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The word
respite (pronounced "res-pit") is new to many people. It means "rest."
Sometimes, you will see it listed in the telephone book under the ads for
local home health care or visiting nurse agencies, which often are called
"Respite Care Services." In this type of care, helpers are sent into the
home to stay with the person who has advanced cancer, giving family
caregivers and friends a chance to rest.
This type of extra help may be especially needed during the last months or
weeks of a patient's life. Only at this time do many caregivers admit they
are not sleeping properly, that they are tired, and that they are worn
down by emotional tension and stress. Respite helpers can assist by coming
in at night and talking to the person with cancer, by giving food or
drinks to this person, or by helping him or her to move in the bed.
Sometimes, respite helpers simply stay with the patient and allow the
caregivers time to run errands, visit friends, go to church, and spend
some time taking care of themselves. Respite helpers sometimes are trained
- families usually want trained helpers to visit rather than having to ask
other relatives or friends to help. They want to know that the helpers are
skilled in how to give basic nursing care, such as turning someone in bed
or giving a weak person a drink.
Most hospice respite workers are women; however, you can ask for a man if
that is your preference. For example, an adult man in a wheelchair might
want another man to help him with basic needs such as going to the
bathroom or washing. It often is best to find this help by asking the
hospice social worker or nurse to give you a list of agencies that employ
respite workers or the names of reliable self-employed respite workers. It
is best not to hire someone out of the newspaper. Instead, ask people who
either have used or are using hired respite workers for their
recommendations.
Respite workers can be employed by an agency, or they can be self-employed
or even volunteers. When they work for an agency, the agency pays them and
either bills you or your insurance company, county, or state. Respite
workers usually make a bit more than minimum wage. You will have to give
the agency more money than this, however, because you must also pay for
the time that it takes to supervise and manage their work. The agency
bills the county or state if those with cancer or their families are
"eligible," meaning that household incomes are low enough for the
government to pick up the cost of extra help at home. If respite workers
are self-employed, they bill you directly. Some volunteer respite workers
will offer to spend the night, but these volunteers usually are part of a
hospice.
Your goals
Call for help in locating respite workers.
Make sure the person with cancer is involved in all decisions.
Make sure those providing extra help are both reliable and honest.
When To Get Professional Help
The first question you should ask is whether you need help in locating
respite care services. As with most problems, you should plan ahead and
not wait for a crisis. The following signs usually point to a home care
problem that should be referred to a social worker, nurse, or some other
agency, such as your area Agency on Aging, for assistance in finding
helpers:
Call a social worker, nurse, or an agency such as your area Agency on
Aging for assistance in finding helpers if either of the following is
true:
-
You feel worn
out from the extra responsibilities.
Your health and well-being are important. If you are feeling worn out,
call and talk the situation over with hospice staff or a health
professional who knows about getting help in the home. Many times, a
person with advanced cancer is eligible to have a visiting nurse come to
the house and find out what your needs are. The nurses also can send out a
nurse's aide to help with bathing and bedmaking. Aides cannot stay longer
than 1 to 2 hours, however, and they usually cannot visit in the evening
or at night, which is when you may want to rest. If the person you are
caring for is not "sick enough" to have visiting nurses call on him or her
but is a senior citizen, you can call the local Agency on Aging. They can
send a case or social worker to your home to assess the situation and help
you find extra help. Sometimes, money from the county or state is
available to help pay for respite care workers; other times, you will be
asked to pay. Some towns and areas also have volunteers who are
experienced in helping people with cancer and their families.
-
You worry that
you will not be able to take on the extra responsibilities or physical
labor of helping a weakened person.
If you are worried about this, start getting extra help early. This has
many benefits. Both you and the person with cancer will have time to get
to know and trust the helpers. You can work out household routines with
them before you become stressed, and if the helpers do work out, then you
know that you can depend on them should home care grow more difficult in
the future. This knowledge can reduce some of your stress or worries about
handling future problems.
Here is an
example of what you might say when calling to get extra help at home
"I'm Melissa Watson, Shelva Mahoney's daughter. My mother is Dr.
Lindquist's patient. I've heard that respite help might be available to me
because she has advanced cancer."
What You Can Do To Help
There are at least two things you can do at home to find good respite
care workers:
Make sure you involve the person being cared for in all decisions.
Make sure those providing the extra help are both reliable and honest.
Make sure you involve the person being cared for in all decisions
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 it:
-
Talk over the
reasons you want to get extra help. Be honest about your concerns and what
you want.
The person you are caring for may be more willing to accept this situation
if you say that you need the extra help to keep giving him or her care at
home. This way, the patient realizes that It is very important to you, and
that he or she is helping you by accepting the extra helpers.
-
Set a time
limit on how long you will try the extra help to see what it is like.
For example, suggest that the respite helpers visit twice a week for 2
weeks, then talk over how things are working out and decide whether both
of you want to continue having the extra help. Maybe a new helper is
needed - if so, set a new trial period.
-
Have the
helpers visit for a short time to talk about the tasks they can do and
when they can come.
