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First, Care for Yourself
On an airplane, an oxygen mask descends in front
of you. What do you do? As we all know, the
first rule is to put on your own oxygen mask
before you assist anyone else. Only when we
first help ourselves can we effectively help
others. Caring for yourself is one of the most
important—and one of the most often forgotten—things
you can do as a caregiver. When your needs are
taken care of, the person you care for will
benefit, too.
Effects
of Caregiving on Health and Well Being
We hear this often: "My husband is the
person with Alzheimer's, but now I'm the one
in the hospital!" Such a situation is all
too common. Researchers know a lot about the
effects of caregiving on health and well being.
For example, if you are a caregiving spouse
between the ages of 66 and 96 and are experiencing
mental or emotional strain, you have a risk
of dying that is 63 percent higher than that
of people your age who are not caregivers.1
The combination of loss, prolonged stress, the
physical demands of caregiving, and the biological
vulnerabilities that come with age place you
at risk for significant health problems as well
as an earlier death.
Older caregivers
are not the only ones who put their health and
well being at risk. If you are a baby boomer
who has assumed a caregiver role for your parents
while simultaneously juggling work and raising
adolescent children, you face an increased risk
for depression, chronic illness and a possible
decline in quality of life.
But despite
these risks, family caregivers of any age are
less likely than noncaregivers to practice preventive
healthcare and self-care behavior. Regardless
of age, sex, and race and ethnicity, caregivers
report problems attending to their own health
and well-being while managing caregiving responsibilities.
They report:
• sleep
deprivation
• poor eating habits
• failure to exercise
• failure to stay in bed when ill
• postponement of or failure to make
medical appointments.
Family caregivers
are also at increased risk for excessive use
of alcohol, tobacco and other drugs and for
depression. Caregiving can be an emotional roller
coaster. On the one hand, caring for your family
member demonstrates love and commitment and
can be a very rewarding personal experience.
On the other hand, exhaustion, worry, inadequate
resources and continuous care demands are enormously
stressful. Studies show that an estimated 46
percent to 59 percent of caregivers are clinically
depressed.
Taking
Responsibility for Your Own Care
You cannot stop the impact of a chronic or progressive
illness or a debilitating injury on someone
for whom you care. But there is a great deal
that you can do to take responsibility for your
personal well being and to get your own needs
met.
Identifying
Personal Barriers
Many times, attitudes and beliefs form personal
barriers that stand in the way of caring for
yourself. Not taking care of yourself may be
a lifelong pattern, with taking care of others
an easier option. However, as a family caregiver
you must ask yourself, "What good will
I be to the person I care for if I become ill?
If I die?" Breaking old patterns and overcoming
obstacles is not an easy proposition, but it
can be done—regardless of your age or
situation. The first task in removing personal
barriers to self-care is to identify what is
in your way. For example,
• Do
you feel you have to prove that you are worthy
of the care recipient's affection?
• Do you think you are being selfish
if you put your needs first?
• Is it frightening to think of your
own needs? What is the fear about?
• Do you have trouble asking for what
you need? Do you feel inadequate if you ask
for help? Why?
Sometimes caregivers
have misconceptions that increase their stress
and get in the way of good self-care. Here are
some of the most commonly expressed:
• I
am responsible for my parent's health.
• If I don't do it, no one will.
• If I do it right, I will get the love,
attention, and respect I deserve.
"I never
do anything right," or "There's no
way I could find the time to exercise"
are examples of negative "self-talk,"
another possible barrier that can cause unnecessary
anxiety. Instead, try positive statements: "I'm
good at giving John a bath." "I can
exercise for 15 minutes a day." Remember,
your mind believes what you tell it.
Because we base
our behavior on our thoughts and beliefs, attitudes
and misconceptions like those noted above can
cause caregivers to continually attempt to do
what cannot be done, to control what cannot
be controlled. The result is feelings of continued
failure and frustration and, often, an inclination
to ignore your own needs. Ask yourself what
might be getting in your way and keeping you
from taking care of yourself.
Moving
Forward
Once you've started to identify any personal
barriers to good self-care, you can begin to
change your behavior, moving forward one small
step at a time. Following are some effective
tools for self-care that can start you on your
way.
Tool
#1: Reducing Personal Stress
How we perceive and respond to an event is a
significant factor in how we adjust and cope
with it. The stress you feel is not only the
result of your caregiving situation but also
the result of your perception of it—whether
you see the glass as half-full or half-empty.
It is important to remember that you are not
alone in your experiences.
Your level
of stress is influenced by many factors, including
the following:
• Whether
your caregiving is voluntary. If you feel
you had no choice in taking on the responsibilities,
the chances are greater that you will experience
strain, distress, and resentment.
