Learn about 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.
- Amyotrophic lateral sclerosis (ALS)
- Breast Cancer
- Congestive Heart Failure
- Cystic Fibrosis
- Hepatitis C
- Multiple Sclerosis
- Muscular Dystrophy
- Parkinson's Disease
- Post-Polio Syndrome
- Sleep Apnea
- Spina Bifida
- Spinal Cord Injury
- Traumatic Brain Injury
10 Tips for Family Caregivers
- Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
- Watch out for signs of depression, and don’t delay in getting professional help when you need it.
- When people offer to help, accept the offer and suggest specific things that they can do.
- Educate yourself about your loved one’s condition and how to communicate effectively with doctors.
- There’s a difference between caring and doing. Be open to technologies and ideas that promote your loved one’s independence.
- Trust your instincts. Most of the time they’ll lead you in the right direction.
- Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
- Grieve for your losses, and then allow yourself to dream new dreams.
- Seek support from other caregivers. There is great strength in knowing you are not alone.
- 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
Questions to Ask Your Healthcare Providers
Review this list of questions as you are planning and preparing for any interaction with the health care system (e.g., doctor visit, trip to the emergency room, hospital discharge planning session, etc.) The questions are organized by category. Select the questions that best fit your needs. Feel free to add your own.
About Medical Care in General
- What might have caused this illness?
- What is this illness called?
- Is this illness likely to go away on its own?
- Is the pain likely to diminish or go away?
- How do you want to treat this illness?
- What are other ways to treat this illness?
- What are the risks with these treatments?
- What is the likely future of this illness with the recommended treatment?
- Without the recommended treatment?
- What is the time frame for the treatment?
- Is a hospital stay necessary?
- What is the expected recovery time?
- What lifestyle changes can my care recipient expect in the future?
- Is the recommended test or procedure necessary to confirm or disprove a diagnosis?
- Will the findings of the test change the way the disease is managed?
- What are the risks involved?
- What happens if my care recipient refuses to undergo this test?
- How expensive is the test and is it covered by my insurance?
- Will the test require a change in any of the medications my care recipient is taking?
- What are the chances of inaccurate test results?
- What is the test procedure?
- How will the test feel? Will it be painful?
- How should I help my care recipient prepare for this test?
- Will my care recipient need help getting home afterward?
- Who will interpret the test results?
- Will someone call with the test results or should I phone for them?
- Can test results be sent directly to me or my care recipient?
Regarding the Costs of Medical CareRegarding Discharge Planning
- What days/hours is the office open?
- How are medical emergencies handled?
- When is the best time to reach the doctor by phone, fax or e-mail?
- Which method of communication does the doctor prefer?
- Who can answer questions if the doctor is not available?
- Who can I call after hours or when the doctor is away?
- What private insurance plans do you accept?
- Do you accept Medicaid/Medicare assignments?
- What costs are covered by Medicaid/Medicare? Supplemental insurance?
- What costs are not covered by insurance?
- Approximately how much can I expect to pay in the long run for treatment?
As part of the discharge planning process, many issues related to the patient’s care need to be resolved. As soon as you know your loved one is going to be admitted to the hospital, find out who is in charge of the discharge process and arrange a meeting to gather specific answers to the following questions.
- Where is the patient going to go after discharge? (Return to the previous setting? Go someplace else temporarily? Move permanently to a new location?)
- Who will provide additional home health care if it is needed?
- Does the patient need any home health equipment? What kind?
- Do physical and/or occupational therapy visits need to be arranged?
Information on Seating & Mobility
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 failedbearings. 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.
How to Communicate with an Insurance Provider
Before you pick up the phone to speak to a claims representative, you need to gather some information. Be prepared to give the person you talk with:
- Your name and your relationship to your care recipient
- Your care recipient’s birth date
- The insurance policy number
- The name and address of the organization that sent the bill
- The total amount of the bill
- The diagnosis code on the bill
- The Explanation of Benefits (if you are questioning an insurance payment)
When you start the conversation, ask for the name and telephone extension of the individual who is handling your phone call. If you need to call again, you will want to try to speak with the same person. Keep in mind that billing office personnel and insurance claims representatives are there to serve you. You are the customer. Be assertive. You should expect to:
- Be treated with respect and consideration.
