Help for Patients & Caregivers
Help for Patients and Caregivers : Asthma
Asthma Is a Serious Lung Disease
What Causes Asthma?
Your Asthma Can Be Controlled With Proper Care
How To Take Care of Your Asthma
How To Work With Your Doctor
Is Your Ashma Under Control?
Taking the Right
Medicines at the Right
Asthma Medicines: Brand and Generic Names
How to Use Your Metered-Dose Inhaler the Right Way
Asthma Action Plan - Printable form
How to Use Your Peak Flow Meter
How to Control Things That Make Your Asthma Worse
For More Information
If you have asthma, you are not alone.
More than 14 million people in the United
States have this lung disease. Of these,
almost 5 million are children. Asthma is a
problem among all races. But the asthma
death rate and hospitalization rate for
blacks are three times the rate of whites.
Proper asthma care could prevent these
problems for all.
This website can help you learn how to
control your asthma or help a friend or
family member with asthma.
Asthma Is a Serious
Asthma makes the sides of the airways in
your lungs inflamed or swollen all the time.
See the drawing below. Your airways react
to things like smoke, dust, pollen, or other
things. Your airways narrow or become
smaller and you get common symptoms
like those listed in the box.
Asthma that is not well controlled can
cause many problems. People miss work
or school, go to the hospital, or even die because of their asthma. But you do not
have to put up with the problems asthma
What Causes Asthma?
The cause of asthma is still unknown. From studying asthma patients, researchers have concluded that the following factors can lead to asthma:
Genetic Factors: Asthma has the tendency to run in families. It has not yet been determined what genetic factors actually play a part in determining if a person will be diagnosed with asthma. Individuals who have allergies are more likely to have asthma as well.
Air Quality: General environmental factors such as house dust mites in bedding, carpet ad furnishings, exposure to tobacco smoke during pregnancy or as a small child, and children who are exposed to animals, pollens, molds and dust are more likely to have asthma. The occupational environment also has a large influence on our likelihood of having asthma. Pollens, molds, dust, gases and chemicals can cause our airways to become weak. The following are some examples of hazardous occupations likely to cause asthma: manufacturing, woodworking, farming and working with chemicals.
Dietary Changes: An increase in processed food, increase in salt intake, decrease in antioxidant intake and the lack of fresh oily fish may all increase the chances of cause asthma.
Lack of exercise: In the 21st century there has been an increase in the amount of television that is watched and a decrease in the amount of physical activity. This decrease in physical activity can cause a decrease in the strength of the airway passage causing the airway muscles to abnormally contract when irritated by environmental changes.
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Your Asthma Can Be
Controlled With Proper Care
With your doctor's help, you can control
your asthma and become free of symptoms
most of the time. But your asthma does
NOT go away when your symptoms go
away. You need to keep taking care of
Your asthma cannot be cured - having
asthma is a part of your life. So you need to
make taking care of your asthma a part of
your life. This is true even if your asthma
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How To Take Care of
- Work with your doctor and
see him or her at least every
See: “How To Work With Your
- Take your asthma medicines
exactly as your doctor tells you.
See: “Taking the Right Medicines at
the Right Times”
“How To Use Your Metered-Dose
Inhaler the Right Way”
“Asthma Action Plan”
- Watch for signs that your
asthma is getting worse and
See: “Asthma Action Plan” (The action plan gives you some
signs that your asthma is getting
worse and says when to take
“How To Use Your Peak Flow
- Stay away from or control
things that make your asthma
See: “How To Control Things That
Make Your Asthma Worse”
How To Work With
- Agree on clear treatment
goals with your doctor. Your
goal is to be able to say “no” to
all the questions in the box on
section titled, “Is Your Asthma
- Agree on what things you
need to do. Then do them.
- Ask questions until you feel you
know what your doctor wants
you to do, when you should do
it, and why. Tell your doctor if
you think you will have trouble
doing what is asked. You can
work together to find a treatment
plan that is right for you.
- Write down the things you are
supposed to do before you leave
the doctor's office, or soon after.
- Put up reminders to yourself to
take your medicine on time.
Put these notes in places where
you will see them.
- See your doctor at least every
6 months to check your asthma
and review your treatment.
Call for an appointment
if you need one.
