This manual has been developed by professional nurses, a physician, a counselor, and family caregivers who have a range or experiences with patients with neurological handicapping conditions, including Progressive Supranuclear Palsy. The development of the manuscript was made possible through resources from the Hosch Endowment of the Foundation of Wesley Homes, Inc., Atlanta, Georgia.
Special appreciation is extended to the American Parkinson Disease Association for permission to incorporate information from materials developed to assist patients with exercises, ambulation, speech, and swallowing problems. Also, appreciation is expressed to the patients and their family members and caregivers who demonstrated courage and resourcefulness in facing the challenges presented by the illness, Progressive Supranuclear Palsy.
Progressive Supranuclear Palsy (PSP), a rare neurological condition, presents numerous problems for patients and families who need concise information. To meet that need, this manual includes a review of effects of the disease and suggestions for care based on personal experiences.
For further information you are encouraged to seek answers to specific problems from your physician, a clinical nurse specialist, a counselor, spiritual advisor, physiotherapist, or other care providers, including the dentist, nutritionist, podiatrist, recreation therapist, who offer guidance as well as necessary services. Your personal experiences as the disease progresses may also increase your effectiveness in meeting the day to day challenges of PSP.
Knowing how an individual moves about in the environment and what directs this movement is important in understanding human behavior. The nervous system comprises the brain and the spinal cord, connected by a series of nerves; the brain controls and coordinates the activity of all the body's cells. In general, the brain controls the rapid activities of the body, such as the contracting of muscles, sensing and interpreting of events around us, and regulating the glands.
The nervous system is unique in the vast complexity of activities it can perform. The brain receives literally thousands of messages, interprets them, and responds by sending its own, which allow the body to act appropriately. To react and perform, the body must be stimulated by a sensory receptor in eyes, ears, nose, tongue or skin. The message is relayed from the sensory receptor to the brain by way of a neuron, which is a nerve cell.
The brain interprets the message and channels it to the appropriate motor region to cause the desired response. For example, you may decide that you want a pencil. Your eyes receive the message that the pencil is on the table across the room. The brain interprets that message and sends it to the area that controls muscle movement, including grasping and walking. The message is then sent via a system of nerves to and through the spinal cord to the leg muscles. Eventually, and quite quickly, all nerves and muscles useful in your reaching the pencil activate appropriately.
Specific areas of the brain control different functions, such as movements of various muscles. Thus, when a disease strikes a certain area, the symptoms are specific, and can be characteristic. The areas of the brain affected by Progressive Supranuclear Palsy control muscle tone and muscle movement. Thought processes and memory, however, usually are not affected by this disease until late in the illness, if at all.
PSP, first described in 1963 by Doctors Richardson, Steele, Olszewski as a syndrome, usually begins in individuals between the ages of 50 to 60 and runs its course in less than five years. The progression of symptoms occurs over months or years until the patient loses extensive motor ability and control, and becomes bedridden without impairment of mental processes (until late stages as aforementioned). Hearing is unaffected; muscle weakness, however, often affects vision.
A slow virus is one suspected cause of this disease, but attempts to transfer the virus to animals have been unsuccessful. No cure is known, so treatment is directed largely to symptoms. PSP is often mistaken for Parkinson's Disease because of many similar symptoms; however, relatively little benefit results from medications prescribed for Parkinson's.
The diagnosis of PSP should be considered whenever an older person complains of falling repeatedly without cause, and has a rigid neck and paralysis of vertical eye movement. The following case history will demonstrate many of the life changes a person with the disease experiences.
Mr. M., married for 35 years with two adult children, spent an active career in the engineering department of an oil corporation, including two decades of supervisory and management roles after years as a field supervisor and crew leader in southern Louisiana. In each role, Mr. M. enjoyed the exercise of his nimble mind and body as he achieved personal goals, and took part in achieving those of his family and company.
Within the past two years, Mr. M., now 62, began to falter in his body movements, to complain to his wife of difficulty reading and writing, and to attempt to compensate for early changes in physical well-being through fitness exercises. However, his reading ability and ease of balance and walking decreased until he was unable to hide his difficulties from family and close associates. He compensated partially by arriving early for meetings and office responsibilities in order to seat himself unobtrusively. He lunched privately at his desk while reading propped-up papers, keeping his head held back. He frequently manually held his eyelids open.
Mr. M.'s associates tended to interpret the accompanying emotional changes (the gradual withdrawal, bursts of rage at the incompetence of himself and associates, and denial that he was coping with the onset of aging) as "retirement syndrome." While Mr. M. spent time and energy attempting to conceal awkwardness and to avoid situations which exposed his problems, he was unable to conceal from himself and immediate family that trouble existed, not only with vision, balance and gait, but with a failing urinary system. Fortunately, an astute urinary specialist also recognized other neuromuscular symptoms. On Mr. M.'s admission to the local medical center for surgery to correct the urinary disorder, the admitting nurse found three pairs of eyeglasses and a collapsible walking cane, kept discreetly from almost everyone.
