Many older people and their families do
not fully understand the services that are available to
help them in their own communities. As a result, they
struggle alone with their problems when there are people
and organizations able and willing to help. Finding out
about these services and how to qualify for and use them
is a challenge.
Even if you don't need to use these services
right now, knowing that they are available is like having
"money in the bank." It can reassure you that
there are resources and people available to help you with
a variety of problems when you need them.
This chapter will discuss six types of services
that older people and their families sometimes need and
that are available in most communities: help in finding
community services, respite care, transportation, meals,
visiting nurses, home hospice care, and paying medical
or hospital expenses.
We recommend that you learn about
available services before problems arise. You
can do a more complete job of learning about available
services when you are not under pressure to deal with
a serious problem. If you need these services later, you
will know what to do and where to go immediately. It is
also a good idea to get help early - before problems become
severe. Then you can reject unsatisfactory helpers and
search until you find good ones. The older person will
then get to know and trust the people who give help. The
helpers can learn your caregiving routines before you
become stressed and you will know that you can depend
on them should home care become more difficult in the
future. Furthermore, if you know that people are available
to help, you are more likely to get help before taxing
yourself too far.
Your goals are to:
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Know whom to ask about community
services
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Know what services are available
in your community
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Know how to qualify for and use
those services
Getting help in finding community
services
There are many places you can go to for
help in finding services in the community. We suggest
that you try all of these since one source may know about
services that others do not. Depending on your situation
and income, the help may be from volunteers, may be paid
for by the government, or you may have to pay from insurance
or your own funds.
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Local Area Agency on Aging
Staff at the local Area Agency on
Aging are your best resource. You can locate their telephone
number in either the white pages of the telephone book
under "Area Agency on Aging" (sometimes called
Senior Center or Senior Services). It often is listed
in a blue pages section of the telephone book under
the same name in the County Services section. If you
cannot locate it, call your state Office of Aging listed
in the blue pages (see below) under the State Services
section. They will refer you to your local service.
Most counties have their own offices. Smaller or rural
counties sometimes share an office among two or three
counties.
Call the Area Agency on Aging and ask for a caseworker
to visit the home and listen to your concerns as well
as the concerns of the person you are helping. This
caseworker will make an appointment to visit the home
and will ask both of you many questions. Then the caseworker
will tell you about different sources of help, if they
charge for services, and will refer you to different
programs offered by their office as well as those available
in the local community.
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Agencies that help you find
services
Along with the Area Agency on
Aging, most communities have other agencies that specialize
in helping people find the services they need. They
have different titles in different communities or
parts of the country. Some examples are the Office
of Human Resources, United Way, religious agencies
(such as Catholic Charities or the local Councils
of Churches), and community mental health centers.
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Social workers at hospitals
or home health agencies
Social workers are professionals
with knowledge and experience in finding community services
to help older people and their families deal with problems
living at home. They deal regularly with community agencies
and know what services are available as well as which
agencies provide the best services. Social workers at
local hospitals or home health agencies will usually
be happy to talk to anyone living in their communities.
You can usually call social workers directly without
being referred. If you do need a referral from a physician,
tell the doctor who cares for the older person that
you want to talk to a social worker and ask for a referral.
Respite Care
The word respite (pronounced res-pit) is
new to many people. It means rest. In respite care, helpers
are sent into the home to stay with an older person so
the primary caregiver can leave, do errands, visit friends,
go to church, and have some recreation or rest. It is
often listed in the telephone book as "Respite Care
Services."
Many respite helpers are trained and skilled
in how to give basic nursing care and they are good listeners.
Most respite workers are women. However, you can ask that
a male respite worker be sent if that is the preference.
Respite workers can be employed by an agency,
be self-employed, or be volunteers. When they work for
an agency, the agency pays them and then bills you, an
insurance company, or county and state programs that support
the service. Most respite workers make a little bit more
than minimum wage, but you will have to give the agency
more money than this because you must also pay for the
time that it takes to supervise and schedule their work.
If respite workers are self-employed, they will bill you
directly.
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Select respite helpers carefully
Make sure that respite helpers are reliable and honest.
A good way to find this type of help is to ask staff
at the Area Agency on Aging for a list of agencies that
employ respite workers or for names of reliable self-employed
respite workers. Avoid hiring someone out of the newspaper
since there is a chance that you'll get a worker who
is there with bad intentions, such as stealing money
or abusing the situation in some way. Check
at least one reference before using a respite helper
who is not employed by an agency.
