"The caregiver often becomes the critical
factor in making the truncated doctor-
patient meeting work, preparing ques-
tions in order of importance, making sure
they are delivered forcefully (perhaps in
advance of the visit by fax, Email, voice
mail) and that they are answered.
Staunch sidekicks are more likely than
patients to hang tough as a doctor sighs
and looks at his watch."
- Adapted from In The Country of Illness
by Robert Lipsyte

---

There are different types of family caregivers. Some care-
givers are parents of children with physical, mental, or
emotional illness. Some are adult children of aging and
frail parents who can no longer care for themselves.
Others are spouses, life-partners, family members, neigh-
bors or friends, caring for loved ones suffering from an ill-
ness or disability. People can become caregivers gradually
when a loved one develops a progressive illness that
worsens over time, or they can be thrust into the role
unexpectedly when a family member has a sudden med-
ical illness, accident or injury.
Regardless of how you became a caregiver, you are about
to take on a new role for which you may not feel pre-
pared. It is normal for you to feel nervous or over-
whelmed about what is expected of you. You may experi-
ence a number of mixed emotions including anxiety,

---

Am I a Caregiver?
If you checked any of the boxes, then you are or will soon
be a family caregiver. How do you feel? Concerned...
Some people don't think of themselves as care-
Anxious... Angry... Resentful... Guilty... Accepting...
givers because caring for a loved one seems
Embarrassed... Shocked... Sad? It is completely normal
like second nature or a family duty. However,
to have many different emotions about taking on this new
in many ways, caregiving is like a new job. It
role. You may even find yourself experiencing a confusing
may require learning new skills, shifting previ-
combination of feelings all at once. Most people are not
ous roles, and tackling demanding tasks. In
order to best prepare yourself to care for a
trained or prepared to be caregivers, so the prospect of
loved one who is ill, you need to first think of
assuming these responsibilities can be frightening.
yourself as a caregiver.
You are a family caregiver if you currently or
soon will provide unpaid care to an ill, frail, or
disabled family member or friend by (check those
that apply to you) :
t Assisting with areas of personal care that
he/she can no longer manage (dressing,
bathing, toileting, feeding)
t Providing transportation and assistance (for
appointments, errands, medical emergencies
or crises)
t Helping with daily activities and maintaining
the household (grocery shopping, picking up
prescriptions, cleaning)
t Governing finances (paying bills, managing a
bank account, bookkeeping)
t Participating in medical/nursing care at
home (administering medications, perform-
ing medical and nursing procedures, commu-
nicating with the health care team)
t Providing emotional support and compan-
ionship (talking, reading, and listening)
t Organizing home health care (clarifying
expectations, supervising and communicat-
ing with homecare staff)
2

---

C O P I N G W I T H Y O U R N E W R O L E
the stress of caregiving. There are many places you can
turn to find someone who will listen and offer support
while you express your feelings:
s Support group at a local hospital
s Your church, synagogue, or mosque
s A psychologist, social worker, or therapist
s Internet chat rooms with other caregivers (see
Appendix G)
s National caregiver organizations (see Appendix A)
Address Your Feelings
s National or regional organizations specific to your
Although these feelings are expected and often
loved one's illness (see Appendix B)
subside on their own, they can be upsetting.
Some people have trouble adapting to the new
Boost Your Knowledge
situation. It is important to recognize if this is
Many new caregivers find that learning about caregiving
happening to you and, if so, to talk to someone.
and the patient's illness helps relieve their anxiety. The
Friends and family members are a great place to
remainder of this guide will give you practical information
start. Try not to think about being a "burden"
and tips to prepare you as a caregiver. At the end of the
on others or hold back in fear of their judg-
guide, you will also find listings of organizations, books,
ment. You are experiencing a big challenge and
and websites that offer all types of caregiving and dis-
it is okay for you to turn to your family and
ease-specific information.
close friends for help.
Helpful Resources for Caregivers (full listing in
Appendix A):
Sometimes you may not feel comfortable shar-
v National Family Caregivers Association
ing certain feelings with those who also have a
Maintains a peer support network that puts caregivers
relationship with the patient. However, this
in touch with others in similar situations and offers a
does not mean that you should ignore or hold
newsletter and other printed materials with informa-
these emotions inside. Finding an uninvolved
tion and resources.
party to listen to your concerns can be very
v Well Spouse Foundation
comforting and necessary during this time. The
Provides support to spouses/partners of the ill or dis-
more in touch you are with your feelings, the
abled through support groups, caregiver networks, and
better you will be able to cope when faced with
a bimonthly newsletter.
3

---

T A K I N G S T O C K
2. Decide which needs you can or would like to
meet on your own
Once you see exactly what caring for the patient will
require, you can assess your resources. There will be
caregiving responsibilities you can handle on your own,
and some that will require assistance. On the checklist,
check off all of the tasks that you will perform yourself.
3. Determine which needs can or must be met by
If you are the primary family caregiver for your
others
loved one, it will fall on you to work with the
Though you may feel the desire to do everything on
health care team and make sure that all of the
your own and not "burden" others, learning to ask for
patient's needs are met. This can be an over-
help is vital to minimize exhaustion ­ a condition called
whelming and strenuous task, especially if you
"burnout." This will also ensure that more of your
try to handle all of the responsibilities on your
loved one's needs will be met. Circle all of the tasks on
own. It may not even be possible for one per-
the checklist with which you would like or need help.
son to perform all of the duties required in car-
ing for your loved one. In order to gain some
control over the situation you must make a plan
of action.
There are five main steps in developing a plan
of action:
1. Determine the needs of the patient
List the activities that must be done for the
patient to be properly cared for. Use the
checklist at the end of this section to write
down all of the patient's needs, being as spe-
cific as possible.
4

---

5. Establish the need for outside professional help
You may find that there are patient needs that require
professional assistance, such as nursing care, trans-
portation, or respite care. You should not feel ashamed
or guilty if you don't feel comfortable performing cer-
tain medical procedures or need help with patient care.
Depending upon your relationship with the patient, it
may not seem appropriate to perform some of the
tasks yourself. Keep in mind that the patient may also
rather have professional assistance for more personal
care to help maintain a sense of independence, privacy,
4. Identify family and friends to whom you
and dignity. If this is the case, it is important for you to
can turn for help
seek the appropriate assistance. In Appendices C-F, you
Family members and friends may be able to
will find a list of local agencies and organizations that
contribute to caregiving in many valuable
offer such services. Also, if the patient has a social
ways, and are often willing to participate. It
worker from a hospital stay, he/she can be contacted to
helps to know who you can count on to give
help you think things through and make arrangements.
you a hand. It is also useful to know which
of your family and friends have skills in areas
that could be of use. On the "Assessing Your
Resources" page at the end of this section,
list all the family members and friends that
you can ask for help. Next to their names,
record any specialized skills or resources that
they may be able to offer. This may include
legal advice, knowledge about medical insur-
ance, cooking, money to spare for a loan, and
time to run errands or provide companion-
ship to you or the patient. Be sure to record
the person's schedule and when they are
available or have free time.
5

---

H O W T O A S K F O R H E L P
s Inquire about whether they would like to help out in a
particular area
s Clearly explain the tasks and what they could do to
help
s Make sure that they understand exactly what would be
helpful for you, as well as the patient
What you might say when asking for help:
Asking family and friends for help can be an
"Jane, I am having some trouble finding time to do every-
awkward and difficult thing to do. In fact,
thing I need to do to take care of my mom. I could really
many caregivers avoid asking for help and end
use some help with the cooking, watching her when I
up trying to do everything themselves. You may
have to go pick up the kids from school, and doing
find that once you take the step and ask some-
errands. If you would be willing, I think you could help
one for help, it is much easier than you expect.
with the errands since you live nearby and pass the shop-
Many times, family members and friends are
ping center on your way home from work. Do you think
willing, but just don't know how to help. You
you would be able to help out in this way?"
will likely find that once you ask, people are
grateful for the opportunity to assist you. You
may want to start with a small task, such as
asking the person to spend some time with the
patient or provide a meal.
Tips for asking family members or
friends for help:
s Sit down with them in person or find a quiet
time to speak on the phone
s Review the list of patient needs
s Specifically discuss areas in which you think
they could help
s Ask them if they would like to participate
6

---

"Taking notes has always helped me con-
trol panic, and taking notes shows doc-
tors that you are paying attention, that
their time is not wasted in explanation.
The prime reason for taking notes, how-
ever, is simply to have an accurate record
of what was said during what is so often
a tense and hurried meeting.
You will
want to think about what was said, you
will want to discuss it with others, per-
haps including other doctors. You will be
hearing words you don't understand,
that you may want to look up later in a
medical dictionary. Those notes will be
the foundation on which you will build
your own understanding of what is hap-
pening, that basis on which your deci-
sions about your life, or the life of the
person you are caring for, will be made.
Some people even tape-record medical
conversations, which is even better."
- Adapted from In The Country of Illness
by Robert Lipsyte

---

C O M M U N I C A T I N G W I T H H E A L T H C A R E P R O F E S S I O N A L S
Who Do I Call?
At any given time, there may be a variety of people
involved in your loved one's medical care. Depending
upon the diagnosis, there may even be a number of doc-
tors from different areas of medicine (specialists) working
with you and the patient. With so many people, you may
feel confused and unsure about who to ask for help.
Some health care professionals may be better equipped
than others to give you information or answers to your
As a family caregiver, you play a major role in
questions. It is important for you to know the appropriate
your loved one's medical care. This means that
person to speak to, depending upon the help you need.
you may be involved in making serious medical
At the time of the office visit or hospital discharge, ask
decisions, performing medical procedures, man-
the doctor who to call if you have questions. Also make
aging medication, monitoring the patient's
sure that you are familiar with each member of the health
health status, and reporting symptoms or health
care team involved in the patient's care.
concerns to the health care team. These are
important responsibilities, which can seem over-
Questions to Ask the Doctor:
whelming if you feel as if you are managing
v What days/hours is the office open?
things on your own. This chapter is about com-
v How are medical emergencies handled?
municating more effectively with health care
v When is the best time to reach the doctor by phone,
professionals. Effective communication can
fax, or email?
help you to:
v Which method of communication does the doctor prefer?
v Who can answer questions if the doctor is not available?
s Understand the patient's illness/disability
v Who can you call after hours or when the
s Know what needs to be done to attend to
doctor is away?
the patient's medical needs at home
v Who will have an up-to-date copy of the patient's file,
s Get the most out of your office visits/appoint-
including information about his/her condition, treat-
ments with health care professionals
ment plan, and medications?
s Recognize when to call the
doctor/health care professional
7

---

Members Of The Health Care Team
Physical Therapist (PT)
An individual who is licensed by the state and is educated in
Attending Physician (MD)
identifying, preventing, and correcting problems with the mus-
The supervising doctor who dictates the patient's
cles, bones, and nerves by physically manipulating affected
care. The attending may be the patient's general
areas.
practitioner, or he/she may be a specialist in areas
such as cancer, pain, or cardiology (heart disease).
Occupational Therapist (OT)
An individual who is educated in helping patients retrain
Fellow (MD)
their bodies or minds, and modify living/working arrangements
A doctor who has finished residency training, but
to perform tasks in new ways when recovering from an
is continuing training in a subspecialty. These
injury or illness.
doctors are assigned to work closely with
the attending physician.
Psychologist (PhD)
An individual with specialized training in the psychological,
Resident (MD)
emotional, and behavioral aspects of illness and patient care.
A doctor who is training in a specialized area of
Psychologists can specialize in different areas.
medicine for 3 to 5 years. These are the doctors
whom you will see most on the hospital floors.
Chaplain
An individual who is trained to provide religious and/or spiritu-
Medical Student
al support to patients, their families and their loved ones.
An individual who is still in the process of complet-
ing 4 years of medical school to become a doctor.
Patient Representative/Advocate
A staff member of the hospital who tries to resolve patient
Physician Assistant (PA)
complaints about the quality of hospital care, or hospital
A professional with special training that allows
policies and procedures.
him/her to assist the doctor by performing medical
procedures, ordering medications and tests, and
Hospital Administrator
communicating with patients.
A staff member of the hospital who knows the hospital
policies and standards, and resolves financial, operational,
Registered Nurse (RN)
and personnel issues.
A member of the health care team who assists
physicians by doing health assessments and advis-
ing patients on such things as diet and lifestyle.
On the next page, list all the members of the patient's
Nurses also perform clinical procedures, such as
wound dressings and injections, administering med-
health care team and their specialties. Make sure to write
ications and treatments, and teaching patients and
down their phone numbers and attach any business cards
caregivers how to continue medical care at home.
you have.
Nurse Practitioner (RN, NP)
A nurse with 2 to 4 more years of education and
training than an RN, which enables him/her to diag-
nose complaints, order tests, plan treatments, and
prescribe medications (in some states).
Social Worker (MSW, CSW, ACSW)
A member of the health care team who is trained to
assess patient/caregiver needs and resources, pro-
duce a care plan, give guidance, help coordinate
services, and provide counseling.
8

---

3 If the situation is still not improved or you are not satis-
fied with the result, the patient representative should
be notified.
4 Finally, if the problem is still not corrected, you can
report the problem to the hospital administrator.
(adapted from McFarlane & Bashe, 1998)
When Do I Call?
What to do if you have a complaint:
If you are not satisfied with your loved one's
You can call any member of the health care team at any
care or have a complaint, there are strategies
point in your loved one's illness, treatment, and its after-
for resolving the situation. Though your feel-
math. Doctors are very busy and often do not have a lot
ings of anger or frustration may be warranted,
of time for answering questions over the phone. If you
it will not help matters for you to vent these
have basic questions about the care of your loved one, it
emotions to the wrong person or in an improp-
may be best to call the nurse or physician assistant. They
er way. You should try to go through the appro-
usually have more time to help you and can look up infor-
priate channels and allow the hospital and staff
mation in the patient's chart or consult with the doctor.
to take care of the problem.
However, if you have concerns about larger issues, you
should not hesitate to ask for the doctor. For example,
In order to most effectively lodge a complaint,
you should speak to the doctor when:
follow the hospital chain of command:
s You would like to discuss the patient's diagnosis
1 Speak to the person you are dissatisfied
s There is a change in the patient's prognosis
with and give him/her a chance to respond.
s You are concerned about a new symptom
Many times problems arise out of miscommu-
s A new medication is not working or is causing
nications that can easily be cleared up.
negative side effects
s You want to find out about or discuss test results
2 If that result is not satisfactory, you should
s You think you need a referral for home nursing care
contact the primary nurse or doctor of the
patient and make them aware of the situa-
tion.
9

---

What Do I Say?
Tips for good communication with health care
professionals
s Be prepared before calling.
s Write down your questions.
s Know exactly what information you need to
know and why.
s Make sure that your questions are clear and specific.
s Be concise and stick to the issues.
s If you don't understand something, don't be embar-
Timing is everything
rassed to ask for a second explanation.
s Call in the morning and ask the secretary
s Repeat what was said to make sure that you under-
when the best time is to reach the doctor,
stand what he/she told you.
then call back at that time.
s Take notes or tape record doctor appointments so that
s Leave a message with the secretary in the
you remember what was said.
morning for the doctor to return your call.
Provide the secretary or answering service
Troubleshooting: What to do if...
with all numbers where you can be reached
There is a situation that you think might be an
at certain times, and make sure you are there
emergency:
at those times. This includes home, work, car
s Call 911 immediately if you are sure that the situation
phone, beeper or cellular phone.
is an emergency.
s Some doctors have specific hours when they
s If you are not sure, call the doctor or the emergency
take calls. Find out when this is, and call
room until you reach someone you can talk to.
during those times.
s Make sure you tell the person that you think the
situation might be an emergency.
Other options:
s
v
Use the word "emergency" when explaining the
If you have basic questions, and have
situation.
access to e-mail, ask if you can send the
s Do not hang up until you have the information you
doctor an e-mail.
v
need to help your loved one.
Write down your questions and
concerns and ask the doctor at the
What you might say:
patient's next appointment.
v See if you can get answers to your questions
"I may have an emergency and need to speak to a
doctor."
through other means, such as books, pam-
"I am concerned about [patient] and am not sure if this is
phlets, or the Internet.
an emergency. Can you help me?"
10

---

A nurse/physician assistant returns your call but you
would like to talk to the doctor:
s Thank the nurse for getting back to you.
s If you are certain that the nurse cannot answer your
question, explain that you would like to speak to the
doctor.
s Explain why you would like to speak directly with the
doctor.
What you might say:
The doctor does not return your call:
s Do not assume the worst. The doctor may be
"I really appreciate your getting back to me. However, I
am very concerned about [patient] and need/want to
out of town or unavailable at the time.
speak to the doctor directly. When will he/she be avail-
s Call the office secretary and ask when the
able to speak to me?"
doctor will be available so you can call back.
s Leave a message with the office secretary
stating that you really must speak with the
doctor as soon as possible.
s Be clear about what the problem is and why
you need to talk to the doctor
What you might say:
"I am worried about [patient]'s condition and
would really like to discuss the diagnosis with
the doctor."
"Will he/she be available to talk to me today?"
"What time do you think he/she will be able to
talk to me?"
"May I leave a message for him/her to call me
back at that time?"
-OR-
"Thank you, I will call back then."
11

---

M A N A G I N G M E D I C A L C A R E A T H O M E
Know when to call for an ambulance
There are certain instances in which recognizing an emer-
gency and calling 911 can save a person's life. However,
since ambulance service can be extremely expensive when
not covered by insurance, it is important to know exactly
when it is necessary. Always call for an ambulance
if a person...
s is unconscious
Medical Emergencies
s has chest pain or pressure
s has trouble breathing or is not breathing
When caring for someone who is ill, it is vital to
s has no pulse
know how to handle a medical emergency.
s is bleeding severely
Though it is possible to avoid many medical
s is vomiting blood or is bleeding from the rectum
emergencies by closely observing the patient for
s has fallen and may have broken bones
health changes, calling the doctor for advice,
s has had a seizure
and keeping the home safe, emergencies can
s has a severe headache and slurred speech
still arise. Having a plan to follow will help you
s has pressure or severe pain in the abdomen that does
remain calm if an emergency does occur. It can
not go away
also aid those who assist you in caring for the
­ OR ­
patient when you are not at home.
s moving the person could cause further injury
Post emergency information:
s traffic or distance would cause a life-threatening delay
To start, fill out the Emergency Information form
in getting to the hospital
at the end of this section to organize and con-
s the person is too heavy for you to lift or help
solidate important emergency information.
If you know CPR or other emergency procedures, you
Make sure that you list contact numbers, includ-
should call for an ambulance before doing anything else.
ing the patient's doctors and other members of
Once you make the call, you can care for the patient until
the health care team. This information should
help arrives.
be photocopied and put in places that are easily
accessible, such as next to the telephone and
(Adapted from Meyer, et al.,1998)
on the refrigerator.
12

---

Going to the Emergency Room (ER)
s Use good communication skills. Though the ER can be
Most people try to avoid going to the ER at all
a frustrating place, it will not serve you well to take
costs. This is usually based on past negative
your anger out on the staff. Try to be understanding
experiences with the ER. However, there are
and patient, while being assertive. To do this, follow
times when the patient's need for care is
these tips for better communication:
urgent, and you must take him/her to the
h Don't be afraid to speak up if you feel that the
emergency room. Though such a visit is rarely
patient's rights are being violated or if you are not
a pleasant experience, there are some things
satisfied with the patient's care.
h
that you can do to make going the ER more
Tell the health care professional about your dissatis-
faction with care in a direct way that is not demand-
satisfying.
ing or disrespectful.
s If you think that the patient's condition may
h Speak in a way that does not put the health care
lead you to the ER, pack a bag in advance so
professional on the defensive. When talking, use "I"
that you are ready to go if/when the time
statements, such as, "I don't like that my mother is in
comes.
so much pain," rather than, "Why won't you do
something about my mother's pain?" This sounds
s Make sure you are familiar with the patient's
less accusatory, and expresses how you are feeling to
medical history, in case the patient cannot
the other person.
speak for him/herself. Keep a list of impor-
h Be clear about what you and/or the patient need in
tant information, such as past health prob-
order to feel comfortable and content with the care.
lems, allergies, and current medications and
h Listen carefully to what the health care professional
dosages (a "Medication Schedule" is provid-
has to say and ask for clarification to make sure that
ed at the end of this section).
you fully understand what is being said before
s Be able to describe exactly what the patient's
responding.
problem is, when it started, what may have
h Be sensitive to the health care professional's limita-
caused it, and if the patient was given any
tions in his/her ability to help you and the patient.
medication or other treatments.
ER staff members are usually very busy, over-worked
s Know the patient's legal rights and responsi-
and tired. Don't assume that they are just unpleasant
or unwilling to help.
bilities while in the hospital. "A Patient's Bill
s For patients who go to the ER frequently (e.g. sufferers
of Rights" is a document developed by the
of sickle cell disease), try to develop good relationships
American Hospital Association outlining the
with familiar ER staff members. If you are friendly and
patient's rights regarding health care and
treat them with respect, you are more likely to receive
appropriate treatment from staff within the
the same treatment in return.
hospital (see page 17 for a copy of "A
Patient's Bill of Rights").
13

