Assessing the Impact of Illness

 Where are WE? Where might we be going?

Introductory information to help you and your family get started and plan ahead.

Changes in one's health may be caused by infections, injuries, genetic predispositions, exposures to unhealthy substances such as cigarette smoke, alcohol, certain drugs and foods, lifestyle, habits, and age-related changes that alter the functioning of various parts of the body. When normal functioning is altered, specific signs, complaints, symptoms, and lab findings occur. The evidence of what is happening inside the body - these signs and symptoms - often affects one's appearance, thinking, feelings, emotions, and behaviors. Health changes in one family member often impact the health of others. Causes of a particular disorder (infection, violence, genetics, environmental tobacco smoke, etc.) may be shared. Increased stress related to illness, increased workload, finances, and caregiving can easily take a toll on the health of other family members.

As the signs and symptoms of health changes started to occur and became apparent to you and your loved one, both of you probably began to look for their cause(s). Sudden symptoms of serious heart and lung disorders (such as severe pain or shortness of breath) may have prompted a visit to the hospital emergency department. Signs of cancer such as a lump, a change in bowel functioning, or a sore that doesn't heal may have led you to make an appointment with your health care provider. Gradual declines in short-term memory and judgment may have raised fears of Alzheimer's disease and dementia. Health screenings and routine check-ups may have detected the disorders such as vision and hearing losses, osteoporosis or arthritis, diabetes, reduced blood circulation to the brain, heart and legs, prostate enlargement, and pre-cancerous lesions. Questions, concerns, and fears may have led to a search for information from knowledgeable friends, a library, and the Internet. Finding reliable information available on the Internet is introduced in the Caring for Your Partner and Caring for Your Parent booklets, available at www.CaringPartnersDE.org.

Where are you now? You may still be in the process of seeking a diagnosis, understanding how the illness and/or age-related changes will impact your loved one, and what it will mean for you as a wife or husband, son or daughter. What changes may be anticipated? What is the usual course or timeline for changes that may require transitions in your life? What symptoms and signs might be expected and controlled through care? Which signal the need for immediate medical help? What can family members do to reduce the impact of illness on them? This module will help you find the information that you need to prepare for the impact of illness.

Some important goals to think about...

• Getting the information needed to support your loved one safely through the various phases and changes of aging and / or the illness that he or she is experiencing.
• Understanding the relationships between alterations in the body and their cause(s), and signs and symptoms, including effects on physical, emotional, behavioral and social health.
• Anticipating care receiver and caregiver needs and transitions commonly associated with the diagnosed disorder.
• Considering the ways that the illness experience affects your life as a caregiver and the lives of those closest to you - your children, your well spouse or well parent.

Where do you find information about the impact of the disorder affecting you or your loved one?

It is essential to gather some basic information about the disorder that is about to change your life and that of your loved one. There are many excellent sources for this type of information - from the physician, nurses, therapists involved with diagnosis and treatment to some very informative websites, booklets, books, CD-ROMs, tapes and programs. Placing the type of disorder (i.e. breast cancer) in the context of your relationship to the care receiver (my wife) adds to the reality of the impact experienced by both of you.

Once the health care provider has discussed the diagnosis and perhaps, provided you and your loved one with a pamphlet or other written introductory information, it is often very helpful to find some additional information. A call or visit to one of many non-profit health organizations is an easy way to get more information.

Many universities, colleges, hospitals, and outpatient treatment centers open their libraries to the public. If you are looking for the latest research about disorders or treatment choices, your best bet may be to visit one of these. In hospital libraries, medical librarians are often available to help you find what you need.

The Internet is the most commonly used way that the public locates health and caregiving information. Many health agencies now provide everything from basic fact sheets about disorders to videotaped presentations that can be viewed on the computer. Often you can select the specific information you want to read and print, and then, send it to your family members. You can access libraries such as the University of Delaware's Morris Library by going to www.lib.udel.edu/ and searching for publications available as full-text articles or research abstracts right from your home or office computer.