In brief, the history of Mr. M. did not indicate other incidents of neuromuscular illness in himself or his family, a precipitating illness, or unusual stress. Recovery from surgery was uneventful, but the combined efforts of experts over a six-month period were required to confirm that he had Progressive Supranuclear Palsy rather than Parkinson's Disease. Meanwhile, as an outpatient, Mr. M. received an extensive neuromuscular examination and treatment for the symptoms of neuromuscular change.
Within six months, Mr. M. retired because of his inability to cope with the progressive change gradually affecting several body systems. He had trouble eating, swallowing, defecating, and turning his body in bed unassisted. Also, he experienced two minor fractures and numerous cuts from falls.
On his admission to a nursing home, a physician recorded: "After sixteen months of home care, a rigorous year-long maintenance program enabled Mr. M. to delay incapacitation and to respond with his unimpaired mental alertness as other physical weaknesses developed. The need to move Mr. M. to the nursing home resulted from an illness Mrs. M., his wife and care provider, experienced which reduced her ability to provide major nursing care. However, financial support for this skilled institutional care will come, in part, from long-standing health insurance."
Perhaps you are able to identify with the characteristics of Mr. M.'s problems.
Probably you, as reader, were among the first to observe changes in yourself, your family member or friend. The change occurred gradually, but the progression made you recognize that "life was different," eventually dramatically so. An experienced caregiver will help you understand that your recognition of change led to a diagnosis.
Individuals close to each other often explain emotional change as moodiness related to personal or work problems, or to aging. Changes in physical behavior may, however, send vibrant messages that something is different, without adequate explanation. Physical behavioral change usually gives clues that unalterable changes are occurring within the neuromuscular system. In the beginning, signs may be so subtle as to escape detection by even the most experienced physicians. As the disease progresses, usually over several years, more definite signs appear. With increasing physical limitations, emotional responses are expected - including frustration, exasperation, withdrawal, anger, depression, denial and hopelessness. Even other forms of unhelpful coping may appear.
The first set of physical symptoms observed is often motor weakness. The eyes cannot be kept open without difficulty. Often the upper eyelids are retracted, giving the patient an expression of surprise. This situation is serious because most activities depend upon vision. Moreover, neuromuscular weakness extends to other groups of muscles, such as those required for balance, sitting upright, standing, walking, speaking, and the essential functions of swallowing, breathing and eliminating.
These changes eventually produce a rigidity of the body with head tilted backward and stiffness of neck, decreased expressiveness of the face, the onset of tremors and slowness of speech. Gradually the systems slow that allow an individual to move about with relative ease and grace; to breathe, eat and swallow unassisted; to speak distinctly; and to eliminate body wastes. Emotional instability is usually present, most frequently in the form of crying. This feature is not a sign of being overly emotional, but is caused by loss of ability to inhibit crying or laughing. It is sometimes referred to rather graphically as "emotional incontinence."
Since mobility is as important as vision, the loss of balance, coupled with an exasperating tendency to fall backward, can cause injuries. The arms and legs tend to stiffen, movements become progressively slower, and walking is awkward with a tendency to lean backward. As a result, patients with PSP may fall frequently. These conditions give proof that generalized weakness is developing as a consequence of midbrain changes.
During the early stages of neuromuscular change, the awkwardness and embarrassment are "covered" through limitations of public exposure and carefully made adjustments by the patient and family. As the illness progresses, the patient becomes unable to talk or swallow, is immobile and is totally dependent on the caregiver. Loss of intellectual function, to some degree, is present but is mild in most patients. Physicians may test different body and mental systems often without agreeing on the reason for the change.
Frustration mounts because early symptoms are so similar to other illnesses. Parkinsonism, for example. Throughout the search for a diagnosis, the patient may be informed that he or she has a central nervous system disease which affects motor ability. Consequently, specialists may examine many symptoms, identify and treat them, and make appropriate plans for care. Diagnosis is confirmed by these studies plus information from brain scans.
The identification of symptoms will help in diagnosing, increasing understanding of the changes occurring, and improving the ability of everyone affected in the situation to cope effectively. Symptoms are usually classified as early and late, though overlapping may occur. From the following list, you may identify changes you have recognized from your experiences with this illness or from learning of the experiences of other patients:
Late symptoms include increases in early manifestations, rigidity of neck and trunk muscles, difficulty coughing up and swallowing secretions and impaired gag reflex. Remember, however, that most patients tend to remain alert and oriented with unimpaired memory.
Unfortunately, body systems necessary to maintain life (ingestion, digestion, and elimination of metabolic and other waste products; respiration; and adequate body movement and nourishment to support circulation, bone strength and skin integrity) also show symptoms as the illness progresses.
