|
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
|