A few excellent websites that offer information about a variety of diseases include:

The U.S. Department of Health and Human Services, Centers for Disease Control and Prevention (CDC) ( www.cdc.gov ) has excellent information for caring for someone with common infectious diseases such as HIV/AIDS, sexually transmitted diseases, and tuberculosis.

In addition to websites that provide information on a wide variety of disorders, there are many excellent sites that focus on a group of similar disorders such as heart disease, lung disease, dementia, cancer, and others. Here are a few exceptional sites.

 What will we need to get there? Gathering the key information ...

What do we need to know to help plan for current and future needs?

• Find out about the nature of the disorder affecting your loved one.

  Start by investing some time in learning about what changes are occurring inside the body -

  • What is the name of the disorder?

    [Example: Your father has been diagnosed with emphysema which is also called by the abbreviation, COPD (Chronic Obstructive Pulmonary (lung) Disease). The small airways and air sacs in the lungs break down causing difficulties in getting air out of the lungs and moving oxygen into circulation and carbon dioxide out of circulation.]

  • What caused it? What factors may increase the risk of having it?

    [Emphysema is caused by smoking cigarettes for years. Risk for developing emphysema increases if there is a family history of alpha 1-antitrypsin deficiency or there has been exposure to air pollutants such as chemical fumes or occupational dusts. Often, chronic bronchitis occurs with emphysema due to smoking.]

  • What body organs or systems are altered by the disorder?

    [Lungs - small airways (called bronchioles) and air sacs (called alveoli, where inhaled oxygen travels into the bloodstream and the waste gas, carbon dioxide, is released for exhalation). A breakdown in the walls of these structures causes them to collapse reduced airflow out of the lungs (called "air trapping") and decreased exchange of oxygen and carbon dioxide from the body ("reduced lung function").

  • How does the disorder affect the normal function of the organ or system?

    [Over several years, more airways and air sacs are destroyed increased work in breathing to meet the body's needs for oxygen and release of carbon dioxide. This results in reduced lung function respiratory and heart failure - affecting all cells in the body.]

  • What are the symptoms or signs of the disorder?

    [Symptoms: shortness of breath, anxiety and panic attacks, fatigue, reduced appetite, all of which are increased by physical exertion and emotional stress. Signs: Barrel-shaped chest from trapped air, increased breathing rate (over 16 breaths per minute), increased heart rate (over 100 beats per minute), increased red or bluish skin tones. If heart failure results from emphysema, fluid retention (called edema) occurs in legs and feet when sitting, and abdomen, back, hands and/or face when lying down. Signs increase with greater destruction of lung tissue over time, with aging, and exposure to smoke, pollutants. If chronic bronchitis is also present, inflammation of the airways causes increased mucus production and coughing.]

  • How do these signs and symptoms affect important functions, behaviors, emotions, and relationships? What factors may increase signs or symptoms?

    [In addition to anxiety and panic attacks, emphysema often results in progressive losses in abilities to participate in activities of daily living, talking, eating, socializing, and expressing feelings. Expressing anger, crying, and even laughing may trigger increased shortness of breath, so it is often said that COPD puts people in an "emotional straightjacket." Depression is a common reaction to multiple losses and the sense of isolation. Reduced oxygen to the brain may interfere with thinking causing confusion and inappropriate behavior that may drive away people who want to provide support.]

  • Which symptoms or signs suggest control or progression of the disorder?

    [COPD is a progressive and fatal disease. Medications, oxygen, exercises, relaxation techniques, nutritional and preventive measures, and support are helpful in slowing down its progression. Increasing shortness of breath with less and less exertion signals reduced lung function. In "exacerbations of COPD," shortness of breath suddenly gets much worse. Progression of this destructive disease may be slowed down if exposure (active and passive) to cigarette smoke or other causes is stopped. Use of oxygen helps to reduce shortness of breath and problems due to poor oxygen supply to the cells in the body. Preventive immunizations and early treatment with medications are essential to control permanent damage to the lungs caused by infections.]