- Have your concerns clarified.
- Have your questions answered with accurate and timely information.
- Be informed of any steps you need to take to move things along.
Here are some tips for communicating effectively with people who work in the health insurance system.
- Be Prepared. Before you call an insurance company, write down a list of the questions you have so you can handle everything in one phone call.
- Take Good Notes. Take notes about your phone conversations, including the name of the insurance representative, the date of the call and the information you were given. For convenience, put this in your care recipient notebook.
- Be Clear and Concise. State clearly and briefly what your question or concern is, what you need and what you expect.
- Be Patient. Health insurance issues can be frustrating and time-consuming. Accept that you will spend a certain amount of time navigating through automated telephone menus, waiting on hold and waiting for the claims process to be completed.
- Be Considerate. Most insurance personnel want to do their jobs well, and they have a tough job to do. Thank them when they have been helpful. Speak to them kindly. Assume that they are trying to help you.
- Follow Through. If the insurance company asks you to do something or to send additional information, do it right away. Don’t let it slide. This will help them get the bill paid. Above all, be persistent. Stay in touch. Keep after an issue until it is resolved.
Excerpted from Communicating Effectively with Healthcare Providers
©National Family Caregivers Association | www.nfcacares.org | Phone: 800/896-3650
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.
- The Stress of Family Caregiving
- When Your Loved One Isn’t Very Lovable
- Share the Caring: Action Checklists for Family Caregivers
Helpful Links & Resources
- Compare Home Health Agencies in Your Area
- Find a Doctor
- Know Your Options: An Online Guide to Homecare Products & Home Accessibility
- National Family Caregivers Association
What is a caregiver?
A caregiver is anyone who provides help to another person in need. Usually, the person receiving care has a condition such as dementia, cancer, or brain injury and needs help with basic daily tasks. Caregivers help with many things such as:
- grocery shopping
- house cleaning
- paying bills
- giving medicine
- using the toilet
People who are not paid to provide care are known as informal caregivers or family caregivers. The most common type of informal caregiving relationship is an adult child caring for an elderly parent. Other types of caregiving relationships include:
- adults caring for other relatives, such as grandparents, siblings, aunts, and uncles
- spouses caring for elderly husbands or wives
- middle-aged parents caring for severely disabled adult children
- adults caring for friends and neighbors
- children caring for a disabled parent or elderly grandparent
Who are our nation's caregivers?
Most Americans will be informal caregivers at some point during their lives. During any given year, there are more than 44 million Americans (21% of the adult population) who provide unpaid care to an elderly or disabled person 18 years or older. Altogether, informal caregivers provide 80 percent of the long-term care in the United States.
- Sixty-one percent of caregivers are women.
- Most caregivers are middle-aged.
- Thirteen percent of caregivers are aged 65 years and older.
Fifty-nine percent of informal caregivers have jobs in addition to caring for another person. Because of time spent caregiving, more than half of employed women caregivers have made changes at work, such as going in late, leaving early, or working fewer hours.
What is caregiver stress?
Caregiver stress is the emotional and physical strain of caregiving. It can take many forms. For instance, you may feel:
- frustrated and angry taking care of someone with dementia who often wanders away or becomes easily upset
- guilty because you think that you should be able to provide better care, despite all the other things that you have to do
- lonely because all the time you spend caregiving has hurt your social life
- exhausted when you go to bed at night
Caregiver stress appears to affect women more than men. About 75 percent of caregivers who report feeling very strained emotionally, physically, or financially are women.
Although caregiving can be challenging, it is important to note that it can also have its rewards. It can give you a feeling of giving back to a loved one. It can also make you feel needed and can lead to a stronger relationship with the person receiving care. About half of caregivers report that:
- they appreciate life more as a result of their caregiving experience
- caregiving has made them feel good about themselves
Can caregiver stress affect my health?
Although most caregivers are in good health, it is not uncommon for caregivers to have serious health problems. Research shows that caregivers:
- are more likely to be have symptoms of depression or anxiety
- are more likely to have a long-term medical problem, such as heart disease, cancer, diabetes, or arthritis
- have higher levels of stress hormones
- spend more days sick with an infectious disease
- have a weaker immune response to the influenza, or flu, vaccine
- have slower wound healing
- have higher levels of obesity
- may be at higher risk for mental decline, including problems with memory and paying attention
One research study found that elderly people who felt stressed while taking care of their disabled spouses were 63 percent more likely to die within 4 years than caregivers who were not feeling stressed.
