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Alzheimer's:
Alzheimer's disease develops differently for every individual, there are many common symptoms. Early symptoms are often mistakenly thought to be 'age-related' concerns, or manifestations of stress.In the early stages, the most common symptom is difficulty in remembering recent events. When AD is suspected, the diagnosis is usually confirmed with tests that evaluate behaviour and thinking abilities, often followed by a brain scan if available.As the disease advances, symptoms can include confusion, irritability, aggression, mood swings, trouble with language, and long-term memory loss. As the sufferer declines they often withdraw from family and society.Gradually, bodily functions are lost, ultimately leading to death. Since the disease is different for each individual, predicting how it will affect the person is difficult. AD develops for an unknown and variable amount of time before becoming fully apparent, and it can progress undiagnosed for years. On average, the life expectancy following diagnosis is approximately seven years. Fewer than three percent of individuals live more than fourteen years after diagnosis.
Asthma: Hyper-responsive airways manifested by a narrowing of the airway.
Breast Cancer
Breast cancer is a type of cancer originating from breast tissue, most commonly from the inner lining of milk ducts or the lobules that supply the ducts with milk. Cancers originating from ducts are known as ductal carcinomas, while those originating from lobules are known as lobular carcinomas. Breast cancer occurs in humans and other mammals. While the overwhelming majority of human cases occur in women, male breast cancer can also occur.
The benefit versus harms of breast cancer screening is controversial. The characteristics of the cancer determine the treatment, which may include surgery, medications (hormonal therapy and chemotherapy), radiation and/or immunotherapy.Surgical provides the single largest benefit, and to increase the likelihood of cure, several chemotherapy regimens are commonly given in addition. Radiation is used after breast-conserving surgery and substantially improves local relapse rates and in many circumstances also overall survival.
Worldwide, breast cancer accounts for 22.9% of all cancers (excluding non-melanoma skin cancers) in women. Breast cancer is more than 100 times more common in women than in men, although men tend to have poorer outcomes due to delays in diagnosis.
Diabetes: Disease in which blood glucose levels are above normal
- Type 1 diabetes: diabetes of a form that usually develops during childhood or adolescence and is characterized by a severe deficiency of insulin secretion resulting from atrophy of the islets of Langerhans and causing hyperglycemia and a marked tendency toward ketoacidosis -- called also insulin-dependent diabetes, insulin-dependent diabetes mellitus, juvenile diabetes, juvenile-onset diabetes, type 1 diabetes mellitus
- Type 2 diabetes: a common form that develops especially in adults and most often in obese individuals and that is characterized by hyperglycemia resulting from impaired insulin utilization coupled with the body's inability to compensate with increased insulin production -- called also adult-onset diabetes, late-onset diabetes, maturity-onset diabetes, non-insulin-dependent diabetes, non-insulin-dependent diabetes mellitus, type 2 diabetes mellitus
Epileptic/Seizures
An epileptic seizure is a transient symptom of "abnormal excessive or synchronous neuronal activity in the brain".The outward effect can be as dramatic as a wild thrashing movement or as mild as a brief loss of awareness. It can manifest as an alteration in mental state, tonic or clonic movements, convulsions, and various other psychic symptoms. Sometimes it is not accompanied by convulsions but a full body "slump", where the person simply will lose body control and slump to the ground. The medical syndrome of recurrent, unprovoked seizures is termed epilepsy, but seizures can occur in people who do not have epilepsy.
CHF: Heart failure in which the heart is unable to maintain adequate circulation of blood in the tissues of the body or to pump out the venous blood returned to it by the venous circulation
COPD: Chronic obstructive pulmonary disease (COPD) is a catch-all term for a number of respiratory diseases. The diseases of COPD include chronic bronchitis, pulmonary emphysema, asthma, and bronchiectasis (a chronic inflammatory or degenerative condition of one or more bronchi or bronchioles marked by dilatation and loss of elasticity of the walls).
