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HEART Insight:
doi: 10.1097/01.HEARTI.0000387916.13106.93
Features: Heart TO Heart

The Caregiving Tug‐Of‐War

Patton, Carol

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Abstract

Time Vs. Money, And Dealing With Family Members Who Don't Do Their Fair Share

Caregiving can be both fulfilling and draining. Besides the emotional highs and lows of caring for a loved one, caregivers are also plagued with numerous financial worries: Is there enough money to pay for Mom's care?; Will my son be able to financially care for his disabled sister after I'm gone?; How can we afford to live if I quit my job to care for my husband?

Addressing money issues typically ranks last on people's to-do list — and caregivers are no different. It can be painful, frightening and confusing. However, avoiding the topic may have serious consequences, for caregivers and patients alike. Bank accounts drain. Care is compromised. Loving relationships are destroyed. Many people wait until their loved ones become ill or disabled to discuss sensitive financial issues. But by then, it's often too late.

While each caregiving situation is different, families need to discuss financial matters before a health crisis erupts, urges Suzanne Mintz, president and chief executive officer of the National Family Caregivers Association in Kensington, MD.

“Money is fraught with emotions at a level totally separate from any other emotion one might have,” observes Donna Schempp, LCSW, program director at the Family Caregiver Alliance in San Francisco. “It's often not discussed or openly brought up.”

Nonetheless, “It's absolutely critical that people put their financial house in order,” Mintz emphasizes, because income and assets dictate what health care resources are available to people. “Get a plan, regardless of your level of income. You can't do this in a crisis, it [will be] too late.”

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GETTING STARTED

First, the basics. Get Social Security numbers and account or ID numbers for savings, checking, pension, brokerage, and other investment accounts. Find out whether there are other sources of income. Is Mom's house paid off? Who is Dad's health insurance provider? What is his member ID? Do your parents each have a will or advance directive?

Mintz says it's virtually impossible to make healthcare or quality of life decisions unless you become familiar with a loved one's overall financial picture and personal preferences. Once you do, you can rule in or out various options, such as a parent continuing to live in his own home with the assistance of a home healthcare worker, as opposed to moving in with an adult child or to an assisted living facility or nursing home.

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Before any decisions are made, suggest a family meeting. This is not a time to fix ongoing family issues but to develop a plan on how to care for your loved one based on medical condition, finances, preferences and available resources. You may not agree on every issue at first, but you can work toward consensus-building on unresolved topics during subsequent meetings.

If tensions exist between family members, especially if they involve the family will or inheritance, consider hiring a third-party to conduct the meeting, such as a social worker or family clergy, adds Schempp.

“Whenever I run a family meeting, as soon as money issues come up, I discuss what Mom's care needs are, how much money she has and what their expectations are around their inheritance,” she says.

Depending on whether your loved one can actively participate in planning and decision-making you may either include him or her in the family meeting, or hold a separate one-on-one get-together later to explain the plan of action.

Be prepared for some resistance, Mintz warns, because some seniors are reluctant to share their financial status — even with their children. They may deny they need help, proclaim their self-sufficiency or prefer not to have strangers in their home.

To overcome such objections, try posing your wishes as a favor (“Mom, I worry about you when I'm at work. Would you mind if a healthcare aide came over in the afternoons? It would make me feel a lot better.”) or as a request for guidance (“Dad, I need some advice. What kind of financial information should I give my kids in case something happens to me?”).

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DIVVYING UP RESPONSIBILITIES

There are plenty of caregiving options, depending on the amount of involvement that is possible for family members who may have demanding careers, are raising young children or live in a distant state (or all three). Schempp says only when the entire family agrees on the type and amount of care that is needed — after having researched the associated costs — you can move to the next ticklish topic of who does what.

For one thing, many parents are uncomfortable choosing one child to be the primary caregiver, or giving him or her Power Of Attorney, because they want to avoid offending their other children. So Schempp advises making these decisions as a family focusing on these factors:

▪ Who has the strongest relationship with the patient? That person can be the primary caregiver.

▪ Who's skilled at managing finances? That's who should pay the bills and oversee expenses.

▪ Who's the most organized? Maybe that family member can schedule doctor appointments, order medications and arrange transportation.

But each family member should be prepared to step in and assume a different role, should circumstances, such as a caregiver's own illness or a job transfer, require reshuffling responsibilities. Flexibility is key to keep a carefully constructed, well-oiled machine running smoothly. Maybe a parent moves into the daughter's home. Or siblings can take turns spending the night at their parents' home. Perhaps an out-of-town son can visit for two weeks every three months, staying with the parent to give his siblings a break; the Family Medical and Leave Act allows employees to take up to 12 workweeks of unpaid leave during any 12-month period to care for an immediate family member.

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THE BOTTOM LINE

While assigning caregiving roles can be sensitive, Schempp says money is by far the touchiest subject of all. So if one or more family members cannot donate time, even to provide part-time or respite care, what about contributing money towards a home healthcare aide, adult daycare or a medically supervised living arrangement?