• Your
relationship with the care recipient. Sometimes
people care for another with the hope of healing
a relationship. If healing does not occur,
you may feel regret and discouragement.
• Your
coping abilities. How you coped with stress
in the past predicts how you will cope now.
Identify your current coping strengths so
that you can build on them.
• Your
caregiving situation. Some caregiving situations
are more stressful than others. For example,
caring for a person with dementia is often
more stressful than caring for someone with
a physical limitation.
• Whether
support is available.
Steps
to Managing Stress
1. Recognize warning signs early.
These might include irritability, sleep problems,
and forgetfulness. Know your own warning signs,
and act to make changes. Don't wait until
you are overwhelmed.
2. Identify
sources of stress. Ask yourself, "What
is causing stress for me?" Sources of
stress might be too much to do, family disagreements,
feelings of inadequacy, inability to say no.
3. Identify
what you can and cannot change. Remember,
we can only change ourselves; we cannot change
another person. When you try to change things
over which you have no control, you will only
increase your sense of frustration. Ask yourself,
"What do I have some control over? What
can I change?" Even a small change can
make a big difference. The challenge we face
as caregivers is well expressed in words from
the Serenity Prayer:
…Grant
me the serenity to
Accept the things I cannot change,
Courage to change the things I can,
And the wisdom to know the difference.
4. Take
action. Taking some action to reduce
stress gives us back a sense of control. Stress
reducers can be simple activities like walking
and other forms of exercise, gardening, meditation,
having coffee with a friend. Identify some
stress reducers that work for you.
Tool
#2: Setting Goals
Setting goals or deciding what you would like
to accomplish in the next three to six months
is an important tool for taking care of yourself.
Here are some sample goals you might set:
• Take
a break from caregiving.
• Get help with caregiving tasks like
bathing and preparing meals.
• Feel more healthy.
Goals are generally
too big to work on all at once. We are more
likely to reach a goal if we break it down into
smaller action steps. Once you've set a goal,
ask yourself, "What steps do I take to
reach my goal?" Make an action plan by
deciding which step you will take first, and
when. Then get started!
Example:
Goal and Action Steps
Goal: Feel more healthy.
Possible action steps:
1. Make an
appointment for a physical check-up.
2. Take a half-hour break once during the
week.
3. Walk three times a week for 10 minutes.
Tool
#3: Seeking Solutions
Seeking solutions to difficult situations is,
of course, one of the most important tools in
caregiving. Once you've identified a problem,
taking action to solve it can change the situation
and also change your attitude to a more positive
one, giving you more confidence in your abilities.
Steps
for Seeking Solutions
1. Identify the problem. Look at
the situation with an open mind. The real
problem might not be what first comes to mind.
For example, you think that the problem is
simply that you are tired all the time, when
the more basic difficulty is your belief that
"no one can care for John like I can."
The problem? Thinking that you have to do
everything yourself.
2. List
possible solutions. One idea is to try
a different perspective: "Even though
someone else provides help to John in a different
way than I do, it can be just as good."
Ask a friend to help. Call Family Caregiver
Alliance or the Eldercare Locator (see Resources
List) and ask about agencies in your area
that could help provide care.
3. Select
one solution from the list. Then try
it!
4. Evaluate
the results. Ask yourself how well your
choice worked.
5. Try
a second solution. If your first idea
didn't work, select another. But don't give
up on the first; sometimes an idea just needs
fine tuning.
6. Use
other resources. Ask friends, family
members and professionals for suggestions.
7. If
nothing seems to help, accept that the problem
may not be solvable now. You can revisit
it at another time.
Note:
All too often, we jump from step one to step
seven and then feel defeated and stuck. Concentrate
on keeping an open mind while listing and experimenting
with possible solutions.
Tool
#4: Communicating Constructively
Being able to communicate constructively is
one of a caregiver's most important tools. When
you communicate in ways that are clear, assertive
and constructive, you will be heard and get
the help and support you need. The box below
shows basic guidelines for good communication.
Communication
Guidelines
• Use "I" messages rather
than "you" messages. Saying
"I feel angry" rather than "You
made me angry" enables you to express
your feelings without blaming others or causing
them to become defensive.
• Respect
the rights and feelings of others. Do
not say something that will violate another
person's rights or intentionally hurt the
person's feelings. Recognize that the other
person has the right to express feelings.
• Be
clear and specific. Speak directly to
the person. Don't hint or hope the person
will guess what you need. Other people are
not mind readers. When you speak directly
about what you need or feel, you are taking
the risk that the other person might disagree
or say no to your request, but that action
also shows respect for the other person's
opinion. When both parties speak directly,
the chances of reaching understanding are
greater.