  • Which symptoms and signs are critical to report to the health care provider and/or require emergency care?

    Report the following signs and symptoms to your health care provider immediately:

    [Increasing shortness of breath or wheezing - uncontrollable, frequent, longer episodes triggered by less exertion than previously.

    Early signs of respiratory infections such as influenza, a cold or pneumonia - fever, headache, coughing up yellow, green, or rust-colored mucus that may be thick or thin, and has an odor, increased cough, fatigue, rapid pulse and breathing rate, chest discomfort, or flu-like symptoms.

    Coughing up blood or sudden sharp pain on one side of chest, followed by sudden shortness of breath that could be caused by collapse of a section of the lung, a blood clot in the lungs or a heart complication may require emergency care.)

    Rapid weight gain due to fluid accumulation in the feet and legs, hands and arms, abdomen and lungs suggesting reduced heart function (called "cor pulmonale") need to be reported to your doctor immediately. Watch for weight loss and depression that are likely to increase with loss of lung function.]

  Some of the information for this example was found at www.healthwise.org, AARP's site on Chronic Obstructive Pulmonary Disease (COPD).

  Knowing the nature of changes to be expected once a disease or disorder is diagnosed is critical for planning ahead so that you can adapt to future care needs and accommodate the environment for safety and accessibility.

• Know Common Health Changes that Occur with Aging

  If you anticipate caring for your parent(s) as they become older, you should be aware that aging changes:

  • How body systems function,
  • The risk and frequency for certain disorders, and
  • How common disorders present themselves (symptoms and signs) differently in older people.

  Some key background information -

  • Cells in the body normally reproduce themselves 50-70 times over a lifetime. When this limit is reached, new cells are less available.
  • Stress (oxidative stress caused by free radical build-up) damages the proteins in cells causing them to mutate and die early. Free radical build-up results from inhalation of smoke and smog, poor diet and other lifestyle habits. Oxidative stress is recognized as a cause of cancer and heart disease.
  • Tissues and organs age at varying rates between people and within each person.
  • Common changes in the body and their signs and symptoms that may occur with aging plus related risks are included on the chart that follows.

  Aging Changes	Signs and Symptoms in Elderly / Risks
  Thickening of the heart muscle and valves Stiffening of blood vessels Reduced adaptation to changes related to blood flow Altered electrical conduction in heart	Increased blood pressure; heart murmur. Early signs of heart failure: loss of appetite, sleep and weight gain. Dizziness, fainting when sitting or standing up. Increased risk of falls. Palpitations due to extra heart beats and irregular pulse rhythm. Heart attack signs: shortness of breath, anxiety, confusion
  Enlargement of the chest and collapse of small airways	Chest is wider from front to back. Extra work or pursed lips breathing to exhale. Increased risk of pneumonia - loss of appetite, low grade fever, increased respiratory rate
  Weakening of the wall of the digestive tract Ulcers and bleeding Slowed movement of food through intestinal tract Reduced stomach acid production	Acid indigestion, diverticulosis (diffuse pain and low grade fever) Bleeding - signs of dehydration (thirst, dry mouth, skin, low urine output, etc.) and crampy abdominal pain Constipation, tendency for obstruction (cramps, diarrhea, not feeling well) and appendicitis Reduced absorption of nutrients, vitamins and minerals such as iron ⇒ malnutrition, anemia.
  Reduced blood flow through the kidneys	Loss of excessive water - increased and diluted urine output ⇒ risk of dehydration - dizziness, dry mouth and skin Increased risk of urinary tract infection - incontinence, confusion, falls
  Loss of bone mass - osteoporosis	Loss of height (1.5-3.0 in.) and pain in back caused by compression fractures of spine Increased risk of fractures
  Reduced muscle size	Reduced strength and stamina
  Thinning of the skin and loss of underlying tissue	Prone to injury, bruising, wrinkling and dryness
  Decrease in sex hormones	Men - difficulties with urination Women - vaginal dryness
  Decreased sensitivity to insulin	Blood sugar remains elevated longer after eating
  Reduced stages of deep sleep	Excessive daytime sleepiness - increased risk of falls, accidents Alterations in sleep-wake patterns
  Altered sensations of pain	Reduced feeling of pain may prevent recognition/actions related to disorders/danger. Reduced sensations in legs and arms.
  Reduced tactile sense and balance	Difficulty in changing positions. Risk of falls increases
  Changes in the eyes and eyelids, ear and nose	Reduced vision, hearing and smell and related risks.