Meeting someone face to face takes away some of the worry about who a new
person is. After the first visit, the patient usually will realize that
the "stranger" is there to help and will be more willing to get to know
what this "visitor" is like.
Make sure
those providing the extra help are both reliable and honest
You want to be sure that extra helpers will not take advantage of the
person you are caring for, or of you as a caregiver. Although this problem
is rare, it is best to take precautions. Here are some ways to make sure
that extra helpers are reliable, honest, and safe:
-
Get the names
of potential helpers from hospice social workers, nurses, or your area
Agency on Aging.
Professionals who work with families that are coping with chronic illness
are the best people to ask about respite care services. They will explain
your options and their costs, and they can recommend workers who they know
are "safe" and are good helpers, will show up on time, and will treat
everyone in the family with respect. These are people with a good track
record. They will not be potential abusers, whether financially,
physically, or otherwise.
-
Avoid getting
the names of potential helpers from the newspaper or local flyers and
bulletins.
You take an unnecessary risk by hiring someone from of a newspaper or a
bulletin board where self-employed people advertise their services. Many
times, these people work out just fine. Even so, you increase the chances
of getting a worker who is there with bad intentions, such as stealing
money or abusing the situation in some way.
-
Ask someone
you know who either has used or is using extra helpers who you should
call.
If people you know are satisfied with the extra help in their homes, ask
them for advice on how to find reliable helpers. Maybe you can even use
the same helpers. Many respite workers can work more than one job at one
time, and volunteers may be willing to do this as well.
-
Call the
American Cancer Society, and ask if it has a volunteer respite program.
A few Cancer Societies have volunteer respite programs. Home visitors come
and relieve caregivers so they can rest, run errands, and take care of
their own needs. Some programs have visitors who will stay longer so that
caregivers can go to work, though it might take more than one volunteer to
cover an 8- or a 10-hour day.
-
Check at least
one reference before using a respite helper who is not employed by an
agency or is not a hospice volunteer.
Possible
Obstacles
Here are some obstacles that other caregivers have faced:
1. "We've never had anyone else help us before."
Response: Having helpers in your home takes some getting used to.
Even having professionals such as nurses or hospice workers visit is a
change. However, you probably will find that you get very close to these
people, and that you will look forward to their visits, advice, and
conversation. You will grow get close to respite workers and nurse's
aides, too. They will spend the most time with the person who has cancer,
and they can share support and love at a difficult period.
2. "The person I'm caring for doesn't want anyone else here."
Response: The person with advanced cancer may want to deal with
only one or two special people when it comes to bathing, changing the bed,
or other personal care tasks. It may take help from more than one or two
people to keep the patient at home, however, especially if caregivers are
working or have families of their own to look after as well. When this
happens, it is important to ask the person with cancer to try the extra
helpers for your sake.
3. "I feel funny having strangers come into my home."
Response: getting help at home can feel funny, especially if you
have never used it before. You and the person with cancer can try it for 2
weeks or so, then decide whether it is working. You probably will find
that you like the people who are helping you, and that their help is very
important. In fact, you may wonder later how you ever got along without
them. This has been the experience of many families who have cared for a
person with a chronic illness at home.
4. "It's too expensive."
Response: Lack of money to pay out-of-pocket fees should not stop
you. Often, you can get respite help for free from trained volunteers, and
in many states, respite help is paid for by the government. Ask a social
worker for help. If that fails, ask visiting nurses or hospice workers
what kinds of help you can get for free from volunteers or state respite
services. Some churches also have respite volunteer programs, and while
their volunteers often visit only those families belonging to that church,
some do make exceptions and are willing to help. It pays to ask. Of
course, if keeping someone at home is just too much, you can choose other
options, such as moving the person with cancer to a nursing home or a
hospice.
Think of other obstacles that could interfere with carrying out your
plan
What additional roadblocks could get in the way of the recommendations in
this plan? For example, will the person with advanced cancer cooperate?
Will other people help? How will you explain your need for help 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
four COPE ideas (creativity, optimism, planning, and expert information)
in developing your plans, and see Solving Problems Using This Guide for a
discussion of how to use the COPE ideas.
Carrying Out and Adjusting Your Plan
Carrying out your plan
Many times, people with cancer enjoy outsiders visiting and like the extra
help. If you do not like the helpers, however, then change helpers.
Agencies are accustomed to trying several people before the right one is
found. You can check on how well this home care plan is working by asking
yourself if having the extra help is worth it. You also can ask the person
with cancer how he or she feels it is working.
If your plan does not work
If finding extra help is a problem, review the When To Get Professional
Help section of this plan.
If the person with cancer refuses to try respite care, you may need to
find other ways to get the rest that you need, such as moving the patient
to a nursing home for a short time. He or she can return when you are
rested or if he or she decides that respite help may be better than
staying in the nursing home. Decisions like going to a nursing home do not
have to be final.
You can download this chapter or the entire Home Care Guide to Advanced
Cancer.
Reprinted with permission from the American College of Physicians.
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If children live
with pity, they learn to feel sorry for themselves.
If children live with encouragement, they learn confidence.
From Children
Learn What They Live, Dorothy Law Nolte |
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