Prepare a day or two
before each doctor's
- Answer the questions in "Is
Your Asthma Under Control?". Talk to your doctor
about your answers. Also, talk
about any changes in your home
or work that may have made
your asthma worse.
Write down questions and
concerns to discuss with your
doctor. Include ALL of your
concerns, even those you think
are not a big deal.
Bring your medicines and
written action plan to each
visit. If you use a peak flow
meter, bring it to each visit.
"The doctor would ask me at
each visit how little Jimmy's
asthma was. I always forgot to
mention some symptoms or
other problems. Now it's different.
Before we visit the doctor,
I write down when Jimmy
had symptoms in the past 2
weeks. I also write down all
the questions I have. Now
when I leave the doctor's office,
I feel happy that I got all my
- Deborah, mother of a child
|Is Your Ashma Under Control?
Answer these questions by checking "yes" or "no." Do this just before each doctor's visit.
In the past 2 weeks
|1. Have you coughed, wheezed, felt short of breath, or had chest tightness:
| - During the day?
| - At night, causing you to wake up?
| - During or soon after exercise?
|2. Have you needed more "quick-relief" medicine than usual?
|3. Has your asthma kept you from doing anything you wanted to do?
| If yes, what was it?
|4. Have you asthma medicines caused you any problems, like shakiness, sore throat, or upset stomach?
|In the past few months:
|5. Have you missed school or work because of you asthma?
|6. Have you gone to the emergency room or hospital because of your asthma?
|What Your Answers mean
|- All "no" asnwers? - Your asthma is under control.
- One or more "yes" answers? - Something needs to be done. Read the guide on how to get your asthma under control and talk to your doctor.
Taking the Right
Medicines at the Right
There are two main kinds of medicines
(1) those that
help with the long-term control
of asthma and
(2) those that give
short-term quick relief from
asthma symptoms. See the list of
brand and generic names for asthma
Are Taken Every Day To
will prevent symptoms and
control asthma. But it often takes
a few weeks before you feel the full
effects of this medicine.
Ask your doctor about taking
medicine if you:
- Have asthma symptoms three
or more times a week, or
- Have asthma symptoms at night
three or more times a month.
If you need a long-term-control medicine, you will need to keep
taking your medicine each day,
even when you feel well.
the only way you can keep your
asthma under control.
Make taking your long-termcontrol
medicine a part of your
daily routine—just like eating,
sleeping, and brushing your teeth.
The most effective long-term-control
medicines are those that
reduce swelling in your airways
(inflammation). These medicines
include inhaled steroids, cromolyn,
- Inhaled steroids and steroid
tablets or liquids are the
medicines. The steroids used
for asthma are NOT the same as
the unsafe steroids some athletes
take to build muscles.
- Inhaled steroids are used to
prevent symptoms and control
mild, moderate, and severe
asthma. Inhaled steroids are
safe when taken at recommended
doses. This is because
the medicine goes right to your
lungs where you need it. This
reduces the amount of medicine
you need and the chance of any
- Steroid tablets or liquids are
used safely for short times to
quickly bring asthma under
control. They are also used
longer term to control the most
- Cromolyn and nedocromil are
often the choice of medicine for
children with mild asthma.
- Inhaled long-acting beta2-
agonists are used to help control
moderate-to-severe asthma and
to prevent nighttime symptoms.
Long-acting beta2-agonists do
not reduce inflammation.
Therefore, patients taking this
medicine also need to take
inhaled steroids. Inhaled longacting
beta2-agonists should not
be used for quick relief of asthma
- Sustained-release theophylline
or sustained-release beta2-
agonist tablets can help prevent
nighttime symptoms. These
medicines are used with inhaled
steroids, nedocromil, or cromolyn.
Theophylline is sometimes
used by itself to treat mild
asthma. The dose for theophylline
must be checked over
time to prevent side effects.
- Zileuton and zafirlukast are a
more recent type of long-termcontrol
medicine. Studies so far
show that it is used mainly for
mild asthma in patients 12 years
of age and older.
Quick-Relief Medicines Are
Taken Only When Needed
Inhaled quick-relief medicine
quickly relaxes and opens your
airways and relieves asthma
symptoms. But it only helps for
about 4 hours. Quick-relief medicine
cannot keep symptoms from
coming back - only long-termcontrol
medicines can do that.
