CAREGIVER BURN-OUT HAS many different causes, including physical strain and emotional stress. The physical strain results from the variety of hands-on activities that are required of the caregiver and the fact that these activities are superimposed on other commitments and responsibilities. Emotional stress comes from the well-partner's reactions to providing care and to unwanted changes in his or her own lifestyle, as well as from the reactions of the MS-partner to receiving care. These stresses and strains can, in turn, cause physical and emotional health problems for the partner caregiver.
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| Multiple Sclerosis Caregiver Stress |
The physical strains experienced by the well-partner are most directly linked to the physical and cognitive problems of the MS partner. The greater the disability, the more hands-on care is required.This can involve such activities as lifting the MS-partner several times a day, cleaning up after bladder or bowel accidents, and getting wheelchairs in and out of cars.
In contrast, the emotional stress of caregivers seems to have little to do with the physical condition of the MS-partner or the length of time the partner has been disabled. Emotional stress seems more related to how "trapped" well-partners feel in their situation. This, in turn, seems to be closely related to the level of satisfaction they have in their marriages. Additional factors may include the degree to which well-partners and MS-partners agree about MS and related care needs, how well the MS-partner is coping emotionally with the illness, the extent of cognitive impairment, and the amount of time available to the well-partner to pursue personal interests and activities.
Most often, the greatest distress for the well-partner is caused by the emotional stress that comes with the decision-making and emotional support aspects of caregiving, rather than the physical strain of hands-on care. This is important because most of the problems that cause stress become more manageable when they are better understood.
Before looking at specific areas of stress in greater detail, it may be helpful to address the common concern about divorce in MS (and other chronic illnesses). Many people assume that the pressures and challenges of living with MS inevitably lead to a higher than normal divorce rate. Although there are no exact data on the number of MS marriages that end in divorce, the best available evidence indicates that the rate is actually lower than the 50% divorce rate of the general population in the United States.
Apparently, some couples that might otherwise have separated remain together after MS has been diagnosed. Well-partners may stay in a marriage because of a sense of commitment and obligation; MS-partners may remain in an unhappy marriage because of concerns about financial security or insurance benefits.
The important thing to remember is that every long-term intimate relationship has its strengths and weaknesses. In most instances, those strengths and weaknesses existed well before the stresses of MS were added to the picture. The intrusion of tends to highlight both the positive and the negative aspects of any relationship. Their relative balance ultimately helps to determine the success with which a couple confronts this new and extraordinary challenge. It is rare for MS to cause a solid and satisfying marriage to fail; it is even less likely to turn a foundering relationship into a successful one.
Some well-partners who feel obliged to honor the marriage commitment may gradually distance themselves from the relationship emotionally, physically, and even financially. In many ways, this pseudo-divorce may be more painful and detrimental to the MS-partner than a legal divorce. For instance, as long as the couple remains together, it may be more difficult or awkward for family and friends to offer or provide help to the MS-partner.
In some states, the MS-partner might remain ineligible for certain kinds of community support that would be available to a single person. In the event of a legal divorce, the partners can acknowledge their separation, grieve over the loss of their past relationship, and begin the process of rebuilding their lives. Family members and friends can more easily meet the emotional, financial, and physical needs of the MS-partner. Eligibility for community programs and other benefits can be explored.
Couples who are unable or unwilling to repair a foundering relationship should make every effort to be honest about what is happening and responsible about ensuring that the needs of the MS-partner will be met. As with other difficult life circumstances, the first step in dealing with the problem is admitting its existence; the next step is to find ways to manage it as comfortably as possible for all concerned. To find out more, you can check out Multiple Sclerosis Caregiver Stress.