Sometimes it happens in the flash of a medical crisis; for others, it is a realization of having already been swept away by increasing needs. For 54 million Americans, almost one in four households, caregiving is the new midlife crisis.
According to the National Alliance for Caregiving, the average caregiver is a 46-year-old working woman spending an additional 18 hours a week giving personal care to her 77-year-old mother, who lives nearby. Three-fourths of all caregivers are women, almost half of whom are also raising children under 18. A quarter of all caregivers spend at least 40 hours a week helping an elder relative. The stakes are even higher with a dementing disease: One study estimates that many caregivers give 69 or more hours a week, with depression three times the norm for people in their age group.
Although for most people caregiving is a labor of love, demands can strain body, mind, and soul. Not only is this unfamiliar territory; in contrast to subsidies for formal care provided by Medicare and Medicaid, few public programs exist to support informal caregivers. In fact, a United Hospital Fund study estimated the national economic value of unpaid caregiving at a whopping $196 billion in 1997.
As duties intensify from running errands to lifting, incontinence management and even intravenous feeding, caregivers can feel increasingly fatigued, angry, resentful — and guilty for feeling that way. Dark moods are common: A 1997 survey by the National Family Caregivers Association (NFCA) found that two-thirds of caregivers were depressed, with isolation and frustration major complaints.
The financial toll can also be devastating. Home care alone can average $18,000 a year; nursing homes, $50,000 a year. Unable to sanely juggle multiple responsibilities, many working caregivers reduce hours or take unpaid leaves of absence. As well, because most illnesses of aging are chronic, not acute, families bear the brunt of costs: Medicare and most private insurance do not cover “custodial” care except under limited conditions.
Knowing where to turn, even the questions to ask, can be exasperating. Needs can be a mix of medical, housing, legal, financial, and social services – all of which require separate entry points into the network of aging services. But fear not: Here are expert starting points to help guide your way.
1) How do I find good care for my loved one?
The best place to start is the information specialist at your local Area Agency on Aging (AAA). These federally mandated clearinghouses in every county help sort through confusion and provide referrals to services like home health care agencies, visiting nurses, adult day care, respite, support groups, transportation, hospice, legal and financial counseling, health insurance, volunteers, escort and companionship, nutrition sites, home-delivered meals, nursing homes, residential care facilities, and home repair.
Local chapters of the United Way, social service agencies, medical societies, religious and fraternal organizations, and hospital discharge planners are also valuable resources.
When to step in? Pay attention to warning signs such as changes in your loved one’s patterns of eating, grooming, medication management, or socialization. Educate yourself pro-actively about medical conditions, housing options, legal and financial matters, and community resources. Then take your loved one for a geriatric assessment – a complete physical, neurological, and cognitive work-up – to devise a plan of care both for now and for the future.
What if you live far away? In this case, call your loved one regularly and record any changes you sense in personality, behavior, or ability to function. Network with relatives, friends, neighbors, financial advisors, and health care professionals. When you visit, get a phone book to take back, set up a personal emergency alert system, and meet with an elder law attorney to discuss estate planning and advance directives for end-of-life care. You might also look into hiring a private geriatric care manager [see below].
2) How do I convince my loved one we need to bring in outside help?
Everyone wants to maintain independence – and dignity; few people want to burden their families with elder care. How do you talk to your loved ones about end-of-life wishes, moving out of their home, or private legal and financial matters?
Ideally, the time to bring up these subjects is before a crisis hits – definitely if you notice changes in memory or moods. Try these communication approaches:
- Say you are looking into estate planning for your kids and need to ask what they did;
- Ask if they would accept a birthday treat such as regular house cleaning;
- Assure that you do not want to control their affairs but are concerned that everything is in place, especially if a crisis occurs;
- Ask if their grandson could mow the lawn or help with small tasks to learn responsibility.