Medical orders for care are designed to ease problems resulting from various physical changes.
L-dopa is considered to be slightly beneficial (see Appendix). Antibiotics are ordered for specific infections (such as urinary and respiratory infections as well as for management of injuries), physiotherapy for neuromuscular problems, counseling for personal psychosocial concerns, and dietary changes for proper nourishment. Special skin care orders are often given when preventive methods fail.
Interspersed throughout the medical management is the care of general infections and injuries attributed to falls, such as fractures and lacerations. The physician oversees the medical management, and the periodic medical evaluation and coordination with the patient, family, and other caregivers. Medical and occasionally other types of referrals are made by or coordinated by the physician.
In a progressive illness, comprehensive nursing emphasizes maintenance of function and support during periods of physiological and psychological change, as well as the implementation of medical orders. During diagnosis, when patient change is evident but its meaning unclear, feelings of apprehension in the patient can be overwhelming. Realistically, the symptoms and diagnostic scanning often permit plans for care to be developed early, thereby limiting some of the early apprehension related to the unknown when the diagnosis is uncertain. Nursing assistance by a committed person with the ability to follow through on a daily basis and to report change to the physician, nurse specialist, or other professionals is essential, therefore, for continuity of care. Nursing management also includes collaboration with a range of caregivers and the patient, fostering a team concept in handling progressive disability.
The first response to patients during diagnosis cannot be prescribed. However, some guides appear helpful and include:
With the patient's inability to direct his or her motor activities because of tremor, slowness of motion, rigidity, and unseen internal muscle weakness, self care has to be reassessed almost daily. Nursing management, therefore, begins daily by noting the strengths and weaknesses found on systematic assessment (see Appendix) and related to:
Providing for the maintenance of body weight with the inclusion of a balance of carbohydrates (sugars and starches), proteins, fats, minerals, vitamins and fluids. Food tastes can usually be accommodated through mashing, pureeing, or liquifying food preferences as well as essential foods. Lower levels of fat are recommended because the age and sex of the patient (often males in mid-to-older life) increase the heart disease risk. If not contraindicated, a diet recommended by the American Heart Association is suggested. Protein is important because or muscle degeneration and the need to resist further muscle loss. Liquids are essential for the tissues - including hydration of cells, elimination of wastes and skin integrity. Unless the physician orders otherwise, a minimum of two quarts of liquid per day is recommended for adult intake. (Refer to Maintenance and Rehabilitation Section for special assistance.)
Maintaining adequate diet and hydration, the application of special agents (anti-allergenic creams or lotions), gentle passive massage and exercise and changes in pressure sites through turning in bed, and the use of resilient cushioning with pillows, foam rubber, or cotton, of chairs and bed. When the patient is confined to bed, protect the skin during care, such as changing bed linens. For example, avoid tugging on sheets in ways that abrade the skin (sheet burn). Wrinkled sheets also abrade the skin, as does damp bedding which can cause growth of bacteria, skin infections, and discomfort.
Daily patient inspection will include notation of unusual skin changes (rashes, spots, breaks, discoloration, marked reduction in turgor or resilience - as noted by gently "picking up and releasing" a section of the arm skin to detect quickness of response to the release). With loss of muscle mass, the skin becomes loose and increasingly fragile, requiring care throughout a 24-hour day.
Aids include hypo-allergenic lotion, changes in position, and use of adequate supportive and cushioning materials to increase circulation through equalization of pressure. The application of talc products should be limited because they can be inhaled readily, thereby increasing breathing problems and respiratory infection. Special care extends to all skin surfaces, with utmost attention to skin over bony prominences or cartilage, such as back of head, cheeks, elbows, heels, ankles, hips - even ears and nose.
Body openings require cleansing care with a soft washcloth and warm water. With the appearance of dryness, an application of mild ointment or suitable lotion with a cotton swab or tip will increase comfort and decrease skin breakdown around the opening (aperture). Avoid, however, the application of oil-products into openings unless ordered by the physician and given definite instructions.
Baths should be with warm water, in tub or shower where appropriate and safe, using a mild soap, followed by thorough rinsing and the application of hypo-allergenic lotion applied with a gentle circular motion.
Maintaining normal patterns of bowel and bladder function, as feasible, through diet, fluid intake, exercise and other measures. Bowel integrity is highly dependent on the physiology of the colon. The food mass, enzymes, and liquids pass through the ileocecal valve, the cecum, ascending colon, then through other parts of the colon. This passage, by mass and motion (peristalsis), produces a filling of the rectum, and, with pressure on the walls, stimulates receptors to open the sphincter muscles and expel fecal matter through the anus.
Additionally, contraction of the diaphragm and abdominal muscles to increase pressure aids in the passage of feces (stool). Since the ileocecal valve usually opens about 20 - 25 minutes after a meal, particularly the first meal of the day, placing the patient in a sitting position on a bedpan or on a commode and applying gentle pressure to the anus will often initiate a bowel movement.