If you know people who are
satisfied with respite workers they've had in their
homes, ask them for advice for how to find reliable
workers. You may be able to use the same people since
many respite workers work more than one job at a time.
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Find out if you are eligible
for government assistance with respite costs.
The government will pay the cost
of extra help at home if the older person and family
are financially eligible. To find out if you are eligible
for government respite funds, ask a caseworker at the
Area Agency on Aging. If the older person is a veteran,
your local office of the Department of Veterans' Affairs
may be able to arrange to use their respite care units.
There may be a fee depending on whether the veteran
has a service connected disability and what his or her
income is.
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Ask local churches and service
organizations if they sponsor a Respite Program.
Some local organizations have home
helpers who are available to visit and stay with older
people. Sometimes these programs are coordinated by
volunteer nurses.
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If the older person resists respite
care
Not everyone welcomes extra help right
away. Having strangers in the home is a big change. Here
are some ideas on how to ease into respite care.
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Talk with the older person
about why you need extra help.
Be honest about your concerns and
what you need. The older person may be more willing
to try respite care if you say that you need help. That
way, he or she realizes that respite help is very important
to you and that accepting respite care helps you.
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Have the helper visit for a
short time to talk about the tasks to be done and when
to come.
Meeting someone face to face
takes away some of the worry about who this new person
is. Usually, after the first visit, the older person
will realize that the "stranger" is there
to help and be more willing to accept him or her.
Transportation
Getting transportation to and from medical
appointments and other places can be difficult for older
people who don't drive. As a caregiver, you may not always
be available to do the driving.
There are several things you can do to get
help with transportation.
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Ask for help from family and
friends.
Be very clear about the transportation
help you need when asking family and friends for help.
The more specific you are about what help you need,
the easier it is for others to judge how much time and
work is involved. Tell them
What days of the week you could use drivers
How long the trip takes each way
Whether the patient can be dropped off
Whether someone will meet the patient at the door
How much parking costs
How long the usual appointment lasts
Whether the patient needs help getting in and out
Whether a wheelchair or special equipment is involved
Whether you will reimburse them for the cost of gasoline
If you don't want to ask for help,
have someone else ask for you. Having someone else arrange
transportation is especially helpful when the older
person must go for frequent medical treatments, such
as for arthritis or cancer treatments. Church groups
will often arrange transportation for members and may
be willing to arrange drivers for non- Church members
as well.
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Ask the Area Agency on Aging
if they have a transportation program.
Many offices of the Area Agency
on Aging run transportation programs. Some offices have
vans that carry several older persons at the same time
and that also can carry wheelchairs. Sometimes these services
are free.
In addition, many Area Agencies on Aging have volunteer
drivers available. If your local office does not have
such a program, ask if a county office near you has a
transportation program.
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Use the county medical van.
If medical appointments are within
the county, many counties have van services that can help
you. If appointments are outside of the county, ask if
the transportation service crosses county lines.
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Ask local service clubs to help.
Local service clubs, such as
the Elks, Lions Club, Masons, American Legion, or Disabled
American Veterans sometimes have transportation programs.
If they do not, you could ask if members of these organizations
or their auxiliaries could schedule drivers or help with
transportation expenses. If a relative or friend belongs
to such a group in your community, ask them to explain
your need to their club or organization.
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Ask a social worker, caseworker,
or nurse to recommend paid drivers.
Do not try to get paid drivers
on your own. Ask caseworkers at the Area Agency on Aging,
or social workers or nurses at your hospital for guidance
in finding paid help. They understand the kind of help
you need and they have had experience with different agencies
and ways to get help.
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Ask if the medical treatment
centers or medical clinics have their own transportation
van service.
Some medical centers offer free
transportation to and from medical appointments. Usually
these go on a schedule and so riders must be prepared
to spend half the day at the doctor's office but many
older people enjoy riding with others who are having similar
experiences.
Meals
Older people living alone often have difficulty
preparing nutritious meals. Here are ideas on how to get
help with meal preparation.
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Ask about meal delivery programs.
Most cities and small towns have
"Meals on Wheels" programs that deliver meals
to the home. Many of these programs are for senior citizens
and can be found by calling the Area Agency on Aging
or looking under "meals" in the phone book.
