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Helping Family and Loved Ones |
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 Being a caregiver -- What to expect
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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Adapted from The
Handbook for Mortals: Guidance for People Facing Serious Illness,
by Joanne Lynn and Joan Harrold, copyright by Joanne Lynn, used by
permission of Oxford University Press.
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