Take quick-relief medicine when
you first begin to feel symptoms - like coughing, wheezing, chest
tightness, or shortness of breath.
Your doctor may tell you to use a
peak flow meter to help you know
when to take your inhaled quickrelief
Do not delay taking your quickrelief
medicine when you have
symptoms. This can keep you from
having a really bad asthma attack.
Tell your doctor if you notice you
are using more of this medicine
than usual. This is often a sign that
your long-term-control medicine
needs to be changed or increased.
Make an Action Plan With
Ask your doctor to help you fill out
the "Asthma Action Plan".
Be sure you know when to take
your medicine and what to do when
your asthma gets worse.
"I always thought if you had
asthma you should expect to
have asthma symptoms. My
new doctor disagreed. She told
me to take an "inhaled steroid" every day for my asthma. Well,
I did not feel anything at first.
But after about 3 weeks, my
symptoms came less often.
Now, after a few months on
this medicine, I can see my
doctor was right. Asthma can
really be controlled."
Glen, a long-time asthma patient
|Asthma Medicines: Brand and Generic Names, 1997*
|Asthma Long-Term Control Medications
|Cromolyn and Nedocromil: Inhaled
|Leukotriene Modifiers: Tablets
|(extended release tablets)
||Proventil Repetabs ®
|Theophylline: Tablets or liquid
|Asthma Quick-Relief Medications
|Short-Acting Beta2-Agonists: Inhaled
Brethine® (tablet only)
Bricanyl® (tablet only)
|Steroids: Tablets or liquids
|* This glossary is a complete list of brand names associated with the
appropriate generic names of asthma medications, as listed in the United
States Pharmacopeial Convention, Inc., Approved Drug Products and Legal
Requirements, Volume III, 17th edition, 1997, and the USP DI Drug
Information for Health Care Professionals, Volume I, 17th edition, 1997.
This list does not constitute an endorsement of these products by
the National Heart, Lung, and Blood Institute.
|How to Use Your Metered-Dose Inhaler the Right Way
| Using an inhaler seems simple, but most patients do not use it the right way. When you use your inhaler the
wrong way, less medicine gets to your lungs. (Your doctor may give you other types of inhalers.)
For the next 2 weeks, read these steps aloud as you do them or ask someone to read them to you. Ask your
doctor or nurse to check how well you are using your inhaler.
Use your inhaler in one of the three ways pictured below (A or B are best, but C can be used if you have
trouble with A and B).
|Steps for Using Your Inhaler
|1. Take off the cap and shake the inhaler.
2. Breathe out all the way.
3. Hold your inhaler the way your doctor said (A, B, or C below).
Breathe in slowly
|4. As you start breathing in slowly through your mouth, press down
on the inhaler one time. (If you use a holding chamber, first press
down on the inhaler. Within 5 seconds, begin to breathe in slowly.)
5. Keep breathing in slowly, as deeply as you can.
|Hold your breath
||6. Hold your breath as you count to 10 slowly, if you can.
7. For inhaled quick-relief medicine (beta2-agonists), wait about
1 minute between puffs. There is no need to wait between puffs
for other medicines.
|A. Hold inhaler 1 to 2
inches in front of your
mouth (about the width
of two fingers).
||B. Use a spacer/holding
chamber. These come in
many shapes and can be
useful to any patient.
|C. Put the inhaler in your
mouth. Do not use for
|Clean Your Inhaler as Needed
Look at the hole where the medicine
sprays out from your inhaler. If you see
"powder" in or around the hole, clean
the inhaler. Remove the metal canister
from the L-shaped plastic mouthpiece.
Rinse only the mouthpiece and cap in
warm water. Let them dry overnight.
In the morning, put the canister back
inside. Put the cap on.
|Know When To Replace
For medicines you take each day
Say your new canister has 200 puffs
(number of puffs is listed on canister)
and you are told to take 8 puffs
So this canister will last 25 days.
If you started using this inhaler on
May 1, replace it on or before May 25.
You can write the date on your canister.
For quick-relief medicine take as
needed and count each puff.
Do not put your canister in water to
see if it is empty. This does not work.
|How to Use Your Peak Flow Meter
|A peak flow meter helps you check how well your asthma is controlled. Peak flow meters
are most helpful for people with moderate or severe asthma.