  Now is the time that you may be noticing signs that indicate an underlying illness is present. What are the most common "indicators" of health problems in an aging parent and possible causes?

  • Sudden Confusion
    • anesthesia, new medications, too high dose of medication
  • Delirium
    • dehydration (due to fluid loss - vomiting, diarrhea, diuretics)
    • reduced oxygen in blood (due to pneumonia, various heart and lung disorders)
    • infections (urinary tract, lung are most common causes)
    • hormonal (example: thyroid disease)
    • nutritional (example: vitamin B12 deficiency)
    • metabolic changes (example: high or low blood glucose)
  • Falls
    • weakness or loss of balance
    • temporary reduced blood flow / oxygen to brain due to heart, lung or vessel alterations or dehydration
    • reduced glucose to the brain if hypoglycemia occurs
    • loss of vision, poor lighting, hearing loss
    • pain, poor posture
  • Dizziness
    • anemia
    • irregular heart rhythm
    • eye or ear problems or excessive wax in ear canals
    • stroke
    • depression
    • drug reaction
    • heart attack
  • Incontinence - new onset
    • urinary tract infection
    • limited mobility affecting getting to the toilet when needed
    • medications such as diuretics (increase amount of urine) and sedatives (reduce sensation of full bladder and may interfere with getting to the toilet)
  • Pain
    • Important to have a thorough assessment by a health care professional to determine cause and treatment of the painful disorder
  • Decreased appetite
    • Worsening heart failure
    • New onset of infection - pneumonia
  • Dehydration
    • Poor fluid intake for various reasons
    • Nausea, vomiting, difficulty swallowing
    • Diarrhea
    • Large amount of urine output
    • Fever, excessive sweating
  Information in the chart and included as "critical indicators" in this section was developed based on Dr. Elaine Amella's October, 2004 article in the American Journal of Nursing (Vol.104, No. 10), Presentation of Illness in Older Adults on pages 40-51.

  Remember that with age, the ways that medications are absorbed, used, and then excreted from the body often change. These considerations are important in making sure that the dose (amount and frequency) is correct, early side effects or dangerous effects are known and assessed, and that professional advice in adding over-the-counter medications (including vitamins, minerals and herbs) is followed. Check with the pharmacist at your local drug store for advice and make sure that the client health profile kept at the pharmacy is updated.

• Be aware of the serious consequences of bed rest and reduced activity

  If your loved one is spending even a short time on bed rest or his or her ability to move around is restricted by injury or paralysis, it is critical to be aware of changes that could result in life-threatening complications. Some of these changes and risks include:

  • Reduced depth of breathing

    Collapse of areas of the lungs Reduced oxygen supplied to the blood Mucus plugs small airways Increased risk of pneumonia

    Prevention:

    Frequent practice of deep breathing using the abdominal muscles and diaphragm (muscle under rib cage). Using slow exhalation through pursed lips helps to get rid of carbon dioxide.

    Coughing exercises help to bring up mucus and the germs trapped in the lungs. If there is excessive mucus in the respiratory system, it is easier to cough it up if it is thinned by drinking an adequate amount of fluids. Be on the lookout for signs of dehydration and prevent this condition. There are ways to help people get thickened mucus out of the chest with medications, and physical therapy.

    Change positions frequently. Increase activity as soon as able.