Part of the reason that caregivers often have health problems is that they are less likely to take good care of themselves. For instance, women caregivers, compared with women who are not caregivers, are less likely to:
- get needed medical care
- fill a prescription because of the cost
- get a mammogram
Also, caregivers report that, compared with the time before they became caregivers, they are less likely to:
- get enough sleep
- cook healthy meals
- get enough physical activity
How can I tell if caregiving is putting too much stress on me?
Caregiving may be putting too much stress on you if you have any of the following symptoms:
- feeling overwhelmed
- sleeping too much or too little
- gaining or losing a lot of weight
- feeling tired most of the time
- loss of interest in activities you used to enjoy
- becoming easily irritated or angered
- feeling constantly worried
- often feeling sad
- frequent headaches, bodily pain, or other physical problems
- abuse of alcohol or drugs, including prescription drugs
Talk to a counselor, psychologist, or other mental health professional right away if your stress leads you to physically or emotionally harm the person you are caring for.
What can I do to prevent or relieve stress?
To begin with, never dismiss your feelings as "just stress." Caregiver stress can lead to serious health problems and you should take steps to reduce it as much as you can.
Research shows that people who take an active, problem-solving approach to caregiving issues are less likely to feel stressed than those who react by worrying or feeling helpless. For instance, someone with dementia may ask the same question over and over again, such as, "Where is Mary?" A positive way of dealing with this would be to say, "Mary is not here right now," and then distract the person. You could say, "Let's start getting lunch ready," or involve the person in simple tasks, such as folding laundry.
Some hospitals offer classes that can teach you how to care for someone with the disease that your loved one is facing. To find these classes, ask your doctor, contact an organization that focuses on this disease, or call your local Area Agency on Aging (see below). Other good sources of caregiving information include:
- doctors and nurses
- library books
- web sites of disease-specific organizations
Here are some more tips for reducing stress:
- Find out about caregiving resources in your community (see below).
- Ask for and accept help. Be prepared with a mental list of ways that others can help you, and let the helper choose what she would like to do. For instance, one person might be happy to take the person you care for on a walk a couple times a week. Someone else might be glad to pick up some groceries for you.
- If you need financial help taking care of a relative, don't be afraid to ask family members to contribute their fair share.
- Say "no" to requests that are draining, such as hosting holiday meals.
- Don't feel guilty that you are not a "perfect" caregiver. Just as there is no "perfect parent," there is no such thing as a "perfect caregiver." You're doing the best you can.
- Identify what you can and cannot change. You may not be able to change someone else's behavior, but you can change the way that you react to it.
- Set realistic goals. Break large tasks into smaller steps that you can do one at a time.
- Prioritize, make lists, and establish a daily routine.
- Stay in touch with family and friends.
- Join a support group for caregivers in your situation, such as caring for someone with dementia. Besides being a great way to make new friends, you can also pick up some caregiving tips from others who are facing the same problems you are.
- Make time each week to do something that you want to do, such as go to a movie.
- Try to find time to be physically active on most days of the week, eat a healthy diet, and get enough sleep.
- See your doctor for a checkup. Tell her that you are a caregiver and tell her about any symptoms of depression or sickness you may be having.
- Try to keep your sense of humor.
If you work outside the home and are feeling overwhelmed, consider taking a break from your job. Employees covered under the federal Family and Medical Leave Act may be able to take up to 12 weeks of unpaid leave per year to care for relatives. Ask your human resources office about options for unpaid leave.
What caregiving services can I find in my community?
Caregiving services include:
- meal delivery
- home health care services (such as nursing or physical therapy)
- non-medical home care services (such as housekeeping, cooking, or companionship)
- home modification (changes to the home that make it easier for your loved one to perform basic daily tasks, such as bathing, using the toilet, and moving around)
- legal and financial counseling
What can I do if I need a break?
Taking some time off from caregiving can reduce stress. "Respite care" provides substitute caregiving to give the regular caregiver a much-needed break. Below are the various types of respite services that are available:
- In-home respite. In this type of service, someone comes to your home to provide care. The type of care can range from simple companionship to nursing services.