---

s Know the ER chain of command. If you are
Open the airway ­ Place two fingers under the point of
not happy with the care the patient is receiv-
the patient's chin and lift the jaw. At the same time, place
ing or if there is a problem with a particular
your other hand on the patient's forehead and tilt the
staff member, identify the appropriate person
head back.
to speak to. There is a nurse manager who
oversees the nurses and a chief physician
who supervises the residents and other
Check if the patient is breathing ­ Listen and look at
physicians. You should speak to one of these
the chest to check for breathing. Feel for breath coming
two people for problems with staff on the
out of the mouth on your cheek for 5 seconds. If you do
floor. If you still are not satisfied with the
not hear, see, or feel anything, the patient is not breath-
patient's care, you can always make a com-
ing.
plaint to the hospital patient representative
or administrator (see page 8 for a list of hos-
pital staff).
Check for a pulse ­ Place two fingers over the patient's
Adam's apple and slide the fingers toward you in the
Learn first aid and basic emergency
groove of the neck. Feel for the pulse for 5-10 seconds.
procedures
If you are not familiar with CPR or other emer-
Give "Rescue Breathing" ­ Remove any material from
gency procedures, and would like to learn, you
the patient's mouth or throat. Tilt the head back (see
can take a course from the American Red Cross.
opening the airway), rest your hand on the patient's fore-
The following are some basic tips about first aid
head and pinch their nose closed with your thumb and
and emergencies. You should always call 911 or
index finger. Take a full breath, place your lips around the
an ambulance before performing CPR or first
patient's mouth and blow into his/her mouth until the
aid.
chest rises. Remove your mouth and allow the chest to
fall fully. Continue providing 1 breath every 5-6 seconds.
To locate a Red Cross near you, contact:
American Red Cross
Give CPR ­ Place the heel of one hand over the lower 1/3
431 18th Street, NW
of the breastbone (where the ribs meet the breastbone).
Washington, DC 20006
Place the heel of the other hand on top of the hand on
(703) 206-7090
the breastbone and intertwine your fingers. Lean over the
www.redcross.org
www.nyredcross.org (for the New York area)
patient with your arms straight and begin press down on
the chest about 1-1/2 to 2 inches. Complete 15 chest
Check if the patient is conscious ­ Ask the
compressions, at a rate of about 80-100 per minute. Give
person a question and gently shake his/her
2 rescue breaths (see "Give Rescue Breathing" above).
Continue alternating 15 chest compressions with 2 rescue
shoulders. If there is no response, the person is
breaths.
unconscious.
14

---

Treat burns ­ Pour cold water on the burned area for 2-3
minutes. Remove any clothing or jewelry that are on or
around the burned area, unless they are sticking to the
burned area. Cover the burn with a sterile dressing. Do
not apply lotions, ointments, or fat (e.g. butter) to the
burn. Do not touch the burned area or burst any blisters.
Do not cover a facial burn.
Treat severe bleeding ­ If you have latex gloves, these
Treat choking ­ Ask the patient if he/she can
should be worn at all times while in contact with blood.
speak or cough. If the person cannot speak,
If not, you can use plastic wrap or layers of cloth. Using a
give the Heimlich Maneuver. Stand behind the
clean pad or dressing, apply direct pressure to the wound
patient, place your fist just above the navel,
for 10 minutes. If no bones are broken, raise an injured
clasp your fist with the other hand, and give
limb to above the level of the patient's heart. Lay the
quick, upward thrusts until the object is
patient down to reduce the chance of shock and minimize
removed or the person becomes unconscious.
blood flow. Apply a bandage over the original pad or
dressing. Wash your hands thoroughly with soap and
If the person becomes unconscious, give two
water after providing care.
rescue breaths. If they do not go in, sweep the
mouth with your finger, then give abdominal
(Adapted from VNAA, 1998 and Meyer, et al.,1998)
thrusts by straddling the person's legs, placing
the heel of your hand (one on top of the other)
directly above the navel and give inward,
upward thrusts. If breathing starts, lay the per-
son on his/her side with the head tilted back
and the top knee bent to prevent rolling for-
ward.
15

---

Reminder
If the patient has a signed Do Not Resuscitate (DNR)
Order, you must show it to the paramedics immediately.
Otherwise, they are required to perform CPR and other
life-saving procedures. The DNR Order must be kept with
the patient at all times in the ambulance, emergency
Troubleshooting: What to do if...
room, and hospital.
The person is injured, but conscious
1.Assess injuries
2. Call an ambulance (if necessary)
3. Treat injuries (see First Aid)
The person is unconscious
1. Call an ambulance
2. Open airway and check breathing
The person is breathing
1. Place the patient on his side or stomach
(only if spinal injury is not suspected)
2. Wait for the ambulance to arrive
The person is NOT breathing
1. Give "Rescue Breathing"
2. Check pulse
There is a pulse present
Continue "Rescue Breathing"
and keep checking the pulse
until the ambulance arrives
There is NO pulse present
Perform CPR until the ambulance
arrives
(Adapted from VNAA,1998)
16

---

Health care institutions must advise patients of their rights under
state law and hospital policy to make informed medical choices, ask if
the patient has an advance directive, and include that information in
patient records. The patient has the right to timely information about
hospital policy that may limit its ability to implement fully a legally
valid advance directive.
5. Privacy and Confidentiality
The patient has the right to every consideration of privacy. Case dis-
cussion,consultation, examination, and treatment should be conduct -
ed so as to protect each patient's privacy.
The patient has the right to expect that all communications and
records pertaining to his/her care will be treated as confidential by
the hospital,except in cases such as suspected abuse and public
health hazards when reporting is permitted or required by law. The
patient has the right to expect that the hospital will emphasize the
confidentiality of this information when it releases it to any other par-

---

Patients should also be aware of the hospital's obligation to be rea-
sonably efficient and equitable in providing care to other patients and
the community. The hospital's rules and regulations are designed to
help the hospital meet this obligation. Patients and their families are
responsible for making reasonable accommodations to the needs of
the hospital,other patients, medical staff, and hospital employees.
Patients are responsible for providing necessary information for insur-
ance claims and for working with the hospital to make payment
arrangements, when necessary.
A person's health depends on much more than health care services.
Patients are responsible for recognizing the impact of their life-style
on their personal health.
Hospitals have many functions to perform, including the enhancement
10. Continuity of Care
of health status, health promotion, and the prevention and treatment
The patient has the right to expect reasonable continuity
of injury and disease;the immediate and ongoing care and rehabilita-
of care when appropriate and to be informed by physi-
tion of patients; the education of health professionals, patients, and
cians and other caregivers of available and realistic
the community;and research.All these activities must be conducted
patient care options when hospital care is no longer
with an overriding concern for the values and dignity of patients.
appropriate.
11. Knowledge of Hospital Policies
The patient has the right to be informed of hospital poli-
cies and practices that relate to patient care, treatment,
and responsibilities. The patient has the right to be
informed of available resources for resolving disputes,
grievances, and conflicts, such as ethics committees,
patient representatives, or other mechanisms available in
the institution. The patient has the right to be informed of
the hospital's charges for services and available payment
methods.
Patient Responsibilities
The effectiveness of care and patient satisfaction with the
course of treatment depend, in part, on the patient fulfill-
ing certain responsibilities. Patients are responsible for
providing information about past illnesses, hospitaliza-
tions, medications, and other matters related to health
status. To participate effectively in decision making,
patients must be encouraged to take responsibility for
requesting additional information or clarification about
their health status or treatment when they do not fully
understand information and instructions. Patients are also
responsible for ensuring that the health care institution
has a copy of their written advance directive if they have
one. Patients are responsible for informing their physi-
cians and other caregivers if they anticipate problems in
following prescribed treatment.
18

---

Coping With Home Care
What to expect from the home care nurse:
s On the first visit the nurse will:
Some of the duties required in caring for your ill
h Review the patient's medical history and medications
loved one can be difficult for you to handle on
h Perform a physical assessment of the patient
your own. The patient may require technical
h Identify patient needs
medical care for his/her illness, disability, or
h Develop a plan of care with you, the patient, and the
injury, which you may not feel prepared to han-
patient's doctor
dle. In certain cases, home care services are
s During return visits, the nurse will:
covered by the patient's insurance. Other times,
h Review the patient's plan of care
it is necessary to hire a home care nurse or
h Coordinate services that the patient may need
health aide privately to help with medical
h Educate you and the patient as needed
and/or personal care of the patient. While these
h Report to the patient's physician about health status
people can help to reduce much of the nervous-
Tips for Preparing for Home Care:
ness that you may feel, they can also add a cer-
s Participate in making the care plan with the hospital
tain amount of stress. Having a stranger in
staff and home care agency.
your home takes some getting used to. It takes
s Familiarize yourself with the home care plan and know
time to get to know the home care worker and
what to expect, when the nurse or aide will be in the
to feel comfortable with him/her. There are
home, for how long, and what services will be
some things that you can do to help make the
provided.
transition as smooth as possible.
s Determine how the home care nurse, aide, or others
will be paid. If this service is not covered by insurance,
Consider home care when the patient
needs:
make sure you discuss and agree on the fee for each
s Home assessments for an unstable physical
home care team member.
illness, such as cardiac, respiratory, or kidney
s Know who to call if you need help when the home care
diseases
worker is not scheduled to be there. There should be
s Wound care
someone from the home care team/agency available for
s Incontinence care, including Foley catheters
you to contact 24 hours per day.
and ostomy care
s Have all medications, insurance cards, and hospital dis-
s Diabetic instruction
charge information available at the first visit from the
s Home rehabilitation
visiting nurse.
s Medication monitoring or education
s Ask to be educated about the patient's needs and any-
thing you can do to help when the home care worker is
not in the house.
19

---

s Keep important patient information handy for
Troubleshooting:
the home health care worker. This includes
Many issues can arise when you are dependent on some-
emergency information, as well as current
one else for the care of the patient. You may find that
medications and advance directives (e.g.
you do not like the way the home care worker is doing
home DNR order, living will, or written infor-
something or that the person does not show up at his/her
mation about the health care proxy).
scheduled time. You need to know the proper way to
handle and resolve these and other problems with home
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care professionals in order to make the care plan work.
s Find out who is the target person/supervisor you should
speak to about any complaints or problems. This is
usually a nurse who is assigned to the patient's case.
Write down these important contact numbers below.
s If there is a problem, tactfully raise it with the home
care worker. If you do not feel comfortable with this, or
the problem persists, discuss it with the supervising
nurse who can tell you how to handle the problem or
take care of it for you.
s Do not hesitate to speak to the home care agency if
you feel that you need more help in the home. There
may be other resources available to you through your
insurance or other means that can be of help.
See Appendix F for how to find home health care services
in your area.
Contact numbers:

---

J U G G L I N G F I N A N C I A L E X P E N S E S
Budgeting Money
The best way to get a handle on the patient's finances is
to work out a budget. Start by writing down all regular
monthly expenses, including:
s rent or mortgage payments
s phone and utility bills
s transportation (car payments, gas, public transporta-
tion, tolls, parking)
Whether or not you share finances with the
s insurance premiums
patient, as a caregiver you will likely find your-
s food
self involved in financial matters. Even if the
s clothing
s child-care or elder-care costs
s medical expenses (prescriptions, medical supplies, other
medical costs)
s monthly loan payments
s taxes
s tuition
s legal and accounting fees
s other household expenses
s any other monthly expenses

---

Once you have written down all of these
Handling Health Insurance
expenses, add up the total, deduct this from
Receiving huge medical bills from the hospital or doctor
your monthly income, and review the amount
can cause a lot of anxiety. Reading the bill, figuring out
left. If you find that cash is low, you may want
how it will be paid, and determining which services
to try some of the following options:
should be covered by the patient's insurance company are
some of the problems you may face. Understanding the
s Prioritize bills. First pay for essential
patient's health care benefits can be confusing. Dealing
expenses, such as food, shelter, and
with health insurance companies can be frustrating.
medication. If possible, postpone payment
However, there are some things that you can do to help
of larger medical or credit card bills.
s
minimize the stress associated with these activities.
Ask your utility companies (gas, electric,
phone) about assistance programs they may
Read the insurance policy thoroughly
offer to help people who cannot meet pay-
Whether the patient has private health insurance,
ment.
Medicare, or Medicaid, there are certain services that the
s Find out whether the pharmaceutical compa-
plan will and will not pay for. It is important for you to
nies that produce your family member's med-
know what is covered by insurance in order to follow pro-
ication offer prescription medicine assistance
cedures that will maximize coverage, such as getting a
programs.
referral before seeing a doctor. It will also help to ensure
s Make sure your family member is receiving
that the patient is getting all benefits to which he/she is
his/her Social Security benefits (Retirement,
entitled. If you have trouble understanding the insurance
Disability, Survivor, Supplemental Security
contract, ask someone with more experience to help you
Income (SSI), or Black Lung benefits).
s Look into dependent-care tax exemptions or
or call the insurance company with specific questions
credits for family caregivers.
about what is covered.
s See if there are family caregiver assistance
Check medical bills
programs offered at your local agencies on
It is not uncommon to be billed incorrectly by the hospital
aging.
or doctor. Look over each bill carefully and make sure
s Consider other ways to bring in income, such
that the patient is not being billed for services that were
as working from home, asking family mem-
not received. If you find charges that are doubtful, call
bers for a loan, or requesting help with bill
the billing department of the hospital or doctor's office for
payment from other household members.
clarification.
Appendix C lists agencies that can assist you in
obtaining these and other financial options.
22

---

Don't panic about big medical bills
s Submit a claim as soon as you receive a medical bill.
If a huge medical bill arrives asking for payment
s Double check your work to make sure the information
of the "amount due," don't panic. Many times,
on the claim form is correct.
bills are sent out before payments are received
s Make sure to attach all supporting documents (e.g.
from the insurance company. This makes it look
copies of bills, receipts).
like the patient owes the hospital or doctor
s Keep photocopies of bills, submitted claims, payment
more than they really do. It can take up to 2
stubs from the insurance company, explanations of
months or more for insurance companies to
benefits, and insurance company findings.
process claims and send out reimbursement
s Call the insurance company if you have any questions
payments. Therefore, bills that are received may
or are unsure about anything to do with making a
not reflect what is really owed. If you are con-
claim.
cerned about the balance on the patient's bill,
s Keep notes on your phone conversations, including the
you can call the billing office at the hospital or
name of the insurance agent, the date of the call, and
doctor's office and ask if there are any insur-
the information you were given.
ance claims pending on the patient's account.
Be persistent
If so, you can wait until all payments are
Claims may be denied for any number of reasons, includ-
received from the insurer before paying the bill.
ing mistakes on claim forms, missing documents, or vary-
If there are no claims pending, you can review
ing practices of claims adjusters. If the patient's claim is
the health insurance benefits to ensure that all
denied, you can always send it again and try for a differ-
of the billed services are not covered by the
ent result. It may also help to ask the patient's doctor to
patient's insurance. If you find that there are
write a letter to the insurance company, explaining the
services on the bill that should be covered by
need for certain procedures. Sometimes, this will lead the
the patient's insurance, you can either tell the
insurance company to re-examine a claim. If you have
hospital or doctor's billing office, or submit a
tried these suggestions, and are still not happy with the
claim to the insurance company yourself (see
result, you can ask the insurance company about their
below).
procedure for resolving disputed claims. You can also con-
Submit claims properly
tact a lawyer or your state insurance regulator.
Some doctor's offices or insurance companies
require the insured person to submit claims,
(Adapted from McFarlane & Bashe, 1998)
rather than the billing office. If you have to fill
out claim forms and submit them, be sure to:
23

---

About health insurance
PRIVATE INSURANCE:
s Insurance that is covered under a group plan from an
MEDICARE:
employer or purchased by an individual.
s Health insurance program funded by the fed-
s There are basically two types of private insurance:
eral government.
h Fee for Service Plans require you to pay premiums
s Offers health care benefits to people 65 or
and a deductible, then you (or the doctor's billing
older, and to anyone under 65 who has been
office) submit a claim to obtain reimbursement for
collecting Social Security disability for at least
the cost of care.
2 years or has a serious disability, such as
h Managed Care Plans (HMO/PPO) are prepaid health
kidney failure.
insurance plans that cover the cost of services within
s Medicare has two parts.
a network of health care providers. Patients choose a
h Part A covers institutional care, such as
primary care physician who they must see for refer-
hospital costs, rehabilitation, home health
rals to other specialists. These plans do not usually
care, and hospice.
have a deductible for in-network visits, but do charge
h Part B covers medical expenses including
a small co-payment for doctor's visits and prescrip-
doctor's bills, outpatient tests, lab services,
tions.
and home health care. There is a monthly
charge to the patient for coverage from
For More Information:
Part B, and a deductible is also applied.
Medicare Hotline: (800) MEDICARE (633-4227)
MEDIGAP:
Medicare Rights Center: (800) 333-4114 or
s Private health insurance policy offered to
(212) 869-3850 (in New York City)
people who are eligible for Medicare.
s Pays for those services that are not covered
American Association of Retired Persons (AARP):
by Medicare, such as deductibles, co-pay-
(800) 424-3410
ments, and prescriptions.
Federal Hill ­ Burton Free Care Program:
MEDICAID:
(800) 638-0742; (800) 492-0359
s Health insurance program funded by federal
and state governments.
National Insurance Consumer Help Line: (800) 942-4242
s Offers health care benefits to those with low
income, such as those who are collecting SSI,
welfare, or public assistance.
s Eligibility depends on monthly income, per-
sonal assets, and state regulations.
s Covers most medical care and nursing home
costs, but is not accepted by all
hospitals/doctors.
24

---

s What is cancer?
s Who gets cancer?
s Common symptoms of cancer
s Treatment for cancer
s What you can do to help
s Pain management
s Helpful cancer resources

---

C A N C E R
Caring for a loved one with cancer is no easy
What Is Cancer?
task. Physical and emotional care can be time-
Cancer refers to a group of illnesses that result from cells
consuming and exhausting. Not only does it
in the body growing abnormally. These cells divide and
require caring for someone you love at home,
produce new cells in an uncontrolled way that can spread
but it also means facing your own concerns
throughout the body and cause damage to essential
about the diagnosis and eventual outcome of
organs.
the disease. Practical concerns, such as worries
about financial issues and time management,
When cancer spreads to other parts of the body, this is
are also common. The goal of this chapter is to
called metastasis. Metastases can occur when cancer
address some of these concerns.
cells enter the bloodstream or lymph system. These
systems circulate all over the body and allow the cells
Learning more about cancer can strengthen you
to travel.
in your caregiver role. This can be especially
true because of the stigma attached to a cancer
Tumors are masses (or lumps) that can develop as abnor-
diagnosis. The idea of cancer cells growing in
mal cells accumulate. Not all tumors are cancer. Benign
your loved one's body may conjure thoughts of
(non-cancerous or nonmalignant) tumors do not spread to
being attacked by an unknown force that can-
other parts of the body and are rarely life-threatening.
not be controlled.
There are four main types of cancer:
It can be difficult to learn about a disease when
you do not know where to start. This section
1 Carcinomas ­ cancers of the organs
provides general information about cancer,
2 Sarcomas ­ cancers of the muscles, bone, cartilage, and
including what caregivers can do to help their
connective tissue
loved ones. For more information on specific
3 Lymphomas ­ cancers of the lymphatic system
cancer types, see the additional resources listed
4 Leukemias ­ cancers of the blood-making system
at the end of this section.
101

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Cancer cells vary in how fast they grow and
Your family members and friends may wonder if they can
how they spread in the body. Most cancers are
"catch" cancer from the patient. The disease is not con-
defined by stage of growth using a system
tagious. It cannot be spread from person to person
developed by the American Joint Committee on
through the air, by contact or via blood transfusions.
Cancer for solid tumors (like cancer of the lung,
Rather, the risk of cancer can be inherited. This means
breast or colon). The stage is based on the size
that it can be passed through families from parents to
of the tumor and on how much the cancer
children. This is just one of the risk factors for cancer.
has spread.
These risk factors increase the chance of getting cancer.
Reducing them can lessen the risk.
v Stage I ­ Primary tumor only
v Stage II ­ Primary tumor, but larger than in
Cancer risk factors
Stage I
s Tobacco use
v Stage III ­ Primary tumor and metastasis to
s High fat diet and being overweight
lymph nodes
s Excessive exposure to sunlight
v Stage IV ­ Primary tumor and
s Drinking too much alcohol
distant metastasis
s X-rays and other sources of radioactivity
(Adapted from Dollinger, M., Rosenbaum,E., and Cable, G.
s Geographic area
Everyone's Guide to Cancer Therapy. Kansas City:Andrews
McMeel Publishing, 1997)
s Chemicals and other substances in the
environment (carcinogens)
s Unsafe sexual practices (through acquiring certain
infections, such as HIV or genital warts)
Who Gets Cancer?
s Family members who have cancer (certain types of
In the United States, half of all men and one-
cancer are hereditary)
third of all women will get cancer at some time
(Adapted from Dollinger, M., et al.,1997)
in their life. This statistic includes skin cancers,
most of which are easily treated. Millions of
people have cancer today or have had it in the
past. It affects all races and age groups,
although it is more prevalent in the elderly and
in certain geographical regions.
102

