Spiritual Care: A Guide for Caregivers (17 page)

Respite services, if they are available, are extremely limited.
They may or may not involve care in the person's home. They may
involve the services of a sitter, without any actual physical care. To
hire agency-supplied caregivers for respite is beyond the financial
capabilities of the average family. Unless the family has an
extended support system with individuals willing and able to provide needed services to allow able-bodied family members to leave
for an evening out or for a short vacation, it doesn't occur. My
dream is that someday churches will reach out to families with disabled members in a very concrete way, by providing low-cost
respite services.1

What can churches and communities do to provide respite?
The concerns Linda expresses are very real-for those volunteering to help, as well as for the families. When my father was homebound following a stroke, his friend Gene came faithfully every
week to take him to Rotary meetings. It was a wonderful break for my mother, but Daddy required help transferring to and from a
wheelchair. One day Gene wrenched his back trying to help
Daddy into the car. His back strain took months to heal, so Gene
stopped offering rides. Caring for disabled people requires knowledge and skill. Churches could also be legally liable if either a volunteer caregiver or the disabled person was injured. Parish nurses
may be able to teach proper transfer techniques to family caregivers, as well as instructing volunteers about legal limitations for
their involvement.

Churches and church-related agencies in many areas do provide limited respite help, but that does not usually include physical
care. The agency affiliated with my own church provides rides to
medical appointments, shopping, companionship, meals and spiritual support, but cannot offer any physical care. However, even
such limited services can be a tremendous relief to overburdened
caregivers. Volunteers receive a brief orientation and training, and
most of them feel a deep sense of commitment and fulfillment in
their ministry.

Some churches have actually started their own home care agencies with Christian nurses and home health aides from the congregation. Sometimes nurses within the congregation, especially
those not employed in nursing full-time, will eagerly volunteer to
provide short-term care. Perhaps a wiser approach, rather than
trying to provide direct services that require professional expertise or extensive training, would be to develop a fund so that the
church could offer certificates for an occasional "free night out,"
paying the bill for a caregiver from a nursing service.

Groups such as Handi°Vangelism and JAF Ministries2 provide
wonderful opportunities for children with disabilities to attend summer camps and retreats. Parents can get away for a real vacation while
their children enjoy being with other children in a safe environment.

Most caregivers eventually find themselves isolated from friends,
neighbors and the outside world in general. Caregiving consumes
not only all their time but their thoughts and emotions as well. A
confusing mix of compassion and anger may compound the isolation. Old friendships may feel awkward and uncomfortable as
caregivers lose themselves in caregiving. The freedom and apparently trouble-free lives of their friends may spark jealousy and disdain in caregivers.

Ellen belonged to a group of women who met monthly for
lunch. They usually worked on a craft project and spent some time
praying together. When Ellen's husband, Herb, became disabled
after an automobile accident, the group went out of their way to
include Ellen. Sometimes one of the other husbands would stay
with Herb so Ellen could get away. At other times the group met
at Herb and Ellen's house. As time went on, however, Ellen found
she had little to talk about with her friends. They were busy going
places with their husbands and other companions. Conversation
usually turned to their latest cruise or plans for the next exciting
venture. Ellen's routine seldom changed. She cared for Herb
every day. The days all blended together into a long, tedious routine. Her world no longer stretched beyond the borders of her
house or an occasional trip to the drugstore or supermarket.
Finally Ellen told her friends that she no longer wanted to meet
with them.

Ellen's outlook changed radically, though, when she began
meeting with a caregivers' support group at a neighboring church.
For the first time she found other people who were experiencing
the same feelings and situations. She poured out her heart, only to
find that everyone in the room could identify with the things she
was facing. They also shared their own stories, including the ways they had worked through difficulties, found resources for help
and overcome their own anger and resentment. They also prayed
for one another in a way that only someone who truly understood
could pray. The group helped Ellen see that getting out and doing
things that she enjoyed would really help Herb in the long run,
because it would refresh her to care for him without the resentment her self-imposed isolation created.

Where can you find a support group? Many local hospitals,
organizations and churches have support groups in place for caregivers as well as for those suffering from various conditions,
including Alzheimer's, chronic disabilities, drug and substance
abuse, AIDS/HIV, multiple sclerosis, chronic fatigue, mental illness and cancer. You can usually locate them fairly quickly by
contacting your pastor, parish nurse or hospital or by looking in
the "blue pages" of your local phone directory. A Christian support group will be especially helpful, because caregivers will find
prayer support and biblical encouragement as well as peer support. However, any support group is better than none at all.

If no caregivers' support groups exist to meet the need in your
community, consider starting one. The first step is to identify the
need. Who might benefit from this group? List the people you
think might appreciate a support group. Talk with them to discern
their interests and concerns. Next, enlist others to help. You will
need a facilitator with skills and training in leading support
groups, as well as a group of volunteers to provide respite care
while the caregivers are meeting. You will also want to find
resource people in the community who can provide education and
links to other services in the area. Some caregivers may need
transportation. Some may not drive; others will hesitate to venture
out alone. Once the support group is organized, advertise through
church bulletins and newsletters, visiting nurse and other home care agencies, hospitals and doctors' offices.

