THE CHALLENGE TO THE FAMILY BY Gail Price For thousands of patients and fami- lies multiple sclerosis has become an integral part of daily life, and their efforts to cope must be contin- uous. Since MS usually strikes be- tweeii the ages of 20 to 40, the patient often carries heavy respon- sibilities within the family unit. He or she is often the father or mother of young or teen-age children, the breadwinner. Or the patient may be a college student, or a bride or groom, or an almost independent young adult. The diagnosis of multiple scle- rosis is usually made in a aetieral hospital setting and comminicated by a physician to the family. Usu- ally, the responsibility for teaching rests with the nurse, whether in an acute care or long-term facility, doctor's office, or community health agency. The attitude of the teacher is always a key element. How the ini- tial information is conveyed is a strong determinant of family reac- tion in the present and adjustments in the futures Health professionals have in the past viewed multiple sclerosis as universally devastating and hopeless. Most of the patients they had seen were the most severe- ly disabled, those that needed hos- pital or nursing home care, but who constitute only about one-third of all MS patients. Many nurses never have professional contact with the ---------------------------------------------------------- GAIL PRICE. RN,BS is the nurse Coordinator for the National multiple Sclerosis Society, Edison, N.J. She initiated inservice instruc- tion for Professionals working in long-term care facilities in New Jersey, and is presently expanding the training program to include the mid-Atlantic region. She coauthored the MS society's inservice training manual. ---------------------------------------------------------- other two-thirds who are only slightly to moderately affected. This larger group is often fully functional and requires little or no intensive treatment. Family teach- ing should therefore include such positive facts, and these can honest- ly be presented in a positive and hopeful manner. The family's reaction to a diag- nosis of multiple sclerosis can be as variable as the disease itself. Obvi- ously, before anv family teaching is possible, there has to be at least some acceptance of the diagnosis on the part of both patient and fam- ily. If the patient denies the diagno- sis and refuses to allow the family to be told, little can be done until this is changed. In family teaching, certain principles should govern the nurse's efforts. One must acknowlege that each familv is separate and distinct; no two are exactly the same. In some, the emergence of MS may tear apart the very fibers of family relationships. In others, it may bring a closeness and purpose that was previously missing. Each family needs to be viewed as one that happens to have a member with multiple sclerosis, never as an MS fainily. Marital, child-rearing, or financial problems may well have existed before multi- ple sclerosis entered the picture. If MS is allowed to overshadow all else, it may destroy an already bur- dened family. The disease must be kept in perspective for the sake of all involved. The period imniediately fol- lowing the family's awareness of a final diagnosis is generally an in- tense emotional experience. At- tempts to teach at this point are useless and often counterproduc- tive. The words multiple scero- sis" in connection with a member of the family often blur all informa- tion that follows. It is wise to allow some time to pass so that the family will not be overwhelmed. The amount of time needed will vary, and the nurse should be sensitive to the reactions of the person being spoken to for indications of readi- ness to accept and absorb informa- tion. The family members being taught will generally be the spouse or parents, depending on the indi- vidtial situation. The level of com- prehension of the significant person determines the depth of informa- tion to be given. All facts should be explained in language understanda- ble to the family. Even after the initial shock has subsided, teaching should be brief and simple. In any teaching session, time for questions should be al- lowed, because this is one of the best barometers of the person's con- cerns and acceptance. Of course, any family teaching program will be contingent upon the condition of the patient. If a patient requires total care at home, the family might need many hours of instruction. Others, however, mav need a minimal amount of this training. Whatever the physical re- quirements of the patient, the infor- mation falls into three basic catego- ries: 1. Facts about the disease it- self 2. Health education and nurs- ing procedures 3. Role of the family. Upon hearing the diagnosis, most families will immediately ask, "What is it?" Many people have heard of multiple sclerosis, some have not, but most are unfamiliar with its actions and effects. Many mispronounce the words and con- fuse MS with such other diseases as muscular dystrophy or amyotrop- hic lateral sclerosis. The next questions will proba- bly be. "How did he/she get it? Is it contagious? Hereditary? Fatal?" Answers should be carefully ex- plained and information given on the possibility of remissions and the possible precipitating factors of ex- acerbations. The fact that MS af- fects each person very differently should be stressed. The educational plan for the family should include the availabil- ity of treatments for some of the symptoms if and when they occur, the chance of fatigue requiring modification of certain physical ac- tivities in some patients, the mas- sive research effort being made to find answers to the disease, the location of the nearest chapter of the National Multiple Sclerosis So- ciety, and step-by-step methods of managing the disease, such as main- tenance of good health habits, proper nutrition, early treatment of infection, therapies, mid so forth. Most important, the essential theme throughout must be the ab- solute necessity for maintaining the patient at his or her optimum func- tional level. Overprotection is sec- .ond only to callous neglect as the most destructive method of manag- ing MS. All health education must in- clude full explanations of what is meant by "proper nutrition" and "good health habits." Professionals often assume that the basics of these are fully understood by the general public. As the nurse stresses the importance of these, the family nods, implying understanding, but they often walk away, unfamiliar with what constitutes a balanced diet or a fitness program. If there is any doubt about their understand- ing, time should be taken for de- tailed discussion. The family should understand the need for MS patients to main- tain maximitm phvsical condition, but they should also realize that patients must make manv decisions for themselves and be Responsible for implementing their own care, if possible. With too much emphasis on, "Let me do that for