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Common Symptoms of Cancer
Waiting for test results can be difficult for patients and
their caregivers. This includes initial diagnostic tests and
It is important to know that these symptoms do
subsequent tests to identify returning or metastasizing
not mean that the patient has cancer. Only a
(spreading) disease. It is important that both you and
doctor can make a diagnosis.
your loved one get support from friends and family mem-
Cancer symptoms
bers at times like this. Using relaxation techniques to
v Thickening or lump in the body
relieve stress may also be helpful.
v Cough or hoarseness that does not go away
v Obvious change in a wart or mole
For more information on obtaining support, taking care
v Changes in bowel or bladder habits
of yourself and using relaxation techniques, please see
v Unexplained bleeding or discharge
the "You Have Needs, Too" section.
v Any sore that does not heal
v Unusual upset stomach or difficulty
swallowing
Diagnosing cancer
Treatment for Cancer
Doctors use various means to make a
The good news is that about half of all cancers diagnosed
diagnosis:
are now curable. Even with cancers that cannot be cured,
s Physical examination
symptoms are often greatly diminished by treatment.
s Laboratory tests ­ such as blood and
Treatment options, which depend on the stage and type of
urine tests
cancer, include:
s Imaging ­ x-ray, CT scan, and MRI are
v Surgery
examples of imaging
v Radiation therapy
s Biopsy
v Chemotherapy
v Biological therapy
v Hormone therapy
When a biopsy is done, tissue is examined
directly to see if it has the characteristics of
cancer. Tissue is obtained through a needle or
a surgical procedure. Biopsy is a good method
for diagnosing cancer with certainty.
103

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Cancer treatments can be almost as frightening
Receiving radiation therapy is generally not painful but
as the disease. You might imagine your loved
side effects can sometimes occur.
one being "cut" by surgery, "burned" by radia-
tion, or "poisoned" by chemotherapy. Under-
Radiation Side Effects
standing and learning about treatment options
s Fatigue or tiredness
can help you and your loved one feel more
s Nausea and vomiting
secure. It is helpful to talk about your fears
s Skin inflammation
with health care practitioners, family members,
s Appetite loss
and friends.
s Dry mouth
s Changes in sense of taste
For more information on how and when to
effectively communicate with your loved one's
health care team, please see the "Navigating
Chemotherapy
`The System'" section.
Radiation and surgery are often used to treat cancer that
is in one part of the body. Chemotherapy may be used to
treat cancer that has spread. Treatment can also be a
Surgery
combination of surgery, radiation and/or chemotherapy.
About 60% of people with cancer have some
Some chemotherapy chemicals can be taken by mouth,
sort of surgery. If the tumor is in one place and
others need to be taken intravenously (into the blood
can be removed without interfering with body
through a vein). Chemotherapy can sometimes cause
functions, then surgery may be the best
unpleasant side effects.
approach.
Radiation therapy
Radiation therapy is done to shrink tumors or to
make them disappear. This can be done by
directing beams of x-rays or other high-energy
rays at the tumor site. Radioactive materials
can also be placed in or near the tumor.
104

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Chemotherapy Side Effects
v Nausea and vomiting
v Fatigue or tiredness
v Appetite loss
v Hair loss
v Sore mouth
v Changes in taste
v Fever and infection
Be aware of the side effects of radiation and
Clinical trials
chemotherapy treatment. You can help reduce
Clinical trials are research studies that evaluate new treat-
and prevent them. You can also help by know-
ing when to contact the health care team.
ments. Those who take part in clinical trials are some of
the first to receive and benefit from new approaches to
For more information on how and when to
cancer therapy. These treatments have usually been test-
effectively communicate with the health care
ed with good results. Patients in trials are watched close-
team, please see the "Navigating `The System'"
ly by physicians and researchers. For more information on
section.
how clinical trials and cancer research might benefit your
loved one, contact the National Cancer Institute (see
resource information at the end of this section).
Biological therapy
Biological therapy uses treatments that help the
Complementary or alternative therapy
immune system do its job of fighting disease in
Complementary and alternative therapies are treatments
our bodies. This can be an effective treatment
that do not use known cancer drugs, or use approaches
for some cancers.
not common in the medical community. Some (such as
relaxation, visualization, and acupuncture) are so com-
Hormone therapy
monly used to control symptoms, that they are really
For cancers that need hormones to grow, hor-
mainstream approaches. It is important to research and
monal therapy can be an option. With this ther-
understand the risks and benefits of these therapies. The
apy, the production of hormones is reduced
National Center for Complementary and Alternative
through surgery or medication.
Medicine (NCCAM) Clearinghouse (listed with the
resources at the end of this section) is a good source
of information.
105

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What You Can Do to Help
Pain Management
s Notify your medical practitioner at the first
Your loved one may experience pain related to the cancer,
sign of fever or infection.
treatment, or other unrelated reasons. Cancer can cause
s Ask the patient's medical team about med-
pain as it spreads into soft tissue and bone, or presses
ication for nausea and vomiting.
onto nerves. Muscle spasms, constipation, and bedsores
s With nausea, feed the patient as if he/she
can also cause pain. You can help by making sure that
had the flu:
the patient receives proper treatment for pain when it
· Avoid fatty, fried, or spicy foods.
occurs.
· Prepare food for the patient when
you can.
· Serve food at room temperature or cold.
How You Can Help Obtain Treatment for Pain
s Help keep your loved one's mouth clean;
v Find medical practitioners who understand cancer pain.
brush teeth at least twice a day.
v Ensure regular visits to cancer pain specialists.
v Ask questions of doctors and discuss your concerns.
s Encourage the use of relaxation techniques
v Administer pain medication as prescribed.
to relieve stress and decrease nausea.
v Offer to massage sore or painful areas, if the physician
s Distract the patient with activities he/she
approves.
enjoys to decrease nausea.
v Encourage the use of relaxation techniques to relieve
s Make sure your loved one gets plenty of rest.
stress and decrease pain.
s Consider obtaining a wig for the patient
v Find ways to avoid and manage stress in the
before hair starts to fall out.
household.
v Distract your loved one with activities he/she enjoys.
s Remind your loved one that most side effects
v Watch for signs of pain or other discomfort.
are not permanent.
v Help the patient rate and record his/her pain in a daily
s Help rate and record the patient's fatigue in
pain journal.
a journal.
v Contact your loved one's medical practitioner if pain is
not relieved by medication.
For more information on how to treat fatigue
(including keeping a fatigue journal), nausea,
Please see the "Symptom Management at Home" section
vomiting, or skin problems, please see the
for other information on pain. This includes facts and
"Symptom Management at Home" section of
myths about pain medication as well as details on a daily
this directory. For more information on relax-
pain journal. For more information on relaxation
ation techniques, see the "You Have Needs,
techniques, see the "You Have Needs, Too" section of
Too" section.
this directory.
106

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H E L P F U L C A N C E R R E S O U R C E S
Organizations
the-art cancer profiler, a decision support tool that
s National Cancer Institute
helps patients make informed decisions about their
treatment. The site provides excellent caregiver
Public Inquiries Office
information (from the home page, click on Living
Building 31, Room 10A31
with Cancer and then on Coping with Cancer). The
31 Center Drive, MSC 2580
organization also offers other services via their toll
Bethesda, MD 20892-2580
free number, including free wigs and some financial
(301) 435-3848
support.
(800) 4-CANCER (800-422-6237)
http://cancernet.nci.nih.gov/wyntk_pubs/
cancer.htm
s Cancer Care, Inc ­ National Office
h This is the primary National Institutes of
275 7th Ave
Health organization for research on cancer.
New York, NY 10001
Services: (212) 302-2400
Toll free counseling line: (800) 813-HOPE (4673)
s Cancer Information Service (CIS)
Email: info@cancercare.org
Toll-free: (800) 4-CANCER (800-422-6237)
http://www.cancercare.org/
TTY (for deaf and hard of hearing callers):
h This is one of the few organizations offering financial
(800) 332-8615
support to cancer patients. Other services provided
h This is a program of the National Cancer
include an online database of cancer resources, edu-
Institute that provides excellent, up-to-
cational workshops, counseling, and support groups.
date, and easy to understand information
on cancer and cancer research. The infor-
mation is provided free of charge in both
s National Center for Complementary and Alternative
English and Spanish.
Medicine (NCCAM) Clearinghouse
P.O. Box 8218
Silver Spring, MD 20907-8218
s American Cancer Society
Toll Free: (888) 644-6226
(800) ACS-2345
TTY/TDY: (888) 644-6226
http://www.cancer.org/
FAX: (301) 495-4957
h This organization provides a Website with
http://nccam.nih.gov/
comprehensive information on many types
h This is the National Institutes of Health organization
of cancer, day-to-day living concerns, and
dedicated to exploring complementary and
treatment options. It includes a state-of-
alternative healing practices.
107

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Websites
s CanSearch
s MEDLINEplus Health Information
http://www.cansearch.org/canserch/canserch.htm
http://www.nlm.nih.gov/medlineplus/
h The purpose of CanSearch is to use a step-by-step
cancergeneral.html
process to assist online users in finding Internet
h MEDLINE is a service of the National
cancer resources.
Library of Medicine that provides excellent
links to Websites for a variety of topics
related to cancer.
Español/Spanish Information
s PDQ-Sobre Cuidado Médico-Pacientes: Cese del Hábito
de Fumar y Riesgo Persistente en el Paciente de Cáncer
s Cancer Net (a service of the National
(National Cancer Institute)
Cancer Institute)
http://www.cancernet.nci.nih.gov/clinpdq/
http://www.cancernet.nci.nih.gov/
supportive_pt_span2/510203.html
h An excellent resource, this site is your
gateway to the most recent and accurate
cancer information from the National
s ¿Qué es el Cáncer? (American Cancer Society)
Cancer Institute.
http://www3.cancer.org/cancerinfo/
load_cont.asp?ct=1&doc=63&Language=SPANISH
s OncoLink
http://www.oncolink.upenn.edu/
s Control del Dolor Causado por el Cáncer (Agency for
Healthcare Research and Quality)
h This is a comprehensive cancer support
Website that offers medical information,
http://hstat.nlm.nih.gov/ftrs/pick?
including information on symptom man-
collect=ahcpr&dbName=caps&cd=1&t=981993397
agement; psychosocial information,
including information on support groups
and extensive caregiver resources; and
recommendations from cancer experts for
books about cancer.
108

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"Malady can be dangerous for the lone
traveler. But you can't count on safety in
numbers either unless the people sup-
porting your journey are working togeth-
er, and in your interest. You can be sure
that a serious illness will rearrange some
of your relationships.
Fast friends will
unfasten and pull away; others will sur-
prise you with smart, concerned care. Let
people help you.
Assign them tasks if
you can, duties during a doctor's visit,
flower arranging, shopping, walking
your dog, a foot massage, medical
research.
Everyone can do something,
most would like to, and many need guid-
ance because they are simply unsure and
afraid. Appoint a spouse, close friend, or
colleague, who can act as a major domo
and coordinate your "volunteer tour
staff."
- Adapted from In The Country of Illness
by Robert Lipsyte
54

---

S E L F - C A R E C H E C K L I S T
Physical:
t Eating at least 3 meals per day.
t Eating healthy, well-balanced meals.
t Drinking enough water every day.
t Cutting down on fatty foods, sugar, caffeine, and alco-
holic beverages.
t Getting an average of 6-8 hours of uninterrupted sleep
While caring for your loved one, it is important
per night.
t Exercising for at least 20 minutes, 2-3 times per week.
not to forget about yourself. Try to make sure
t Taking time to relax daily.
that you are attending to your emotional,
t Seeing your own doctor and dentist according to
social, physical, and spiritual needs by:
schedule.
Emotional:
Spiritual:
t Watching out for signs of emotional distress,
t Taking time out to pray, meditate or practice another
such as depression and anxiety.
form of spiritual worship.
t Properly managing symptoms of emotional
t Speaking to a chaplain or religious figure to make
distress (e.g. anxiety, depression, anger, and
sense of the situation and your feelings.
stress).
t Attending services at your church, synagogue, mosque,
t Seeking professional help when unable to
or other place of worship.
cope with emotional distress.
t Reconnecting or establishing a connection with a reli-
t Talking with close friends or family about
gious community or group.
your feelings, or any changes in your mood
t Exploring your beliefs, even if you are not affiliated
that they have noticed.
with a formal religion.
Social:
t Trying to find meaning in your role as a caregiver.
t Visiting or talking with close friends and
family.
t Doing something you enjoy.
t Maintaining other activities that are impor-
tant to you, such as work, hobbies, etc.
t Trying to get out of the house at least once a
day.
t Taking a break from caregiving at least once
a week.
55

---

Y O U H A V E N E E D S , T O O
You may be thinking... "How can I focus on my
Though at times it may seem like your life revolves only
needs, when I hardly have enough time to
around your loved one's needs, you have a right to
breathe?" And although it may seem impossi-
address your own needs, too.
ble to find the time, you can't expect to put all
of your energy into caring for your loved one
CAREGIVER'S BILL OF RIGHTS
I have the right to:
without taking some time to care for yourself.
v
Caregiving can lead you to neglect your own
Take care of myself. This is not an act of selfishness. It
physical health, social life, and emotional well
will give me the capacity to take better care of my
being. This may occur for any number of rea-
relative.
sons, including lack of time, fatigue, inability to
v Seek help from others even though my relatives may
leave the patient alone, and feelings of guilt
object. I recognize the limits of my own endurance and
about enjoying yourself while the patient is
strength.
suffering.
v Maintain facets of my own life that do not include the
Whatever the case, ignoring your own needs
person I care for, just as I would if he or she were
can lead you to develop health problems,
healthy. I know that I do everything that I reasonably
become physically and mentally exhausted, and
can for this person and I have the right to do some
neglect relationships with your friends and fam-
things just for myself.
ily. With all of this added stress in your life, it
v Get angry, be depressed, and express other difficult
makes it almost impossible for you to provide
the best care for your loved one. This chapter
feelings occasionally.
was written to let you know that it's okay (and
v Reject any attempts by my relative (either conscious or
necessary!) for you to care for yourself in the
unconscious) to manipulate me through guilt, and/or
midst of caring for an ill loved one.
depression.
v Receive consideration, affection, forgiveness, and
A number of suggestions as to how to attend to
your needs are provided. By no means should
acceptance for what I do from my loved one for as
you expect to incorporate all of these into your
long as I offer these qualities in return.
daily life. Just remember that every little thing
v Take pride in what I accomplish and applaud the
you do counts and can help you feel better
courage it takes to meet the needs of my relative.
emotionally and physically.
v Protect my individuality and my right to make a life for
It is important for you to keep in mind that even
myself that will sustain me when my relative no longer
if you are the primary caregiver for the patient,
needs my full-time help.
it is not realistic for you to try to handle every-
(Adapted from Today's Caregiver Magazine Online)
thing yourself. Most likely, you have a life out-
side of the patient, filled with additional duties
and responsibilities.
56

---

E M O T I O N A L N E E D S
Since so much energy and attention are focused
Sadness/Depression
on the patient, you may begin to feel invisible ­
t Feeling down in the dumps.
like you don't matter. In their concern for the
t Frequent crying and tearfulness.
patient, doctors, nurses, other family members,
t Poor appetite and significant weight loss.
and friends may overlook how difficult the situ-
t Increased appetite and significant weight gain.
ation is for you. You must try not to let yourself
t Sleeping too much or too little.
get lost in caring for the patient. Always
t Loss of interest or pleasure in usual activities.
remember that you, too, have needs and
t Loss of motivation or energy.
desires. And, by addressing your needs, you can
t Feeling worthless.
help ensure that your loved one will receive
t Inability to think or concentrate.
better care.
t Thinking about death or suicide.
Paying Attention to
Anger/Frustration
Your Feelings
t Feeling easily annoyed.
Caring for your loved one can bring with it a
t Feeling irritable.
number of feelings and emotional reactions. You
t Feeling powerless to change the situation.
should not feel guilty or ashamed about any of
t Feeling like you want to give up.
your feelings. Being a caregiver and seeing
t Feeling helpless.
someone you love suffer from a physical illness
t Feeling like your loved one or the situation is not living
is difficult. You have the right to feel any emo-
up to your expectations.
tion that you have. You may even experience
t Acting aggressively toward others.
different emotions over the course of the
t Getting mad about little annoyances.
patient's illness or in different caregiving situa-
t Throwing or hitting objects.
tions. The following checklist can help you rec-
t
ognize whether you are feeling any of the emo-
Experiencing increased heart beat/pulse and breathing,
tions commonly felt by caregivers, and when
or clenching your jaws when confronting irritating inci-
you may need professional help to deal with
dents.
these feelings:
t Feeling hostile toward others.
t
Anxiety
Displaying irrational behavior.
t Worrying a lot.
t Feeling stressed out, edgy, or overwhelmed.
t Ruminating about little things.
t Having repetitive thoughts.
t Feeling short of breath.
t Having tense muscles.
t Feeling that something terrible is going to
happen.
57

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Grief
Tips for coping with your emotions
t Experiencing emotional pain associated with
Anxiety:
the loss of anything that is an important part
s Prepare yourself as a caregiver by reading about care-
of your life.
giving in books or on the Internet.
t Feeling sad about changes in the person you
s Make a list of all the things you are worried about and
love, and/or in your relationship with him/her.
then try to come up with what you can do to reduce
t Being disappointed about lost hopes, dreams,
your anxiety about each concern.
and plans for the future.
s Learn about your loved one's illness by talking to the
t Feeling upset about changes in your social
doctor, reading books or patient materials about the
life, and relationships with friends and family
disease, and using the Internet.
members.
s Talk to other caregivers who are in a similar situation
t Feeling disappointed about changes in your
by joining a support group, joining chat rooms on the
work/professional life and in your career
Internet, or linking up with other caregivers through
goals.
advocacy groups.
Guilt
s Watch a funny movie or television show, read a comic,
t Feeling like you have done something wrong.
or do something else that will help make you laugh.
t Feeling like you are not doing enough for the
s Distract yourself from anxious thoughts by using
patient.
imagery (see "Learning How to Relax" section).
t Feeling like you should not enjoy yourself
s Do some exercise. Doing physical activity can help
because the patient is unable to.
relieve your tension and clear your mind.
t Feeling bad about thoughts and feelings you
s Take some slow, deep breaths and practice a relaxation
are having.
exercise (see "Learning How to Relax" section).
t Having regrets about relationship problems
s Realize that your worries may be exaggerated in your
you have with the patient now or in the past.
mind and take control of these thoughts by putting
t Feeling like you could have done something
them in proper perspective.
to prevent the patient's illness.
s Consider whether it would be best to seek professional
t Feeling like you should not be the healthy
help.
one.
t Feeling like you have neglected other friends
or family members due to caregiving.
58

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Depression:
s Distract yourself from angry thoughts by using thought
s One of the best ways to ease depression is to
imagery or visualization (see "Learning How to Relax"
get out and get your attention on something
section).
s Calm yourself down with relaxed breathing and other
else. Though it may be hard to do, you will
relaxation techniques (see "Learning How to Relax"
be surprised how helpful making plans and
section).
getting out of the house can be.
s It does not do you any good to hold onto angry feel-
s Talk about your feelings to a close friend or
ings. Let go of your anger and move on by forgiving
family member, mental health professional,
the person with whom you are angry.
or support group.
s Talk to an objective, uninvolved party about your feel-
s Try to make some positive changes in your
ings to vent and get another perspective.
life, which will make you feel better.
s Laugh...think of something funny when you feel your
s Exercise. The natural chemicals that get
anger getting out of control. It is difficult to feel angry
released when you exercise can give you an
when you are laughing.
emotional boost.
s Try to keep your focus on the present situation and
s Consider whether it would be best to seek
don't let old anger or pain get confused with your feel-
professional help.
ings about the present situation.
Anger:
(Adapted from Sobel D. & Ornsten R.[1995] Defusing Anger and Hostility.
Mental Medicine Update, Vol.4[3],p 3-6.)
s Don't let anger bottle up. Express your feel-
ings in a calm constructive way as you expe-
Grief:
rience them.
s Allow yourself to grieve for changes in your life and
s Question whether you are justified in being
plans for the future.
angry. Consider the evidence and determine
s Try to focus more on the positive things in your life,
if you have a valid reason to be angry.
rather than the things you have lost.
s Think about whether getting angry will make
s Do not isolate yourself from family and friends who
a difference in the situation.
care about you.
s Consider the other parties' point of view
s Know that feelings of grief and loss are normal and
before getting upset.
that, given time, the acute pain will subside.
s Consider your expectations of the other party
s Express your feelings to the patient or others close to
or the situation to see if they are realistic. If
you.
not, try to change your expectations so that
s Take control of the situation by transforming your
you will not be so easily angered or disap-
expectations for the future.
pointed.
s Make a new plan for the future based on the positive
s Use "I feel..." language when expressing
things that you have in your life.
feelings to others rather than placing blame
s Talk to a mental health professional or join a support
or accusing them. For example, instead of
group.
saying, "you never help me around the
house," you might say, "I feel upset because
I think that I am not getting any help around
the house."
59

