Watch for serious, long-term illness on television, in the newspapers, in the movies; it is almost never there. One would think that all Americans are vigorous young people who never grow old and never get sick. Very few people realize that almost all of us will have a substantial period of our adult lives in which we are responsible for the care of an older relative who cannot live independently any more. At any one time, one in four American households is providing unpaid care to an older relative or to a loved one for a substantial period of time. It is a rare person who is not touched by this experience.
Caring for children is expected and fairly predictable in onset and in completion. However, the need to care for a sick or elderly relative or other loved one often happens unexpectedly and is certainly an unpredictable way of life. Caring for one another, though, is probably the defining trait of "family." How families and loved ones provide this care challenges creativity, commitment, and virtue. In some families, taking care of one's relatives is absolutely expected, and people can take on extraordinary burdens to honor that expectation. Other families, however, find it to be sufficient just to keep in touch with one another and to oversee paid caregivers.
Eight of every ten family caregivers are women and most will be caregivers for more than ten years. No matter what social class or status a woman has in the workplace, it is she who will most often be expected (in her own eyes as well as by others) to take physical care of family members who are sick or dependent. Sadly, having several daughters and daughters-in-law still gives one the best chance to stay in a family home when one is dying. In the past, having sons (unless married) did not help you much. This pattern may be changing, though, as men get more skills in homemaking and live longer, and as they find themselves in situations where they are the best persons to provide the care.
The need for a caregiver often comes up abruptly, after a loved one suffers a stroke or a debilitating fall, for example. After an initial period of adjustment, which often comes with no instructions or help, caregiving settles into a rhythm of coping with the day-to-day. It can become easier to get breaks and support in this stable phase, but only if the caregiver is encouraged to do so. Caregiving for someone who is seriously ill often ends with death, though it might also change if the dying person is admitted to a nursing home, hospital, or inpatient hospice. While the caregiver may feel relief when this work is done, it is another major life transition, which is often quite uncomfortable and disorienting.
Caregiving for a dependent adult is often most difficult for the person needing the care. If the person is mentally sharp, he or she is often quite offended by dependency and troubled to impose a burden on a spouse, younger relatives, or other loved ones. Needing help with private matters like using the toilet and dressing can feel terribly humiliating. If the person is not mentally sharp, he or she may be upset by needing help, but may be unable even to understand why there is no choice.
Caregivers have problems of their own. They can wear themselves out, cut themselves off from most of the world, and sidetrack their own career prospects. They can lose their job, their health insurance, and their economic security. So, why do they do it? Because it is such an essential part of what it is to be a caring person, to take care of those who are part of your family or those you love.
If the person who is dying is likely to have only a few months, and the caregiver has a large employer (or an understanding one), caregivers can often arrange to have their job back when they return. However, if the caregiver worked for a small employer, or needs to take a longer and more uncertain time off, it can be very hard to be sure of having a job to come back to. Likewise, the caregiver may have health problems and have problems getting insurance if she leaves her job. The federal Family and Medical Leave Act may ensure that a caregiver has some unpaid leave to care for a sick family member; be sure to ask. Often, other workers are willing to pool some extra leave, or an employer will make some accommodation if you ask.
Since most caregivers have had little experience with friends or family who have provided similar care, many feel they need "a road map," some sense of what it is to do this job well. This guidance is made even more difficult by the fact that many of these caregivers also must keep working in conventional employment. Juggling multiple obligations becomes the routine for most.
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