The cost of the meal service varies and some people
are eligible for reduced rates. Usually, a hot lunch
is delivered with a cold meal to be eaten later in the
day. Meals are delivered five days per week and special
diets are available, such as diabetic, low sodium, and
low fat diets.
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Ask about agencies that help
prepare meals in the home.
Some home health agencies have
programs where a worker or home health aide comes to the
home a few times a week for one to two hours. They can
prepare meals, shop for food and supplies, run errands,
and do light housekeeping. Sometimes these people will
help prepare meals. Call the Area Agency on Aging or ask
a social worker at your hospital for help in finding an
agency that provides these services.
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Ask church groups or neighbors
to organize a home helper group that brings meals.
Many churches are happy to do
this and can do other chores, such as yard work or window
washing. Sometimes they arrange for their youth groups
to get involved in "Friendly Visitor Programs".
Home Nursing Services
There are 4 types of home nursing services:
visits from registered nurses and staff, visits from private
duty nurses, visits from nurses' aides, and home hospice
services for care near the end of life.
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Visits from Registered Nurses
A doctor can write a prescription for home visits by
registered nurses to do skilled nursing procedures,
such as teaching how to care for a wound or manage diseases.
Registered nurses can also come to the home for short
procedures, such as taking blood or urine samples to
the laboratory, helping with dressing changes on a wound,
caring for ostomy openings or IV sites. Nurses can come
once a week or, if necessary, every day to do these
"skilled nursing procedures." They can teach
you or the person you are helping how to give medicines
correctly and to manage care at home. Their visits are
often short (about an hour) and the cost is usually
covered by insurance (medical and other) if approved
by a doctor. They can also arrange for other kinds of
services such as social workers, speech therapists,
occupational therapists, physical therapists, or nurses
aides to give baths. Ask at your medical clinic or hospital
which home care agency they use and ask them to make
a referral for visiting nurse services.
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Visits from Private Duty Nurses
You can arrange for private
duty nurses to come to the home without a doctor's approval.
Visits from private duty nurses can last as long as
you want. For example, some families find it helpful
to arrange for nurses to stay 8 hours overnight. The
cost of this service is usually not covered by insurance
but be sure to ask, in case it is.
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Visits from Nurses Aides
You can arrange for nurses aides (also called attendants)
for personal care services, such as bathing, walking,
shopping, cooking, and light household chores. Sometimes
agencies have a sliding scale fee for this service because
the state or county has given them money to provide
"personal care services" in the home. They
usually stay at least four hours.
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Home Hospice Care
Hospice teams help people with terminal illnesses when
treatment is no longer to extend life but is primarily
to give the best possible quality of life prior to death.
Their services are available in most communities. Hospices
are often run by the local visiting nurse agencies and
their visits are covered by insurance or Medicare. Nurses
and social workers at the hospital or clinics will know
whom to call about hospice care and a hospice worker
can talk with you about their many services, including
managing pain, preparing for a natural death, helping
family members understand what is happening, and keeping
the older person comfortable and well cared for.
Hospice services are listed in the phone book, sometimes
under Hospice and sometimes under Nursing Services.
Ask for a referral from your physician's office. Hospice
staff will then visit you and explain what they can
do for you, your family, and for the person with advanced
illness.
Paying Medical Or Hospital
Expenses
It is important that you deal with
financial problems early before they become a crisis.
Don't put it off. The earlier you start working on these
problems, the easier they will be to solve. Following
is a list of things that you can do to help solve problems
with medical or hospital bills.
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Collect the facts.
The first thing to do is collect information
about the medical expenses that the older person has now
and expects to have in the future as well as his or her
financial resources, such as savings or trusts. You will
need this information to decide what financial help you
need and qualify for. If you do ask for help, you will
be asked for this information.
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How much is owed now for medical
expenses?
This is often difficult to know,
especially with the confusing way that many hospitals
and other health care organizations send their bills.
However, most hospitals and doctors' offices have someone
on their staffs who understand the billing forms. These
people can quickly go through a stack of bills and determine
exactly what is owed at this time.
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What future medical expenses
do you anticipate?
This could include expected medical
procedures as well as estimates based on past medical
costs.
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How much has been paid recently
for medical care?
This is very important information
to have since it helps you to estimate future expenses
and is necessary if you need financial assistance. If
the older person has insurance, ask the insurance agent
what has been paid out. Keep track of medical expenses
that are not covered by insurance since they may be
deductible from income taxes.