As muscle weaknesses persist, the use of laxatives and enemas or suppositories may be required. Also, lack of exercise and reduced roughage in the diet increase constipation. Should a fecal impaction develop, a gloved finger may be used to dislodge a lower bowel mass. However, help the patient to avoid such a likelihood through the use of gentle, warm saline low enemas, the intake of a mild laxative given in the evening and inclusion of food liquids in the diet to promote peristalsis. Undiluted prune juice is an example of such a food. Also, caution must be exercised in the use of low enemas, suppositories, or laxatives daily because each is habit forming. (If suppositories are used, effective insertion should be against the rectal wall to increase absorption in tissues and not in fecal matter.)
Urine is formed in the kidneys and the flow of urine to the bladder and outside the body depends upon muscle motion (peristalsis) within the wall of tubes, bladder and sphincters to perform involuntary and voluntary action. When the amount of urine stretches the bladder wall, impulses cause the relaxation of muscles including the sphincter, enabling urination to occur. When the muscles and sphincter lack muscle tone, urine remains in the bladder and various complications can occur, such as infections and incontinence.
Urination, however, can be facilitated through drinking adequate fluids, developing a schedule (every three hours or more often as indicated by an observed pattern) for elimination, using a warm water flow downward over the pubic area of the body, placing the patient's hands in a basin of warm water, providing a nearby sound of a stream of water from a faucet or a pitcher, and/or assisting him or her to assume an upright position while relaxing in privacy.
Incontinence, or the inability to control the passage of urine because of muscle weakness, is a difficult problem for caregivers and the patient. The skin must be kept dry through use of disposable diapers or incontinence pads, and changing linens as indicated by dampness. A catheter, when necessary, transports urine from the bladder via a sanitary tube to a receptical adjacent to the body of the patient or to the bedside. Special instructions for catheter care need to be acquired by the caregiver prior to the assumption of such responsibility in order to decrease the incidence of bladder infection.
Because problems of elimination (bowel and bladder) can be symptoms of pathology other than neuromuscular deficiency, the physician should be notified of deviations. For example, an infection or obstruction in the bowel, bladder, or kidneys may exist. Also, with PSP, neuromuscular changes in life-long elimination patterns are expected, and the patient has little control over them.
Frustration at loss of control needs to be accepted for what it is - a concern and inconvenience for everyone, but often manageable.
Maintaining an environment in which bacterial growth is minimal is basic to all care. Since the patient is increasingly dependent on caregivers for personal hygiene, nourishment and fluids, and general cleanliness and sanitation, a few guidelines increase protection. Included are:
Maintaining a safe but familiar setting will enhance the quality of life for the patient and peace of mind for caregivers. Avoid making the bedroom a central living space; every room normally used by the patient should remain part of his or her domain wherein practical, but with proper caution. For example, throw rugs, small footstools, loose objects and similar impediments should be removed to prevent loss of balance and/or falls.
Once furniture is well placed and the patient learns the pattern of placement, strive to maintain it. Apply large doorhandles, or hand grips on padded doorway facings to assist with entry into rooms; provide night lights; reserve a comfortable chair with cushion for each room used by the patient; and maintain a non-skid floor. Good lighting is an essential pan of safety. Walking aids, such as a walker, cane, lift chair, wheelchair, or other appliances, help patients maintain independence and mobility.
Since stability is important for safety, encourage the use of stair rails and offer personal assistance when moving about by the patient is difficult. If the patient ordinarily uses glasses, keep them within reach or attached to the clothing for easy access. If pets or small children are present, make certain that they enter the room after the patient is seated.
Most falls in the home occur in the bedroom, bathroom, kitchen or on the stairs, so these settings merit special attention. Precautions, in general, include the management of aids such as the hospital bed with overhead trapeze bar and siderails, bedside commode where necessary, uncluttered bedside table, chair with arms and cushion, walker, cane, telephone with enlarged dial and comfort items, such as 'IV, radio, and adequate lighting (in addition to nightlights), with absence of obstructions.
When the bed is the primary care site, it should be placed in front of or facing the doorway where the patient can identify those who enter the room. In fact, each person should speak on entering, then move close to the bed (or chair) to facilitate recognition.
Heavy carpeting in the bathroom, bedroom and on stairs will reduce the shock of an unexpected fall, but frequency of carpet cleaning needs to be considered. Although privacy in the bathroom should be respected, safety is of primary concern, including use of aids such as handgrips, rubber mats in tub/shower, and elimination of glass containers, and glass tub/shower doors. Substitute rubberlike materials for breakable glassware.
In summary, because of the nature of PSP, preventing falls is essential to a patient's care. First aid materials, however, for immediate use, should be kept in the home as well as in the car when transporting the patient. All accidents should be recorded and reported to the physician at once.