• Be
a good listener. Listening is the most
important aspect of communication.
Tool
#5: Asking for and Accepting Help
When people have asked if they can be of help
to you, how often have you replied, "Thank
you, but I'm fine." Many caregivers don't
know how to marshal the goodwill of others and
are reluctant to ask for help. You may not wish
to "burden" others or admit that you
can't handle everything yourself.
Be prepared
with a mental list of ways that others could
help you. For example, someone could take the
person you care for on a 15-minute walk a couple
of times a week. Your neighbor could pick up
a few things for you at the grocery store. A
relative could fill out some insurance papers.
When you break down the jobs into very simple
tasks, it is easier for people to help. And
they do want to help. It is up to you to tell
them how.
Help can come
from community resources, family, friends and
professionals. Ask them. Don't wait until you
are overwhelmed and exhausted or your health
fails. Reaching out for help when you need it
is a sign of personal strength.
Tips
on How to Ask
• Consider the person's special
abilities and interests. If you know
a friend enjoys cooking but dislikes driving,
your chances of getting help improve if you
ask for help with meal preparation.
• Resist
asking the same person repeatedly. Do
you keep asking the same person because she
has trouble saying no?
• Pick
the best time to make a request. Timing
is important. A person who is tired and stressed
might not be available to help out. Wait for
a better time.
• Prepare
a list of things that need doing. The
list might include errands, yard work, a visit
with your loved one. Let the "helper"
choose what she would like to do.
• Be
prepared for hesitance or refusal. It
can be upsetting for the caregiver when a
person is unable or unwilling to help. But
in the long run, it would do more harm to
the relationship if the person helps only
because he doesn't want to upset you. To the
person who seems hesitant, simply say, "Why
don't you think about it." Try not to
take it personally when a request is turned
down. The person is turning down the task,
not you. Try not to let a refusal prevent
you from asking for help again. The person
who refused today may be happy to help at
another time.
•
Avoid weakening your request. "It's
only a thought, but would you consider staying
with Grandma while I went to church?"
This request sounds like it's not very important
to you. Use "I" statements to make
specific requests: "I would like to go
to church on Sunday. Would you stay with Grandma
from 9 a.m. until noon?"
Tool
#6: Talking to the Physician
In addition to taking on the household chores,
shopping, transportation, and personal care,
37 percent of caregivers also administer medications,
injections, and medical treatment to the person
for whom they care. Some 77 percent of those
caregivers report the need to ask for advice
about the medications and medical treatments.
The person they usually turn to is their physician.
But while caregivers
will discuss their loved one's care with the
physician, caregivers seldom talk about their
own health, which is equally important. Building
a partnership with a physician that addresses
the health needs of the care recipient and the
caregiver is crucial. The responsibility of
this partnership ideally is shared between you
the caregiver, the physician, and other healthcare
staff. However, it will often fall to you to
be assertive, using good communication skills,
to ensure that everyone's needs are met—including
your own.
Tips
on Communicating with Your Physician
• Prepare questions ahead of time.
Make a list of your most important concerns
and problems. Issues you might want to discuss
with the physician are changes in symptoms,
medications or general health of the care
recipient, your own comfort in your caregiving
situation, or specific help you need to provide
care.
• Enlist
the help of the nurse. Many caregiving
questions relate more to nursing than to medicine.
In particular, the nurse can answer questions
about various tests and examinations, preparing
for surgical procedures, providing personal
care, and managing medications at home.
• Make
sure your appointment meets your needs. For
example, the first appointment in the morning
or after lunch and the last appointment in
the day are the best times to reduce your
waiting time or accommodate numerous questions.
When you schedule your appointment, be sure
you convey clearly the reasons for your visit
so that enough time is allowed.
• Call
ahead. Before the appointment, check
to see if the doctor is on schedule. Remind
the receptionist of special needs when you
arrive at the office.
• Take
someone with you. A companion can ask
questions you feel uncomfortable asking and
can help you remember what the physician and
nurse said.
• Use
assertive communication and "I"
messages. Enlist the medical care team
as partners in care. Present what you need,
what your concerns are, and how the doctor
and/or nurse can help. Use specific, clear
"I" statements like the following:
"I need to know more about the diagnosis;
I will feel better prepared for the future
if I know what's in store for me." Or
"I am feeling rundown. I'd like to make
an appointment for myself and my husband next
week."
Tool
#7: Starting to Exercise
You may be reluctant to start exercising, even
though you've heard it's one of the healthiest
things you can do. Perhaps you think that physical
exercise might harm you or that it is only for
people who are young and able to do things like
jogging. Fortunately, research suggests that
you can maintain or at least partly restore
endurance, balance, strength and flexibility
through everyday physical activities like walking
and gardening. Even household chores can improve
your health. The key is to increase your physical
activity by exercising and using your own muscle
power.