This guide will tell you (1) how to find your personal best peak flow number, (2) how to use
your personal best number to set your peak flow zones, (3) how to take your peak flow,
and (4) when to take your peak flow to check your asthma each day.
|Starting Out: Find Your Personal Best Peak Flow Number
To find your personal best peak
flow number, take your peak
flow each day for 2 to 3 weeks.
Your asthma should be under
good control during this time.
Take your peak flow as close to
the times listed below as you
can. These times for taking your
peak flow are only for finding
your personal best peak flow.
- Between noon and 2:00 p.m.
- Each time you take your quickrelief
medicine to relieve symptoms
(measure your peak flow
after you take your medicine)
- Any other time your doctor
Write down the number you get
for each peak flow reading.
The highest peak flow number
you had during the 2 to 3
weeks is your personal best.
Your personal best can change
over time. Ask your doctor
when to check for a new
To check your asthma each day,
you will take your peak flow in
the morning. This is discussed
in the coming text.
|Your Peak Flow Zones
||Your peak flow zones are based on your personal best peak flow number.
The zones will help you check your asthma and take the right
actions to keep it controlled. The colors used with each zone come
from the traffic light.
||Green Zone (80 to 100 percent of your personal best) signals good
control. Take your usual daily long-term-control medicines, if you
take any. Keep taking these medicines even when you are in the
yellow or red zones.
||Yellow Zone (50 to 79 percent of your personal best) signals caution:
your asthma is getting worse. Add quick-relief medicines.
You might need to increase other asthma medicines as directed by
||Red Zone (below 50 percent of your personal best) signals medical
alert! Add or increase quick-relief medicines and call your doctor now.
Ask your doctor to write an action plan for you that tells you:
- The peak flow numbers for your green, yellow, and red zones. Mark
the zones on your peak flow meter with colored tape or a marker.
- The medicines you should take while in each peak flow zone.
How To Take Your Peak Flow
- Move the marker to the bottom
of the numbered scale.
- Stand up or sit up straight.
- Take a deep breath. Fill your
lungs all the way.
- Hold your breath while you
place the mouthpiece in your
mouth, between your teeth.
Close your lips around it.
Do not put your tongue
inside the hole.
- Blow out as hard and fast as
you can. Your peak flow
meter will measure how fast
you can blow out air.
- Write down the number you
get. But if you cough or
make a mistake, do not write
down the number. Do it over
- Repeat steps 1 through 6 two
more times. Write down the
highest of the three numbers.
This is your peak flow
- Check to see which peak flow
zone your peak flow number
is in. Do the actions your
doctor told you to do while in
Your doctor may ask you to
write down your peak flow
numbers each day. You can do
this on a calendar or other
paper. This will help you and
your doctor see how your
asthma is doing over time.
Checking Your Asthma: When To Use Your Peak Flow Meter
- Every morning when you
wake up, before you take
medicine. Make this part of
your daily routine.
- When you are having asthma
symptoms or an attack.
And after taking medicine for the attack. This can tell you
how bad your asthma attack
is and whether your medicine
- Any other time your doctor
suggests. If you use more than one peak
flow meter (such as at home and
at school), be sure that both
meters are the same brand.
Bring to Each of Your Doctor's Visits:
- Your peak flow meter.
- Your peak flow numbers if
you have written them down
Also, ask your doctor or nurse
to check how you use your peak
flow meter - just to be sure you
are doing it right.
How to Control Things That Make Your Asthma Worse
You can help prevent asthma attacks by staying away
from things that make your asthma worse. This
guide suggests many ways to help you do this.
You need to find out what makes your asthma
worse. Some things that make asthma worse for
some people are not a problem for others. You do
not need to do all of the things listed in this guide.
Look at the things listed in dark print below. Put a
check next to the ones that you know make your
asthma worse. Ask your doctor to help you find out
what else makes your asthma worse. Then, decide
with your doctor what steps you will take. Start with
the things in your bedroom that bother your asthma.
Try something simple first.
- If you smoke, ask your doctor for ways to help
you quit. Ask family members to quit
- Do not allow smoking in your home or around
- Be sure no one smokes at a child's day care
Smoke, Strong Odors, and Sprays
- If possible, do not use a wood-burning stove,
kerosene heater, or fireplace.
