"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

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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

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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

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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

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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

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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

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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

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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

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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.
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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-
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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.
s If your in-laws would like to be involved in
caregiving, let them know how they can help
in a clear and specific way.
s Keep in mind that people can act out of char-
acter when they are stressed. Try not to take
it personally if your in-laws act differently
toward you or take things out on you as they
try to cope with the patient's illness.
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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
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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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