---

Guilt:
Even short breaks can restore and renew your emotional
s Guilt can come from feeling bad about think-
energy. However, taking breaks requires planning so that
ing "unacceptable" thoughts. For example, a
you can feel secure and comfortable during your time
common distressing thought is wishing the
away from the patient. You can begin by arranging for
patient would die to end his/her suffering.
alternate care for the patient for a short amount of time.
Try not to let yourself feel guilty about think-
Do something that you enjoy and let yourself and the
ing such things. Let these thoughts pass
patient become comfortable with the idea of your
without dwelling on them too much or beat-
absence. As you both become more comfortable, you can
ing yourself up about it.
begin to increase the length of your outside activities.
s Express guilty thoughts and feelings to a
Tips for planning time for yourself:
friend, support group, or mental health pro-
s Don't feel guilty about wanting or needing time away
fessional. Chances are, it will help you rec-
from the patient or from your duties as a caregiver.
ognize that your guilty feelings are natural
s Know that it is okay and necessary for you to have
reactions to the situation.
some time for yourself.
s If you have done something to feel guilty
s Make a list of people whom you trust to care for or
about, try to talk to the patient and seek
stay with the patient during your absence. Then ask
their forgiveness. You will feel much better if
someone.
you clear your conscience!
s If you don't have anyone in your social circle, you can
s Try to let go of your guilt and accept that you
obtain a volunteer or hire someone for a short time.
are doing the best you can under the circum-
You may be able to locate such people through local
stances.
agencies, churches, or synagogues (see Appendix D).
s Start off slowly, by making plans to spend a short time
s Most often, guilt comes from irrational
away from the patient.
thoughts, such as thinking that you have not
s Don't let the patient make you feel bad about leaving.
done enough for the patient. Don't let your
Having some time apart can empower both you and
thoughts get the better of you. You must
the patient, making you each feel a little more inde-
recognize that these are unjustified thoughts
pendent.
that are not necessarily based on any real
s Remember that as long as the patient has proper
evidence.
supervision, your absence will not put the patient at
risk.
Making Time for You
s Try to enjoy yourself and not worry too much while you
are away. Allow yourself time to focus on you.
Everyone gets stressed out and needs a break
sometimes-- most of all, caregivers! It is diffi-
cult to confront all of the feelings that you are
having when you are constantly with the
patient. It is vital for you to take some time
away so that you do not become overwhelmed
by the stress that caregiving can bring.
60

---

Expressing Your Feelings
It is common to spend so much of your energy supporting
the patient that you end up ignoring, holding back, or fail-
ing to recognize your own feelings about the situation.
Continuously ignoring your own feelings can be very dan-
gerous because it does not usually make them go away.
Instead, they can keep building up inside of you until you
become so emotionally stressed that you can no longer
handle the situation. For this reason, it is extremely
important for you to identify and address the feelings that
you are having. Here are some specific, appropriate ways
to express and cope with your emotions.
Tips for expressing your feelings:
s Identify what it is that you are feeling and allow your-
self to accept the emotions as a natural response to
caregiving.
s Do not bottle up your feelings.
s Share what you are feeling with the patient, if you feel
it's appropriate.
s Call a close friend or family member with whom you
can discuss your feelings.
s Write down your thoughts and feelings in a private
journal.
s Join a local support group for caregivers or families of
ill patients.
s Get a referral to speak to a professional therapist who
can help you understand and deal with your emotions.
s Speak to a chaplain, priest, rabbi, minister, or other reli-
gious figure.
61

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S O C I A L N E E D S
in your way. Much of this can be changed through proper
communication, and allowing yourself some time to spend
with friends. You need the support and love of your
friends and family to feel less alone and to cope better
with the challenges of caregiving.
Tips for maintaining social relationships:
s Reassure your friends and family that although you
may be busy, you do need and appreciate their support.
s Be open and share your experiences as a caregiver with
One of the most common complaints of care-
your friends and family so that they can try to under-
givers has to do with the reduction in their
stand what it is like for you.
social contacts and activities. Caregivers find
s Explain the patient's diagnosis with those who are not
that they are unable to visit with friends and
familiar with it.
relatives, go out, or do the things they enjoy as
s Invite friends and family over to visit or help while you
much as they would like. As a result, caregivers
are caring for the patient.
often begin to feel socially isolated.
s Take the time to call and catch up with those friends
and relatives with whom you have lost touch. Be sure
The Power of Social Support
to ask them about their lives rather than just talking
about your situation. This can serve as a great form of
As the primary caregiver of your loved one,
distraction.
most of your attention is probably spent on
him/her. You may find that you rearrange other
commitments and areas of your life to be with
the patient. Often, friends and relatives are
neglected because you are too busy, don't want
to burden others with your problems, or don't
think they will understand. You may also feel
as though friends have limited their calls or vis-
its, which may be the result of their own dis-
comfort with the patient's illness, not knowing
what to say to you, or feeling like they will be
62

---

Maintaining a Life of
It's Okay to Do Something You Enjoy
Your Own
If the thought of going out and enjoying yourself makes
It is not healthy to spend all of your time with
you feel guilty, you are not alone. Many caregivers feel
the patient, which can lead to resentment of
that enjoying themselves implies that they are abandon-
him/her if you don't feel like you are able to live
ing the patient. Taking a break and having fun do not
your own life. Just as it was normal for you to
make you a bad person, and certainly don't mean that
do things without your loved one before he/she
you don't care about the patient. On the contrary, outside
got ill, it is also okay now. You are an individ-
activities will help you maintain your sense of self and
ual with your own interests, thoughts, and
independence, clear your head, reduce stress, and improve
desires. At least some of these need to be
your relationship with the patient.
expressed and fulfilled so that caregiving does
not consume your life. Though work can some-
Tips for leisure:
times be an additional burden, it is a good way
s Plan an enjoyable activity to which you look forward at
for you to maintain a sense of purpose outside
least once a week.
of caregiving. If you are retired or unable to
s Remind yourself that getting out does not mean that
hold a job because of your caregiving responsi-
you are abandoning your loved one.
bilities, there are plenty of other things you can
s Get a beeper or cell phone so you can check on your
try.
loved one or be reached in an emergency.
s If you cannot get away from the house, invite a friend
Tips for maintaining your own life:
to spend some time with you at home.
s Don't feel guilty about asking or hiring some-
one else to take care of the patient while you
Why not try...
do something on your own.
v Going to a movie.
s If you don't work, look into jobs that would
v Going out to lunch with a friend.
allow you to work from home.
v Renting a movie.
s Accept invitations to social gatherings.
v Inviting a friend over to play a game of cards.
s Find a hobby or activity that you like and do
v Taking a walk in a nearby park.
a little every day.
v Borrowing a good book from a friend and discussing it
s Do something once a week that you enjoy.
after you have read it.
v Taking a class you are interested in.
v Joining a club or group activity.
v Attending a sporting event.
63

---

P H Y S I C A L N E E D S
Tips for proper eating:
s Eat 3 well-balanced meals per day, including breads
and cereals, milk and cheese, fruits and vegetables, and
lean meat, poultry, fish, and eggs.
s Cut down on fatty foods, sugar, and alcoholic bever-
ages.
s Eat healthy snacks in between meals (e.g. fruit, vegeta-
bles, low-fat cheese, yogurt, cereals, and crackers).
Caregiving can take a serious toll on your
s Drink enough water (6-8 glasses per day).
health, even if you do not have any previous
s Avoid drinking too much caffeine, such as soda, coffee,
medical problems. Poor eating habits, lack of
and tea.
sleep, and continuous stress can run you down
and put you at risk for fatigue, injury, and ill-
For more information on nutrition or a referral to a
dietician in your area, contact:
ness. However, there are some important
The American Dietetic Association/National Center for
strategies that can help you to maintain your
Nutrition and Dietetics
health:
216 West Jackson Boulevard, Chicago, IL 60606
(800) 336-1655 (Consumer Hotline)
www.eatright.org
s Diet
s Sleep
s Exercise
Fighting Fatigue
s Relaxation
Waking up numerous times in the middle of the night to
help your ill relative... Getting up early and going to bed
Diet
late in order to get everything done... Staying up all night
As a caregiver, it is not uncommon to get so
with a patient who can't sleep... All of these situations
busy that you forget to eat. Other times, you
can cause serious disruptions to your sleep and can lead
may find that it is easiest to grab a snack or
you to become exhausted. When you do not get enough
fast food on the run. While these things are
sleep for an extended period of time, you can lose energy,
okay once in a while, you should try not to
have trouble concentrating and remembering things, and
make a habit out of them. Your body needs
generally feel fatigued. Sleep restores your body and
nutritious meals to use as fuel to keep you
mind. So, it is important for you to get enough rest in
going. Paying attention to what you put in your
order to be able to maintain proper physical and emotion-
body, and following some simple suggestions,
al functioning. Ideally, you should be getting at least 6-8
can help keep you feeling strong and healthy.
hours of uninterrupted sleep per night.
64

---

The Benefits of Exercise
Though you may be very active during the day while car-
ing for your relative, there is no substitute for regular aer-
obic exercise. Studies show that exercise has many bene-
fits, including lowering blood pressure, easing depression
and anxiety, and decreasing physical and mental tension.
Exercise can help you ease your mind, take a break from
the patient, and stay in shape to foster good health. As a
caregiver, you confront a great deal of physical and emo-
Tips to fight fatigue:
tional stress that can build up if not properly addressed.
s Try to schedule your sleep around the
Exercise is one of the best ways to prevent yourself from
patient's sleeping pattern (e.g. if the patient
becoming overwhelmed by the burdens of caregiving.
sleeps during the day, take a nap at the same
time).
Tips for exercising:
s Rest when you get tired and after high-
s Consult with your doctor to determine an exercise regi-
energy activities.
men that will be right for you. Walking and swimming
s Avoid caffeine before bedtime so that you
are two great forms of low-impact exercise.
don't have trouble falling asleep.
s No amount of exercise is too little, but it is suggested
s Get outside help for the evenings if you are
that you work out at least 3 times per week for at least
unable to sleep because your relative is up a
20 minutes each time.
lot during the night.
s Be sure to stretch your muscles before and after you
s Every so often, recruit a friend or family
work out.
member to stay over and care for the patient
s If possible, try to work out with a partner (especially
while you get some uninterrupted sleep.
the patient) who can help keep you motivated.
s Pick a form of exercise that you enjoy.
s Listen to your favorite music to keep you going while
you are working out.
s Choose a workout that is convenient so that you are
more likely to stick with it.
65

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Finding Time to Relax
Taking a little time to relax can help reduce the physical
and emotional stress that come with caregiving. Your
body and mind can function only up until the point where
they become completely tense and overwhelmed. As little
as 10 minutes of relaxation per day can help you feel
more calm, rested, and able to cope with the stresses in
your life. See the "Learning How to Relax" section to
learn some helpful relaxation techniques.
Tips for relaxation:
s Practice! Learning how to relax is a skill that takes
time and practice -- try to do it as often as you can
until you feel comfortable with the technique.
s Take time out at least once per day to relax, do some-
thing you enjoy, and just get your mind off the illness.
s Do relaxation exercises in a quiet place where you will
not be disturbed.
s Practice relaxation at times when the patient is asleep
or does not need you.
s Take the phone off the hook and put a "Do Not
Disturb" sign on the door.
s Read a book, watch TV, or listen to music. These can
serve as relaxing breaks from the demands of caregiv-
ing.
s Schedule some time to pamper yourself by getting a
massage, facial, or something else you enjoy.
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S P I R I T U A L N E E D S
"Why?" "Why has God done this to someone I love?"...
"Why am I being punished like this?"... "What did the
patient or I do to deserve this?" Often, there is no reason
or logical explanation. Rather than spending your energy
trying to understand why bad things happen, it may help
to focus on trying to accept the situation, cope with it,
and allow yourself to learn and grow from it. Accepting
the situation as it is may involve transforming some of
Spirituality means different things to different
your core beliefs about God, religion, spirituality, and your
people. It may include faith or what provides a
future. Whether you are religious or not, you may be able
sense of personal meaning in life (and death).
to find faith in your existing beliefs about life and God.
Spiritual health can be sought through formal
Use any spiritual distress you feel to find meaning in the
religion, prayer not associated with any religion,
situation. Looking at the situation as offering you the
meditation, soul searching, and social ties with
opportunity for personal growth may be of some comfort.
family, friends and others. When dealing with
illness, spiritual issues often come to the fore-
Tips for dealing with spiritual issues:
front of the patient's life, as well as your own.
s Take time out to pray, meditate or practice spiritual
Illness and other adversity disrupt your sense of
rituals to nurture yourself.
meaning, your values, and even your faith.
s Speak to a chaplain or religious figure.
Addressing your own spiritual needs can help
s Attend services at your church, synagogue, mosque, etc.
you deal with these concerns and open the pos-
s Find faith in what you believe, even if you are not affili-
sibility of growth from the situation. In doing
ated with a religion.
so, you may be better able to accept the situa-
s Try to find meaning in your role as a caregiver.
tion, and even find some positive aspects in
s See if you can identify anything positive that can or has
your role as a caregiver.
come out of the situation.
s Think about what you can learn from the situation and
Why?
how it can make you a stronger person.
When something like illness happens to you or
someone you love, there is a need to make
sense of the situation in order to come to terms
with it. In this search for understanding, you
may find yourself asking and wanting to know
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Whenever you feel yourself getting angry or upset about
the situation, take a step back, look at the bigger picture,
and reflect on these positive thoughts.
Tips for making the best of
the situation:
s Think about ways that caregiving has made you a
stronger person.
s Think about why you have accepted this role and any
positive aspects of caregiving.
Making the Best Out
s Think about the positive ways in which caregiving and
of a Bad Situation
the patient's illness have changed your relationship
with the patient.
Of course you are not expected to be happy
s Consider if caregiving has brought you closer to the
about your situation as a caregiver, or about the
patient and/or other relatives or friends.
patient's illness. Chances are, becoming a care-
s Make a list of positive aspects of your relationship with
giver has led to many changes in your life,
the patient, shared memories, and what the patient
about which you are not happy. Also, facing the
means to you. Look at the list whenever you find your-
prospect of the patient's health deteriorating
self getting upset about the situation.
and having to watch him/her suffer may be of
concern to you. You could probably spend the
whole day thinking about all of the bad things
about the situation without a second thought.
However, where would that get you? While it is
perfectly normal and expected for you to mourn
for your losses, there is always another side of
the coin. Try to take some time to look at the
bigger picture and focus on any positive aspects
of the situation. Think about the good times
you have shared with the patient, how you feel
about having the patient in your life, and how
much would be missing if the patient were not
in your life.
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Or, maybe you will find solace in meditation or prayer if
you give it a try. Even if you are skeptical or hesitant, it
may be worth it for you to seek help from a spiritual advi-
sor, such as a chaplain or other religious figure. You might
be surprised to find that sharing your doubts about God
may make you confront deeper feelings, which can trans-
form your perspective. You may even find that the situa-
tion reestablishes your spirituality or faith in God. Use
your faith to help you cope with any obstacles along the
Keeping the Faith
way.
If you have found yourself questioning God and
Tips for keeping your faith:
losing faith due to your loved one's illness, you
s Speak to a chaplain or religious figure who has experi-
are not alone. You might find yourself having
ence with illness. He/she may be able to help you
such thoughts as, "What kind of God would
make sense of your feelings and the situation.
make someone I love suffer this way?" Feelings
s Give prayer, meditation, or other forms of spiritual wor-
of anger and resentment can make you blame
ship a chance.
God for what is happening to you and/or the
s Explore your beliefs and try to use them to accept the
patient. While these feelings of anger are total-
situation.
ly normal, it is important for you to let them go
s Talk to others in similar situations and see how they
after some time. Allow yourself to acknowledge
have integrated spirituality and caregiving.
your doubts about God, religion, and spirituali-
s Reconnect or establish a connection with a religious
ty. Then, consider ways in which you can
community or group. Even when you have lost faith,
explain and accept the situation through what-
this can turn out to be a great source of comfort.
ever beliefs you have. If your loved one is
dying, you may find that you can take comfort
in thinking about him/her going to a better
place, or joining other loved ones who have
passed on.
69

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B A L A N C I N G C A R E G I V I N G A N D O N G O I N G R E S P O N S I B I L I T I E S
fits, or personal satisfaction of working, you should not
give up your job without first trying to make it work.With
some convincing of your boss, you may be able to work
more flexible hours, where you could come and go at dif-
ferent times, but work the same amount of hours.
Another option would be to ask if you could work from
home on some days or at certain times. Also, if you are
able to afford cutting down on your hours, you might be
able to switch to a part-time position. Finally, "job shar-
As we all know, caregiving by itself can be a
ing" may be an alternative for you, which would entail
full-time commitment. Add in work, family, and
sharing the responsibilities of one job with other
other responsibilities and it can be enough to
employees.
drive you crazy. Unfortunately, those other
areas of your life do not just disappear while
Unfortunately, not all employers are flexible and/or under-
you concentrate on caring for your loved one.
standing about the plight of family caregivers. That is
As a result, caregiving can interfere with your
where the Family and Medical Leave Act (FMLA) comes in
performance at work, your relationship with
­ to protect working caregivers. This law states that every
your partner, or the care of your children. Your
U.S. employee working for a company that employs 50 or
life can become a very shaky balancing act,
more people is entitled to 12 weeks of annual unpaid
which could come crashing down if you don't
leave in order to care for a family member. This leave can
work out conflicts and make a plan to attend to
be taken in one block of time, or in days at a time.
other areas of your life.
Though employees do not get paid during this time, they
continue to receive health insurance and other benefits,
and are assured that their jobs will be there when they
Work
return. In any case, you need to decide what you can
Doctors' appointments, patient needs at home,
handle as an employee and a caregiver.
and unexpected crises make it nearly impossible
for you as a caregiver to maintain a regular
work schedule. However, keeping your job may
be very important to you for any number of rea-
sons. Whether it's for the salary, medical bene-
70

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Tips for coping with work:
Family
s Talk to your supervisor about your situation
The stress and time involved in caregiving can take a toll
and needs in a way that expresses your con-
on your relationships with family members. You may find
cerns, both as a caregiver and a dedicated
that you have less time to spend with your healthy loved
employee.
ones, less energy to play with your children, less intimacy
s Be understanding about your employer's
with your spouse, or less patience with your siblings.
needs and work with him/her to agree on a
Such changes can create feelings of resentment, abandon-
plan that works for everyone.
ment, and tension within family members, which can lead
s If possible, ask family members or friends to
to conflict. It is not uncommon to experience short
stay with or check in on the patient when
tempers, disagreements, fights, isolation and withdrawal
you are at work.
within the family.
s Look into home care options for the time
when you are at work (See Appendix F).
You may also notice transitions in the dynamics and roles
s Try to view your job as respite time away
of your family. Suddenly, you may be making important
from caregiving. It is time for you to focus
decisions that your spouse/partner used to make, you may
on concerns other than the patient, and have
feel like a parent to the mother or father who has always
time to yourself.
taken care of you, or you may be responsible for house-
s If on leave, you should check in with your
hold duties for the first time. These personal and family
employer frequently to stay aware of what is
shifts can be uncomfortable. It takes time for you and
happening at work, and to keep the employ-
other family members to get used to filling roles and
er informed about your situation.
responsibilities that are different than the ones you held
s If you feel that you are unable to handle your
in the past.
job, resign before there are any hard feelings.
If you have a spouse/partner, other than the
To find out if you qualify under the FMLA or to
patient, here are some tips for preserving a
learn more about it call:
positive relationship:
(1-800-959-FMLA)
s Talk openly with your partner about your concerns and
http://www.dol.gov/dol/esa/fmla.htm
emotions.
s Try not to take your frustrations out on your partner.
s If you spend a lot of time away from your partner due
to caregiving, make sure to express your feelings about
being away from him/her. Make the most of the time
you do have together.
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s If you need help and you think that your
s Pay attention to your children's behavior. If they are
partner can assist you, ask him/her.
acting different, this may be a sign that they are look-
s Reassure your partner about how you feel
ing for attention.
about him/her by telling and showing
s Make sure children know that they are loved by show-
him/her.
ing them affection and praise.
s Schedule periodic "dates" with your partner
s Try not to take out your frustrations on children when
when you can be alone and spend some time
they have done nothing wrong.
away from the house.
s Many times, young children have unrealistic notions
s Seek professional counseling if you and your
that they are responsible for their parents' distress. Be
partner are not able to communicate effec-
sure to explain to children that they are not to blame
tively, such as arguing frequently.
for any of the emotional or physical distress that they
s If sex is an important aspect of your relation-
may be witnessing in the family.
ship, you need to protect this. If you or your
s Prepare children on how to talk to other kids about the
partner have lost interest in sex, this may be
situation, in case it comes up in conversation.
due to exhaustion, stress, or depression.
If you have siblings, here are tips for avoiding
Seek professional help if you are having
and dealing with sibling conflict:
problems with intimacy in your relationship.
s If caring for a parent, share the responsibilities of care-
giving with your sibling(s) by dividing duties as evenly
If you have children, or there are chil-
dren being affected by the illness, here
as possible.
are some tips for helping children
s If necessary, ask your sibling(s) for help. Be clear and
adjust:
specific about how they can help you.
s Talk to children about the situation, giving
s Keep the lines of communication open with your
them a clear explanation without scaring
sibling(s) and frequently update them about how the
them.
patient is doing.
s Involve children in caregiving by telling them
s Have regular family meetings to discuss responsibilities
how they can help out.
and reassess the plan of care for the patient.
s Try to keep things as normal as possible in
s Address any issues with your sibling(s) directly. If you
your children's lives. Stick to a routine so
feel that they are not giving you enough help or sup-
that they do not feel like their world is sud-
port, let them know.
denly being turned upside down.
s If you are unable to get help from your sibling(s), have
s Make time to do something with your chil-
the patient suggest to your sibling(s) ways in which
dren as often as possible, so that they do not
they can help.
feel neglected.
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s Communicate openly with your in-laws about the
patient's illness and treatment.
s Make sure your in-laws are aware of the patient's wish-
es/advance directives to avoid disagreements if the
time comes that decisions must be made for the
patient.
s Talk through issues that arise between you and your in-
s If you are not satisfied with your sibling's
laws. Be respectful, but do not be afraid to express
help, try to accept whatever they do offer
how you are feeling.
and seek help from other relatives or friends.
s Do not bring up past conflicts between you and your
s Recognize if old sibling rivalries are re-
in-laws. Airing old dirty laundry will only serve to make
emerging and address them before they get
the situation more sensitive between you and your in-
out of control.
laws.
s Express your anger, resentment, jealousy, or
s Try to be forgiving and not hold on to hurt feelings,
other emotions regarding your sibling(s) by
anger, or resentment.
talking to a close friend, family member, or
s Remember that regardless of how you feel about them,
therapist.
your in-laws are still family. If you need to vent, talk to
someone other than the patient about your feelings.
If you have in-laws, here are some tips
for coping with possible problems:
s Remember that the patient is the foremost
concern and try to work with your in-laws to
ensure that the patient feels that way.
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---