Exercise promotes
better sleep, reduces tension and depression,
and increases energy and alertness. If finding
time for exercise is a problem, incorporate
it into your daily activity. Perhaps the care
recipient can walk or do stretching exercise
with you. If necessary, do frequent short exercises
instead of those that require large blocks of
time. Find activities you enjoy.
Walking, one
of the best and easiest exercises, is a great
way to get started. Besides its physical benefits,
walking helps to reduce psychological tension.
Walking 20 minutes a day, three times a week,
is very beneficial. If you can't get away for
that long, try to walk for as long as you can
on however many days you can. Work walking into
your life. Walk around the mall, to the store
or a nearby park. Walk around the block with
a friend.
Tool
#8: Learning from Our Emotions
It is a strength to recognize when your emotions
are controlling you (instead of you controlling
your emotions). Our emotions are messages we
need to listen to. They exist for a reason.
However negative or painful, our feelings are
useful tools for understanding what is happening
to us.
Even feelings
such as guilt, anger and resentment contain
important messages. Learn from them, then take
appropriate action.
For example,
when you cannot enjoy activities you previously
enjoyed, and your emotional pain over-shadows
all pleasure, it is time to seek treatment for
depression—especially if you are having
thoughts of suicide. Speaking with your physician
is the first step. (Please refer to the Fact
Sheet on Caregiving and Depression, listed below.)
Caregiving
often involves a range of emotions. Some feelings
are more comfortable than others. When you find
that your emotions are intense, they might mean
the following:
• That
you need to make a change in your caregiving
situation.
• That you are grieving a loss.
• That you are experiencing increased
stress.
• That you need to be assertive and
ask for what you need.
Summing
Up
Remember, it is not selfish to focus on your
own needs and desires when you are a caregiver—it's
an important part of the job. You are responsible
for your own self-care. Focus on the following
self-care practices:
• Learn
and use stress-reduction techniques.
• Attend to your own healthcare needs.
• Get proper rest and nutrition.
• Exercise regularly.
• Take time off without feeling guilty.
• Participate in pleasant, nurturing
activities.
• Seek and accept the support of others.
• Seek supportive counseling when you
need it, or talk to a trusted counselor or
friend.
• Identify and acknowledge your feelings.
• Change the negative ways you view
situations.
• Set goals.
It's up to
you!
Credits
1 Shultz, Richard and Beach, Scott (1999). Caregiving
as A Risk for Mortality: The Caregiver Health
Effects Study. JAMA, December 15, 1999
- Vol. 282, No.23
A special thank
you the Powerful Tools for Caregivers program
for permission to use information from The Caregiver
Helpbook and their Powerful Tools for Caregivers
Class Leader Tips Manual. The Caregiver Helpbook,
is highly recommended reading for caregivers.
Information about classes and to order the book
go to the Powerful Tools for Caregivers website,
www.powerfultoolsforcaregivers.org.
The Caregiver
Helpbook, written by Vicki Schmall, Ph.D.,
Marilyn Cleland, R.N. and Marilynn Sturdevant,
RN, MSW, LCSW, (2000) is highly recommended
reading for caregivers. The book can be ordered
directly from Legacy Health Systems, (530) 413-6578.
caregiver@lhs.org or www.legacyhealth.org
RESOURCES
FCA Fact Sheet:
Caregiving and Depression
FCA
Fact Sheet:
Dementia, Caregiving and Controlling Frustration
Because
We Care: A Guide for People Who Care
Administration on Aging
Washington, DC 20201
Phone: (202) 619-0724
www.aoa.gov
Organizations
Family
Caregiver Alliance
National Center on Caregiving
180 Montgomery Street, Suite 900
San Francisco, CA 94104
(415) 434-3388
(800) 445-8106
Web Site: www.caregiver.org
E-mail: info@caregiver.org
Family Caregiver
Alliance (FCA) seeks to improve the quality
of life for caregivers through education, services,
research and advocacy.
Through its
National Center on Caregiving, FCA offers information
on current social, public policy and caregiving
issues and provides assistance in the development
of public and private programs for caregivers.
For residents
of the greater San Francisco Bay Area, FCA provides
direct support services for caregivers of those
with Alzheimer's disease, stroke, traumatic
brain injury, Parkinson's and other debilitating
disorders that strike adults.
Area
Agency on Aging
For caregiver support groups, respite providers,
and other caregiving services. Eldercare Locator:
(800) 677-1116
www.eldercare.gov
ARCH
National Respite Network and Resource Center
Call to find local respite providers.
(800) 473-1727
http://chtop.org/ARCH.html
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