- Adult day-care centers. Many adult day-care centers are located in churches or community centers. Some day-care centers provide care for both elderly adults and young children. During the day, the two groups meet for several hours to share in activities such as reading stories. This type of contact seems to benefit both young and old.
- Short-term nursing homes. If your loved one needs occasional nursing care and you must leave town for a couple weeks, some nursing homes will care for your loved one while you are gone.
- Day hospitals. Some hospitals provide medical care to patients during the day and then at night, the patient returns home.
What devices can I buy that will help me provide care?
There are devices that you can buy that can help you make sure that your loved one is safe. Below are some examples:
- Emergency response systems involve a button on a necklace, bracelet, or belt that your loved one wears. If she has an emergency and you are not home, she presses the button to alert a monitoring center. The center then alerts medical personnel and you. These systems are intended for people who can press the button and do not have dementia.
- An intercom system allows you to hear your loved one from another area of your home.
- A Webcam is a video camera that allows you to see your loved one from another area of your home.
- Mobility monitors use a small transmitter to help keep track of people with dementia. When your loved one wearing a transmitter strapped to her ankle or wrist passes out of a set range, the transmitter alerts you that your loved one is wandering away.
Also, researchers are developing technologies to allow doctors and nurses to examine and treat patients from locations different than the patient's. This new field is called telemedicine. It uses a communication system, like the Internet or two-way television, to collect medical information and provide instructions to the caregiver and patient. Telemedicine will be most useful in rural areas where few doctors are available. Some states already have limited telemedicine programs in operation.
How do I find out about caregiving services in my community?
Contact your local Area Agency on Aging (AAA) to learn about caregiving services where you live. AAAs are usually listed in the city or county government sections of the telephone directory under "Aging" or "Health and Human Services." The National Eldercare Locator, a service of the U.S. Administration on Aging, can also help you find your local AAA.
You might also want to consult with an eldercare specialist, a professional who specializes in aging-related issues. An eldercare specialist assists older adults and their family members by assessing their needs and identifying the best services and devices available to meet those needs. To find an eldercare specialist in your area, ask your doctor or local AAA.
How will I pay for home health care and other caregiving services?
Medicare, Medicaid, and private insurance companies will cover some of the costs of home health care. Other costs you will have to pay for yourself.
The costs of home care depends on what services you use. Non-medical workers like housekeepers are much less expensive than nurses or physical therapists. Also, some home care agencies are less expensive than others.
To find out if you are eligible for Medicare home health care services, read the free publication Medicare and Home Health Care (Publication No. CMS-10969), available at http://www.medicare.gov/Publications/Pubs/pdf/10969.pdf. You can also call your Regional Home Health Intermediary. To find the phone number, go to the Contacts Database of the Centers for Medicare & Medicaid Services at:http://www.cms.hhs.gov/apps/contacts. You can also call 1-800-MEDICARE (1-800-633-4227).
To qualify for Medicaid, you must have a low income and few other assets. To find out if you qualify for Medicaid, call your State Medical Assistance Office. To find the phone number, go to the Contacts Database of the Centers for Medicare & Medicaid Services at:http://www.cms.hhs.gov/apps/contacts. You can also call 1-800-MEDICARE (1-800-633-4227).
Besides Medicare and Medicaid, there is another federal program, called the National Family Caregiver Support Program, that helps states provide services for family caregivers. To be eligible for the program, a caregiver must:
- care for an adult aged 60 years and older, or
- care for a person of any age with Alzheimer’s disease or a related disorder
- be a grandparent or relative 55 years of age or older who is the primary caregiver of a child under the age of 18, or
- be a grandparent or relative 55 years of age or older providing care to an adult, aged 18 to 59 years, with a disability
Each state offers different amounts and types of services. These include:
- information about available services
- help accessing support services
- individual counseling and organization of support groups
- caregiver training
- respite care
- supplemental services, supplies, and equipment, such as home modifications, emergency response systems, nutritional supplements, incontinence supplies, etc.
To access services under the National Family Caregiver Support Program, contact your local Area Agency on Aging.
Sources: Office on Women's Health in the Department of Health and Human Services.