Tips for multiple caregiving:
s Do not attempt to do everything yourself. Frequently
evaluate whether you can handle everything that you
are taking on before you continue.
s Recruit other family members or professionals to help
with some of the caregiving duties.
s Look into services that might help reduce your strain,
such as getting a baby sitter to watch the kids, hiring a
night sitter so that you can get some sleep, or getting a
Other Caregiving Duties
home health aide for a few hours a day to help with
the patient. Some of these services may even be cov-
If you are a caregiver who is responsible for car-
ered by the patient's insurance plan.
ing for more than one person, you face
s Force yourself to take breaks to renew your energy.
demands above and beyond those of other
s Don't carry the emotional burden of caregiving by your-
caregivers. Whether it's caring for children or
self. Share what you are feeling with close friends
an additional ill relative(s), multiple caregiving
and/or family.
makes it almost impossible for you to attend to
s Don't push yourself too hard. Slow down if you feel
your own needs. However, the added burden of
like you are doing too much.
caring for more than one person makes it all
s Change the situation if you find that you can't handle
the more important for you take care of your-
everything that needs to be done.
self. You must take some time to address the
s Look into other options for help at home (see
emotional strain and physical toll of caregiving.
Appendices D and F).
s Remember that your health is of utmost importance if
you are going to be able to continue caring for others.
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L E A R N I N G H O W T O R E L A X
Relaxation exercises are useful techniques to help relieve
tension, decrease worry, improve sleep, and make you feel
generally more at ease. These exercises use physical and
mental activities, which focus attention on calming the
body and mind, creating feelings of comfort.
Provided are descriptions of different relaxation exercises.
It is not necessary to use all the forms of relaxation that
are described. Instead, you should choose a form that is
easiest and most comfortable for you. It is a good idea to
try each and decide which you like best. However, all
relaxation should begin with relaxed breathing. This will
help prepare you for deeper relaxation. Once you master
relaxed breathing, you can continue to add other relax-
ation exercises to your routine. You can also combine a
few relaxation exercises, such as beginning with relaxed
breathing, doing some muscle relaxation, and then using
imagery.
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Relaxed (Diaphragmatic) Breathing
Relaxed Breathing
The best way to begin relaxed breathing is lying down on your
Since breathing is second nature to us, we
back. Once you are comfortable breathing in this position, you
rarely think about the way that we breathe.
can then try it sitting and standing.
Learning to breathe abdominally (through the
v Find a comfortable place and lie down on your back, or
diaphragm) can promote relaxation, which
sit in a chair.
improves physical and mental health. Over
v Breathe in through your nose slowly, in a natural, gentle
time, most people begin to breathe by moving
way.
v At the same time that you take in each breath, gently
their chest and/or shoulders. However, if you
expand your belly to fill with air. Keep your shoulders and
watch a baby breathe, you will see that they
chest as still as possible. Imagine that you are filling a small
breathe by moving their belly, which is the most
balloon inside your belly with air each time you inhale.
efficient way to take in oxygen and remove car-
v Breathe out through your mouth, emptying your belly and
letting it relax. As you breathe out, purse your lips to create
bon dioxide with the least effort. The
a little resistance to the exhale to keep it slow, like gently
diaphragm is the muscle that controls breath-
blowing on a candle to make it flicker. Breathe out as
ing. It is a dome-shaped muscle that sits
slowly as you can, making each exhale last.
beneath the lungs, above the abdominal cavity.
v When you finish your exhale, wait quietly until your body
naturally takes its next breath. Take your time.
When a breath is taken, the diaphragm flattens
v Each time you breathe in, imagine a balloon filling with air,
out, allowing the lungs more room to expand
and each time you breathe out, imagine the balloon
with air. When air is exhaled from the lungs,
deflating.
the diaphragm returns to its domed shape.
v Be sure to breathe in a slow, gentle, and natural way. If you
Though breathing is an automatic function, the
become dizzy or light-headed, take smaller breaths and slow
down.
movements of the diaphragm can be controlled
v It may help to put one hand on your stomach (over your
voluntarily with training. Learning how to con-
belly button) and one hand on your breastbone. Watch to
trol the diaphragm and the way we breathe can
see which hand is moving more when you breathe in and
be beneficial in many ways:
out. Try to get the hand on your stomach to move more as
you breathe, without forcing it.
s Allows the most efficient exchange of oxygen
You should practice diaphragmatic breathing frequently for
short periods of time. At first, maybe 10-15 times per day for
and carbon dioxide with the least effort
1-2 minutes each time. Try to practice in different situations,
s Promotes general relaxation
such as lying down, sitting, standing, on a bus/subway. With
s Improves circulation
practice, relaxed breathing can become a quick and easy tool to
s
combat stress.
Removes waste products from the blood
s Slows down heart rate and breathing rate
s Frees the mind
76

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Muscle Relaxation
Body Scan
v
Muscle tightness/tension is the body's signal
Begin by getting into a comfortable position and clos-
ing your eyes. Use some relaxed breathing to calm
that we are under stress. When we experience
yourself. Take about 4 slow, deep breaths.
stress for prolonged periods of time, we may
v Relax your whole face. Start with your jaw and
develop chronic tension in our shoulders, back,
tongue. Are you clenching your teeth? Are you
head, or other areas of our bodies. However,
pressing with your tongue? Let all the muscles of your
because we are so focused on external con-
jaw and tongue relax. Allow your teeth to be slightly
cerns, most of us are not usually aware of the
parted in a natural, unforced way. Your tongue should
tension in our bodies, unless it becomes painful.
be loose inside your mouth, resting against the back of
your teeth. Next, pay attention to your eyes and
Learning to relax your body not only helps
forehead. Make sure that you are not squeezing your
eyes shut or furrowing your eyebrows. Let your eyes
prevent muscle tension from turning to pain,
close so that your eyelids barely touch. Your whole
but can calm you mentally as well. Muscle
face is completely relaxed.
relaxation trains you to be aware of tension in
v Now, relax your shoulders. Let go of all of the tension
your body and control tight muscles that
in your shoulders and let them drop. Let any feelings of
respond to stress. Relaxing your muscles is a
tension in your neck flow away. Let your shoulders and
skill that takes practice, but once you know how
neck muscles sink into a pleasant state of comfortable
to do it, you can use it to reduce your emotional
relaxation.
and bodily tension quickly and easily.
v Relax your arms, hands, and fingers. Are you flexing a
muscle? Are you gripping anything with your hands?
Let your arms feel heavy and relaxed, like a floppy rag
There are two types of muscle relaxation:
doll.
Passive relaxation involves relaxing different
v Let any feelings of tension in your back, chest, or
muscle groups by thinking about them, while
abdomen dissolve and flow away. Let yourself become
progressive muscle relaxation allows you to
more and more limp and relaxed with every breath you
focus on and relax your muscles by first tensing
take.
them, which automatically forces your muscles
v Relax your legs, feet and toes. Let go of any tension
to relax. The following is a relaxation exercise
from your legs. Let your leg muscles sink into a deeper
that you can use to relax the muscles in your
and deeper state of pleasant comfort. Make sure you
are not pressing your feet or toes. Let your feet and
body. You may want to have someone else read
toes become completely relaxed.
it to you, or you can tape yourself reading it, so
that you can concentrate on relaxing.
For the next minute or so, let your entire body become
more and more relaxed. Enjoy this feeling of comfort and
relaxation, and when you are ready, open your eyes slowly
and remain quiet for another moment or two.
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Your Special Place
To begin, lie down, get comfortable, and close your eyes.
Use some relaxed breathing to calm yourself. Take about
4 slow, deep breaths.
Now, picture yourself in a quiet, special place. A place
that is very beautiful and feels peaceful and safe. You are
all by yourself and feel totally relaxed, safe, and at peace
in this quiet, special place. It can be a place in nature,
such as a beach...a lake...a forest...a field... a moun-
Imagery/Visualization
tain. Or it can be somewhere else, like a garden...a
Imagery, or visualization, is a technique that
church...a favorite room...somewhere you have been in
uses your imagination to create mental pictures.
the past.
It is used to focus your mind on something
Picture yourself in this quiet, special place as vividly as
pleasant and comforting in order to ease stress
you can, using all of your senses. Look around. Notice
what you see. The colors...shapes...what the light is like.
and anxiety, and reduce muscle tension and
Perhaps the blue of the sky, or the reflection of the light
pain. Imagery incorporates all of your 5 senses
upon the water. Notice what you see in your special
­ sight, smell, hearing, taste, and touch. You
place.
should try to practice visualization 1-2 times per
Notice the sounds, what you hear. Perhaps the lapping of
day until it becomes natural for you. If you are
water against the shore, or the sound of wind rustling in
a very visual person, this may only take a few
the leaves. Listen to the sounds in your quiet, special
place.
practice sessions. For others, you may need to
practice for a couple of weeks before you feel
Notice the smells in the air. Perhaps the smell of the salt
water...or the fresh clean smell of country air...or the
comfortable with it. The easiest way to practice
smell of pine needles in the forest. Notice the smells.
imagery is in bed in the morning when you
Feel how warm, or cool the air is against your skin. And
wake up and at night before you go to sleep.
picture where you are. Are you lying down?
With practice, you will be able to go to your
...sitting?...leaning against something?...standing?
special place just by closing your eyes. Try it
Use all of your senses to make this special place as vivid
using the following exercise.
and real as you can. Memorize the smells, sounds, and
sights. Continue to enjoy being in your special place for a
minute or two longer. Allow yourself to relax even more
deeply. Remind yourself that you can come back and relax
here whenever you want. When you are ready, open your
eyes slowly and continue to remain still and enjoy your
relaxation for another moment or two.
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Meditation
Meditation Exercise
Sit comfortably in a chair with your legs apart and your hands
Meditation is the act of focusing your attention
in your lap.
on one thing for a period of time. This is done
Keep your back straight and keep your head up with your chin
by repeating a certain syllable, word, or phrase
tucked in slightly.
(mantra) silently or out loud, or focusing on a
Close your mouth and breathe through your nose. Position
fixed object or action. It does not matter what
your tongue softly on the roof of your mouth.
word, object or action you choose to focus on.
Close your eyes or focus on a spot on the floor about 4 feet
It can be a relaxing word, such as "peace," an
away.
object, like a flower or candle, or an activity,
Take deep abdominal breaths, but do not force them. As you
such as concentrating on your own breathing.
breathe, focus completely on your breathing. Pay attention to
the feelings of the inhale, the point at which you stop inhaling,
Meditation allows you to see that you can
the pause between inhaling and exhaling, and the exhale.
choose to ignore thoughts that pop into your
As you exhale, say "one" to yourself. Continue counting each
head and control your emotional responses to
time you exhale by saying "two...three...four." Then begin
your thoughts. Like other relaxation exercises,
again with "one." If you lose count, start over with "one"
again.
meditation can decrease your heart rate, slow
your breathing, and ease your mind. The process
When you notice that your mind has wandered, note this, then
gently return to counting your breathing.
of meditation involves a game with your mind
If a particular sensation in your body catches your attention,
to try to keep it focused. You will find that it is
focus on the sensation until it goes away. Then return your
difficult to keep your mind concentrating on one
attention to breathing and counting your breaths.
thing for very long. Other thoughts will pop
When you first begin to practice, maintain the meditation only
into your head that can distract you from the
for as long as is comfortable, even if this is only for 5 minutes
meditation. The point of this exercise is to
per day. As you practice and meditation becomes easier, you
will find yourself wanting to extend your time. In terms of
attempt to keep your mind on the chosen word
relaxation, 20-30 minutes once or twice a day is adequate.
or object, and when your mind wanders, to
bring the focus back to the original object of
(Adapted from Davis M.,Eshelman E., & McKay M. The Relaxation and Stress
your attention. The more time you spend prac-
Reduction Workbook. Oakland,CA: New Harbinger Publications, 1988.)
ticing meditation, the more you will get out of
There are many other forms of muscle relaxation, visuali-
it. You should try to practice at least once per
zation, and meditation that might be right for you. If you
day.
would like more training in any of these techniques, you
can ask your physician for a referral to a cognitive behav-
ioral psychologist or therapist. You can locate classes on
meditation and stress management in the community. Or
you can learn some more on your own through self-help
books (see Stress Management Fact Sheet).
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"In June, Mother's doctor asked for a fam-
ily decision about stomach tube feeding.
Dysphasia, along with the dementia, was
sabotaging her ability to swallow enough
nourishment to sustain life.
When I
talked to Mother about the doctor's
request, I was grateful that she had the
clarity to let me know her choice. She
shook her head in disapproval. "
- Carol Ann Young, Author
- Adapted from Always on Call, Edited by Carol Levine

---

I N F O R M E D C O N S E N T
Depending upon your loved one's diagnosis, there may be
a number of different treatment options available, and
each option may have both advantages and disadvan-
tages. The patient has the right to make informed
decisions about his/her medical care. This is what is
referred to as "Informed Consent." In order to make
an informed decision you and the patient should know:
s Specific information about the patient's diagnosis and
recommended treatment.
s The goals of treatment (e.g. cure, symptom relief).
s The risks and benefits of treatment.
s What to expect after treatment (e.g. side effects, recov-
ery time).
s What to expect if treatment is refused.
s The costs for each treatment option, including what is
and is not covered by insurance.
s If there are any alternatives to the recommended treat-
ment.
The doctor should thoroughly discuss each of these topics
with you and the patient and allow both of you to ask
questions and voice any concerns. You and the patient
should be sure that you understand all of the information
before agreeing to or refusing treatment.
43

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A D V A N C E D I R E C T I V E S
The person who is appointed may be referred to as the
patient's health care agent, surrogate, attorney-in-fact, or
proxy. This individual can be a friend, family member, or
partner. It should be someone who is familiar with the
patient's views about medical care, including the role of
life-sustaining treatments like mechanical respiration, and
will uphold his or her wishes as medical situations arise.
Advance directives are statements made by
the patient that describe the treatments
In order to designate a health care agent, a form must be
that should or should not be given in the
filled out, which becomes a legally binding document.
event a medical situation arises which
This form must be signed by the patient, health care
requires a decision about therapy, and the
agent, and a witness. After the proxy form is signed,
patient is unable to speak for him or
hospitals, other health care facilities, and all health care
herself. For those living with serious, progres-
professionals are legally obligated to follow medical
sive illnesses, the future is unpredictable and
instructions given by the health care agent, if the patient
these patients should decide on treatments
is unable to communicate. In the event that the patient's
while they are mentally capable of doing so.
first choice is unable to uphold the patient's medical
Patients can be sure that their wishes are fol-
wishes, an alternate agent may also be chosen. Agents
lowed by executing advance directives with the
can be changed at any time if the individual decides that
help of a lawyer. While laws vary in each state,
someone else would be better able to represent him or
most recognize at least one of two advance
her.
directives:
Health Care Proxy forms can be obtained from the
s Health Care Proxy
hospital or by contacting:
s A Living Will
Choice in Dying/Partnership for Caring
Health Care Proxy
1035 30th Street, NW
Washington, D.C. 20007
A Health Care Proxy, also referred to as a
(800) 989-WILL (9455)
"Medical/Durable Power of Attorney for Health
www.choices.org
Care," is a legal form that authorizes a person
www.partnershipforcaring.org
of the patient's choice to make health care
decisions for the patient if he/she is unable to
do so.
44

---

Living Will
A Living Will is a set of written instructions that outline
the patient's health care wishes at the end of life. If the
patient completes a Health Care Proxy form, but also has
a Living Will, the Living Will provides the instructions for
the proxy. It is important for everyone to have a copy of
the patient's Health Care Proxy, including his/her doctors
and hospital, and that it is in the patient's chart.
Advantages of Advance Directives:
v Help patients express their future wishes about medical
treatment.
v Ensure that patients will not be given medical treat-
ments they do not want.
v Take pressure off family members if decisions must be
made about medical care and patients are unable to
communicate.
v Patients can choose a person they feel will best repre-
sent their wishes and can make serious decisions about
their health care.
v Patients can change living wills or health care proxies
at any time.
45

---

O P T I O N S F O R C A R E F O R P R O G R E S S I V E I L L N E S S
At all stages of the disease, effective palliative care
increases the likelihood that the patient will cope ade-
quately with the rigors of therapy and maintain a satisfy-
ing level of physical and psychosocial functioning.
End-of-Life Care
Palliative Care
Once it becomes clear that your loved one is unlikely to
recover, you will be faced with a variety of concerns, diffi-
Palliative care focuses on the physical, psy-
cult choices and decisions. Some of the biggest concerns
chosocial, and spiritual concerns of patients
for the patient revolve around fears related to suffering,
with life-threatening illnesses at any phase of
their disease. This offers patients many options
loss of dignity, and causing family members distress. It is
to ensure comfort and quality of life throughout
important to recognize that you and your loved one have
the duration of their illness. For patients with
options that can help make the end of life less stressful.
incurable diseases who are undergoing active,
Even though curing the disease may not be possible, doc-
life-prolonging therapies and have life
tors may recommend treatments that can control the dis-
expectancies that can extend to years, palliative
ease or its complications, such as:
care includes:
s Chemotherapy to continue to destroy cancer cells.
s Management of distressing symptoms, such
s Antibiotic therapy to help treat infections resulting
as pain and fatigue.
from an underlying condition.
s Restoration of function.
s Renal dialysis to take over function for the kidneys if
s Practical support for the patient and family.
they fail to work.
s Psychological interventions.
s Surgery to remove tumors or diseased organs.
s Concern for spiritual health.
s Clear discussions about the goals of care
When a patient's condition deteriorates, doctors may rec-
(with advance directives).
ommend treatments that are life-sustaining, such as:
For dying patients, palliative care includes com-
fort for the patient and preparation of both the
s Artificial ventilation to help the patient breathe.
patient and family for the inevitability of dying.
s Tube feeding and hydration to give the patient nutri-
This preparation may address a broad range of
ents that they are unable to take in by mouth.
psychological, social, family, and spiritual
s Cardiopulmonary resuscitation (CPR) to restore heart-
concerns.
beat and breathing if the patient stops doing so on his
or her own.
46

---

In making these important decisions you and your loved
one should become well-informed by speaking to the doc-
tor, considering your own personal values, examining
treatment alternatives, and understanding legal and ethi-
cal issues.
To help with this decision, consider these questions:
v What is the prognosis/outcome of your loved one's
illness?
For seriously ill patients, treatments can prolong
v How much of an impact would continued treatment
the dying process and lead to dependence on
have on your lives?
machines and tubes to live. Patients may expe-
v How much time would be gained from life-sustaining
rience more pain and discomfort and can
treatment?
remain unconscious for long periods of time
v What are your feelings about relying on machines and
with the use of such procedures and apparatus.
tubes to stay alive?
These factors can make it difficult to spend
v What is the level of discomfort the patient is willing to
quality time with the patient and can cause a
withstand to live longer?
great deal of suffering for both the patient and
v Would your loved one want to remain on life support
the family. Patients and caregivers should
even if he/she is not likely to regain consciousness?
understand that all of these interventions can
v How important is staying alive to the patient as
be refused. Patients can choose to have pallia-
opposed to being able to live independently?
tive/comfort care alone at any time. Many
v Are there any alternative treatment options?
patients also opt to have a do-not-resuscitate
(DNR) order, which tells health care providers
not to use CPR if the patient's heart and breath-
ing stop (see DNR Fact Sheet). These choices
can offer patients comfort, a more peaceful
death, time to spend with loved ones, freedom
from machines and tubes, and the possibility of
dying at home.
47