  • Reduced blood flow in leg veins

    Increased risks of blood clots forming in leg veins, traveling to the lungs Irritation / inflammation of veins Thrombophlebitis (inflammation of vein and development of clot, reducing blood flow through vein back to heart). Redness, swelling, and tenderness in calf often occur. Clot breaks apart from vein and travels into heart and lung vessels (pulmonary embolus). Blood flow is blocked to areas of the lungs and the lung tissue dies (pulmonary infarction.) Sudden, often severe, chest discomfort, shortness of breath and possible collapse occur.

    Prevention:

    Have a routine schedule (such as once an hour or more) to:

    • Move feet and legs in bed.
    • Move foot up and down as if stepping on the brake or gas peddles.
    • Make circles in the air with foot/toes.
    • Slide legs up and down with soles of feet on the bed.
    • Walk / move calf muscles as early as possible to improve blood circulation.
    • Do not cross legs in bed or put pressure in back of the knee or calf.
    • Drink fluids. Take anti-clotting medications as prescribed to prevent clotting.

  • Reduced standing and weight bearing

    Loss of benefit of gravity to aid digestion, urination, lung expansion, bone mass Reduced adaptation of blood flow to head when going from lying to sitting or standing positions, increased sinus congestion, loss of body water, and loss of calcium from bones. Urinary tract and lung infections (pneumonia) Swallowing and digestion difficulties (GERD), constipation Osteoporosis, poor posture, fractures, pain Increased risk of kidney stones Dizziness, fainting upon standing Loss of muscle strength, increased fatigue, risk for falls.

    Prevention:

    Support in sitting, standing and walking as early as possible. Physical therapy, supportive aides (such as lumbar back support pillow) or assistive devices (walker, cane) to enable sitting, standing, and walking and diet/medications may counteract losses and changes.

  • Pressure on skin and underlying tissues where squeezed between bones and mattress or chair.

    Restricted circulation leads to poor nutrition and oxygen supply to skin, tissues, muscles. These cells are injured and may die Inflamed areas, pressure sores or (decubitus) ulcerations Increased risk of infection and problems with healing

    Prevention:

    Change sitting or lying position frequently with help as needed. Gentle massage that increases blood circulation and sheepskin or foam padding may reduce pressure on the skin.
    Watch for small areas of redness (indicating underlying inflammation and injury) in areas where bony prominences such as the hips, buttocks, lower back, elbows, heels and even the back of the head press against the bed or chair. Hidden destruction of tissue under the skin often occurs before it is noticed. Get medical care to prevent extensive tissue destruction.

  • Limited stimulation of the senses
    Progressive diseases that limit activities

    Sensory deprivation and altered perception decrease participation in former activities, limit socialization, and increase sense of isolation. Risk of disorientation Depression with symptoms of fatigue, other symptoms, and have a decrease in enjoyable activities.

    Prevention:
    Maintain activities, as able and with support. Encourage visits with friends, phone calls, and writing letters. Discuss the news and help maintain your loved one's orientation to time and place. Be aware that depression is most common when physical illness and /or aging occurs in people with additional problems related to alcohol, drugs, dementia, and in widows and widowers, caregivers, and people with limited social support. Depression often occurs in people diagnosed with heart disease, cancer, stroke, dementia, chronic lung disease and Parkinson disease. People falling into high risk categories, particularly those on bed rest or having limited mobility, should be assessed regularly using depression measures.

  Illness Impact Questionnaire

  If you know the answers to these questions about your loved one's condition, you are well on the way to providing good care.

  • What is the name of the disorder?
  • What caused it? What factors may increase the risk of having it?
  • What body organs or systems are altered by the disorder?
  • How does the disorder affect the normal function of the organ or system?
  • What are the symptoms or signs of the disorder?
  • How do these symptoms and signs affect important functions, behaviors, emotions, and relationships? What factors may increase symptoms or signs?
  • Which symptoms or signs suggest control or progression of the disorder?
  • Which symptoms and signs are critical to report to the health care provider and/or require emergency care?
  • Are any of the signs and symptoms experienced related to aging?
  • Do reduced physical activity or bed rests pose risks? If yes, what are the risks and the preventive measures that need to be taken?