Refer to Maintenance and Rehabilitation section.
Maintaining a positive emotional outlook and a zest for life are essential because of the stressors faced by patients. Moreover, caregivers and patients need to recognize that it is normal to feel frustrated, angry, rejected, fearful, and depressed while coping with PSP. Occasionally, the guides given with the management of the diagnosis section will help in showing the patient that the caregiver is listening, empathizing, helping, and caring. Depression, however, is more resistant to treatment than some of the other feelings.
Often, the patient masks depression by the inability to focus, to remain still for long, and by showing anxiety or irritability. If the patient persists in self-accusing behavior, expresses hopelessness, fails to recognize positive aspects of his or her life, appears slow to respond mentally, shows physical symptoms not associated with the basic illness (such as insomnia, loss of appetite, sudden fatigue, abdominal distress), depression is suspected. The depressed pattern, however, may develop because of grief over losses, including the loss of health and economic resources and the rapid changes in the patient's life. These changes are particularly disturbing when patients are mentally alert and realize the physical deterioration.
Early recognition of depression and related emotional states is important. The caregiver's assessment of such states is usually the first clue to abnormal behavior and must be relayed to the physician. The ensuing diagnosis of depression or another emotional state distinguishes between a functional and an organic disease.
Treatment can range from psychotherapy to the use of drugs to counteract the depressed state. In general, psychosocial counseling will be of benefit, thus referral for this care is as urgent as referral for physical symptoms.
General care is most often provided on a daily basis by the patient. As tremors persist, the caregiver may assist and gradually provide complete daily care. Although awkward at tint, the provision of care enables the caregiver to examine the teeth and gums as well as the tongue for color, fissures, nodules, and ulcers.
Since the maintenance of the teeth enhances general health, nutrition, appearance, and comfort, care should include brushing, flossing, rinsing, and gum massage after each meal, if time permits, or at least daily. Although annual dental visits are recommended for almost everyone, semi-annual examinations may be required for PSP patients since maintenance of bacteria and acids in the mouth for longer than average periods of time threatens the hygiene of gums and teeth. The dental team should know the patient's condition in advance in order to provide individualized care. Prior to entering the examination room, the patient should have an opportunity to use the restroom facilities and to rinse his or her mouth to remove excess saliva. Furthermore, continuity of care is important, regardless of the dental state. For example, a patient without natural teeth may benefit from oral examinations and any prosthetics prescribed. Nursing homes provide dental screening and some offer care by a visiting dentist and hygienist.
You are already aware from your previous reading and caregiving that PSP has a profound effect on the patient's lifestyle. Medical treatment may alleviate or reduce some of the symptoms that interfere with the patient's activities. In addition to medical treatment, the patient and family members can take further measures to improve the patient's quality of life and increase the satisfaction of everyone concerned. These measures include individualized exercises to improve muscle tone and use of aids and equipment to alter the home environment. Do not attempt to implement a complete program of exercises in one day; two or three times a week for each set often will suffice. A flexible plan decreases patient fatigue and is usually more realistic for caregivers.
The following section of the manual is devoted to specific measures that can be taken by the caregiver and the patient to improve the quality of life. It is subdivided into the following parts: improvement of speech and swallowing, home exercise to improve muscle tone, suggestions for maintaining balance, and aids and equipment to improve the activities of daily living. (List special areas regarding your patient for reference in the space below.)
Most of the difficulty faced by the patient with PSP involves the various muscles of the body. Two problems are difficulty in speaking loudly enough to be heard and trouble with swallowing. These problems will vary with individual patients or may pose no inconvenience. However, if the patient is having difficulties with either, you may want to read further.
The ability to speak and enunciate clearly is a motor activity involving a coordination of muscle groups and the brain. Speech changes are related to weakness and reduced coordination of muscles that control breathing, voice loudness, and pronunciation. A family member or friend will frequently ask the patient to repeat sentences or phrases or to speak louder. Sometimes medications will improve the patient's speaking ability, but meditation alone will not solve this problem. Both the speaker and the person being spoken to can improve communication.
You may already recognize that speaking and being understood require much effort on your part. You should concentrate and give your full attention to forming your ideas and speaking them clearly. Here are some tips that may help:
Communication involves a speaker and a listener. Both can contribute to improving communication. The following suggestions may enable you to understand the speaker more easily:
For the patient:
For the speaker:
Additional exercises are available to let the patient make the most effective use of the muscles that control speech. A booklet, Speech Problems and Swallowing Problems, is available from the American Parkinson Disease Association (See Appendix).
