present.
8. Build your caregiving team. While some family members may participate more than others, neighbors and professionals can fill the gap. Glickstein recalled that she visited her parents as a team with her brother. "However much time you spend with your adult siblings, these moments in your life are an incredibly bonding experience," Glickstein said. Two other siblings were not available to go to Florida, but Glickstein said that it helps not to keep score.
9. Strengthen ties with parents. "I have been asking my mom to write down what she remembers," said Glickstein. "I have been asking her to [write a] journal about her life. I bring a Flip video camera, trying to get them to share their experiences. It takes the whole pressure away from their illness. It reminds them that they are very much alive with a history."
Sandwiched, Without Bread
A difficult economy has sapped stock portfolios and home values, as well as eroded state and local budgets for social programs. A June 2009 brief by the Urban Institute notes that 37 percent of Americans born between 1941 and 1965 don't own any stocks at all. Census data relfects a bifurcation in income and assets along ethnic lines.
Half of the 3,505 working caregivers surveyed in 2009 by the National Alliance for Caregiving and United Healthcare said that they felt less comfortable taking time off work, and three in 10 caregivers said that they had to work extra hours or take on an extra job.
Four in ten caregivers surveyed said they had their work hours or pay cut, and one in six said they had lost their jobs because of the recession. Thirteen percent of people said that they have to spend more on caregiving expenses. Six out of ten who increased their caregiving spending had trouble paying for their own expenses.
According to the National Women's Health Information Center, 61 percent of caregivers are women. Most are middle-aged, and 13 percent are 65 or older themselves. About three in five of informal caregivers work while caring for someone else. Due to caregiving, half of employed women came to work later, left early or worked fewer hours. And taking time from work for caregiving can reduce lifetime earnings, savings, access to pension benefits, and Social Security retirement benefits.
Checking Resources
A "checkup" offered by the National Council on Aging Benefits can help determine eligibility for public and state assistance programs. People assume Medicare will cover their needs as they age, but while Medicare covers hospitalizations or skilled nursing care, it doesn't pay for long term care support. Medicaid pays for some long-term care costs such as nursing homes, but not assisted living. And Medicaid benefits vary by state.
Websites such as the Administration on Aging's Eldercare Locator and the Family Caregiver Alliance have databases of publicly funded programs. Disease specific organizations, like the Alzheimer's Association and religiously based organizations, such as Catholic Charities, Little Brothers of the Elderly or Jewish Family Services provide help across denominational lines.
If you work full time in a job with benefits, the Family and Medical Leave Act enables you to take up to 12 weeks of unpaid leave. Some states, like California, allow partially paid leave to care for family members. Some companies also offer employee assistance programs.
Some people with substantial assets may want to protect them through long-term care insurance, which pays the bills of nursing homes, assisted living and other types of care. But policies are expensive, rates can go up at any time, and it is important to study policies closely to see what is actually covered. The government has set up a web site with referrals and programs. AARP also offers information.
The Family Care Alliance provides strategies for conducting constructive family discussions and defusing emotional landmines. They include bringing in an outside professional facilitator, such as a psychologist or clergy. The efforts include keeping the focus on developing a practical care plan, and making agreements for a specific time to test how they work out in practice.
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Additional Resources
Alzheimer's Association CareFinder helps those caring for someone who has Alzheimer's disease find good care in their community.
Family Caregiver Alliance offers publications and services based on caregiver needs, including a Family Care Navigator.
Family Caregiving 101 provides caregivers with tools and information.
National Alliance for Caregiving contains publications and resources for caregivers, including the Family Care Resource Connection.
National Family Caregivers Association has resources offers information and educational materials for family caregivers.
National Legal Resource Center run by the Administration on Aging, offers guidance on elder law.
National Academy of Elder Law Attorneys can refer lawyers who specialize in the documents and legal issues around elder care.
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Wendy Wolfson's article was conceived and produced for RedwoodAge.com as a project for The California Endowment Health Journalism Fellowships, a program of USC's Annenberg School for Communication & Journalism.