WHETHER THE DISABLED adult is living on his or her own or has returned to the parents' home, certain issues begin to emerge. Parents who are concerned about their child's welfare want what is best for that child. Unfortunately, parents and children do not always agree, no matter how old the child is. Parents may be convinced, for example, that their child should consult a particular physician, take a certain kind of medication, receive a certain type of physical therapy, or get counseling.
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| Taking Care Of Someone With MS |
They may become increasingly anxious, frustrated, and angry when their child does not listen to their advice, even though that child is an adult who is perfectly capable of consulting with doctors, reading the available literature, and making educated choices. These parents feel that they are being asked to stand by and watch their child's condition worsen when, if the child would "just listen," he or she would be better off. This is most often wishful thinking on the part of the parents, but it demonstrates the power of parents' needs to protect and defend their children.
The disabled adult who returns to the parental home may feel as closely supervised as when he or she was a child. Parents' fears often cover a broad spectrum, from physical safety to nutritional health, and from financial responsibility to moral issues. Even an adult child who has been managing these areas of his or her life for a number of years will often find that parents have (strong) opinions, and may express them, about even the most personal issues. This results in part from the parents' natural anxiety about their child, and in part because parents feel - and reasonably so - that anyone living in their home needs to follow the rhythms and "rules" of the household.
These feelings can become intermingled in a complex way when significant impairment - either physical or cognitive - is an issue. Parents may worry anew about such things as the child's ability to drive safely, deal with excessive fatigue, handle the effects of alcohol, make responsible decisions, or manage personal finances.
Similar to the teenage years, many parents cannot rest peacefully at night until they know that their child is safe at home. The adult child who is accustomed to being able to determine his or her own schedule may suddenly be expected to be home (alone) by a certain hour.
Parent-child boundaries can become particularly blurred in the face of MS-related cognitive impairment. Because the person with MS may, over the course of the disease, experience changes in various cognitive abilities, including memory, attention and concentration, problem-solving, judgment, and spatial orientation, parents may become concerned and wonder to what degree they should become involved in, or try to oversee, their child's daily life.
Although legal guardianship of the adult child becomes necessary in only the most severe instances of cognitive impairment, some degree of parental guidance may be advisable even with less severe deficits. A thorough evaluation of the cognitive impairment by a neuropsychologist can provide the person with MS and his or her parents with the information they need to determine how involved the parents might need to be. Family counseling can also be helpful to families who are trying to negotiate the delicate balance involved in this situation.
Sometimes, as a result of the anxiety and guilt they feel about their child's MS, parents may have difficulty setting limits on their efforts to care for, help, and protect. Putting all of their own needs, interests, and activities on hold, the parents pursue care-giving activities at the expense of their own health and general well being. Parents need to maintain a balance between the needs of their child with MS and their own needs as individuals and as a couple. This, again, is an area in which family counseling can help to ensure that everyone's needs receive some attention. To find out more, you can check out Taking Care Of Someone With MS.