If speaking and being understood become a large problem, a certified speech-language pathologist can evaluate the specific problem and recommend appropriate treatment. A list of approved certified speech pathologists is available from the American Speech-Language-Hearing Association. (See Appendix for address of American Rehabilitation Foundation)
In patients with PSP, weakness of the throat muscles frequently causes difficulty in swallowing. This slows swallowing and the act of eating becomes more deliberate. Food may then collect in the mouth and the back of the throat. You may first notice that the patient takes a long time to eat. This weakness of the throat muscles may progress to difficulty swallowing food that has to be chewed and handling the saliva that is normally swallowed automatically. Excess saliva may overflow between the lips and drooling results. A buildup of saliva in the mouth can disturb the patient and muffle speech. The patient needs to make a deliberate effort to eat slowly and swallow to prevent coughing and choking.
If difficulties continue, puree the food to make chewing and swallowing easier. Remember, almost any food can be pureed, even raw foods; the taste is satisfying even when texture cannot be varied. If feeding through a tube is necessary, for taste excitement, place a few drops of liquid on the patient's tongue. The good or familiar taste can be helpful to the patient in the promotion of other positive responses.
A hand towel with the neck cut out and a ribbon or tie at the top will usually catch any food that falls from the hand or eating utensil and will keep the patient's clothes clean. The towel is larger than a napkin and usually more adequate.
If aspiration (food swallowed into the airway) of food becomes a problem, suction equipment should be available and a caregiver taught to use it. A large syringe with a soft rubber catheter attachment serves as a suction or a suction with a motor can be rented, borrowed or purchased.
A caregiver should learn the Heimlich Maneuver in the event that food becomes lodged in the patient's airway. The Heimlich Maneuver is taught in most communities along with a course in Cardiopulmonary Resuscitation (CPR).
All of us perform daily acts such as eating, dressing and bathing, to which we give little thought. These can become very difficult to perform. As with any chronic illness, maintaining independence is of utmost importance. Frustration and embarrassment because of the increased time and effort taken to perform daily activities can result. You may find watching your patient embarrasses and frustrates both of you, therefore, you may be tempted to perform too many activities for him or her. Allowing one to maintain independence and self-worth is imperative. A personal call system, however, is necessary so the patient can request immediate aid. A bell attached to a piece of furniture nearby will serve. Listed are particular personal helps to maintain independence:
In many homes the kitchen is much more than a place to eat; it is the center of family activities. To allow the person with PSP to be involved in family activities such as meal preparation, the kitchen should be kept as well organized and free of obstacles as possible.
For safety, nonskid floor surfaces are essential.
Probably the most dangerous room in any home is the bathroom. Uncovered floors in the bathroom and tub become slippery when wet. Most bathrooms are small and contain many porcelain fixtures against which one can fall. With the water running and the door closed, a call for help may not be heard. Useful are:
Grab bars, placed on the bath tub wall and shower and next to the toilet, can increase patient safety and prevent fails. Grab bars and hand grips on sides of bathroom doorways are useful, too, as supports.
A raised toilet seat makes sitting and standing easier; glue small blocks to the underside of the seat to raise it an inch or more. (List your needs regarding aids and equipment below.)
The preceding section will help keep the patient as fit and independent as possible. As noted in the beginning of this section, exercise, even in its mild forms, has been shown to be beneficial to many major body systems, especially the muscles. The exercises described can supplement other forms of physical therapy, but if the patient is having specific problems, a physical therapist can try additional exercises after consulting the physician. For example, the physical therapist may prescribe weights to strengthen particular muscle groups.
Continuation of community activities, gardening, walking, swimming, and hiking will often promote physical and mental well-being. Keeping active may also reduce the momentum of the progression of the illness. The patient's decision to help will allow some control over the illness and will be well worth the effort!
Social support service is available to the homecare patient and caregiver as well as to a patient in a nursing home. Social workers explore special needs (financial, home health assistance, and others) in order to make referrals for proper services and to offer recommendations. If the patient is eligible for Medicaid or Medicare, the social worker is invaluable in helping complete forms, providing information, and conferring on behalf of the patient and family. The social worker's knowledge of community resources and the helpfulness with entry into the system relieve family caregivers of time-consuming searches and delays regarding where to go, when, and why.
In addition, social workers have counseling skills and can provide group support, personal guidance, or make referrals to specialists. For out-of-the-home types of care (dental, religious programs, group meetings, or other), transportation can often be arranged. Also, information about costs of equipment, rental services or special services can be obtained from an experienced worker. If nursing home care is necessary, information about the types of services, costs, standards, and expectations is usually provided by social workers. After relocation, social service agents provide continuity of resources for patient, family, and caregivers.
Most caregivers recognize the spiritual life of the patient, acknowledging that this aspect of life is beyond specific religious affiliation. In times of stress, a patient often needs to affirm or to reaffirm his or her beliefs about a central spiritual identity, and to ask for a spiritual advisor. Occasionally, a patient or caregiver will find solace in adversity because of strong spiritual convictions about a Supreme Being, and the meaning of life and afterlife. Regardless of spiritual expressions by the patient, an assessment by the caregiver may reveal the patient's wishes regarding beliefs, practices, and the need for the presence of a spiritual advisor.