Cystic Fibrosis (CF): A life-threatening disorder that causes severe lung damage and nutritional deficiencies. CF is an inherited (genetic) condition affecting the cells that produce mucus, sweat, saliva and digestive juices. Normally, these secretions are thin and slippery, but in CF, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts, and passageways, especially in the pancreas and lungs. Respiratory failure is the most dangerous consequence of CF. Each year approximately 3,200 white babies are born in the United States with CF. The disease is much less common among black and Asian-American children. Most babies born with CF are diagnosed by age 3, although mild forms of the disease may not be detected until the third, fourth, or fifth decade of life. In all, about 30,000 American adults and children are living with the disorder. Although there's still no cure, the emerging field of gene therapy may someday help correct lung problems in people with CF.
Hepatitis C HCV (Hepatitis C Virus): An inflammation of the liver causing soreness and
swelling. It is the most common chronic blood-borne infection in the United
States. The hepatitis C virus usually is transmitted through contact with
infected blood, most commonly by sharing needles during intravenous drug use, or
getting a blood transfusion before 1992. Hepatitis C also may be spread through
unprotected sexual intercourse, but this is uncommon. Most people don't feel
sick when they are first infected with hepatitis C. Instead, the virus stays in
their liver and causes chronic liver inflammation.
Multiple Sclerosis: A chronic, potentially debilitating disease that affects your brain and
spinal cord (central nervous system). The illness is probably an autoimmune
disease, which means your immune system responds as if part of your body is a
foreign substance.In MS, your body directs antibodies and white blood cells
against proteins in the myelin sheath surrounding nerves in your brain and
spinal cord. This causes inflammation and injury to the sheath and ultimately to
your nerves. The result may be multiple areas of scarring (sclerosis). The
damage slows or blocks muscle coordination, visual sensation, and other nerve
signals.The disease varies in severity, ranging from a mild illness to one that
results in permanent disability. Treatments can modify the course of the disease
and relieve symptoms.An estimated 400,000 Americans have MS. It generally first
occurs in people between the ages of 20 and 50. The disease is twice as common
in women as in men.
Muscular Dystrophy: A group of rare inherited muscle diseases in which muscle fibers are
unusually susceptible to damage. Muscles, primarily your voluntary muscles,
become progressively weaker. In the late stages of muscular dystrophy, fat and
connective tissue often replace muscle fibers. In some types of muscular
dystrophy, heart muscles, other involuntary muscles and other organs are
affected. There are many forms of muscular dystrophy, some noticeable at birth
(congenital muscular dystrophy), others in adolescence (Becker MD), but the 3
most common types are Duchenne, facioscapulohumeral, and myotonic. The various
types of the disease affect more than 50,000 Americans. There's no cure, but
medications and therapy can slow the course of the disease.
Osteoporosis: A disease in which the density and quality of bone are reduced,
leading to weakness of the skeleton and increased risk of fracture, particularly
of the spine, wrist, hip, pelvis, and upper arm. Osteoporosis and associated
fractures are an important cause of mortality and morbidity.
Parkinson's Disease: Parkinson's disease belongs to a group of conditions called movement disorders.
It is both chronic, meaning it persists over a long period of time, and
progressive, meaning its symptoms grow worse over time.
Sleep Apnea: a breathing disorder characterized by brief interruptions of breathing during sleep.
- Central Sleep Apnea: Occurs when the brain fails to send the appropriate signals to the breathing muscles to initiate respirations.
- Obstructive Sleep Apnea: Occurs when air cannot flow into or out of the person’s nose or mouth, although efforts to breathe continue.
Urinary Incontinence: Incontinence is the inability to control the passage of urine. This can range from an occasional leakage of urine to a complete inability to hold any urine. Urinary incontinence affects approximately 13 million people in the United States and is more common in women than in men. It occurs in 10 percent to 25 percent of women younger than age 65 and in 15 percent to 30 percent of women older than age 60 who do not live in nursing homes. Among nursing home residents, incontinence is even more common, affecting more than 50 percent of female patients.
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.
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: 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.
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