A 2009 MetLife market survey pegged the national average hourly rate for home healthcare aides at $21; the average daily rate for adult daycare services at $67; and the average yearly cost of a private room in an assisted living facility and nursing home at $37,572 and $79,935, respectively.

According to Psychiatric News, the number of Americans under age 65 reporting trouble paying for their medications is on the rise, from 10.3 percent to 13.9 percent in 2007.

Caregivers must think about their own financial future and ability to prepare for aging, says Carol Levine, director at Families & Health Care Project at United Hospital Fund in NY, which focuses on increasing the awareness of the role family caregivers play in chronic illness. She adds that it doesn't help anyone when caregivers become impoverished. “You have to be a little bit selfish,” says Levine.

Perhaps other family members can chip in to mitigate any loss of income or earning potential the primary caregiver experiences by quitting his or her job, cutting back on hours or refusing a promotion.

Consult with an attorney experienced in setting up a family care plan or a special needs/supplemental needs trust (SNT). For more information, visit www.HeartInsight.com to read “Making Sense Out Of Government Assistance Programs,” an online-only article.

If ongoing care requires significant financial resources that exceed a family's means, the value of a parent's home could be tapped to fund these caregiving options, particularly if the mortgage is paid off, says Schempp, suggesting that families look into rental income, selling the home or taking out a reverse mortgage — a bank loan using a primary residence as collateral that provides either a lump sum of cash or monthly income.

The idea is to be prepared, since anything can happen, says Levine. Splitting up caregiving responsibilities and putting a loved one's financial house in order can prevent minor problems from snowballing into caregiver burnout or resentment between siblings, causing families to break apart.

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Helping Hands

A caregiver's day never ends, and is often filled with a wide range of responsibilities. These resources can help maximize your time and minimize your financial stress:

Community Call Centers: Many communities offer residents information about important, and often free, local services via 3-1-1, a non-emergency telephone number, or 2-1-1, which focuses on health and human services.

Home Repair/Maintenance: Many churches, synagogues and other places of worship provide a volunteer handyman who performs small home repairs and routine maintenance. You can also contact Rebuilding Together (www.rebuildingtogether.com) for free major home repairs or Angie's List Wishmaker's program (http://wishmakers.angieslist.com) for everything from free painting to plumbing services.

House Cleaning: Employment centers at community colleges may know students whose cleaning rates are cheaper than professional maid services.

Meal Planning: Meals-on-Wheels Association of America (www.mowaa.org) delivers low-cost meals to home-bound, low-income people.

Personal Services: Catholic Family Services, Jewish Family Services and other organizations provide free haircuts and other services. You can also contact local senior centers or your area's agency on aging for volunteer referrals.

Transportation: Your city's mass transit system may include free or low cost transportation services for disabled people. Most offer pick-up/drop-off locations around town and sometimes door-to-door service.

Source: Carol Bradley Bursack, www.eldercarelink.com

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Doing Your Homework

These resources can help you get the facts and figures needed to create a workable caregiving plan that meets your loved one's needs and expectations, and distributes the necessary investment of time and money by family members fairly:

Family Caregiver Alliancewww.caregiver.orgOffers tips on how to hold a family meeting.

Families & Health Care Project at United Hospital Fundwww.nextstepincare.orgProvides guides, checklists and information to plan safe and smooth transitions for patients.

Family and Medical Leave Actwww.opm.gov/oca/leave/html/fmlafac2.aspDescribes your rights and your employer's responsibilities under this federal law.

Medicaidwww.cms.gov/apps/contacts

Medicarewww.medicare.gov/coverage/home.asp

National Association of Professional Geriatric Care Mangerswww.caremanager.orgHelps aging adults remain in their home, access free community and government resources and determine the best path of care. Hourly rates range from $80 to $200, depending on zip code. Website also provides a list of government, community and social service organizations and associations for caregivers.

National Family Caregivers Associationhttp://www.nfcacares.orgEducates, supports and connects caregivers.

Patient Advocate Foundationwww.patientadvocate.org, 800-532-5274Provides free case management services to help mediate, arbitrate and negotiate medical debt.

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Caregiving By The Numbers

Almost one-third of American adults are caregivers, according to Caregiving in the U.S. 2009, a national study conducted by market research firm Mathew Greenwald & Associates for the National Alliance for Caregiving and AARP. Roughly 65.7 million people provide an average of 20 hours of care per week.

▪ 60 percent of family caregivers are employed. One in five took a leave of absence from work while 66 percent made some adjustment to their job, including giving up work entirely.

▪ 66 percent of caregivers are female

▪ 86 percent care for a relative, most often a parent [36 percent]

▪ 14 percent provide care - over and above parenting - for a child with special needs

▪ Caregiving lasts an average of 4.6 years

© 2010 American Heart Association, Inc.

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