True or false:
1. While in earlier days Americans took care of sick and elderly family members, today they’re too busy.
2. The burden of caring for older people falls mostly on the young.
3. Most people in need of care are in nursing homes or other residences, which the government pays for.
1. False. In fact, the bulk of long-term care for older Americans is still provided by unpaid family and friends—about 34 million of them in the U.S., according to the National Alliance for Caregiving, and the numbers will increase as the population ages and requires more care. Another 10 million people provide care for a disabled child or younger adult. In Canada over 2 million people care for older relatives, and nearly 70% of elder care is provided by close family members.
2. False. More and more middle-aged and olderpeople are acting as caregivers, here and around the world. The average age is 49. Here, as in most countries, the majority of caregivers are women (60%).
3. False. Most of those in need of care are at home. Even at age 85 and beyond, only a small percentage live in nursing homes. For the most part, you must either pay out of your own pocket or have private long-term care insurance. Medicaid (the government program for people with limited resources) ends up paying for nursing homes when people have used up nearly all of their financial assets.
According to an AARP report, family caregivers in the U.S. provide an estimated $470 billion worth of care to their parents, spouses, partners, and other adult loved ones per year. Many people provide care skillfully and uncomplainingly out of love and a sense of responsibility. But caregiving even at its best can be a thankless and backbreaking task, consuming every moment of your time and then some. (The 36-Hour Day is the all-too-true title of a classic book of advice about caring for Alzheimer’s patients.) And disability in a family often goes along with reduced earning power—or poverty.
What caregivers need
Even in affluent households, caregivers need help—somebody to assist with shopping and other duties, or just a break from a task with no letup. Caregivers regularly perform such tasks as lifting, feeding, bathing, dressing, undressing, and toileting the disabled person, as well as dealing with wheelchairs and other heavy equipment. Depression, exhaustion, money concerns, and fears for the future often trouble both the recipient of the care and the caregiver. Many people who care for someone also have jobs—or may belong to what’s been called the “sandwich” generation. That’s a person who’s caring for children at home plus an aging parent or other relative.
It’s not surprising, then, that many studies have found higher levels of depressive symptomsand other mental health problems among caregivers than among their non-caregiving peers—though that’s not always the case, and indeed some newer (and less reported) research has suggested that for some people, caregiving can be a rewarding and even health-boosting experience.
Whatever a person’s individual experience of caregiving, one thing caregivers have in common is that our health-care system is simply not set up to do much to help them. Our system, including health insurance, is designed to provide care for the temporarily sick—those who either die from their illnesses or get well—not for the chronically ill or disabled, and certainly not for the people who care for them.
The needs of caregivers vary. One may need information, another a tax break or other form of subsidy, another a visiting nurse or aide, another assistance with shopping and tasks requiring driving, yet another the opportunity to talk with other people in the same position. Or all of the above. Various state programs may offer some help, such as visiting nurses or subsidies for building a ramp on the house or a bathroom designed for the handicapped or elderly. Some states fund such programs as adult day care, home health care, and support groups. And you may qualify for a tax deduction if you’re taking care of a relative. But for all programs, funding is limited, and many caregivers find themselves too poor to hire help, but too “rich” to qualify for state programs.
Where and how caregivers can find help?
You may be so concerned with the problems of the person you take care of that you forget that you too need support and validation, not to mention help with the laundry, a vacation, or time to see a movie and get a haircut. Children in households where a disabled person lives are often adversely affected emotionally and need sympathetic advice and other help. One of the first steps caregivers must take is to admit that they also need help—often difficult to acknowledge. Here’s how to find resources:
• Learn about community services. Start online with some of the following search terms: “Services for aging,” “Alzheimer’s support,” “Arthritis Foundation,” “Caregiving for elderly,” or whatever applies. Ask your doctor for guidance. Call local hospitals and see if they have any available services. Find out if you qualify for whatever state programs are available, for deliveries from Meals on Wheels, or for a home health aide. The organizations listed in the inset below are excellent sources of information.
• Join a support group, either in person or online. Local meetings are a source of information, companionship, and practical help. And these groups often work to promote better laws, more funding, and better public understanding of caregivers’ experience. Membership costs tend to be minimal if any. If you live somewhere remote or prefer not to attend in-person meetings, many online forums are also available. The Family Caregiver Alliance offers a directory of in-person and online support groups on its website.
• Don’t forget friends, family, and neighbors. They may really want to help but not know how to go about it. When someone says, “let me know if I can do anything,” take it literally. Reply by asking, “could you take my shopping list to the grocery store the next time you go?” Or “could you relieve me next Tuesday afternoon so I can go to the dentist?” A network of friends and relatives who’ll each do one small task once a month can make a big difference.
Resources for Caregivers and Their Families
These organizations are excellent sources of information and support for caregivers, and many also advocate for better laws and more funding for caregiving.
Published June 10, 2016