- Try to stay away from strong odors and sprays,
such as perfume, talcum powder, hair spray,
- Fix leaky faucets, pipes, or other sources of
- Clean moldy surfaces with a cleaner that has
bleach in it.
Many people with asthma are allergic to dust mites.
Dust mites are like tiny "bugs" you cannot see that live
in cloth or carpet.
Things that will help the most:
- Encase your mattress in a special dust-proof
- Encase your pillow in a special dust-proof
cover* or wash the pillow each week in hot
water. Water must be hotter than 1300F to
kill the mites.
- Wash the sheets and blankets on your bed each
week in hot water.
Other things that can help:
- Reduce indoor humidity to less than
50 percent. Dehumidifiers or central air
conditioners can do this.
- Try not to sleep or lie on cloth-covered cushions
- Remove carpets from your bedroom and those
laid on concrete, if you can.
- Keep stuffed toys out of the bed or wash the
toys weekly in hot water.
Some people are allergic to the flakes of skin or dried
saliva from animals with fur or feathers.
The best thing to do:
- Keep furred or feathered pets out of your home.
If you can't keep the pet outdoors, then:
- Keep the pet out of your bedroom and keep the
bedroom door closed.
- Cover the air vents in your bedroom with heavy
material to filter the air.*
- Remove carpets and furniture covered with
cloth from your home. If that is not possible,
keep the pet out of the rooms where these are.
Many people with asthma are allergic to the dried droppings
and remains of cockroaches.
- Keep all food out of your bedroom.
- Keep food and garbage in closed containers
(never leave food out).
- Use poison baits, powders, gels, or paste
(for example, boric acid). You can also use
- If a spray is used to kill roaches, stay out of
the room until the odor goes away.
- Try to get someone else to vacuum for you
once or twice a week, if you can. Stay out of
rooms while they are being vacuumed and for
a short while afterward.
- If you vacuum, use a dust mask (from a
hardware store), a double-layered or microfilter
vacuum cleaner bag,* or a vacuum cleaner
with a HEPA filter.*
Pollen and Outdoor Mold
What to do during your allergy season (when pollen
or mold spore counts are high):
- Try to keep your windows closed.
- Stay indoors with windows closed during the
midday and afternoon, if you can. Pollen and
some mold spore counts are highest at that
- Ask your doctor whether you need to take or
increase anti-inflammatory medicine before
your allergy season starts.
Exercise, Sports, Work, or Play
- You should be able to be active without
symptoms. See your doctor if you have
asthma symptoms when you are active - like
when you exercise, do sports, play, or work
- Ask your doctor about taking medicine before
you exercise to prevent symptoms.
- Warm up for about 6 to 10 minutes before you
- Try not to work or play hard outside when the
air pollution or pollen levels (if you are allergic
to the pollen) are high.
Other Things That Can Make
- Flu: Get a flu shot.
- Sulfites in foods: Do not drink beer or wine
or eat shrimp, dried fruit, or processed
potatoes if they cause asthma symptoms.
- Cold air: Cover your nose and mouth with a
scarf on cold or windy days.
- Other medicines: Tell your doctor about all
the medicines you may take. Include cold
medicines, aspirin, and even eye drops.
Contact These Groups to Learn More About Asthma:
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10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
Tips for Family Caregivers from Doctors
- Write questions down so you won’t forget them
- Be clear about what you want to say to the doctor. Try not to ramble.
- If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
- Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
- Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
- Recognize that not all questions have answers—especially those beginning with “why.”
- Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
- Appreciate what the doctor is doing to help and say thank you from time to time.
Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.
What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:
- Gathering information from healthcare providers;
- An assessment of your care recipient and the home environment;
- Research into available public and/or private services and resources to meet your loved one’s needs; and
- Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.
Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.
Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.
Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.
Write down your observations of the present situation including:
- Your loved one’s ability to function independently, both physically and mentally.
- The availability of family and/or friends to form a support network to share the care.
- The physical environment: Is it accessible or can it be adapted at reasonable cost?
- Your other responsibilities — at work, at home, and in the community.
- Your own health and physical abilities.
- Your financial resources, available insurance, and existence of healthcare or end-of-life documents.
This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.
Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.
Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.
Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?
Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.
Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.
Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.
Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.
©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650
Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.
How do you care for your mobility device?
The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.
When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.
Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.
National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
Web site: http://www.thefamilycaregiver.org
The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.
Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.