Although the spiritual lives of patients and their religious orientations vary throughout the Western world because of the diversity of cultures and, in general, freedom to worship, each individual has the right to have his or her spiritualityrand religion respected. The caregiver, therefore, needs to learn how the patient desires to express this aspect of life, with whom, and under what conditions. The practices that do not interfere with critical health should be maintaincd. Assistance, therefore, with these practices should be considered as part of the overall management and response to human need.
In summary, the caregiver or spiritual advisor should explore spiritual dimensions of life in a way suited to the patient, and then respond with sensitivity and helpfulness.
Areas of life vital to mental and emotional health but often relegated to "time left over" are imperatives in planning for 24-hour care. The plan for diversion and recreation begins with an assessment of the patient's ability to perform and levels of motivation, and the resources required. For example, since reading is often difficult, other means to provide intellectual pleasure are possible, such as talking-books, available in community libraries or special book services.
Suggestions may include:
In essence, diversion and recreation are therapeutic pleasures which maintain satisfactions in daily living. Interaction with friends, family members and former colleagues may decrease isolation and maintain identity.
Federal regulations change periodically, therefore, it is important that help in the interpretation of the guidelines be obtained.
In general, costs for care of long-term illnesses are not covered by Medicare or by most private insurance plans except when the private plan was initiated prior to the onset of long-term illness. If Medicaid is to be sought, assets must be transferred two years prior to Medicaid application. Medicaid is available for patients who meet the requirements. Income tax deduction for care is an option for families providing medically related care if it exceeds 7.5 percent of the payer's adjusted gross income. Other benefits fall under gift tax annual exclusion for a child caring for a parent.
In any event, in the use of home health care or of nursing home services, the physician and family must establish need for medical or nursing services. The fact that no one is available to provide the care otherwise, does not establish need. The costs for total home care versus skilled nursing home care in most settings are approximately equal, unless a family is able to handle all direct care and supervision for each 24-hour day.
Money management for patients with financial resources includes options which should be explored. The usual ones for transfer of funds are:
Because costs of care will vary from community to community, wise financial planning includes a conference with the Medicaid and Medicare Advisor or a social services agent of a health care institution to obtain comparative home care and agency care costs. Although costs may appear prohibitive as illness progresses, an advisor may assist in ensuring adequate care, introduce respite care (to reduce "bumout") and foster peace of mind.
The patient and caregivers share a challenging situation, with all expected to focus on the quality of life. Often, patients given options for time of care, choice of menu, type of recreation, style of clothing, and use of particular referral services, will perceive that he or she has the respect of those persons providing care. On the other hand, the patient must consider responsibilities of caregivers so that scheduling and choices remain realistic and manageable.
All parties will have times when stressors peak. Periodic discussions with counselors or trusted friends or relatives may offer healthy ways to ventilate feelings. From such experiences, problems are often identified and solutions reached. Included in a plan for stress management are:
The written statements of what you plan to do, how (or by what means), the outcome of your actions, and suggestions for revisions as indicated may be part of the Planning the Day sheets (Appendix). Although you may need to test the goal-setting method of stress reduction, it has the potential to provide direction for action in ways that promote stability while affording flexibility (since you modify the unworkable aspects of your plan or refer particular problem areas to sources of specialized aid).
A formula for the development of goals and their implementation into a form of Planning the Day includes an assessment of the nursing situation (patient, environment, resources); review of what actions must be performed and how; performance of the actions; evaluation of the outcomes of the actions in comparison to the expected outcomes; decisions made about elements of the foregoing to be reported to other caregivers (physicians. other specialists); and decisions made about the next steps, followup, for example.
This manual is presented for the use of patients with PSP and their personal caregivers. Family members and other close associates, also, may gain insight into the challenges of daily living from this information. Although every patient will not have identical experiences, the systems of the body affected and the characteristics of the mobility problems tend to be similar over the course of the illness. Therefore, knowledge of the expected changes, albeit uncomfortable, coupled with careproviding resources, may improve the quality of life of the patient.
Moreover, patients and caregivers will increase their satisfactions with learning to cope through optimizing the pleasurable experiences and focusing on aspects of life that are meaningful to the patient. This focus includes the expression of humor regarding everyday occurrences. In addition, forms of humor as diversion allow many moments of relief from the tedium of schedules and the "oughts" that must be attended in. a maintenance program. Laughter tends to ease tension and to serve as subtle, effective exercise. In fact, one sage advocates spending a minimum of 15 minutes a day in laughter as therapy for everyone since laughter incites the brain to release endorphins which promote feelings of well-being. Funny stories; an unexpected outcome to an event; reading or viewing tapes, t.v., or movies of the comic exploits of humankind are suggested as choices.