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What is the household income?
Household income is the total income
of everyone living in the same household with the person
you are helping. This information is often used to calculate
if he or she is eligible for financial assistance.
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Investigate spacing out paying bills or paying in installments.
To help with spacing out paying hospital
bills, contact the financial counselor or the business
or credit office in the hospital. They can help you to
set up a monthly payment plan. Some hospitals, doctors,
and pharmacies will submit bills to the insurance company
and then bill you for what the insurance won't pay. This
saves you from paying the bills and then waiting for reimbursement
from the insurance company. Ask your hospital or doctor's
office if they will do this.
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Investigate borrowing money.
Banks and other organizations which
lend money will want to know about your financial situation
and about money you expect to receive in the future. Collect
this information before you talk to them. Shop around
for the best terms and the most reasonable interest.
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Apply for financial help.
People on disability, veterans, and
people receiving vocational rehabilitation services often
qualify for financial assistance for medical treatments.
Other sources of financial help include the American Red
Cross, county boards of assistance, and United Way agencies.
Sometimes they will help with past expenses as well as
future expenses. These agencies are listed in the white
and blue pages of your telephone book. Hospital social
workers will often help you apply for help from community
organizations. You can either call the social work department
yourself or ask the doctor or nurse to refer you to them.
Social workers are usually the best
source of information about how to get help with medical
expenses and who qualifies for help. Most hospitals employ
social workers and, if the older person is a patient there,
you can make an appointment with a social worker.
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Ask family, friends, or community
groups and churches for financial help.
Family, friends and community groups
often help people in financial need because of illness.
Some community groups have funds to help group members,
but others, especially religious groups, have funds to
help anyone in need. Talk to members of community organizations
and churches about your needs.
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"I'm embarrassed to ask for
help. We've always taken care of ourselves."
Response: Things
have changed for you. Sharing the work will help you to
handle the emotional and physical strain of caregiving
and you will be able to give better care than if you tried
to do it all alone. Try getting outside help and see how
you like it.
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"When you apply for help
they ask personal questions that are none of their business."
Response: If
you don't want to answer a question, you don't have to.
Generally speaking, this will not affect whether you get
the services or not. Sometimes people wonder why agencies
ask questions that are already in their records. The reason
usually is that this information is not shared across
agencies or departments. Be patient and give them the
information they need.
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"I feel embarrassed and
humiliated not to be able to pay all of these bills."
Response: Many
people have been in the same situation. Medical expenses
are so large today that it is common for many people to
have problems paying them. No one should feel embarrassed
since the problem is not anyone's fault. You will find
that others will be very understanding.
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"I didn't handle money
in our family - other people did, so I don't know what
to do."
Response: If
handling bills and money matters is new to you, then get
help from someone who is familiar with budgets and paying
bills. Don't let things drift because then they can get
out of hand or you may have a financial crisis.
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"I can't pay for help
because I'm saving for a rainy day."
Response: That
rainy day is here. You deserve to get the care you need
but you have to pay for it.
Think of other obstacles
that could interfere with carrying out your plan
What additional roadblocks could get
in the way of doing the things suggested in this chapter?
For example, will the person cooperate? Will other people
help? How will you explain your needs to other people?
Do you have the time and energy to carry out the plan?
You need to develop plans for getting around these roadblocks.
Use the six problem-solving steps in the chapter on "
Using
the Eldercare at Home book to solve caregiving problems."
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How will you carry out your plan?
Don't wait! Start learning now before you
need help about how community agencies and volunteer groups
can help you. This will be valuable information that you
can use when you need it. If you have trouble getting
the information you need, ask someone to help you. Talk
to social workers at the hospital. They have had a great
deal of experience with these problems and can often be
creative in helping you to get the help you need.
If your plan doesn't work
If you are having some success but not as
much as you would like, you may be expecting too much
progress too soon. Be patient and keep trying. It often
takes time to learn how to use community agencies and
volunteer groups.
If you are feeling discouraged about finding the help
you need, ask someone else to help you. Sometimes people
who are not directly involved can see new ways to deal
with the problem.
Social workers are the professionals who have the most
experience with these problems. If the social worker whom
you talked to was not helpful, ask to talk to another
one.
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Other resources that may be helpful:
Web sites:
How to locate services:
http://www.aoa.gov/elderpage/locator.html
Resources:
http://www.aoa.gov/aoa/resource.html