Chapter One
And let us not grow weary while doing good, for in due season we
shall reap if we do not lose heart. Therefore, as we have opportunity, let us do good to all, especially to those who are of the household of
faith. Galatians 6:9-10 NKJV
Facing a New Role
Becoming Your Loved One's Caregiver
During a career change, Karen moved in with her parents as a single
adult. She planned to stay six months but never moved out. Instead,
she eventually purchased the house and became her parents' primary
caregiver as their health began to fail. "For the first 15 years I was
footloose and fancy free, but as time went on, I had to learn to be a lot
less selfish," says Karen, now 63. "It was quite a shift because they had
always taken care of my needs and I'd been so involved outside of the
home-at work and at church-but now it was my turn to care."
Her new role as caregiver developed gradually-from helping her
arthritic mother climb the five steps to get to the bathroom and preparing
meals for her parents to eat while she was at work to driving her
blind father to organ concerts and cleaning up after her mother when
she was incontinent.
Karen's help wasn't always immediately appreciated. When she
brought home a commode to put on the first floor, her mother got angry.
"She didn't want a `potty chair' where others could see it, so she
made me put it in the basement," says Karen, who respectfully complied.
A couple weeks later, Karen gently raised the issue again. This
time her mother agreed to put it next to her bed. "As a caregiver," says
Karen, "I learned not to impose or go any faster than what my parents
were willing to accept, but I didn't ignore things either."
After working all day, Karen had to consciously slow her pace to
half speed or less in order to avoid getting impatient with her parents or
frustrating them. "If I talked too fast or moved too fast or expected decisions
too fast, they would get upset. It could be a simple question, such
as, `Do you want coffee, tea, or milk for dinner?' Mentally they were
okay, but it just took longer for them to decide."
Despite the challenges, Karen was devoted to caring for her aging
parents. "My attitude is summed up in a motto I clipped out of a magazine
years ago: `The elderly need so little, but they need that little so
much.'"
* * *
Is your mother, father, spouse, grandparent, aunt, uncle, or friend growing
frail, becoming forgetful, or otherwise feeling the effects of aging?
Have you taken on major responsibilities for an older loved one? Or do
you fear that you may have to at some unexpected moment in the not-too-distant
future? Do you feel perplexed or overwhelmed by decisions
you must make, by information you do not have, or by feelings you do
not understand? Do you wonder how God, faith, or the Christian community
can be integrated into the life of your aging loved ones as they
journey through their final years, or into your own life as you travel along
this unknown path with them? If you answered yes to any of these questions,
this book should assist you. It was designed to take a Christian approach
in mapping and traversing the unfamiliar, complex, and
sometimes overwhelming territory of caregiving for elderly loved ones.
Changing Roles & Responsibilities
Most people begin to experience the consequences of aging gradually.
Since you are aging too, you may observe yourself having certain difficulties
even as you attempt to help a loved one who may be further
along in years. For example, you may need bifocals, just as your elderly
loved one may need cataract surgery. We are all on the same journey toward
our final destination. We just have different roles at different
times. If your loved one is ahead of you in years or is growing frail more
quickly, one of your roles for a while will be that of a caregiver.
Your loved one's difficulties may have increased slowly, making you
a caregiver by degrees. Perhaps you first started driving Mom to her
home after dinner at your place; then you had to write down important
events on a calendar for her; now she needs daily visits so you can be sure
she has taken her heart pills. As people live longer, many develop chronic
ailments that require more hands-on assistance over a longer period of
time. You may have become a caregiver precipitously, after your husband's
stroke. Elders often take an abrupt downturn in health after an illness
or accident that requires medical intervention and hospitalization.
Either way, you are finding that you must become a caregiver. The role
means far more than caring about others or feeling concerned for their welfare.
Most likely, you have always felt appreciative of and devoted to your
parents, grandparents, aunts, uncles, spouse, or older friends. But now they
need more than your time and tender feelings. They need help with concrete
tasks-paying bills, grocery shopping, deciding when it is time to see a medical
specialist, or even changing soiled bed linen at 3 A.M. You may need to arrange
for professional services and transport your loved one to
appointments and social activities. As your elder's health deteriorates, you
might be called upon to supervise financial affairs and medical treatments
while working with professionals such as physicians, attorneys, CPAs, and
insurance agents. When you assume such tasks and accept major responsibilities
for the well-being of elderly adults, you become a caregiver.
Caregiver Profiles
The Spouse
When spouses are present as elderly people fall ill, they almost invariably
become the principal caregivers. Elderly spouses are often enormously
loyal to each other. But this arrangement can be tenuous. If you are a
caregiving spouse-unless you happen to be a young one-you probably
feel the effects of your own aging. What if you are asked to help your wife
learn to walk again after her stroke, but you do not feel all that steady on
your own feet? One devoted husband needed to help his wife to the bathroom
several times during the night, even though he needed to take pills
for his own difficulty sleeping at night. If you are such a caregiver, you
might think privately, We could both use help. But since I haven't had a
heart attack in 10 years, nobody seems to notice my needs.
The Female Relative
When elderly people become ill but do not have a spouse, most often
the primary caregiver will be a female relative-usually a daughter or
daughter-in-law. Female caregivers usually fill many additional roles in
relationships, family, and career.
The largest group of caregivers is made up of employed women in
their forties and fifties. But you may well be younger or older, married or
single, not employed outside the home or working part-time. In any case,
you have many demands competing for your time. You may have delayed
your own professional aspirations until your children were grown.
Perhaps now was the time you had hoped to go back to school or to devote
time and attention to your career. You did not expect to become a new
kind of caregiver, at least not so soon. Your employer might offer time off
for maternity leave or crises with child care, but not for elder care.
Many times, a spouse can be a ready source of emotional support. You
have someone to talk to about your parent-care problems; you have another
adult in the house who can listen, understand, share decision making,
and help out in many other ways. Still, caregiving responsibilities can
become a source of conflict even in the best marriages. On the other hand,
if you are a single caregiver, you may feel alone and isolated in your role.
Sooner or later most caregivers feel hemmed in by responsibilities
on every side. Do you find yourself exhausted trying to balance the
needs of your children with those of an elderly family member? If so,
you are probably part of what experts call the Sandwich Generation, a
term coined to describe caregivers who are assisting relatives on both
ends-aging loved ones and their own children. Between 20 and 40 percent
of caregivers are sandwiched between the caregiving needs of children
at home and those of parents or older family members. If you are
a grandparent providing assistance to parents, children, and grandchildren,
you are part of the Club Sandwich Generation, a term that refers
to the numerous layers of responsibility many grandparents assume in
today's complex and multigenerational culture.
Wife, mother, grandmother, homemaker, volunteer, church
worker, paid employee at a "real job." You may occupy all of these
roles-or more-at the same time. You may fix meals; clean house;
wash clothes; provide discipline and structure for youngsters; encourage
and support your husband; arrange lessons and extracurricular activities;
offer moral support and spiritual training; make peace out of
conflict; put out "emotional brushfires"; and transport the young, the
old, and yourself seemingly everywhere for everything.
The weight of the load may well be negatively affecting your marriage,
your personal health, your career, and your emotional equilibrium.
The risk of chronic fatigue, depression, and demoralization is
high. Some caregivers decide to quit their jobs or eliminate certain responsibilities
in order to restore balance to life. Still, most caregivers try
not to complain under such circumstances.
The Male Caregiver
One single dad, raising two children and caring for an elderly mother,
was ruthlessly honest about his experience. "We talk about the Sandwich
Generation," he said. "But do you know what's in the middle of
that sandwich? I'll tell you: chopped meat!" If you are a male caregiver,
like that single dad, you face your own unique challenges. You are in the
minority; only about one in five caregivers is male. Perhaps this is because
women, when available, often automatically assume helping
tasks. In general, society presumes caregiving is "women's work"; employers
may frown on or penalize you for engaging in caregiving at the
expense of your job performance.
Men may prefer tasks that reflect their traditional roles; for example,
money management, home repairs, and making major decisions.
But just like elderly husbands who are devoted to their aging spouses,
sons love their parents and feel a strong sense of responsibility for them.
When duty calls, many sons accept responsibility for direct, hands-on
care for elderly parents.
What You May Be Feeling
Whether male or female, if you are like most caregivers, you did not
plan for your new role. You might accept it with grace, but also with
considerable fear and trembling. You probably do not feel prepared to
address the myriad issues ahead. You want the best for your aging loved
ones, but you recognize your lack of knowledge. You are not sure which
symptoms are considered normal aging and which ones mean your elder
should see a physician.
You may wonder where you will get the time, strength, and energy
to care for your elderly loved one in addition to your job and other
roles. You might feel that your own mental and physical health are as
much at risk as that of your elder. The more vulnerable your elder becomes,
the more vulnerable you feel. In fact, many caregivers do encounter
physical illness, psychological stress, spiritual discouragement,
or all three.
If your aging loved one has not saved enough of his own money to
support himself financially, you may fear that he will become dependent
upon you and your resources. This could threaten your family's
lifestyle. Your personal dreams may be delayed while medical costs for
your aging loved one eat away at your savings-and your peace of
mind.
You might feel frustrated, angry, or even resentful. There could be
new restrictions on your personal freedom and new demands competing
with your personal goals. Tensions may mount, not only within
your immediate family, but also between you and your siblings. You
may debate or quarrel with them about decisions concerning your elder's
health care, living situation, or possessions. If you are a long-distance
caregiver, you might feel guilty, anxious, or out of touch as you
try to manage the care of your loved one with miles in between. In fact,
nearly 7 million Americans travel at least one hour or more to provide
assistance to older relatives. This common situation has its own set of
fears and challenges, yet with the proper help and resources, long-distance
caregiving can be done successfully (see "Honoring a Loved
One from Afar" on pages 33-38).
Perhaps becoming a caregiver has coincided with your own retirement.
Just when you expected to be free of work obligations, instead of
enjoying grandchildren, traveling, and hobbies, you are again facing
more work, this time the mundane, practical tasks of caregiving. Or
perhaps you are still in the midst of your working years and your children
have only recently become independent. You have been looking
forward to having time for other things: a delayed vacation, catching up
on time with your spouse, reromancing your marriage, starting your
own business, catching up on your sleep, or just having time to sit in a
chair and do nothing for once in your life.
Experts say it is normal to experience anger at yourself, at your
loved one, even at God. But in some communities and in some
churches, such feelings are difficult to address and may be shunned. So
in addition to your anger and resentment, you might also feel guilty just
for having these feelings.
Caring for an elderly loved one is often the emotional opposite of
raising children. You celebrated the passing of exciting milestones as
you raised your children. But the significant milestones of an elder can
be grim, leading to the inevitability of death. Simple tasks, like helping
your loved one eat or washing her face, are constant reminders of decline,
fraught with corresponding emotional overtones of grief and loss.
You may feel deep pain and sadness about the way life is going.
At times, you may feel abandoned by family, friends, or community
because they do not do enough to help. Or you may feel betrayed by the
medical establishment when it fails to provide the assistance you expect
from it. The culture, the community, and the church are often silent
about the difficult realities and challenges caregivers face. You may feel
invalidated and ignored when social institutions take your efforts for
granted or fail to articulate and meet your needs for assistance. Our social
institutions affirm young parents and give solace to the bereaved after
the death of a loved one. Caregivers often feel left out and left over.
Continues.