  Knowing about common signs, symptoms, and possible complications is important for preventive care. Through your knowledgeable assessment of changes in your loved one's appearance, feelings, complaints, and behavior you may recognize a life-threatening change requiring immediate medical attention.

 How will we do it? The Power of Pulling Together

What can we do to strengthen our caregiver-care receiver relationship and our "caring partnerships" with close friends, family members, and community agencies?

• Planning for the Family Impact of Caregiving

  Certain disorders, particularly those affecting the brain, nervous system or those that cause progressive damage to the heart, lungs, liver or kidneys, will almost inevitably require increasing levels of care and support over time. Depending on the stage, location, treatments, and other factors, a diagnosis of cancer may require planning for care as well as coping with difficult feelings. Take the first steps to understand your feelings and those of your loved ones. Refer to the "Dealing with NOW: Understand and Share Your Feelings Early" section of the Caring for Your Partner or Caring for Your Parent pages. Join a community support group for caregivers or for families caring for a loved one with a specific disorder such as Alzheimer's disease, cancer, or heart or lung disease. Many family members join on-line support groups and enjoy the convenience and anonymity.

  Planning for the responsibilities of providing physical care, emotional support and companionship in advance can be challenging. If you are the primary caregiver because you live with or close to your ill family member or have more of the "resources" - time, money, support - or you are the only one left to do work, you will need the help of others. To reduce the stressful impact of the illness and caregiving, now is the time to build and strengthen your team. If you haven't had a family meeting, check out the section "Dealing with NOW: Have a Family Meeting" Caring for Your Partner or Caring for Your Parent pages.

  Family members, friends and/or community groups may be of help in future caregiving and may wish to be involved with planning. For example, one or two people with interests in obtaining disease-related information about the impact and risks may help by finding the key information and explaining it to those most involved with care. It is helpful for one or two caregivers who are comfortable with the medical aspects and have close contact with the ill person, accompany him or her to medical appointments, and have permission to exchange confidential medical information with the health care provider. Use the Illness Impact Questionnaire (on the previous page) to record information specific to your loved one, his situation, and illness or make your own reference list. Frequent assessments of your partner's or parents' condition(s) are essential to identify changes, disease progression, new signs and symptoms, treatment responses, and drug reactions, and to get the help needed as early as possible. You may find tools and checklists to use in routine assessments of your loved one. The health care professional overseeing care may offer you a checklist to help you identify and record changes that are important to track.

• Consider the Nature of Your Relationship with the Care Receiver and your Family

  The impact of a life-challenging illness varies according to many factors in your relationship with your ill family member. The unique qualities of marital relationships (chosen, created partnership that includes physical and emotional intimacy) vary from the unique qualities of child-parent and sibling relationships (lifetime and genetic ties that involve choices to remain "close"). Parents guide their children to independence, and adult children support aging or ill parents to increasing dependence. The nature of the caregiver and care receiver relationship is a key factor in the impact of the illness.

  The nature of the illness is another key factor in the impact of the illness on the family. For example, a diagnosis of cancer invokes anxiety and fear of loss and death in most people, regardless of improved cure rates and better control of symptoms. If the family learns of the diagnosis of cancer before their loved one does, there may be a discussion to protect the family member from the "bad news." Disagreement may follow. With each family member's thinking affected by feelings and emotions, this time may be an opportunity to try to be as objective as possible and practice the steps of decision-making or problem solving. The following steps in the "Model for Making Decisions" are described further in The Caregiver Helpbook: Powerful Tools for Caregiving.

