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Kathleen Kelly, Family Caregiver Alliance

How to balance your career with the needs of an aging family member

Health

Your boss has asked you to stay a couple of hours late to finish a project. In years past, this was not a problem — you stayed to help out. But now your 84-year-old father, who suffers from Alzheimer’s disease, has moved in with you. He needs help preparing dinner and managing his numerous medications. He’s not safe on his own. What do you do?

Holding a job and caring for a frail or ill older family member at home can be a huge challenge as you attempt to balance competing demands on your time and energy. As our population ages, more families than ever are providing this care. According to studies, as many as 42 percent of working Americans — more than 54 million people — have provided eldercare in the last five years; 17 percent currently provide care. The average age of caregivers is 49 — a peak year for earnings and for career achievement. Women take on slightly more responsibility for care, but men are greatly impacted, as well.

Current demographic trends make this issue even more urgent:

  • The massive Baby Boomer generation is at caregiving age, and soon many will need care themselves.
  • We’re living longer, resulting in more debilitating, age-related illnesses such as Alzheimer’s disease, Parkinson’s, arthritis, diabetes and stroke.
  • Hospital stays are shorter, so more care is needed at home.
  • Women, traditionally caregivers for both children and the elderly, are now in the workforce and less available to provide full-time care.
  • Work disruptions due to employee caregiving responsibilities result in productivity losses to businesses of an estimated $2,110 per year per employee — up to $33.6 billion per year for full-time employees as a group.

    • What kinds of care do family caregivers provide?

    The types of care range from personal (bathing, dressing, help with toileting, feeding) to everyday tasks and activities (preparing meals, providing transportation, handling finances, managing medications, coordinating services, communicating with health care professionals). The average caregiver provides care for more than four years, with some care extending for decades. Few caregivers use paid help. Fully 76 percent of working caregivers rely only on their families and themselves. At times, caregiving can seem like a second job.

    While families may undertake such care willingly and lovingly, there can be long-lasting consequences — both personal and financial — for working caregivers. These may include poorer health, increased stress, time lost from work, lower productivity, quitting a job to give care, lost employer paid health benefits and lower current and future earnings, including Social Security and pension income. Eventually, 10 percent of caregivers report quitting their jobs to provide care full-time, resulting in an average loss of more than $303,880 each in wage, Social Security income and pension income over a lifetime.

    Keys to managing the balancing act: Evaluating needs, exploring options

    To start, it’s important to evaluate your parent’s current living situation and assess how care needs can be met. Consider your parent’s safety, isolation, ability to be left alone, medical needs, and what help is available to handle basic daily activities.

    Your challenge as a caregiver is to determine how best to utilize the time and energy you have available for caregiving in addition to meeting the demands of your job and family responsibilities. Everyone’s situation is different, and for many families, there’s no simple, single solution. Instead, they create an intricate patchwork of services and assistance. Be aware that care needs will change, so different solutions may be needed in the future.

    In sorting out your family’s needs, it helps to:

  • Make a list of all you do as a caregiver. For example, I do the grocery shopping; help Mom dress every morning; take Dad to the doctor; pay his bills; order prescriptions; do her laundry; make his dinner.
  • Make a second list of what you might be able to delegate to others and the times you need help.
  • Determine whether the care can be delivered at home, a senior center, an adult day care center, or another location.
  • Determine how much money your parent or your family can afford to pay for outside help.
  • Explore services and care options in your community or near your parent’s home. Ask friends and neighbors about local services and care providers.
  • Be willing to ask for help, and seek counseling from community organizations that offer advice for caregivers.

    • How to locate community resources:

  • Information and Referral: These are generally free services, maintained by senior, community or government organizations, to help you locate local programs and services. Some employers also offer information through Employee Assistance Programs (EAPs).
  • The Internet provides resource listings and online support groups where you can seek information. Family Caregiver Alliance’s (FCA) online Family Care Navigator offers information on public resources for every state. The national Eldercare Locator provides information on Area Agencies on Aging and other services.
  • Informal Arrangements: There may be chores that can be done by friends, family, neighbors or faith group members.
  • A family meeting can be helpful in identifying needs, discussing medical legal and financial issues, sharing concerns and delegating tasks.
  • Adult Day Centers: Many working caregivers find adult day centers to be life-savers. The centers provide social and therapeutic activities for older adults and adults with disabilities in a safe, supportive environment. Some offer transportation, meals, personal care, and medical or allied health care. Participants attend several hours per day, up to five days a week, making it possible for you, as caregiver, to go to work assured that your parent is in a safe place.
  • In-Home Care: Care at home can be formal (paid) through a home care agency or privately hired aide, or informal (unpaid) — a friend, family member or volunteer.
  • Other community resources: Services include geriatric care managers, home-delivered meals, transportation, temporary overnight care, and support groups. An FCA fact sheet on Community Care Options offers more information.