If you still meet with resistance, try hiring a private geriatric care manager. For a fee of $200 to $350 for the initial assessment, then hourly rates from $30 to $150 depending on duties, credentials and geographic location, social workers, nurses or psychologists develop and monitor a plan of care that might involve in-home medical and psychological assessments, conflict resolution, financial management, in-home care services or long-term placement.
Remember that successful care planning always includes input from the care receiver. Educate yourself about community resources and present a well-informed, compassionate plan for the best chances of success.
3) How do I stop fighting with my siblings over Mom’s care?
The NFCA survey found that 76 percent of family caregivers don’t receive consistent help from other family members. Spouses get the least amount – only 16 percent.
Reasons for lack of cooperation range from geographic or emotional distance to marital status and family dynamics. Siblings handle loss individually; some may deny a parent’s impending death, or fear they are next. And all too often, old sibling rivalries or new spousal jealousies surface unexpectedly.
The best communications are open, honest, and respectful. But if conflict over finances, housing, or legal matters threatens to derail a plan of care, a third party professional such as an elder law attorney, certified financial counselor, care manager, or family therapist can focus your family on what you can do together and suggest options for long-term care.
An attorney who specializes in elder care can help manage assets, safeguard finances, and distribute assets after death. Estate planning also can minimize taxes and secure long-term health care and retirement financing. A financial planner can help with long-term care planning and insurance as well as estate and tax matters.
When conflicts are more emotional than topical, it may help to bring in a therapist or care manager to oversee a family meeting that includes parents, siblings, spouses, and other concerned relatives. These gatherings should have a clear agenda, with everyone voicing an opinion but staying focused on care planning rather than unresolved side issues. Not everything has to be decided at once. Discuss care needs and what specific help can be given, and appoint a primary caregiver. For example, the brother who can’t provide hands-on help can handle Mom’s finances and fly in twice a year to relieve you; your sister can make weekly phone calls or research medical information.
If there’s still no response from siblings, get help elsewhere – from support groups, friends, community services. Sometimes consensus just isn’t possible, but that doesn’t mean your loved one won’t be getting the best care.
4) How can I keep going when I?ve reached the end of my rope?
According to studies, most caregivers wait four or five years before reaching out for support and help. Not surprisingly, they also report that stress and anxiety, and the ability to do the job well, are major concerns.
When caregiving becomes more frustrating than rewarding, a caregiver is at risk for serious problems like depression, sleep difficulties, eating disorders, and drug or alcohol addictions. Burnout can lead to premature placement of a loved one, so good self-care is essential.
If family or friends are not always available, call on community professionals in adult day care, formal respite programs, home health services, and support groups.
Adult day centers offer all-day social activities and lunch for $30 to $150 a day (not covered by most insurance). Some programs also operate evenings and weekends. Many (called “adult day health care”) add medical monitoring, personal care assistance, and occupational or rehabilitation therapy, which may be covered by insurance. Some programs specialize in helping people with dementia or developmental disabilities. Round-trip transportation is often provided.
Formal respite ranges from a few regular hours of companionship to placing your loved one in a residential care facility or nursing home for a week or two. Most home health care agencies offer sitting services and custodial care or light housekeeping. Check with Visiting Nurse Associations, social service agencies, volunteer groups, religious and fraternal organizations, and hospital discharge planners. Before hiring anyone, check references for several agencies; ask about back-up plans if an aide doesn’t show up; ask how staff is trained and care monitored. Call your county’s licensing division for compliance records. Be sure the agency is Medicare-certified.
Regular support groups are available through medical associations, caregiver Web sites, hospital senior services, and some religious congregations. Ask your employer about benefits such as flex time or private counseling.
If you can no longer care for your loved one at home, consider options like assisted living, which combines housing, personalized support services, and health care; nursing homes, which provide post-hospital rehabilitation as well as 24-hour skilled nursing care; and hospice, or comfort care for people diagnosed with six months or left to live.
Beth Witrogen McLeod
Reprinted with permission, all rights reserved.
This article originally appeared in Health, October 2000.