  Dr. Vicki L. Schmall, Marilyn Cleland, and Marilynn Sturdevant have written The Caregiver Helpbook: Powerful Tools for Caregiving ♥ (2000) that can be ordered from the publisher, Legacy Caregiver Services ( www.legacyhealth.org ). It is a superb book to help caregivers care for themselves by handling difficult problems, emotions and decisions. It presents a model of decision-making steps that can be used in many situations such as the one described above.
• Start with identifying the problem.
  [Family disagreement about telling Mom that she has breast cancer that has spread to her brain. "Very emotional" choice]
• Gather information to help insure an informed decision.
  [What will Mom need to do to participate in her care? What signs and symptoms are expected ? Does she already have a living will, durable power of attorney, and other legal documents in place? How has Mom reacted in the past to health crises in the family?]
• Brainstorm options/choices.
  [To tell her or not to tell her about the cancer diagnosis]
• Evaluate advantages and disadvantages of options.
  [

  Tell Mom that she has cancer:

  Advantages:

  Active participation in care. Can make plans involving future. Open communication of feelings, concerns, and wishes related to health, future...

  Disadvantages:

  May increase anxiety and depression initially. Family discomfort in dealing with Mom's reaction to news

  Not tell Mom that she has cancer:

  Advantages:

  Emotionally easier for everyone. Protection and greater control over decisions by family...

  Disadvantages:

  How can treatments and symptoms be explained? Risk of finding out is great and may lead to anger, feelings of dishonesty, and low self-esteem. Deny Mom's expression of feelings and participation in important decisions...

  ]
• Make a plan or decision.
  [Let's say you decide to tell your Mom about the cancer diagnosis based on the family discussion. Now is the time to plan how you will do it. Who will share the information with her? What will be said? How will she be supported? ]
  The American Cancer Society website ( www.cancer.org ) provides great suggestions in Coping with Physical & Emotional Changes: For Spouses, Family & Friends. Read the section on the topics of family adjustments, coping, and talking with someone with cancer.
• Carry out the plan or decision.
• Check to see how your plan or decision is working.
  [Discuss how your decision and plan worked. If there were negative consequences, find information and help to deal with them. For example, you might
  • provide more time to allow your Mom to talk about her fears and concerns,
  • reassure her that "We will be there for you,"
  • inform and involve her in important decisions, and
  • support hope without false reassurances.
• Anticipating Needs and Planning for Changes Together

  Many disorders progress in stages characterized by losses of normal functioning cells in the affected systems or organs in the body. These changes often result in new signs and/ or worsening symptoms. By anticipating stages and changes, signs and symptoms can be more easily identified and changes in treatment and care can be made. Let's consider the millions of people who have memory loss and later, dementia caused by Alzheimer's disease, and the many family caregivers caring for them.

  Alzheimer's disease (AD) progresses slowly as brain cells are destroyed by oxygen free radical damage and the formation of deposits in the brain. The loss of these cells leads to impairment in memory, judgment, concentration, and the ability to make decisions. Many people with AD become disoriented to their physical surroundings and develop difficulty in their use of language. Behavior and mood change. As the disease advances, losses increase, affecting the abilities to work, relate to others, and perform self-care. In the early stage of Alzheimer's disease, the following activities become increasingly difficult and lead to signs and symptoms noticed by the person with them, close family members, friends and co-workers:

  Memory for recent events such as remembering appointments, names,

  Carrying out multiple steps of an activity such as cooking or balancing a checkbook,

  Making decisions quickly such as putting out a kitchen fire with the proper equipment / substance,

  Maintaining spatial ability such as reading a map and feeling lost in a familiar environment,

  Using language such as finding and using the right word and understanding what others are saying, and

  Behavior related to social withdrawal and mood associated with anxiety and depression.

  At this stage, the family member with AD needs to make transitions with the support of his or her family. These transitions include changes in:

  - driving (based on an evaluation of driving abilities and a medical consultation),
  - taking medications, cooking and other home responsibilities, and
  - managing financial and legal responsibilities.

  These transitions are very difficult for the family member with AD to make because they require giving up independence; having family support to ease the losses.