    • What employers can do:

    A growing number of employers recognize caregiving as a workplace issue that affects everyone from CEOs to delivery staff. Larger corporations sometimes are able to offer support in ways smaller ones cannot, but there are actions that companies of any size can take to support employees who have caregiving responsibilities:

  • The most requested adjustment is flexibility in work hours. This may include allowing a change in hours; a compressed work schedule; a part-time schedule; job sharing; telecommuting and a limit on mandatory overtime. Studies show that flexible scheduling improves job performance, decreases tardiness and employee turnover, and increases job satisfaction and retention (even for employees are who are not currently caregivers).
  • Companies with 50 or more employees must comply with the federal Family and Medical Leave Act (FMLA), which allows for up to 12 weeks of unpaid leave (or 26 weeks to care for an active service member). The leave may be used to care for a seriously ill parent, spouse or child. Job and health insurance are protected. However, approximately half of U.S. companies have fewer than 50 employees and are exempt from FMLA requirements. Nonetheless, many use FMLA guidelines to provide support for individual employees.
  • Paid Family Leave (PFL) is a mandated benefit that covers caregivers of a seriously ill parent, child, spouse or registered domestic partner, as well as new parents. Only a handful of states currently offer paid family leave.
  • Knowledgeable HR or Employee Assistance Program (EAP) staff can provide information on helpful Internet sites, local services, care managers, and company leave policies.
  • Various state regulations and certain sections of the ADA (Americans with Disabilities Act) prohibit employers from discriminating against caregiving employees (for example, passing over employees for promotion, stereotyping employees because of caregiving status).
  • Company-sponsored training for supervisors enhances understanding of the conflicting demands of work and caregiving and ensures that mandates for family leave and antidiscrimination regulations are met.
  • Some larger employers offer “cafeteria style” employee benefits that allow employees to select supplemental dependent care coverage to partially reimburse costs for in-home care or adult day care. A few companies offer subsidized payments for geriatric care managers.
  • Sometimes larger businesses organize in-house caregiver support groups, informational “brown-bag” lunch sessions, or offer access to outside support groups.
  • Some employers arrange group purchase of long-term care insurance for employees, spouses and dependents.

    • Using technology:

    The Internet provides a wealth of medical and caregiving information available 24 hours a day on your computer, tablet or cell phone. Digital technology is also useful for ordering prescriptions, communicating with health care professionals, staying in contact with friends and family, scheduling home care, learning new skills through webinars, tracking movement, and even visually checking on loved ones during the day or providing surveillance of your parent’s home when you can’t be there.

    Handling your stress:

    Negotiating time off work, coping with tension-filled family dynamics and managing your own fears and concerns about your parent’s well-being all contribute to increased stress and potential burn-out.

    It’s not selfish to say you need to care for you. Utilize local services. Say yes to offers of help. Join a support group if you want to talk about your situation with others — there are even groups online. If feasible, talk to your employer about making adjustments in your work hours. Do what you can to stay healthy: eat well, try to get some exercise (walking is a great stress-reliever!). Get some sleep if you can. Seek respite (substitute care) so you get a break from caregiving demands. Try to be flexible, accept that you may have to let go of some duties, and remember there will good days and bad days.

    Family-friendly workplace policies coupled with your own proactive strategies for providing care can go a long way towards making your caregiving journey more doable and less stressful.

    More Information & Resources

    Eldercare Locator
    Information on services for older adults and their families.
    (800) 677-1116
    www.eldercare.gov

    Medicare
    www.medicare.gov
    (800) MEDICARE or (800) 633-4227

    National Academy of Elder Law Attorneys
    Provides information on how to choose an elder law attorney and referrals.
    1577 Spring Hill Road, Suite 220
    Vienna, VA 22182
    (703) 942-5711
    www.naela.org/Public

    National Association of Professional Geriatric Care Managers
    3275 West Ina Road, Suite 130
    Tucson, AZ 85741
    (520) 881-8008
    http://www.caremanager.org/

    Families and Work Institute
    267 Fifth Avenue, 2nd Floor
    New York, NY 10016
    (212) 465-2044
    www.familiesandwork.org

    National Council on Aging
    Offers BenefitsCheckUp.
    www.ncoa.org

    For employers:
    Best Practices in Workplace Eldercare
    National Alliance for Caregiving and ReACT (Respect a Caregiver’s Time). March 2012.

    Long-Term Care Options Explored on PBS NewsHour:

    More Helpful Publications from Family Caregiver Alliance:

    About Family Caregiver Alliance

    National Center on Caregiving
    785 Market Street, Suite 750
    San Francisco, CA 94103
    (415) 434-3388
    (800) 445-8106
    Website: www.caregiver.org
    E-mail: info@caregiver.org

    Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.

    Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.

    Kathleen Kelly is the executive director of Family Caregiver Alliance and the National Center on Caregiving, based in San Francisco, Calif.

    By —

    Kathleen Kelly, Family Caregiver Alliance

    Kathleen Kelly is the executive director of Family Caregiver Alliance and the National Center on Caregiving, based in San Francisco, Calif.

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