---

Hospice Care
Hospice care services
"I have been telling anyone who'd listen that hos-
Home Care Visits
pice nurses are angels. Hospice appeared in the life
of my wife and myself when we'd become desper-
Hospice care is provided by an interdisciplinary team of
ate as a result of her worsening cancer. Traditional
professionals consisting of nurses, physicians, social work-
medicine was no longer helping us. From the
ers, counselors, clergy, volunteers, home health aides, and
moment they walked through our door, the hos -
pice staff offered us compassion, professional skill,
special therapists. Team members make regular visits to
and 24-hour attention at every level ­ from med-
the patient's home and work together to plan and coordi-
ical issues to volunteer services to equipment deliv-
ery. They brought to my wife, and all at her bed-
nate care, such as:
side, a kind of peace."
s Providing medical care.
- Husband of a hospice patient
s Instructing the family on how to manage the patient's
physical and emotional symptoms such as pain, anxiety,
What is hospice?
or confusion.
Hospice is generally not a specific place--it is a
s Assisting with the personal care of the patient such as
specialized program of care for patients with a
bathing and feeding.
limited life expectancy and for their family and
s Helping with household chores.
s
friends. With its comprehensive array of med-
Offering emotional support to the patient and family.
ical and social services, hospice strives to meet
Transportation
each patient's unique physical, emotional, social
Ambulance service to and from an inpatient admission is
and spiritual needs, as well as the special needs
provided as part of most hospice programs. Outpatient
of the patient's family and close friends. The
transportation is provided on an individual basis based on
goals of hospice are to help the patient have as
the medical necessity of ambulance/ambulette care and
good a quality of life as possible, and to assist
individual insurance carrier coverage.
caregivers in their efforts to keep their loved
Counseling
ones in the comfort of their own homes. This
Emotional support is offered for both the patient and fam-
includes keeping the patient as comfortable as
ily through such means as counseling, music, prayer, or
possible by relieving pain and other uncomfort-
companionship. Depending on the needs of the patient
able symptoms, preparing for a death that fol-
and family, there are many avenues for support:
lows the wishes and needs of the patient, and
s
reassuring both the patient and family members
Social workers with whom one can talk and sort
through personal issues.
by helping them understand and manage the
s Chaplains to offer spiritual counseling consistent with
patient's care. This support assists patients and
one's faith and beliefs.
families through the process of facing, under-
s Music therapists to address feelings and offer comfort
standing and preparing for death.
through music.
s Volunteers to lend an ear and provide companionship.
48

---

The Hospice Team and What They Do
Nurse
The hospice nurse will visit weekly or as necessary. The
nurse will use this time to assess the patient's health sta-
tus, tend to any medical needs, determine needs for home
health aide services, and instruct and counsel the family
on caring for the patient. The nurse will communicate
directly with the doctor about the patient's health status
and adjustments in medications, which may be necessary
to maximize comfort.
Physician
Visits with a hospice physician can be scheduled for
patient evaluation. Otherwise, the physician usually sees
the patient as an outpatient, or, as an inpatient during
hospital admissions.
Social Worker
The social worker will visit the home for an initial assess-
ment to further understand how the illness is affecting the
patient and family. The social worker will offer emotional
support, counseling , and education about community
resources to the family. He/she will visit weekly or as
needed.
Home Health Aide
Under most insurance plans, hospice provides limited
home health hours based on assessment of patient needs
and evaluation of available resources. Home health aides
are trained and certified to assist with personal care to
the patient in the home. The home health aide works
under the direction of the hospice nurse with a written
plan of care. He/she will report any changes in the
patient's condition directly to the Nursing Supervisor and
will keep records of the patient's care as instructed by the
nurse. Services provided by home health aides may
include:
s Assistance with bathing, washing hair, shaving, mouth
care, dressing changes, toileting, and other personal
care.
s Preparing and serving prescribed diet and, if necessary,
helping the patient with eating.
s Assistance with prescribed exercises.
s Performing household tasks essential to patient's well-
being, such as making and changing the bed, doing the
patient's larehelping t[(patroom as mance)-ath9.09 persona11j-17.5124 -1.roomnges.
nhelping thcert(patrom a33 in(and ag the bed,)e p20 Tw 0.94nges)-1.8asent dure p35Tf -1.0226 -1.0833 Td(nee3(.)]TJ/)Tj4 Tw52.30.0039[(I.2(as an Car)-31.8etre)42.d(n)Tj/F2 1 Tf 01561rhan iennotsicir28.ev hou Tanag(aretecting the)Tj0 Tw 62.0039[1.0838(.)(nurse)42.2(.)]TJ0.848 Tw 9.31833 Td[(hospital ir28atnd cer(helrig the bed,)Tj234 Tw 0.4091 0 Td1-)Tj0 ifnd how thtakt ins[(Aan atien3 T as ion of t0833 Td(V)Tj0.2 16j-162.0039 th py csits wiTd[(ffiliatnd ssistection of th(Seg the bed,)e p04 Tw 21.091 0ure ty)9Tw 62.0039[1gram45 099.7 1 Tf T*[(Under most insurance plans))-1.82(as anealth aideks)Tj0.0156765j-162.0039 m(y alsosici(hosttnd the[(2ncewiTe ient[(3g the bed,)5j09 Tw 0.4 the 91 0 Td(-)Tj0)5j058j-162.0039 lprovid tiideandiodep rup cer5 dayag the bed,)3.2058jw 8.9745 07s.20RcewiTealth aide1d)Tj0.0 rhan ources to ienhtakt a0833 Td(V)Tj0.2 31j-162.0039 breakatrom ourcrigors Td[(p7 Td theourir lov h a written)Tj063Tw 62.0039[1on(Aan .0838-26of care)-ee3(.)]TJsona16jlar.0039 Br iave on aC, 1667 Td(n)Tj/F2 1 Tf Ae inotsanecting the VAresag the bed,-1.643Tw 0.94ngesAe iusuher-6erci-ary,
49

---

Chaplain
touching the patient's intact skin.
Chaplains are available for the patient and/or
s Keep hands away from your mouth and face while
family for counseling, prayer, and coordination
working with the patient.
with the family rabbi, priest, minister, or imam.
They will assist within the framework of the
s Disposable gowns should be worn when your clothing
beliefs and values of the patient and/or family.
is likely to be in contact with secretions and excretions.
Volunteers
Discard the gown after use in the regular trashcan.
Volunteers are able to help in many ways, such
s Use disposable needles and syringes and discard in a
as staying with the patient while the caregiver
sharps container. If unavailable, use a rigid, puncture-
goes out, helping with transportation, providing
companionship, assisting with personal care of
resistant container, such as a bleach bottle or coffee
the patient (e.g. massage), and many other
can.
areas in which the patient or family need help.
s Do not recap needles, and do not purposely bend or
Music Therapist
break by hand, since accidental needle puncture may
The music therapist may be available to work
occur.
with the patient and/or family to promote relax-
s Dispose of waste, such as soiled tissues, dressings,
ation, expression of feelings, and sharing of
memories with others through music.
bandages, and gloves in plastic bags that are closed
and secured tightly.
General guidelines for caring for a
s Wastes which cannot be flushed down the toilet should
hospice patient at home
be placed in two plastic bags and thrown directly into
While caring for a terminally ill patient at home,
regular trash pickups, not in a household trashcan. Be
it is important to use precautions to prevent
sure to use a plastic liner in the trashcan and a tight-
blood and other body secretions from coming
fitting lid to keep out animals.
into contact with any cuts or open areas on the
What to do as death approaches
skin. Hand washing before giving direct care
This particular phase of caregiving is likely one of the
protects the patient who is susceptible to infec-
most difficult life experiences that you will have. This is
tion. Hand washing after care will protect you,
an extremely emotional and overwhelming time. You may
the caregiver. The following precautions are
find it helpful to identify additional individuals you can
recommended by the Centers for Disease
call for support. It also helps to be informed about what
Control and should be observed:
to expect at the end of life so that you can be prepared
s Wash your hands thoroughly, especially prior
when the time comes. Although it is difficult to predict
to performing direct physical care and before
exactly when a terminally ill person will die, a combina-
eating.
tion of signs and symptoms can signal that the time is
s Use gloves to protect hands whenever there
getting close. Not all symptoms will appear at the same
will be excessive amounts of bodily fluid con-
time, and some may never appear. However, all of the fol-
tact or where breaks in the skin occur.
lowing symptoms are normal and expected at the time of
s Gloves are not necessary when handling
death. If you have any questions or concerns, do not hesi-
patient clothing and other articles or when
tate to call your hospice office.
50

---

s Hands, arms, feet, and legs may become cool to touch.
You may notice the underside of the body becoming
much darker in color. The skin may turn a bluish color
with purplish splotches. This is the result of blood cir-
culation slowing down.
What To Do:
v Use blankets for warmth to prevent the feeling of
being cold.
Signs and symptoms of
approaching death
v Do not use an electric blanket or heating pad.
s Decreases in the need for food and fluids
v Be aware that occasionally arms and legs may be cool
may occur. Your loved one will probably say
to touch, but the patient may state that he/she is hot
that he/she doesn't have an appetite and
and kick off the blankets.
isn't hungry. The body naturally begins to
conserve energy and requires less nourish-
ment. This is the body's natural response to
s Your loved one will gradually spend more time sleeping
the dying process. It is telling you that eat-
during the day and may be difficult to arouse at times.
ing and drinking are no longer helpful and
This is the result of a change in the body's metabolism.
that the body can no longer use food and
fluid properly.
What To Do:
v Plan time and activities with your family member for
What To Do:
those occasions when he/she seems most alert.
v Contact the hospice nurse so he/she can sug-
v Don't confuse withdrawal with rejection. Your loved
gest alternative ways to give medications.
one may not wish to carry on a conversation much of
v Offer fluids in small sips, but do not force.
the time, but may be comforted by your voice talking
v Allow your loved one to choose when and
or reading from a favorite book or verse.
what to eat or drink, even if this means little
v Soft quiet music may be comforting at this time.
or nothing will be eaten or drunk.
v Offer food and drink, but do not force.
v Nutritional supplements may be indicated in
some cases but, again, do not force.
v Discuss alternatives with the hospice nurse.
51

---

s There may be a change in bowel or bladder habits.
Loss of control of bowel and/or bladder may occur. If
there is a bladder catheter (Foley) in place, you will
notice the urine becoming dark, with the amount
decreasing as death comes closer.
What To Do:
v Ask the hospice nurse for pads to put on the bed to
s The patient may become increasingly con-
protect the linen.
fused about what time it is, where he/she is,
v Change pads as needed to keep the bed as clean and
and the identity of close and familiar people.
dry as possible.
The patient may also become restless, see
v Ask the hospice nurse to show you how to place pads
things that are not there, or pull at the bed
under the patient and other ways to keep the skin
linen. This is caused by decreases in oxygen
clean, warm, and dry.
circulation to the brain and changes in the
body's metabolism.
s Changes in breathing patterns may be noticed.
What To Do:
Irregular breathing may occur and there may be a
v Remind the patient of the day and time,
pause for 10-30 seconds where there is no breathing at
and who is there with him/her.
all. This is called apnea. You may also notice that
v Talk to the patient calmly and reassuringly.
there are oral secretions that will collect in the back of
v Sit next to the bed and hold the patient's
the throat and cause a noisy breathing called a "death
hand to provide comfort.
rattle." This happens when a person is too weak to
v React calmly and behave with confidence,
cough or swallow. This symptom is common and
so as not to startle the patient further.
indicative of a decrease in circulation and a building up
v Always talk as if the patient can hear you,
of waste products in the body.
even if he/she appears to be unconscious.
v When providing care, explain what you are
doing.
v Keep a light on in the room (soft lighting
without shadows) to decrease some of the
confusion.
52

---

What To Do:
What to do at the time of death
v Changing the patient's position may help the
s Call the Hospice. Be sure to keep all numbers for the
breathing, but don't become alarmed if it
hospice in an accessible location, so you can refer to
doesn't. A change in breathing pattern is
them quickly (list these numbers on the Emergency
normal and expected.
Information Sheet in Chapter 2).
v When oral secretions build up, elevating the
s DO NOT CALL 911 OR THE PARAMEDICS.
head off the bed with pillows or obtaining a
s If you are alone, call a friend or family member to be
hospital bed will make breathing easier.
with you.
v Use a cool mist humidifier in the room.
s Note the time that your loved one stopped breathing.
v Use a moist washcloth to relieve a dry
s Call the funeral home. They will send someone to the
mouth.
house to take the body directly to the funeral home.
v Chapstick or vaseline to the lips may provide
You may instruct the funeral home to contact the
comfort.
hospice.
v Try turning the patient on his/her side to
keep secretions from getting caught in the
Hospice services are provided by Medicaid, Medicare, and
many private insurers. If you are unsure if your loved one
throat.
qualifies for hospice, speak to his/her doctor. To deter-
v Call the nurse for further advice if the
mine if the patient's insurance covers hospice, you can
patient becomes distressed with these
call the insurance company directly. If insurance does not
cover hospice, ask the hospice staff about other sources
symptoms.
of financial assistance that may be available. To find out
more about hospice or to locate a hospice program in
your area, see Appendix F.
s Hearing and vision ability may decrease
slightly.
What To Do:
v Maintain a peaceful, quiet atmosphere.
v Keep soft lights on in the room when vision
decreases.
v Soft music may be comforting.
v Be calm and reassuring.
v Never assume that the patient cannot hear
you when talking to others in the room.
Hearing is the last of the five senses to be
lost.
53

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"Professionals seldom appreciate how
much fear and anxiety complicate the
learning of tasks [for caregivers]. Learn-
ing how to operate a feeding tube or
change a dressing or inject a medication
is hard enough for a layperson; caregivers
learn how to perform these procedures
for the first time on a person they love.
Fearful of making a mistake or simply
upset by the idea of having to perform
unaccustomed and unpleasant tasks,
caregivers may resist or fail, or persist at
great emotional cost."
- Carol Levine, Author
- Adapted from Always on Call, Edited by Carol Levine

---

S Y M P T O M M A N A G E M E N T A T H O M E
There are a great many symptoms that your loved one
may experience throughout the course of illness. This
chapter will give you some general information and
guidelines about how to manage some of the most com-
mon symptoms:
s Pain
s Fatigue
s Dyspnea
s Gastrointestinal Complications
s Skin Problems
s Psychological Complications
You should always check with the doctor prior to treating
the patient in order to ensure proper care of his/her prob-
lem. Space is provided at the end of each section for you
to attach or write in any specific instructions given by the
patient's doctor.
25

---

P A I N
The biggest fear of chronically ill patients and
Pain can cause people to feel depressed and anxious, just
their families is that the patient will suffer with
as depression and anxiety can make pain worse. Because
unrelieved pain. Most injuries, surgical proce-
many of the signs of pain are the same as those of anxi-
dures, and chronic illnesses are associated with
ety and depression, you need to know what is causing
some degree of pain. The experience of pain is
these symptoms and to seek treatment for them in order
subjective, and can be affected by the severity
to stop further suffering. All types of pain can be treated
of the underlying illness or injury; psychological
safely and effectively using many types of treatments,
factors, such as individual coping styles and
including medication and non-drug treatments. Pain
emotional support; and other factors. Because
treatment needs to be tailored to the individual. What
pain is an individual experience, it is impossible
works for one person may not work for the next. Pain can
to know what another's pain feels like. Many
be treated through the use of one or a combination of the
people do not tell others how much pain they
following:
feel for a variety of reasons: they believe that
s drug therapies (e.g. anti-inflammatory drugs, opioids,
they are not supposed to have pain, they think
antidepressants, anticonvulsants)
that pain is a sign of weakness, or they assume
s psychological approaches (e.g. relaxation training, dis-
that nothing can be done. Living with pain can
traction, biofeedback)
exhaust a person and ruin quality of life. It is
s rehabilitation therapies (e.g. physical therapy, occupa-
important for you to recognize if the patient is
tional therapy)
in pain in order to promote appropriate pain
s anesthetic treatments (e.g. nerve blocks, spinal cord
management.
stimulation).
Your loved one may be in pain if he/she:
A word about pain medication:
Acetaminophen and nonsteroidal anti-inflammatory drugs
s has decreased appetite
(NSAIDs) ­ These drugs are used to treat mild pain. They are best
s has lost interest in regular activities
known as over-the-counter medications and include aspirin, ibupro-
s is crying and upset about discomfort
fen,and acetaminophen. However, some NSAIDs require a prescrip -
tion.
s grimaces or winces when moving
Opioids (also called narcotics) ­ Drugs that are used to treat mod-
s stays in bed and doesn't get dressed
erate to severe pain and require a prescription. These include mor-
s has difficulty sleeping
phine, methadone, oxycodone, and hydrocodone.
s is tense and tries to avoid movement
Adjuvant analgesics - Drugs that are used primarily to treat condi-
tions other than pain but can relieve some painful conditions. These
include drugs in many classes, such as antidepressants, anticonvul-
sants, anesthetics, and corticosteroids.
26

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The Facts About Pain
MYTH: "The patient will develop a tolerance to
Medication
his/her medication and will have to keep taking
more and more until he/she is immune to it and it
Many patients do not follow their pain manage-
doesn't work anymore."
ment regimens due to misconceptions about
FACT: Tolerance to opioid drugs occurs but is seldom a
tolerance, physical dependence, and addiction
clinical problem. Tolerance means that taking the drug
to pain medications. You, the caregiver, must
changes the body in such a way that the drug loses its
effect over time. Most patients' doses are gradually
know the facts about pain medicines so that
increased until pain relief is obtained, then they stabilize
you can help your loved one achieve the best
at this dose for a long period of time. If doses need to be
possible pain relief. Here are the FACTS about
increased because pain returns, it is more commonly due
some common myths you've probably heard:
to disease factors than to tolerance.
MYTH: "Pain medication should be saved and used
MYTH: "If the patient takes narcotic med-
only when pain is severe."
ications, he/she will become addicted."
FACT: Pain medication should be given on a regular
FACT: Addiction is characterized by the compul-
schedule so that there is a stable amount of medicine in
sive use of drugs for their psychological effects;
the body to keep the pain away. By taking medication
the drugs are causing harm to the person, but
before the pain becomes unbearable, the patient can get
are still taken. It is rare for pain patients with
better relief with lower doses and fewer side effects.
no history of substance abuse to become
MYTH: "The patient will not be him/herself on the
addicted to pain medication--including opioid
medication and will become a zombie."
drugs, such as morphine. Many people confuse
physical dependence, which is the occurrence of
FACT: Although opioids can make people sleepy and cloud
withdrawal when the drug is stopped, with
their thinking, this side effect is usually temporary. Long-
addiction.
term therapy is generally associated with normal thinking.
Most patients can take opioid drugs for a long period of
MYTH: "If the patient no longer needs the
time and be mentally normal. Patients who have been
medication, he/she will go through severe
stabilized on opioid therapy and are clearheaded can
withdrawal when trying to stop it."
drive, work, and do whatever else their health allows.
FACT: Withdrawal is a physical phenomenon
that means that the body has adapted to the
drug in such a way that a `rebound' occurs
when the drug is suddenly stopped. All people
who take opioids for a period of time can have
this withdrawal syndrome if the drug is stopped
or the dose is suddenly lowered. This can be
prevented by slowly tapering use of a drug over
time. Possibly having withdrawal is not the
same as being addicted and is usually no prob-
lem at all.
27

---

What you can do to help
When to call the doctor:
s Encourage the patient to take pain medica-
v If the patient is experiencing severe pain
tion exactly as prescribed.
v If there is an adverse reaction to pain medication
s Assess the patient's pain using a pain rating
v If the patient continues to experience pain between
scheduled doses of long-acting pain medication
scale from 0 (no pain) to 10 (worst pain
v If the patient is unable to get up and walk due to pain
imaginable) so that you know their pain level
v If the patient is unable to sleep due to pain
and can communicate this to the doctor.
v If the patient is crying and upset about feeling pain
s Make sure the patient has at least a 3-day
v If the patient avoids movement or tenses muscles
supply of pain medicine and call for a new
when moving
prescription before the last dose of medica-
v If there is decreased appetite due to pain
tion is given.
v If there is less desire to engage in normal activities
due to pain
s Help the patient keep a journal of his/her
pain in order to identify factors that make
the pain better or worse (Pain Journal provided
Before you call/see the doctor
at the end of this section).
Before calling, you should make sure that you or the
s Massage painful areas, if the patient says
patient know the answers to certain questions that may
that this helps and the doctor has not
be asked about your loved one's pain. Preparing the
warned against it.
answers before you call can better help the health care
s
team determine the cause, severity, and proper treatment
Assist the patient with lifting or moving
for the problem.
heavy objects.
s Encourage the patient to use deep breathing
s When did the pain start? / Is this a new pain?
and relaxation exercises (see "Relaxation"
s How long has the patient had this pain?
s
section for instructions).
Exactly where is the pain located in the body?
s What is the quality of the pain (what does it feel like)?
s Involve the patient in other activities to dis-
s On a scale of 0 to 10 (with 0 being no pain, and 10
tract them, such as watching a movie, using
being the worst pain imaginable), how would the
the computer, playing a game, or reading.
patient currently rate his/her pain?
s When does the pain occur?
s Is there anything that makes the pain better?
s Is there anything that makes the pain worse?
s Is the pain interfering with other areas of the patient's
life?
s What medications is the patient currently taking for the
pain?
28

---

Special instructions
Helpful Websites for Pain:
www.stoppain.org
www.pain.com
www.theacpa.org
www.painandhealth.org
www.aapainmanage.org
www.webmd.com
29

