EARLIER WE DESCRIBED caregiving as falling into three general kinds of help (instrumental or hands-on, decision making, and emotional support) and suggested that thinking about care in this way could be useful for finding solutions to difficulties. The initial step in creating a solution is to understand the problem and break it down into manageable parts. Then, even if the whole problem cannot be completely resolved, at least some parts can be more comfortably managed. As described, hands-on or instrumental help tends to cause physical strain on the caregiver, whereas the necessary decision making and emotional support tend to be more emotionally stressful.
 |
| Multiple Sclerosis Caregiver Burden |
Managing instrumental care
A FIRST STEP in figuring out ways to reduce the physical strain of hands-on care is to find out if there is a healthier or easier way to do the job. With a doctor's prescription, most insurance companies will pay for an occupational or physical therapist to make a home visit. This specialist can advise on ways to manage transfers that will protect both the well-partner and the MS-partner; suggest equipment that will make the kitchen, bathroom, and bedroom safer and more accessible; and devise strategies for managing other logistical problems in the household. Couples should not hesitate to discuss home management difficulties with their physician. Symptoms that interfere with daily activities (e.g., spasticity and fatigue), can often be managed with medications or other treatment strategies.
For a variety of reasons, many couples are reluctant to ask family and friends for help. They often feel that help should be offered without their having to ask for it. Sometimes family and friends are interested and willing to help, but do not know how to do so. Or they may be concerned about making commitments that they cannot keep. Couples should take the initiative in asking for help. The worst they can get is a no.
The best strategy is usually to ask family and friends for help with those needs that come at predictable but infrequent times, such as a trip to the doctor or shopping. The request should be a specific one. "Would you be willing to stay with your sister one Saturday so I can run a bunch of errands" is not as likely to get the job done as "I have an appointment with the dentist in two weeks at 1:00, which should take about two hours, including travel time. Would you stay with your sister that day while I'm gone?" This kind of request gives the family member a specific event to help with, an idea of how long it will take, and time to make the necessary arrangements.
It is also possible to recruit people to help with routine but occasional activities that are social in nature as well as instrumental. This might involve asking a neighbor or church member to come in to wash and set the MS-partner's hair on a regular basis. Once family and friends become more comfortable spending time with the MS-partner, they tend to make themselves more available.
Transportation for the MS-partner is often a major worry. Many chapters of the National MS Society and other community agencies help people travel to and from medical appointments. Some community transit authorities have programs for their disabled customers. These options should be explored, perhaps by a family member who has mentioned, "if there is ever anything I can do ..."
The caregiving that is done daily at planned times can be difficult and demanding for well-partners. It is unlikely, however, that family and friends can routinely provide this kind of help because of their own schedules and commitments. Some couples find that it is worthwhile to hire help, either through an agency or privately. Most state departments of human services offer a Home and Community Waiver program that makes home health aides and other services available.
Eligibility requirements and programs differ from state to state but should be investigated with a social worker, the National MS Society, or the county department of human services. Family members may differ in their feelings about having strangers in the home to provide personal care, but the fact remains that competent assistance is often available and having that assistance can help preserve the health and well-being of the partner caregiver and possibly the marital relationship.
In many respects, unpredictable daily needs are the most emotionally stressful for couples, and they tend to leave the well-partner feeling either trapped or constantly "on call," to help or get or find or do one thing or another. Since these unpredictable requests can result from emotional needs as well as physical limitations, the responses of the well-partner can become quite emotional as well. It is important for a couple to talk together about how they are each reacting to the other's needs and to discuss the best ways to manage those reactions.
Providing the MS-partner with the security of a portable telephone or emergency alert service may ease the tension both partners feel when the well-partner is away from home. Day respite programs are offered by some MS comprehensive care centers and other community agencies.
Such programs can be a valuable alternative to staying home alone, especially for those who require frequent help and a structured environment. There is no single solution to matters of managing the "hands on" care needs. Developing a workable solution comes from working together to understand what needs to be done, being open-minded about the possibilities for getting the job done, and balancing each partner's needs. To find out more, you can check out Multiple Sclerosis Caregiver Burden.