When Ken and Lisa first agreed to become foster parents for
eight-year-old Melissa, the whole congregation supported them
eagerly. Melissa came from a home where she had been sexually
abused. She was severely autistic and required constant attention.
She arrived with only the torn, soiled clothing that she was wearing. When word spread, the church collected a large supply of
used clothing and some lovely new outfits for Melissa. One Sunday-school teacher, who was certified in special education, agreed
to work with Melissa individually and attempted to integrate her
into the primary class.

Melissa did not cooperate. She frightened the other children in
Sunday school. Several of them stopped coming. Those who
remained were not kind. Finally Lisa decided that it was not fair
to disrupt the entire primary department with Melissa's behavior.
She kept her at home, alternating Sundays with Ken. But neither
Lisa nor Ken liked attending worship alone, so finally both
stopped coming to church. Their commitment to Melissa continued, and they finally adopted her, but no one at the church even
knew.

All too often caregivers quietly drift away from the church
community. It just takes too much effort to attend worship and
participate in church activities. The old adage "out of sight, out of
mind" comes true more often than not. Several years ago I served
on a committee that was considering how to make our church
buildings more convenient and accessible to people with disabilities. One committee member spoke up for many in the congregation, asking, "Why do we need to have ramps? We don't have
anyone attending worship in a wheelchair!" Of course we didn't--they couldn't get into the building if they did come.

Needs of disabled people and their caregivers may not be obvious. Many simply stop coming. Others put up a good front. They
work hard to get to church every Sunday, so no one looks at them
as particularly needy. Sometimes they grow increasingly ornery
and cryptic, so others tend to avoid them.

Christian caregivers often face the additional burden of guilt:
they think it is selfish and un-Christian to take care of their own
needs in the face of the overwhelming needs of others. Part of the
challenge in recognizing needs of caregivers comes in establishing
a supportive climate where they will feel safe in communicating
their anger, frustration and personal needs.

Here are some good ways to help the weary caregivers you
know:

1. Visit families dealing with chronic illness or disability when they stop
attending church events. Go often, and keep going. Listen carefully,
and provide spiritual care. Often, when you suspect a need or
concern, you can mention it in prayer. For instance, if you are
sensing that a caregiver is feeling guilty over his impatience with
his demanding, sick wife, you could pray, "We thank you, Lord,
that you understand how hard it is to care for someone day in and
day out without getting impatient...." That gives the caregiver
permission to share his feelings. He knows you won't be shocked
or condemning.

2. Provide safe opportunities for caregivers who do attend church to share
honestly. On the first Sunday of each month, several nurses in the
congregation set up blood pressure screening stations in the Sunday-school classrooms after the worship service. While monitoring blood pressures is important, the conversation that accompanies it outweighs any physical benefits. It provides an opportunity for people to talk about their deepest health-related concerns. Many times caregivers come to discuss their family member's
health needs but end up expressing their own. We end up discussing options and considering alternatives.

3. Don't hesitate to ask, `How can I help you?" You may have to be
more specific and offer some alternatives: "Could I stay with Joe
while you go to the store?" "Can I pick up some groceries for
you?" "We're having a great stew tonight, and I've made too
much. May I bring some over for you and Esther?" "How can I
pray for you today?"

4. Read materials that will help you understand the persons needs.
Books written by people who have lived through similar experiences-especially those whose faith has helped them-and brochures from the Cancer Society, Heart Association or other
reputable organizations will enable you to anticipate needs. When
shared sensitively with caregivers, they can provide helpful talking points. For example, you could say, "This pamphlet mentions
that caregivers often feel overwhelmed. Do you ever feel that
way?"

5. Know when to pull hack. When others recognize your helpfulness and generosity, you too may become overwhelmed. Learn to
set limits--know that you can say no. Find reinforcements so you
won't be doing all the work yourself. Ministering to others may
give you a sense of joy and fulfillment, but you also need to plan
for fun and relaxation. And don't slight your own family and
friends when caring for others.

Most of all, remember that you are not alone. Become familiar
with the resources in your community. Get to know the individuals in charge of various community services so that you can refer
people to them appropriately. Help them get connected. You may want to look for a support group for yourself. Parish nurses usually meet for support on a regular basis. These groups are often
organized by local hospitals, churches or the nurses themselves.
Nurses Christian Fellowship3 groups meet for Bible study and
prayer, as well as continuing education. Community volunteer
agencies often have monthly meetings where volunteers can discuss concerns and support one another. Churches with organized
volunteer ministries, such as Stephen Ministers,4 will usually offer
opportunities for prayer, Bible study and further training.

After looking for local support groups, resources and services,
you may want to explore national and international organizations
that offer help for caregivers. The Internet opens a vast array of
opportunities that increases almost daily. You can search for support groups, gather information about particular conditions and
organizations, and enter into "chat rooms" with others who share
your concerns. However, you can also find a lot of unreliable
information and strange treatments, so keep your discernment
skills sharp.

The following Christian organizations provide both written
resources and opportunities for learning and support: