Partners changing roles
Since MS may affect the way a person functions physically, often making once easy activities more difficult, it can become necessary for the members of a family to change roles within their family system. It may also be necessary for the couple to exchange roles. For example, the traditional family supporter may find him or herself responsible for tasks around the house that were previously taken care of by others.
If the partner has to take on responsibilities for personal care, especially without any support from others, the partner can be at risk of burnout. When a partner assumes these types of duties, the couple may be at risk of compromising their relationship as a couple as well. This can happen when the person with MS requires extensive personal care, such as bathing, feeding and help in the bathroom, performed by the spouse. It is often difficult for the couple to maintain an intimate relationship in this case. Utilising outside assistance for very personal care duties may be helpful. When this is not possible, the couple should be encouraged to receive counselling in order to learn ways of maintaining their intimacy.
Changing roles within a partnership can create feelings of resentment and anger, especially if one or both members of the couple feel forced into making changes. Couples should be encouraged to discuss how certain changes would improve or disrupt their lifestyle and relationship. When communication problems exist within the partnership that hinder an open discussion of role changes, it is helpful to involve a professional counsellor or psychologist.
Children changing roles
When a parent is unable to continue performing tasks within the home, often the children are expected, or needed, to take responsibility for certain tasks. Helping with some household jobs and with giving assistance to the parent with MS is acceptable. Children of a disabled parent often grow up to be particularly sensitive and caring adults.
However, it is important for the well-being of the child that certain personal assistance tasks, such as helping in the bathroom, should be handled by an adult family member or personal assistant, and that children are not expected to sacrifice their childhoods for the needs of the parent. Therefore, in order to avoid putting too much of a burden on a young child, other resources should be taken advantage of as much as possible.
Adult children with MS changing roles with their parents
In some situations a person with MS may find it necessary to rely on parents or even to return to the childhood home. For an individual who is accustomed to being independent and self-reliant, the need to ask one’s parents for help, financial or otherwise, can impact on self-esteem and can create feelings of guilt. This may be even more evident for a person with MS who has elderly parents with their own health problems.
While some parents may feel the need to protect their “child” who needs them, over-protectiveness can cause resentment and anxiety. It is important to keep in mind that for a parent to have a child with a disease like MS, coming to terms with the implications can be quite difficult. These parents themselves may experience overwhelming concern, anxiety for the future and even guilt.
The type of role changes that occur between an adult with MS and his or her parents require open communication, flexibility and honesty on the part of every person in the family. Each person in the family must express personal needs while respecting those of other family members, with the acknowledgment that the original child-parent relationship may need renegotiating.
The impact of cognitive impairment and “invisible” symptoms on the family
It is estimated that as many as half of people with MS experience mild cognitive problems. Because cognitive difficulties in MS are “invisible” symptoms, family members may misinterpret behaviours or reactions on the part of the person with MS. Difficulties with memory, problem solving and concentration may be interpreted as the family member not caring or not listening, being uninterested or unwilling to co-operate. Information provided by healthcare professionals must include a discussion of cognitive problems, including what types of problems are directly related to MS and which strategies can be used by the individual to overcome any difficulties in daily life that may be the result of these problems. Correct information can be the key to helping families understand and cope with cognitive problems.
Fatigue is another misunderstood, often misinterpreted, invisible symptom of MS. Often a family member with MS appears to lack motivation or to be lazy when, in fact, the person is experiencing MS fatigue, a type of tiredness or exhaustion that is an actual symptom of the disease (see MS in Focus, Issue 1 on managing fatigue). When the family has a clear understanding of fatigue and its impact on the person’s ability to function, they may be more keen to help out with household tasks, reconsider family activities that may be strenuous for the member with MS, and, in general, reorganise the house and habits of the family in a way that helps the person with MS conserve energy. It is important for the family to understand the importance of energy conservation strategies that can help the person with MS have more energy to spend with the family.
How families cope
Each member of a family has his or her own coping style. On finding out that a family member has MS, some individuals look for as much information about the disease as they can find and perhaps prefer to talk to others about their experience with MS. Others in the same family may deal with news of the diagnosis by keeping busy with other activities in order to avoid thinking about MS. Each person brings into the “MS experience” his or her own way of coping. Different coping styles within the same family can be complementary or contradictory. Contradictory coping styles may lead to conflict within the family.
Family members should be encouraged to cope with MS in their own individual styles, while respecting the coping styles of other members. However, communication is key, and if a family traditionally has dealt with problems by ignoring their existence, assigning blame or using some other, ineffective coping style, the family’s way of confronting MS will be the same, at least without the help of a family counsellor or psychologist.
Separation or divorce
The few studies that have looked at divorce have produced contradictory results. We do know that MS can add stress to a relationship. The unpredictability and progressive nature of the disease, the changes and sacrifices that might be required, symptoms and so on, are all obstacles that make it difficult for both the person with MS and the partner to cope. It may be useful for a couple to seek help from a counsellor even if they are not in a crisis, so as to keep communication open and to discuss difficult issues as they arise. This could help them to avoid reaching a crisis from which it could be difficult to recover the relationship.
MS affects every member of the family. Learning about the disease and its possible effect on the family can help in being prepared to face challenges as they arise. Families that are informed about the different resources available can choose those that best suit their needs and lifestyle.
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