THE EFFORTS OF well-partners to meet the decision-making and emotional support needs of their partners, as well as their own reactions to caregiving, require as much creativity and energy as hands-on care. The greatest source of that energy is a satisfying marital relationship. Well-partners who are in satisfying marriages experience less emotional distress, regardless of the kinds of help they are required to provide. It follows from this that some of the best caregiving medicine is to keep or make the marriage healthy.
MS Caregiver Burnout |
Most marriages have a trouble spot or two that seem manageable until the additional challenge of MS enters the picture. In order for a couple to get along, it is essential to keep those trouble spots from becoming open wounds. This is best done by acknowledging the difficulties and devising solutions. Some couples choose to handle these issues on their own, whereas others opt to work with a marriage counselor or attend a couples' support group, such as those offered by many National MS Society chapters or comprehensive care clinics.
Couples living with severely disabling MS sustain many significant losses during their lives. These may include having to give up activities they enjoy doing together, changing career goals, being unable to provide for their children as they had planned, or having difficulty planning for retirement. Couples who are successful at managing these losses and remaining committed to one another seem to do so by recognizing the need to be in charge of MS, rather than the other way around, and by seeking help and tapping available resources along the way. In order to turn losses into challenging opportunities, couples need to give their marriage and family first priority, and they must be willing to work MS into the rest of their lives.
Having a plan for the future can be an important part of this process. Many couples begin to live one day at a time, in part to avoid the frightening realities that the future may hold. Having a plan can help put worries to rest and prepare people to be more in control, no matter what the future brings. Occasionally, the physical and cognitive problems of MS can be so advanced that the well-partner must take over all decision making for the MS-partner. Such severe disability can be very distressing for the well-partner who is grieving the loss of his or her formerly equal partner.
This situation can be somewhat easier to manage if the couple has been able to talk and plan together weal in advance. An open discussion of this kind enables the well-partner to understand the wishes of the MS-partner and take them into account in treatment and long-term care decisions (e.g., nursing home placement or life-sustaining treatments).
WELL-PARTNERS WHO ARE caregivers for loved ones with disabling MS have many responsibilities. Among the most critic are keeping themselves and their relationship healthy. This involves attending to their personal health and emotional needs; working with their partners to manage problems in the relationship; recognizing that everyone has a limit to what he or she can be and knowing what their own limits are. Well-partners need friends, hobbies, and other social and emotional outlets, and need to recognize that asking for help is a sign of honesty strength. It may also mean making sure that they have their own MS-free zone in the home - a place where they can feel "off duty," if only for short periods of time. Taking these steps will help partners maintain their care partnership - in the true sense of the word - and ensure the well-being of their partners and themselves. Taking charge in this way can help put MS in its place and keep family life as the central focus. To find out more, you can check out MS Caregiver Burnout.