  Currently, you may be anticipating the family work involved with the early stage of your loved one's illness. It is important to identify the cause of a health change early not only because you will have more time to prepare for caring, but the chances are that there will be more treatment options available to prevent or control the cause of the disease. Now even in Alzheimer's disease, new drugs will soon be available in the U.S. that prevent some of the brain cell damage by binding excess iron. (Check out The Caregiver's Home Companion [Nov. 16, 2004], "Drugs Unveiled to Battle Alzheimer's, Parkinson's, ALS."). The earlier the treatment is started, the greater number of brain cells - and function- are preserved.

  Working together after early diagnosis, families can more fully involve the ill member during a time when he or she can best participate. He or she will want to learn about the changes in health, medical care, safety needs (such as the importance of smoking cessation, reorganizing the home, etc.), and community resources. Financial and legal planning and decision-making are important to complete when your loved one is mentally competent.

  Early planning for gradually increasing family care responsibilities is important. Because the timing of progression of the disorder varies from person to person, the plan must be very flexible, realistic, and dependable. In early stage Alzheimer's disease, a number of important activities are helpful. For example, this is the time to write down, audiotape or videotape family stories and memories.

  Consider ordering A Guide to Recalling and Telling Your Life Story, an autobiographical workbook published by the Hospice Foundation of America, by calling 800-854-3402.

  Comprehensive resources for those affected by Alzheimer's include:
  The Alzheimer's Association ( www.alz.org or call 800-272-3900),
  The Family Caregiver Alliance ( www.caregiver.org or call 800-445-8106),
  The Alzheimer's Resource Room of the Administration on Aging ( www.aoa.gov/alz ) and
  The Hospice Foundation of America ( www.hospicefoundation.org ).

  The early phase of illness requires a variety of changes and coping strategies that are helpful in dealing with changes, reducing symptoms, and delaying the progression of AD. It is important to watch for the signs and symptoms of the middle and then, the late stages of Alzheimer's in order to increase support, adjust care provided, and protect the safety of your loved ones. Check out the Family Caregiver Alliance "Fact Sheet: Alzheimer's disease, Early Stage" ( www.caregiver.org/caregiver ) for excellent information about transitions, treatment, coping, and community resources. This reference was used to develop the content in this module concerning signs and symptoms of the early stage of AD.

 What can I do to preserve my Health while caring for Others?

This section provides information that may benefit your health by reducing caregiver strain, burden, morbidity and mortality.

• Some Key Strategies

  Realize that at first there seems to be an overwhelming amount to learn and accomplish, but in most cases, there will be enough time and help from others along the way.

  Recognize the impact of having an ill loved one. How is his or her health change affecting your feelings and emotions?

  Learn how the illness is affecting not only his or her physical health, but also his or her mental and emotional health. How are these changes affecting his behavior toward you and other family members?

  Be angry at the disease not at each other.

  Be "there" for each other.

  Work to remain hopeful without falsely reassuring each other and closing opportunities to discuss fears, concerns, and "what ifs."

  Find reasons to be positive and optimistic - update knowledge of illness and related research.

  Work to maintain your friendships that are caring and supportive.

  Arrange the professional help you and your family member may need early to help with your feelings and stress.

  Strengthen the relationships you have with others at work, school or church that have been supportive in the past.

  Recognize the impact of changes and transitions on your physical, emotional and social health including the closeness and intimacy you share with your loved one.

  Many illnesses create gradual progressive physical, psychological and social losses. When activities that you and your partner, or parent are no longer possible, try to replace them with other activities that you can do together. For example, if your loved one can no longer play tennis with you, replace it with a walk together or learn a new sedentary activity such as playing bridge.

  Recognize and appreciate what each of you does for the other.

  As a caregiver, take time away from the 24/7 care responsibilities. The care receiver and other family members, hopefully, will support you in getting away.

  Be realistic in planning for your needs and other responsibilities. Do not take on more work than you can handle. Frequently reassess your "care load" and ask for the help you need - without feeling guilty.