Caregivers, while protecting a patient from a too strenuous schedule, need not overlook the importance of fostering helping relationships between a patient and friends/family members who are not responsible for daily care. Patients often find delight in granting permission for lengthened visitations from favorite friends or relatives - and mutually satisfying bonds develop. Think of the companionship during a meal, ride, walk, or while participating in games, reading quietly, or observing interesting environmental phenomena as such bonding opportunities. Helping relationships extend the dimensions of physical and emotional support, and vary from shared pleasures to coping with grief and guilt. In some relationships, the patient expects to share joyous recollections or the spontaneity of the moment. In others, compassion and insight into the deeper feeling levels surface readily between the partners. In a few relationships, a rare rapport may be encompassing, ranging from pleasurable delights to therapeutic forms of communication.
Whatever occurs, however, should be dirccted by the patient and tile sensitivity or caregivers when possible. Moreover, regardless of the intentions and strengths of everyone in the setting, a willingness to accept the services of professional experts when indicated by the course of events will lighten the complexity of many situations.
In conclusion, the administration of TLC (tender loving care) combines physical, emotional, and spiritual aspects that enable the patient to participate in the activities of daily living. For help, consult the Resource List; use the suggestions in thc sections presented; refer to home nursing texts for nursing fundamental skills; and dialogue with caregivers, your own and other PSP patients, and the experts from the professional groups. Additional information may be obtained from the Wesley Woods Geriatric Hospital of Wesley Woods Center, Atlanta, Georgia, and from the neurological institute in your setting.
Although the physical, emotional, spiritual, and immediate environmental aspects of life are complex and interrelated, systematic assessments of certain responses and conditions provide information about the patient that may enable the caregiver to influence the quality of life of a patient in positive ways, including care planning, implementing, and evaluating care. Clues to the level of the functional and coping abilities of the patient are obtained in several types of assessment, e.g., from the history of the patient obtained from the patient, the family, and from other caregivers the physician or other members of the health care team), and from two categories of information identified as subjective and objective. Subjective information is obtained by the caregiver from statements made by the patient about feelings and perceptions regarding his or her condition. To obtain such information, or data, the caregiver needs to be skillful in listening, able to establish a relationship (rapport) that promotes a trust and the willingness of the patient to share important aspects of daily life, and develop the ability to detect reportable clues for early or urgent referral to other caregivers as appropriate. Objective information is obtained from observations made by the caregiver in a systematic manner in order to cover all aspects of the condition of the patient that are readily assessable by the caregiver. Be aware, however, that almost all categories of information, even vital sign measurements, may be somewhat biased because each piece of information is processed through the background of cultural and growth experiences of the assessor.
Whereas the caregiver in a home setting or similar site is not expected to perform a complete examination comparable to the assessment made by experienced health care experts, with repetition, keen listening and observing skills, and a few special skills in the use of several basic instruments (thermometer, flashlight, watch with second hand, and blood pressure measurement kit), essential information may be obtained for care planning. The frequency and extensiveness of the assessment, of course, depends on the condition of the patient and the orders of the physician or other members of the care team. Judgment, therefore, regarding all information gathering tasks is required.
The order of the assessment, whether subjective or objective first, depends on personal or practical preference. However, prior to beginning most of the activities of the day, many caregivers start an assessment with the collection of objective information which provides basic knowledge about essential functioning of the body, e.g., vital sign information. After the collection of vital sign information, the caregiver may encourage (or even query) the patient to relate his or her feelings, complaints, and sense of change in his or her condition. Later, this collection may be compared to other information gathered from the caregiver observations, patient history, and material obtained from family members and other members of the care team. Notes may be made on small cards or on a tablet by the caregiver, then transferred to the record or diary sheets later in the day for future action, as appropriate. Actions will include prompt referrals for urgent situations and the development of goals and objectives for care planning (Planning the Day).
The general outline for the assessment consists of the following format:
Whereas the extensive collection of information seems to focus on the physical changes that appear to be weaknesses, the value of the assessment rests in the findings of weaknesses that may be strengthened or eliminated, or in strengths that may be increased in order to compensate for some of the weaknesses that persist, even with the best of care and work on the part of the patient.
Albeit difficult for some caregivers to assess, this area of life is important to assess because spiritual needs may be unmet through excessive protection. In this area, also, the patient is free to show his or her preferences and to have them respected. Two categories of response include:
Aspects of assessment vary because the environment changes along with the needs of the occupants, therefore, the assessment pertains to the elements within the patient's immediate surroundings.
In conclusion, personal assessment, like other aspects of care, is important to the patient for many reasons. Assessment identifies strengths and weaknesses which may be relieved or reduced in the management of care for the patient. The next step after adequate reporting of pertinent information to the physician or nurse specialist is to develop plans for the day based on realistic goals and objectives.
The following list includes names of agencies, organizations, products or other resources that may be helpful in your care or caregiving. Each user must make personal explorations, however, because endorsements are not intended.
