Help for Patients and Caregivers

Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers. • Alzheimers • Diabetes • Osteoporosis • Asthma • Epilepsy/Seizures • Parkinson's Disease • Breast Cancer • Hepatitis C • Sleep Apnea • CHF • Multiple Sclerosis • Urinary Incontinence • COPD • Muscular Dystrophy • Wound Care • Cystic Fibrosis • Obesity

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 Times 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 Asthma Is a Serious Lung Disease 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 can cause. 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. <<Back to Top>> 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. 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 is mild.     <<Back to Top>> How To Take Care of Your Asthma Work with your doctor and see him or her at least every 6 months. See: “How To Work With Your Doctor” 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 act quickly. See: “Asthma Action Plan” (The action plan gives you some signs that your asthma is getting worse and says when to take medicines.) “How To Use Your Peak Flow Meter” Stay away from or control things that make your asthma worse. See: “How To Control Things That Make Your Asthma Worse” How To Work With Your Doctor 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 Under Control?” 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. <<Back to Top>> Prepare a day or two before each doctor’s visit: 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 issues addressed.” - Deborah, mother of a child with asthma 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? _______ Yes _______ No       - At night, causing you to wake up? _______ Yes _______ No       - During or soon after exercise? _______ Yes _______ No 2. Have you needed more "quick-relief" medicine than usual? _______ Yes _______ No 3. Has your asthma kept you from doing anything you wanted to do? _______ Yes _______ No       If yes, what was it?           ____________________________________________________________       ____________________________________________________________ 4. Have you asthma medicines caused you any problems, like shakiness, sore throat, or upset stomach? _______ Yes _______ No In the past few months:     5. Have you missed school or work because of you asthma? _______ Yes _______ No 6. Have you gone to the emergency room or hospital because of your asthma? _______ Yes _______ No 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.     <<Back to Top>> Taking the Right Medicines at the Right Times There are two main kinds of medicines for asthma: (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 medicines. Long-Term-Control Medicines Are Taken Every Day To Control Asthma Long-term-control medicines 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 daily long-term-control 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. This is 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 Long-Term-Control Medicines The most effective long-term-control medicines are those that reduce swelling in your airways (inflammation). These medicines include inhaled steroids, cromolyn, and nedocromil. Inhaled steroids and steroid tablets or liquids are the strongest long-term-control 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 side effects. 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 severe asthma. 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 attacks. 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 medicines. 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 Your Doctor 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 <<Back to Top>> Asthma Medicines: Brand and Generic Names, 1997* Asthma Long-Term Control Medications Generic Name Brand Name Steroids: Inhaled belomethasone Beclovent® Vanceril®, Vanceril®—Double Strength budesonide Pulmicort Turbuhalor® flunisolide AeroBid®, AeroBid-M® fluticasone Flovent® triamcinolone Azmacort® Cromolyn and Nedocromil: Inhaled cromolyn sodium Intal® nedocromil sodium Tilade® Leukotriene Modifiers: Tablets zafirlukast Accolate® zileuton Zyflo® Long-Acting Beta2-Agonists salmeterol (inhaled) Serevent® albuterol Volmax® (extended release tablets) Proventil Repetabs ® Theophylline: Tablets or liquid Aerolate® III Aerolate® JR Aerolate® SR Choledyl® SA Elixophyllin® Quibron®-T Quibron®-T/SR Slo-bid® Slo-Phyllin® Theo-24® Theochron® Theo-Dur® Theolair® Theolair®-SR T-Phyl® Uni-Dur® Uniphyl® Asthma Quick-Relief Medications Generic Name Brand Name Short-Acting Beta2-Agonists: Inhaled albuterol Airet® Proventil® Proventil HFA® Ventolin® Ventolin® Rotacaps bitolterol Tornalate® pirbuterol Maxair® terbutaline Brethaire® Brethine® (tablet only) Bricanyl® (tablet only) Anticholinergics: Inhaled ipratropium bromide Atrovent® Steroids: Tablets or liquids methylprednisolone Medrol® prednisone Prednisone Deltasone® Orasone® Liquid Pred® Prednisone Intensol® prednisolone Prelone® Pediapred®   * 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. <<Back to Top>> 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   Getting Ready   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 steroids. 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 Your Inhaler For medicines you take each day (an example): Say your new canister has 200 puffs (number of puffs is listed on canister) and you are told to take 8 puffs per day. 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. <<Back to Top>> 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 day Each time you take your quickrelief medicine to relieve symptoms (measure your peak flow after you take your medicine) Any other time your doctor suggests 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 personal best. 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 your doctor. 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 again. Repeat steps 1 through 6 two more times. Write down the highest of the three numbers. This is your peak flow number. Check to see which peak flow zone your peak flow number is in. Do the actions your doctor told you to do while in that zone. 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 is working. 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 each day. Also, ask your doctor or nurse to check how you use your peak flow meter—just to be sure you are doing it right. <<Back to Top>> 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. Tobacco Smoke If you smoke, ask your doctor for ways to help you quit. Ask family members to quit smoking, too. Do not allow smoking in your home or around you. Be sure no one smokes at a child’s day care center. 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, and paints. Indoor Mold Fix leaky faucets, pipes, or other sources of water. Clean moldy surfaces with a cleaner that has bleach in it. Dust Mites 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 cover.* 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 or furniture. 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. Animal Dander 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. Cockroach 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 traps. If a spray is used to kill roaches, stay out of the room until the odor goes away. Vacuum Cleaning 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 time. 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 hard. Ask your doctor about taking medicine before you exercise to prevent symptoms. Warm up for about 6 to 10 minutes before you exercise. 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 Asthma Worse 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.   <<Back to Top>> Contact These Groups to Learn More About Asthma: National Asthma Education and Prevention Program NHLBI Information Center, P.O. Box 30105, Bethesda, MD 20824-0105 Phone: 301-251-1222 Internet: http://www.nhlbi.nih.gov/index.htm Allergy and Asthma Network/ Mothers of Asthmatics, Inc. Phone: 800-878-4403 Internet: http://www.aanma.org American Academy of Allergy, Asthma, and Immunology Phone: 800-822-2762 Internet: http://www.aaaai.org American College of Allergy, Asthma, and Immunology Phone: 800-842-7777 Internet: http://allergy.mcg.edu American Lung Association Phone: 800-586-4872 Internet: http://www.lungusa.org Asthma and Allergy Foundation of America Phone: 800-727-8462 Internet: http://www.aafa.org National Jewish Medical and Research Center (Lung Line®) Phone: 800-222-5864 Internet: http://www.njc.org   <<Back to Top>>

CAREGIVER TIPS & INFORMATION:   • 10 Tips for Family Caregivers   • Questions to Ask Your Healthcare Provider   • How to Communicate with an Insurance Provider   • Find a Doctor   • Information on Seating & Mobility   • Tips for Family Caregivers from Doctors   • Care Management Techniques You Can Use   • Compare Home Health Agencies in Your Area   • Keep loved ones connected & updated!   • Additional Resources   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. <<Back to Top>> 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. <<Back to Top>> 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 <<Back to Top>> 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. <<Back to Top>> Additional Resources 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 800-896-3650 Web site: http://www.thefamilycaregiver.org e-mail: info@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. http://www.caregiver.org http://www.caregiving.org http://www.caregiving.com http://www.caregiver.com <<Back to Top>>