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F A T I G U E
Symptoms of fatigue
s Generalized (whole body) weakness or tiredness
s Diminished energy disproportionate to activity
s Sleep abnormalities
s Diminished motivation or interest in activities
s Diminished activity associated with lower physical or
intellectual performance (eg. lack of focus, short atten-
tion span, memory problems)
s Irritability, impatience, sadness, or other changes in
Fatigue is a feeling of weariness, tiredness, or
mood
lack of energy that varies in degree, frequency,
Treatment of fatigue
and duration. Everyone has experienced nor-
While rest may lessen fatigue associated with medical ill-
mal/acute fatigue, which improves with rest or
ness, it does not erase it. Although patients with chronic
sleep, exercise, and a balanced diet. Acute
diseases and fatigue may need rest during the day, they
fatigue may be caused by excessive physical
should recognize that these activities will not eliminate
activity, lack of exercise, insufficient rest or
the problem. The treatment of fatigue includes identifying
sleep, poor diet, dehydration, increase in activi-
and managing the underlying cause and using a variety of
ty, or other environmental factors. Chronic
interventions, including medication; education; exercise;
fatigue associated with a disease or treatment
sleep hygiene; stress management, and nutrition.
of a disease does not improve with rest and can
seriously affect a person's ability to function.
Fatigue in chronic illness is a common problem
The Six "E's" to Manage Fatigue
and should not be viewed as laziness or depres-
Evaluation
sion. Chronic fatigue may be related to numer-
Keeping a daily journal of fatigue can provide invaluable
ous illnesses, such as cancer;AIDS; heart, lung
information for the patient, you, and the health care team.
or kidney impairment; sickle cell disease; and
Patterns of fatigue, energy levels, and activities that
many other medical conditions. Fatigue can
increase or decrease exhaustion are all important. This
accompany psychological symptoms, such as
information can help professionals identify the cause or
depression, result from the use of some medica-
aggravating situations and evaluate the best treatment
tions, or be associated with chemotherapy and
approach for the patient. A Fatigue Journal is provided at
radiation therapy.
the end of this section.
30

---

Energy Conservation
Easing Stress
Energy conservation involves the use of plan-
Anxiety, coping with a chronic illness or its treatment, and
ning, prioritizing, delegating, and pacing in
sleep disturbances may contribute to fatigue. Stress man-
order to store up energy, which can then be
agement techniques, such as relaxation therapy, hypnosis,
used for more important activities. Help the
guided imagery, or distraction, can reduce worry and dis-
patient identify high-energy activities (e.g.
tress. Referral to a psychologist for counseling and train-
bathing, dressing) and tasks which contribute to
ing in stress management may be warranted in some
his/her fatigue. Try to find ways to help the
patients. See the "Stress Management" section or Fact
patient make activities simpler and less tiring.
Sheet for more information.
Also, encourage the patient to plan and pace
activities around times when he/she has more
Eating Well
energy.
A balanced diet that combines adequate calorie intake
(grains, green vegetables, legumes, and proteins) can help
Exercise
maintain energy levels. Adequate fluid intake can prevent
Excessive bed rest can promote weakness or
dehydration and hypotension, which can intensify fatigue
decreased energy levels and eventually increase
fatigue. Mild to moderate exercise, such as
symptoms. The patient's diet should be tailored to his/her
walking and stretching, can relieve fatigue
dietary needs or restrictions, as indicated by the doctor or
symptoms, increase functioning, and gently
nutritionist.
energize both healthy people and those with
What you can do to help
chronic diseases. Light to moderate exercise, as
s
recommended by a physician, should be tailored
Encourage the patient to discuss his/her fatigue (tired-
to the individual according to age, physical and
ness).
medical condition. Exercise should begin grad-
s Make sure that the health care team is aware of the
ually, several days a week, and not be per-
patient's fatigue.
formed to the point of exhaustion.
s Schedule tasks according to their importance.
s Promote resting between high-energy activities.
Energy Restoration
s Plan tasks more efficiently so they can be easily accom-
Remaining active may maintain energy levels or
plished.
increase the patient's ability to do more neces-
s Encourage the patient to get up or move slowly to
sary tasks. Some patients also find that distrac-
avoid dizziness or falls.
tion strategies, such as listening to music,
s Serve small snacks as well as balanced meals high in
watching TV, playing cards, or other cognitive
carbohydrates (pasta, bread, fruit, and potatoes).
techniques help get rid of mental fatigue and
restore mental activity.
31

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Helpful Websites for Fatigue:
v www.stoppain.org
v www.cancerfatigue.org
v www.cancercareinc.org
v cancernet.nci.nih.gov
s Make sure the patient drinks plenty of fluids
(6-8 glasses per day or as much as the doctor
Special instructions
allows).
s Help the patient with difficult or high-energy
tasks.
s Encourage the patient to do some light exer-
cise every day.
s Keep the patient as active as possible during
the day to foster easier sleep at night.
s Schedule regular times to rest and sleep to
help the patient's body develop a routine.
s Encourage rest when tired by going to sleep
earlier, sleeping later, and taking naps.
s Assess anxiety levels and help calm the
patient (see Relaxation Fact Sheet) if anxiety
is interrupting sleep.
When to call the doctor:
v If the patient is experiencing severe or fre-
quent dizziness
v If the patient is unable to be awakened
v If the patient experiences confusion
v If the patient experiences ringing in the ears
v If the patient feels pounding in the head
v If the patient stays in bed for more than 24
hours without getting up
v If fatigue is worsening
32

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D I F F I C U L T Y B R E A T H I N G ( D Y S P N E A )
It is important to recognize that while shortness of breath
can cause anxiety, anxiety can also cause and worsen
breathing difficulties. However, there are some things
that you can do to help the patient avoid this cycle.
Treatments for dyspnea
Medications:
s Antibiotics ­ Fight infections that may cause breathing
problems
Dyspnea, or shortness of breath, is the unpleas-
s Diuretics ­ Rid the body of excess fluids
ant sensation of having difficulty breathing. It
s Bronchodilators ­ Open up air passages in the lungs
can occur for many different reasons, such as
s Steroids ­ Reduce inflammation, which opens air pas-
when not enough oxygen is getting to the body
sages
because of lung disease. When severe, it is a
s Opioids ­ Can directly lessen the sensation of breath-
frightening experience for both the patient and
lessness
the caregiver.
s Anxiolytics ­ Calm patients and slow their breathing
Non-Drug Treatments:
Difficulty breathing can be caused or
worsened by
s Relaxation exercises ­ Help reduce emotional and phys-
s chronic lung disorders
ical stress and tension (see "Learning How to Relax"
s airway obstruction
section for details).
s pneumonia
s Deep breathing techniques ­ Promote relaxation.
s pain
s Oxygen ­ A machine supplies extra oxygen to the body,
s stress/anxiety
which helps the patient breathe easier.
s advanced, progressive illness
s Positioning ­ Sitting upright allows gravity to assist the
s tumor
patient in breathing.
s fluid in the lungs
s Increased room air ventilation ­ Good air circulation
s certain chemotherapy or radiation treatments
makes it easier for patients to breathe.
s Psychosocial support ­ Addresses the impact of anxiety
and stress on breathing problems.
33

---

When to call the doctor:
v If there is labored or difficulty breathing
v If there is chest pain
v If the skin is pale or bluish
v If the skin feels cold or clammy
v If the patient has a fever
v If nostrils flare while breathing
v If there is wheezing
v If there is thick, yellow, green, and/or bloody sputum
v If the patient becomes confused
What you can do to help
s Remain calm.
s Stay with the patient and offer reassurance.
Helpful Websites for Dyspnea:
s Maintain bed rest for the patient.
v www.stoppain.org
s Raise the head of the bed or add pillows to
v www.cancerfatigue.org
an upright position.
v www.cancercareinc.org
s Promote air circulation in the room (use of
v cancernet.nci.nih.gov
fan or air conditioning).
s Use a fan to create a light breeze in the face
of the patient.
Special instructions
s Encourage deep breathing (see "Learning
How to Relax" section for breathing exercis-
es).
s Offer prescribed medication.
s Maintain prescribed oxygen.
s Use room humidifier or vaporizer to help
loosen secretions, if necessary.
34

---

G A S T R O I N T E S T I N A L S Y M P T O M S
What you can do to help
Nausea/Vomiting
s Encourage the patient to take prescribed anti-nausea
medication
s Fix the patient frequent, light meals throughout the day
s Serve foods cool or at room temperature
s Avoid fried foods, dairy products, and acidic foods
(fruit, juice, and vinegar)
s Stay away from spicy foods; stick to bland foods, such
Gastrointestinal symptoms include such prob-
as dry crackers
lems as nausea (feeling queasy or sick to one's
s Make sure the patient's mouth is kept clean
stomach), vomiting (throwing up), constipation
s Offer chewing gum or hard candy
or diarrhea, anorexia (loss of appetite), and
s Take the patient outside or open a window for fresh air
cachexia (severe weight loss). These difficulties
s Encourage rest and relaxation
can be caused by a number of illnesses, treat-
s Make sure the patient drinks enough clear liquids,
ments, and medications, including:
sipped slowly, to prevent dehydration
s Avoid unpleasant or strong odors
s cancer, AIDS, and other diseases
s Distract the patient with music, television, or other
s radiation therapy
activities
s dehydration
s chemotherapy
When to call the doctor for Nausea and Vomiting:
s certain foods
v If there is blood or material that looks like coffee
s opioids, antibiotics, and other drugs
grounds in the vomit
s lactose (milk) intolerance
v If vomit shoots out for a distance (projectile vomiting)
s emotional distress and anxiety
v If two doses of prescribed medications are not taken
s surgery
or kept down because of nausea or vomiting
s taste changes
v If the patient cannot keep liquids or food down
v If weakness or dizziness occur
v If severe stomach pains occur with vomiting
35

---

Diarrhea
s Give medicine for diarrhea as directed by the doctor
s Replace lost fluids and nutrients by offering clear liq-
uids (clear juices, water, broth), often and in-between
meals (2-3 quarts per day)
s Serve foods low in fiber and high in potassium and pro-
tein (eggs, bananas, applesauce, mashed potatoes, rice,
and dry toast)
s Serve many small meals throughout the day rather than
Constipation
3 big meals
s Discuss the use of laxatives and stool soften-
s Avoid serving foods that may increase bloating (veg-
ers with the doctor and follow a regular
etables, beans, fruits)
schedule as directed
s Avoid serving fatty or acidic foods (fatty meat, fried
s If the doctor agrees, give the patient foods
food, spicy food)
high in fiber (whole grain cereal and bread,
s Limit caffeine intake (coffee, tea, soda with caffeine,
dried fruit, nuts, beans, and raw fruits and
and chocolate)
vegetables)
s Avoid serving dairy or milk products
s Make sure the patient drinks enough liquids
When to call the doctor for Diarrhea:
(up to 6-8 glasses per day)
v If the patient is losing a lot of fluid from severe
s Offer prune juice, hot lemon water, tea, or
diarrhea
coffee, which may stimulate the bowels
v If there is blood in the diarrhea
s Encourage daily exercise, such as walking (in
v If diarrhea is oily in the toilet
keeping with the doctor's advice)
v If there is a fever
When to call the doctor for Constipation:
v If the patient does not drink any liquids for
v If the patient has not had a bowel
more than 2 days
movement in many days
v If constipation occurs with severe
abdominal pain
v If constipation worsens and is followed by
vomiting
36

---

When to call the doctor for Appetite/Weight Loss:
v If the patient reduces normal food intake for a long
time
v If the patient loses 5 pounds or more in a short time
v If there is pain with chewing and/or swallowing
v If the patient experiences dizziness upon standing
v If the patient does not urinate for an entire day, or
does not move the bowels for many days
Loss of Appetite/Weight Loss
Helpful Websites for GI Symptoms:
s Do not force feed the patient
v www.cdc.gov
s Do not get angry if the patient does not
v www.healthanswers.com
want to eat
v www.medicinenet.com
s Prepare familiar favorite foods
v www.stayhealthy.com
s Try light exercise or walking before meals
s Encourage eating meals at the table with
Special instructions
others
s Serve meals over a prolonged period of time
in a relaxed environment
s Place meals on smaller plates with smaller
servings more frequently
s Cover up unpleasant odors
s Serve a glass of wine before meals to stimu-
late appetite
s Offer frequent, high protein, high calorie
snacks (pudding, ice cream, milk shakes)
s Try new spices or flavorings for foods
s Prevent early feelings of fullness by: serving
beverages between meals, not with meals,
eating slowly, and avoiding too many
vegetables and carbonated drinks
37

---

S K I N P R O B L E M S
s Signs and symptoms:
h red areas on the skin that do not go away when
pressure is removed
h cracked, blistered, scaly or broken skin
h an open sore involving skin surface or invading deep-
er, underlying tissue
h yellowish colored stains on clothing or sheets
h pain at pressure points
Ulcers - a crater-like lesion on the skin.
s Usually caused by inflammation or infection of the
area, or an underlying condition that may affect the
There are a number of skin symptoms that can
skin's ability to heal.
accompany diseases like cancer, AIDS, sickle cell
Edema - swelling of the skin that is caused by water and
disease, and other illnesses. Such skin prob-
salt retention.
lems include dryness, rash, itching, sores, ulcers,
s Can occur from certain medications; heart, liver, or kid-
and swelling. It is important for you to be
ney failure; malnutrition; and obstruction of veins or
aware of skin problems so that they can be
lymph nodes.
treated as quickly as possible in order to reduce
s Signs and symptoms:
discomfort and the risk of infection.
h swelling of feet and lower legs when sitting in a
chair or walking
Common skin problems
h feeling of tightness in the hands when making a fist
Pressure Sores - blisters or breaks in the skin
h swollen or distended abdomen
caused when the body's weight stops the flow
Itching - the desire to rub or scratch the skin
of blood to a certain area, causing a breakdown
s Can be the result of dryness, allergies, and side effects
in the skin.
of medications or treatments.
s Most likely to affect patients who are bedrid-
Rash - bumpy, red, itchy skin.
den, low weight, malnourished, or dehydrat-
s Commonly caused by an allergy, irritation, radiation
ed.
therapy, or certain infections.
s Usually occur in bony areas, such as the
Dryness ­ rough, flaky, red, sometimes painful skin due
to a lack of water or oil in the layers of the skin.
head, elbows, heels, hips, shoulders, and tail-
s Can be caused by dehydration, cold weather, heat, and
bone.
side effects of treatments (such as chemotherapy and
s Sores are made worse when the patient rubs
radiation).
against his/her sheets.
38

---

What you can do to help
Itching/Rash
s Suggest bathing with cool water
Pressure Sores
s Add baking soda to bath water
s Keep skin dry and clean
s Apply a cool moist cloth to itchy areas
s Check skin daily for pressure sores and other
s Wash sheets and towels in a mild laundry soap and
skin irritations
change daily
s Try to turn a bedridden person every few
s Avoid harsh laundry detergents
hours (or as often as possible), alternating
s Apply medications prescribed by the doctor for skin irri-
positions.
tations
s Encourage the patient to get out of bed as
Dryness
much as possible.
s
s
Never leave the patient lying or sitting in wet
Add mineral or baby oil to a warm bath
clothes or bedding.
s Apply moisturizers
s Make sure the bedding is not wrinkled or irri-
s Make sure the patient drinks enough water (8-10
tating the patient's skin.
glasses per day)
s Promote a balanced nutritious diet, high in
s Prevent dryness by not scrubbing skin while bathing
protein (tuna, chicken, cheese).
and gently patting skin dry
s Do not open or pop blisters.
s Put dry clean gauze on any open areas.
When to call the doctor:
Ulcers
v If you see pressure sores (cracked, scaly, blistered,
s The skin area should be kept clean and
broken skin)
observed for signs of infection (pain, redness,
v If a pressure sore is getting larger
drainage that looks like pus).
v If a cut becomes very red, sore, or swollen
s Follow treatment instructions from the doc-
v If skin gets very rough, red, or painful
tor, which may include wet dressings and
v If a rash or hives appear
topical antibiotics to control infection in open
v If pus comes out of an opening or cut
ulcers.
v If severe itching lasts more than a few days
Edema
v If a rash becomes worse after applying ointment
s Keep feet elevated when lying in bed or sit-
or cream
ting
v If swelling spreads up legs or arms
s Take medication, and restrict fluids or salt
v If the patient's belly becomes swollen
intake, as prescribed by the doctor
39

---

Helpful Websites for Skin Problems:
v www.cdc.gov
v www.healthanswers.com
v www.medicinenet.com
v www.stayhealthy.com
Special instructions
Before you call/see the doctor
Before calling, you should make sure that you
or the patient know the answers to certain
questions that will probably be asked about
your loved one's skin condition. Preparing the
answers before you call can better help the
health care team determine the cause, severity,
and proper treatment for the problem.
s Exactly where is the problem located on the
patient's body?
s When did you first notice the problem?
s Has the irritation changed in appearance
since its onset?
s Does the irritation appear to be getting bet-
ter or worse?
s Can you identify anything that could have
caused the problem (allergy to food, new
detergent or soap, new medication)?
s Is there anything that helps relieve the dis-
comfort?
s Is there anything that makes the irritation
worse?
s What medications is the patient currently
taking?
40

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P S Y C H O L O G I C A L C O M P L I C A T I O N S
s Loss of interest or pleasure in ordinary activities
s Sleep problems (falling asleep, insomnia, getting up
very early in the morning, or excessive sleeping)
s Loss of appetite or overeating
s Tearfulness or excessive crying
s Problems concentrating, paying attention, remember-
ing, or making decisions
s Irritability
s Uncharacteristic withdrawal from others
Living with a chronic illness may be associated
s Thoughts of suicide or suicide attempts
with intense feelings of fear, worry, sadness, and
v Call the doctor if these symptoms last for two
grief. It is normal for you and the patient to
weeks or more, or if they are severe enough to
experience such emotions. However, over-
interfere with normal functioning.
whelming anxiety or depression that does not
Anxiety
go away is a psychological problem, and may
s Verbal expressions of anxiety, nervousness, panic or
require treatment. Clinical depression and anxi-
feeling like something terrible is going to happen
ety can be acute/reactive, meaning that they
s Verbal denial of obvious tension or anxiety
happen as a response to coping with a diagno-
s Difficulty solving problems
sis, illness, treatment, and prognosis. They can
s Muscle tension
also be chronic or pre-existing problems that
s Trembling and shaking
are worsened by the illness. Whatever the
s Difficulty breathing
cause, anxiety and depression are treatable con-
s Upset stomach
ditions. It is important to be aware of such psy-
s Sweaty palms
chological problems so that you know when or
s Racing heart
if they need to be treated by a doctor.
s Headaches
s Gets angry easily
Signs and symptoms
Depression
s Persistent sadness or feelings of guilt, worth-
lessness, hopelessness, and helplessness
s Tiredness or decrease in energy
41

---

What you can do to help
When to call the doctor:
s Let your loved one express his/her feelings.
v If the patient expresses severe anxiety for several days
s Encourage the patient to identify any con-
v If the patient is trembling, shaking, or twitching
crete causes for the feelings.
v If the patient has a rapid pulse or heart rate
s Actively listen and try to understand what
v If the patient experiences feelings of dread or appre-
the patient is feeling.
hension for several days
s Provide support and encouragement.
v If the patient has serious problems falling or staying
s Make sure the patient knows that it is nor-
asleep for several days
mal for him/her to experience these feelings.
v If the patient has mood swings that cannot be con-
s Encourage the patient to participate in an
trolled
exercise regimen.
v If the patient talks about suicide (killing him/herself)
s Encourage the patient to speak to a profes-
v If the patient cannot eat or sleep or feels uninterested
sional counselor or therapist who has experi-
in activities of daily living for several days
ence with chronic illness.
s Promote the use of relaxation techniques
See Appendix B for listings of mental health organizations
(see "Relaxation" section).
that can give you more information and referrals to men-
s Recognize the signs (above) of psychological
tal health professionals or support groups in your area.
symptoms so that you know when it is nec-
essary to call the doctor.
Special instructions
s Encourage the patient to take anti-anxiety or
antidepressant medications as prescribed by
the doctor.
DO NOT...
s Force the patient to talk if he/she is not
ready.
s Tell the patient how he/she "should" feel.
s Assume that it is your fault if the patient is
feeling depressed.
s Feel that you must cheer the person up in
order to be helpful.
s Try to reason with the patient or talk him/her
out of how he/she is feeling.
42

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APPENDIX A
CAREGIVER ADVOCACY GROUPS /
RESOURCE CENTERS
APPENDIX B
ADVOCACY GROUPS BY DISEASE
APPENDIX C
FINANCIAL ASSISTANCE
APPENDIX D
RESPITE CARE / VOLUNTEER SERVICES
APPENDIX E
TRANSPORTATION
APPENDIX F
HOSPICE / HOME CARE / END OF LIFE
APPENDIX G
CAREGIVER WEBSITES
APPENDIX H
CAREGIVER BOOKS / GUIDES