vou," or "You must get eight hours of sleep a night," a childlike dependence can be created. Multiple sclerosis patients need not be invalids. When instruction is given in procedures for care, the profession- al in charge should plan to begin with the most basic matters. People never I)efore confronted with the need may be unable to figure out how to give a bed bath, be unaware of preventive measures for bed sores, or even be unable to read a thermometer. More complicated devices, if needed, will require spe- cial attention. Wheelchairs, walk- ers, catheters, and other aids are often foreign, embarrassing, and frightening. Much distress and fear can be avoided if these are fully understood bv family members. A catheter may be horrifying to those who only see it as a tube emanating from the body, but by understanding the anatomy and physiology of the urinary svstem and the rationale for care of and precautions to be taken with a cath- eter, families can accept such de- vices. The supportive role of the family may be the most crucial to be stressed and the one that usuallv receives the least attention. In an@ long-term situation, such as that presented by multiple sclerosis, the physical and emotional toll on the family far exceeds that of an acute illness. Most will need guidance and education in planning and schedul- i,ng their own lives if the family unit is to remain intact. They may need guidance from the professional staff in working out routines, and the earlier this is done, the more secure, competent, and comfortable the familv will feel about having the patient remain at home. Shortly after a diagnosis is made or disablity becomes evident, families often devote an exorbitant amount of time to the care of the patient. Reactions such as these, while normal in this phase, can only lead to frustrations, guilt, and anger as time passes and the family begins to feel stifled, shut off from the rest of the world, or imprisioned by their fate. This resentment can be avoided by thorough and thought- ful discussions with the family be- forehand. Any scheduling must in- clude flexibility, because too rigid routines that do not allow for spon- taneity are apt to be short-lived in duration. The financial impact of chron- ic disease can be devastating. Medi- cal visits, nursing care, assistive de- vices, and much more can quickly drain even the most solvent faniily's bank account. Health professionals educating families must always consider the family's financial abili- ties and be prepared to make familv members aware of available com- munity resources. Above all, be realistic. To rec- ommend and insist on expensive and elaborate devices to a family of modest means is not only impracti- cal, but insensitive as well. Creativ- ity on the part of the staff working with a family can sometimes lead to substitute solutions that are feasible and within reach. Educating children of multiple sclerosis patients is a difficult prob- lem, and much of what can be accomplished will depend on how it is presented to the parent. Parents have definite ideas and feelings about what their children should be told. ---------------------------------------------------------------- Sir Augustus d'Este, a grandson of George III of England, kept a diary until his death in 1848 describing the symp- toms of what was later recognized as MS that plagued him for 26 years. In it he first noted blurred vision, which he thought was due to tears he had shed at a funeral. Double vision was the next symptom. Later he recorded that he needed to keep his balance with a stick. and eventually his legs became weak. Around that time he wrote "making my water is attended with difficulty," and during an affair he experienced "deficiency of wholesome vigor" in his "act of connection." In 1868 Charcot identified MS as "sclerose en plaques" after observing patients at Salpetriere Hospital with varying degrees of tremor and spastic paralysis. He also described the remitting, exacerbating course of the disease. From his observations he developed what became known as Charcot's triad of clinical signs that, when pres- ent simultaneously, were considered diagnostic of MS: intention tremor; slowing and scanning of speech charac- terized by a pause after each syllable; and ocular abnor- malities, particularly nystagmus. Over the years the broad range and fluctuation of clinical signs and symp- toms became more clearly apparent. ----------------------------------------------------------------- Despite the presence of MS, the parent-child relationship can and must be maintained. Teaching children requires the consent of the parent, which can only be gained if the parent or parents involved do not see these efforts as an intrusion on their rights. To secure parental willingness, the professional should stress the advantages of education and, even more, the disadvantages of the child being uninformed. Parents some- times believe that no undue con- cern is called for when a child has not verbalized apprehension or un- dergone behavioral changes as a result of a particular situation. On the contrary, the opposite is usually true. Children may not be able to communicate their fears and inse- curities. They may hesitate to act in a disruptive fashion for fear of reprisal, but they intuitively sense more than they demonstrate. Lacking tangible answers to tension in their family's life only adds to their anxieties. Imagination and fantasv take over where expla- nation and reasoning are lacking. If there are two or more chil- dren spanning several years in age, it may be wise to speak to them individually, since their levels of comprehension are different. Children can be more adaptive if they develop trust in the adults close to them, and the way to gain that trust is with the truth. In my experience, I have found that hon- esty is the most significant and indeed the only way to approach the subject with children. A child's concept of the future is very different from an adult's. What children need is to under- stand the situation as it exists in an accurate and genuine manner. Too many family units and. multiple sclerosis patients have been destroyed because no one took the time and effort to explain the disease or provide the knowledge necessary for adaptation. Education of the family must be given the pri- ority status it deserves so that fu- ture devastation need not take place. Bibliography Bardossi, Fulvio. Multiple Sclerosis: Grounds for Hope. New York, Public Affairs Committee, 1978. Christopherson V.A, and others. Rehabilitation Nursing: Perspectives and Applications. New York, McCraw-Hill Book Co., 1974. Davis, F.A. and othem Emotional Aspects of M.S. New York, National Multiple Sclerosis Society, 1977. Price, Gail, and Wood, J. J. MS training in your facility. J.Am. Health Care Assoc. 5:51-74, Mar. 1979. Wasserman, Lynn and others Living with M.S. A Practical Guide. Boston, Mass. Chapter of the National Multiple Sclerosis Society, 1979.