---

A PP E N DI X A : C A R E GI V E R A D V O C AC Y G R O U P S / RE S O U R C E C E N T E R S
Caregiver Resource Center
Mount Sinai Medical Center
1425 Madison Avenue
East Building, Room L-4-89 (4th Floor)
New York, NY 10029
(212) 659-8989
Family Caregiver Alliance
690 Market Street, Suite 600
San Francisco, CA 94104
(800) 445-8106
(415) 434-3388
www.caregiver.org
Friend's Health Connection
P.O. Box 114
New Brunswick, NJ 08903
(800) 48-FRIEND (483-7436)
(732) 418-1811
www.48friend.org
Caregivers Service
Health Outreach Office
New York Presbyterian Hospital
525 East 68th Street, Box 143
New York, NY 10131
(212) 746-4365
National Alliance for Caregiving
4720 Montgomery Lane, Suite 642
Bethesda, MD 20814-3425
(301) 718-8444
www.caregiving.org
119

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A P P E N D I X B : A D V O C A C Y G R O U P S B Y D I S E A S E
ALZHEIMER'S DISEASE
Alzheimer's Association
919 North Michigan Avenue, Suite 1100
Chicago, IL 60611
(800) 272-3900
(312) 335-8700
AIDS/HIV
www.alz.org
American Foundation for AIDS Research
Alzheimer's Disease Education and Referral Service
120 Wall Street, 13th Floor
The ADEAR Center
New York, NY 10005
P.O. Box 8250
(800) 39-amfAR (392-6327)
Silver Spring, MD 20907
(212) 806-1600
(800) 438-4380
www.amfar.org
(301) 495-3311
www.alzheimers.org
HIV/AIDS Treatment Information Service
ARTHRITIS
P.O. Box 6303
Rockville, MD 20849
Arthritis Foundation
(800) HIV-0440 (448-0440)
1650 Bluegrass Lakes Parkway
(301) 738-6616
Alpharetta, GA 30004
www.hivatis.org
(800) 283-7800
www.arthritis.org
Centers for Disease Control and Prevention
National HIV/AIDS Hotline
AMYOTROPHIC LATERAL SCLEROSIS
(800) 342-AIDS
The Amyotrophic Lateral Sclerosis Association
(800) 344-SIDA (Spanish)
The ALS Association National Office
(800) AIDS-889 (for the deaf/hearing-impaired)
27001 Agoura Road, Suite 150
www.cdc.gov
Calabasas Hills, CA 91301
Gay Men's Health Crisis
(800) 782-4747
119 West 24th Street
(818) 880-9007
New York, NY 10011
www.alsa.org
(800) AIDS-NYC (243-7692)
BRAIN INJURY
(212) 807-6655
(212) 645-7470 (for the deaf/hearing-impaired)
Brain Injury Association
www.gmhc.org
105 North Alfred Street
Alexandria, VA 22314
National Association of People with AIDS
(800) 444-6443
1413 K Street, NW, 7th Floor
(800) 228-8201 (within NY)
Washington, DC 20005
www.neurolaw.com
(202) 898-0414
www.bianys.org
www.napwa.org
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CANCER
DIABETES
American Cancer Society
American Diabetes Association
1599 Clifton Road
1701 North Beauregard Street
Atlanta, GA 30329
Alexandria, VA 22311
(800) ACS-2345 (227-2345)
(800) DIABETES (342-2383)
www.cancer.org
(703) 549-1500
www.diabetes.org
National Cancer Institute
Cancer Information Service
EPILEPSY
Building 31, Room 10A07
Epilepsy Foundation of America
31 Center Drive MSC 2580
4351 Garden City Drive
Bethesda, MD 20892
Landover, MD 20785
(800) 4-CANCER (422-6237)
(800) EFA-1000 (332-1000)
www.cancer.gov
(301) 459-3700
Cancer Care, Inc.
www.efa.org
275 Seventh Avenue
HEART DISEASE AND STROKE
New York, NY 10001
(800) 813-HOPE (outside the tri-state area)
American Heart/Stroke Association
(212) 302-2400
7272 Greenville Avenue
www.cancercareinc.org
Dallas, TX 75231
(800) AHA-USA1 (242-8721) (Heart and Stroke
CEREBRAL PALSY
Information)
United Cerebral Palsy Association
(888) 4-STROKE (Stroke Information)
1600 L Street, NW, Suite 700
(888) MY HEART (Women's Health Information)
Washington, DC 20036
www.americanheart.org
(800) USA-5-UCP (872-5827)
www.strokeassociation.org
(202) 776-0406
National Stroke Association
www.ucpa.org
96 Inverness Drive East, Suite I
CHRONIC OBSTRUCTIVE PULMONARY
Englewood, CO, 80112
DISEASE
(800) 787-6537
(303) 649-9299
American Lung Association
www.stroke.org
1740 Broadway
New York, NY 10019
(800) 586-4872
(212) 315-8700
www.lungusa.org
CYSTIC FIBROSIS
Cystic Fibrosis Foundation
6931 Arlington Road, Suite 200
Bethesda, MD 20814
(800) FIGHT CF (344-4823)
(301) 951-4422
www.cff.org
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KIDNEY DISEASE
National Depressive and Manic Depressive
Association
American Association of Kidney Patients
730 Franklin Street, Suite 501
100 South Ashley Drive, Suite 280
Chicago, IL 60610
Tampa, FL 33602
(800) 82-NDMDA (826-3632)
(800) 749-2257
(312) 642-0049
www.aakp.org
www.ndmda.org
American Kidney Fund
6110 Executive Boulevard, Suite 1010
National Institute of Mental Health
Rockville, MD 20852
NIMH Public Inquiries
(800) 638-8299
6001 Executive Boulevard, Rm. 8184, MSC 9663
(301) 881-3052
Bethesda, MD 20892
www.akfinc.org
(800) 421-4211
(301) 443-4513
The National Kidney Foundation
www.nimh.nih.gov
30 East 33rd Street, Suite 1100
New York, NY 10016
National Mental Health Association
(800) 622-9010
(212) 889-2210
1021 Prince Street
www.kidney.org
Alexandria, VA 22314
(800) 969-NMHA (6642)
LIVER DISEASE
(703) 684-7722
American Liver Foundation
www.nmha.org
75 Maiden Lane, Suite 603
MULTIPLE SCLEROSIS
New York, NY 10038
(800) GO LIVER (465-4837)
The National Multiple Sclerosis Society
www.liverfoundation.org
733 Third Avenue
MENTAL ILLNESS
New York, NY 10017
(800) FIGHT-MS (344-4867)
American Psychiatric Association
www.nmss.org
1400 K Street, NW
www.msnyc.org
Washington, DC 20005
(202) 682-6000
PAIN
www.psych.org
American Chronic Pain Association
American Psychological Association
P.O. Box 850
750 First Street, NE
Rocklin, CA 95677
Washington, DC 20002-4242
(916) 632-0922
(800) 374-2721
www.theacpa.org
(202) 336-5500
www.apa.org
American Pain Foundation
National Alliance for the Mentally Ill
111 South Calvert Street, Suite 2700
Colonial Place Three
Baltimore, MD 21202
2107 Wilson Blvd., Suite 300
www.painfoundation.org
Arlington, VA 22201
(800) 950-NAMI (6264)
(703) 524-7600
www.nami.org
122

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PARALYSIS
RARE DISORDERS
Christopher Reeve Paralysis Foundation
National Organization for Rare Disorders (NORD)
500 Morris Avenue
P.O. Box 8923
Springfield, NJ 07081
New Fairfield, CT 06812
(800) 225-0292
(800) 999-NORD (6673)
www.paralysis.org
(203) 746-6518
www.rarediseases.org
Kent Waldrep National Paralysis Foundation
SICKLE CELL DISEASE
16415 Addison Road, Suite 550
Addison, TX 75001
Sickle Cell Advocates for Research and
(877) SCI-CURE (724-2873)
Empowerment, Inc.
(972) 248-7100
P.O. Box 630127
www.kwnpf.org
Bronx, NY 10463
(718) 884-9670
National Spinal Cord Injury Hotline
www.defiers.com
2200 Kernan Drive
Baltimore, MD 21207
Sickle Cell Disease Association of America, Inc.
(800) 526-3456
National Headquarters
www.scihotline.org
200 Corporate Pointe, Suite 495
PARKINSON'S DISEASE
Culver City California 90230
(800) 421-8453
The American Parkinson Disease
(310) 216-6363
Association, Inc.
www.sicklecelldisease.org
1250 Hylan Blvd., Suite 4B
VISUAL IMPAIRMENT
Staten Island, NY 10305
(800) 223-2732
American Foundation for the Blind
(718) 981-8001
11 Penn Plaza, Suite 300
www.apdaparkinson.com
New York, NY 10001
(800) AFB Line (232-5463)
National Parkinson Foundation, Inc.
(212) 502-7600
Bob Hope Parkinson Research Center
www.afb.org
1501 N.W. 9th Avenue
Bob Hope Road
The Lighthouse, Inc.
Miami, Florida 33136
111 East 59th Street
(800) 327-4545
New York, NY 10022
(305) 547-6666
(800) 829-0500
www.parkinson.org
(212) 821-9200
(212) 821-9713 (for the deaf/hearing-impaired)
www.lighthouse.org
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A P P E N D I X C : F I N A N C I A L / L E G A L A S S I S T A N C E
FOR HEALTH CARE/MEDICATION
Health Care Financing Administration
7500 Security Boulevard
AIDS Drug Assistance Program
Baltimore, MD 21244
Centers for Disease Control and Prevention
(800) MEDICARE (633-4227)
National HIV/AIDS Hotline
(410) 786-3000
(800) 342-AIDS (342-2437)
www.hcfa.gov (information about health care)
(800) 344-SIDA (Spanish)
www.medicare.gov (Medicare information)
(800) AIDS-889 (for the deaf/hearing-impaired)
- OR -
Hill-Burton Program
Call your state Department of Health:
Health Resources and Services Administration
(518) 459-1641 (New York State Department of
12300 Twinbrook, Suite 5200
Health)
Rockville, MD 20857
(800) 638-0742
American Association of Retired Persons
(301) 443-5656
(AARP)
www.hrsa.dhhs.gov/osp/dfcr
601 E St., NW
Washington, DC 20049
Medicare Rights Center
(800) 424-3410
(800) 333-4114
www.aarp.com
(212) 869-3850 (in New York City)
www.medicarerights.org
American Bar Association
Commission on Legal Problems of the Elderly
The Medicine Program
740 Fifteenth Street, NW, 8th Floor
P. O. Box 515
Washington, DC 20005
Doniphan, MO 63935-0515
(202) 662-1032
(573) 778-1118
www.abanet.org/elderly
www.themedicineprogram.com
FOR PERSONAL FINANCES
American Health Assistance Foundation
15825 Shady Grove Road, Suite 140
Financial Planning Association
Rockville, MD 20850
5775 Glenridge Drive, NE, Suite B-300
(800) 437-2423
Atlanta, GA 30328
(301) 948-3244
(800) 945-IAFP (4237)
www.ahaf.org
(800) 282-7526
(404) 845-0011
Directory of Prescription Drug Patient
www.fpanet.org
Assistance Programs
Pharmaceutical Research and Manufacturers
Social Security Administration
of America (PhRMA)
Toll-free Information Line
1100 Fifteenth Street, NW
(800) 772-1213
Washington, DC 20005
www.ssa.gov
(800) 762-4636
(202) 835-3400
www.phrma.org/patients
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A P P E N D I X D : R E S P I T E C A R E / V O L U N T E E R S E R V I C E S
American Red Cross
Meals On Wheels Association of America
ARC in Greater New York
1414 Prince Street, Suite 202
150 Amsterdam Ave
Alexandria, Virginia 22314
New York, NY 10023
(800) 999-6262
(212) 787-1000
(703) 548-5558
www.nyredcross.org
www.mealsonwheelsassn.org
B'nai B'rith
National Easter Seal Society
1640 Rhode Island Avenue, NW
230 West Monroe Street, Suite 1800
Washington, DC 20036
Chicago, IL 60606
(202) 857-6600
(800) 221-6827
bnaibrith.org
(312) 726-6200
(312) 726-4258 (TTY)
Catholic Charities USA
www.easter-seals.org
1731 King Street, Suite 200
Alexandria, VA 22314
National Federation of Interfaith Volunteer
(703) 549-1390
Caregivers, Inc.
www.catholiccharitiesusa.org
One West Armour Blvd, Suite 202
Kansas City, MO 64111
Eldercare Locator
(800) 350-7438
Administration on Aging
(816) 931-5442
330 Independence Avenue, SW
www.nfivc.org
Washington, DC 20201
(800) 677-1116
National Respite Locator Service
(202) 619-7501
ARCH National Resource Center
www.aoa.gov
Chapel Hill Training-Outreach Project
800 Eastowne Drive, Suite 105
Elderserve
Chapel Hill, NC 27514
The Hebrew Home at Home
(800) 7-RELIEF (773-5433)
3260 Henry Hudson Parkway
www.chtop.com/locator.htm
Riverdale, NY 10463
(800) 567-3646
United Way of America
www.elderserve.org
701 North Fairfax Street
Alexandria, VA 22314
Family Friends (for children with disabilities
(800) 411-8929
or chronic illness)
(703) 836-7112
National Council on Aging
www.unitedway.org
Director of Intergenerational Programs
409 Third Street, SW, Second Floor
Volunteers of America
Washington, DC 20024
1660 Duke Street
(202) 479-6675
Alexandria, VA 22314
(800) 899-0089
(703) 341-5000
www.voa.org
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A P P E N D I X E : T R A N S P O R T A T I O N
Health Care Financing Administration
(to determine coverage for transportation under
Medicaid/Medicare)
7500 Security Boulevard
Baltimore, MD 21244
(800) MEDICARE (633-4227)
(410) 786-3000
www.hcfa.gov
www.medicare.gov (Medicare information)
State/City Departments for the Aging
New York State: 2 Empire State Plaza
Albany, NY 12223
Access-A-Ride
(800) 342-9871 (Senior Citizens' Hot
MTA New York City Transit
Line)
Paratransit Division
www.aging.state.ny.us
Department of Buses
New York City: 2 Lafayette Street
10 Columbus Circle, 17th Floor
New York, NY 10007
New York, NY 10019
(212) 442-1000
(212) 374-5634
www.ci.nyc.ny.us/html/dfta
(877) 337-2017 (reservations, applications, eligi-
bility)
Project Cart (New York City only)
(212) 333-3147 (for the deaf/hearing-impaired)
490 Second Avenue
New York, NY 10016
American Red Cross
(212) 221-3300
ARC in Greater New York
150 Amsterdam Ave
New York, NY 10023
For additional transportation options check with associa-
(212) 787-1000
tions related to specific diseases listed in Appendix B or
www.nyredcross.org
volunteer organizations listed in Appendix D.
Eldercare Locator
Administration on Aging
330 Independence Avenue, SW
Washington, DC 20201
(800) 677-1116
www.aoa.gov
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A P P E N D I X F : H O S P I C E / H O M E C A R E / E N D O F L I F E
Hospice Foundation of America
2001 S St., NW #300
Washington, DC 20009
(800) 854-3402
www.hospicefoundation.org
National Association for Home Care
228 Seventh Street, SE
Washington, DC 20003
(202) 547-7424 (home care)
(202) 546-4759 (hospice)
www.nahc.org
American Health Care Association
National Hospice and Palliative Care Organization
1201 L St., NW
1700 Diagonal Road, Suite 300
Washington, DC 20005
Alexandria, VA 22314
(202) 842-4444
(800) 658-8898
www.ahca.org
(703) 243-5900
www.nhpco.org
Americans for Better Care of the Dying
2175 K Street, NW, Suite 820
Visiting Nurse Association of America
Washington, DC 20037
11 Beacon Street, Suite 910
(202) 530-9864
Boston, MA 02108
www.abcd-caring.com
(888) 866-8773
(617) 523-4042
Choice in Dying/Partnership for Caring
www.vnaa.org
1035 30th Street, NW
Washington, DC 20007
(800) 989-WILL (9455)
www.choices.org
www.partnershipforcaring.org
Elderserve
The Hebrew Home at Home
3260 Henry Hudson Parkway
Riverdale, NY 10463
(800) 567-3646
www.elderserve.org
Hospice Education Institute
190 Westbrook Road
Essex, CT 06426
(800) 331-1620 (Hospicelink)
(860) 767-1620
www.hospiceworld.org
127

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A P P E N D I X G : C A R E G I V E R W E B S I T E S
Empowering Caregivers
www.care-givers.com
Familycare America
www.familycareamerica.com
Family Caregivers Alliance
www.caregiver.org
AARP ­ American Association of Retired
Friend's Health Connection
Persons
www.48friend.org
www.aarp.org/caregive/home.html
Healthy Caregiver.com
Caregiver-Information.com
www.healthycaregiver.com
www.caregiver-information.com
National Alliance for Caregivers
Caregiver Network, Inc.
www.caregiving.org
www.caregiver.on.ca
National Family Caregivers Association
Caregiver Survival Resources
www.nfcacares.org
www.caregiver911.com
National Partnership for Women and Families
Caregiver Zone ­ The Site for Caregivers
www.nationalpartnership.org
and Seniors
Resources for Caregivers
caregiverzone.com
www.abs.sdstate.edu/ae/agrability/care/resources.html
Caregivers.com
Rosalynn Carter Institute of Georgia Southwestern
www.caregivers.com
College
Caregiving.com
rci.gsw.edu
www.caregiving.com
The Caregiver Guide ­ Resource Links
Careguide.com
www.rbs4u.com/caregiver/links.htm
www.careguide.com
Today's Caregiver Magazine Online
CareThere.com
www.caregiver.com
www.carethere.com
U.S. Administration on Aging ­ Caregiver Resources
Thirdage.com - Caregiving
http://www.aoa.dhhs.gov/caregivers/default.htm
www.thirdage.com/family/caregiving
Web Of Care
Eldercare Online
www.webofcare.com/home.html
www.ec-online.net
Well Spouse Foundation
www.wellspouse.org
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A P P E N D I X H : C A R E G I V E R B O O K S / G U I D E S
Houts, Peter. American College of Physicians Home
Care Guide for Cancer: For Family and Friends
Giving Care at Home. Philadelphia:American College of
Physicians, 1994.
Ilardo, Joseph & Rothman, Carole. I'll Take Care of You:
A Practical Guide for Family Caregivers. Oakland,
California: New Harbinger, 1999.
Levine, Carol, (Ed.) Always on Call: When Illness Turns
Families into Caregivers. New York: United Hospital
Fund, 2000.
American Cancer Society. Caring for the
Lipsyte, Robert. In the Country of Illness: Comfort and
Patient with Cancer at Home: A Guide for
Advice for the Journey. New York:Alfred A. Knopf, 1998.
Patients and Families. Atlanta:American
McFarlane, Rodger & Bashe, Philip. The Complete
Cancer Society, 1998.
Bedside Companion: A No-Nonsense Guide to
Beedle, Joyce & Dunn, Louise (Editors). The
Caring for the Seriously Ill. New York: Fireside, 1999.
Carebook: A Workbook for Caregiver
McGonigle, Chris. Surviving Your Spouse's Chronic
Peace of Mind. Portland, Oregon: Lady Bug
Illness: A Compassionate Guide. New York: Henry Holt
Press, 1991.
& Company, Incorporated, 1999.
Berman, Claire. Caring for Yourself While
Meyer, Maria, Derr, Paula, & Hatfield, Mark. The Comfort
Caring for Your Aging Parents: How to
of Home: An Illustrated Step-by-Step Guide for
Help, How to Survive. New York: Henry Holt &
Caregivers. Portland, Oregon: CareTrust Publications, 1998.
Company, 1996.
National Family Caregivers Association. The Resourceful
Brammer, Lawrence & Bingea, Marian. Caring
Caregiver: Helping Family Caregivers Help
for Yourself While Caring for Others: A
Themselves. St. Louis, Missouri: Mosby, 1996.
Caregiver's Survival and Renewal Guide.
New York: Vantage Press, 1999.
Olshevski, Jodi, Katz,Anne, & Knight, Bob. Stress
Reduction for Caregivers. Philadelphia: Brunner/Mazel,
Brandt,Avrene. Caregiver's Reprieve: A
1999.
Guide to Emotional Survival When You're
Caring for Someone You Love (The
Ortho Biotech. Strength for Caring: Education and
Working Caregiver Series). San Luis Obispo,
Support for Family Cancer Caregivers. Raritan, New
California: Impact Publishers, 1997.
Jersey: Ortho Biotech, Inc., 1998.
Cancer Care. A Helping Hand: The Resource
Schonhoff, Shelly & Speaker, Joanna. Family Caregiver
Guide for People with Cancer. New York:
Guide: A Comprehensive Handbook for Caring for
Cancer Care, Incorporated, 1996.
Your Loved One at Home. Dubuque, Iowa: Simon & Kolz
Publishing, 1998.
Dolan, Michael. How to Care for Your Aging
Parents...and Still Have a Life of Your
Unger, James A. From Caregiver to Caregiver: How to
Own! Los Angeles: Mulholland Pacific, 1992.
Cope. Lima, Ohio: CSS Publishing Company, 1995.
Hereema, Carol. A Caregiver's Guide to
Visiting Nurse Associations of America. Caregiver's
Giving Medicines. Upper Saddle River, New
Handbook: A Complete Guide to Home Health
Jersey: Prentice Hall, 1999.
Care. New York: DK Publishing, 1998.
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