EVEN WITH THE many adaptations they have already made, well, partners may find it difficult to keep up with the caregiving responsibilities that face them on a daily basis. Keep in mind that it is generally not the major, short-term crises or stresses that people find most challenging; it seems, instead to be the ongoing, low-grade pressures of daily life that produce the biggest stress.
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| Multiple Sclerosis Caregiver Support |
Some of the common problems related to progressive MS - unsafe mobility, bladder and bowel incontinence, and the behavioral changes that can come with cognitive problems - are known to be particularly stressful for caregivers. In order to manage thee problems and the stress that they can cause, it is useful to think about the different kinds of help that well-partners provide. This enables the well-partner to evaluate the caregiving situation and (1) think about how best to manage the physical activities involved in caregiving, (2) figure out why certain aspects of the situation seem especially stressful, and (3) sort out the kinds of help that may be available from family, friends, or paid help.
Hands-On (Instrumental) Help
THE MOST OBVIOUS type of assistance provided by well-partners is called instrumental or hands-on help. This includes activities that take place each day at predictable times (e.g., helping the MS partner bathe and dress in the morning, take medications, or get ready for bed). Other hands-on activities, like helping the MS partner move from one chair to another or get to the bathroom, refilling an empty drink cup, or getting something from another room, happen often but at unpredictable times during the day and night. Still other hands-on help occurs at planned but less frequent intervals (e.g., assisting with nail care or correspondence, traveling to medical appointments, and shopping).
Planning And Decision-Making
OVER THE COURSE of their relationship, couples generally come to a working agreement regarding those issues that they decide together and those that they handle individually. Helping a partner gather information and make important decisions happens at one time or another in virtually all relationships. Regardless of their previous way of doing things, however, well-partners generally must become very involved in gathering information and making decisions with or for a significantly disabled MS-partner.
This may be because of the physical symptoms of the person with MS, such as visual impairment, or cognitive symptoms, such as difficulties with remembering or arriving at a reasonable decision.
It becomes increasingly important for well-partners to be involved in treatment planning as they become responsible for implementing various parts of the plan. It may be the well-partner who manages the medication schedule, gives a drug injection, or performs intermittent bladder catheterization.Treatment plans can fail if the well-partner does not know the medical staff or have their ready support, does not understand why and how a procedure is done, or is simply told to carry out treatment routines that are completely incompatible with his or her schedule.
Emotional Support
IN ADDITION TO help with daily activities and decision making, people with significant disability need ongoing emotional support. As in most lasting, intimate relationships, they look to partners for understanding, respect, reassurance, and encouragement.
How Caregiving Impacts the Couple's Relationship
AT THE HEART of most long-term relationships are mutual concern, respect, and affection; an enjoyment of each other's company; and a shared history as well as hopes and plans for the future. Although these aspects of commitment are just as important for couples that are living with advanced disability, there are inevitable shifts in some aspects of the relationship. The need to give and receive intimate personal care, the well-partner's irritation at always being on call, and the MS-partner's frustration at having to wait for help or concern over being a bother inevitably have an impact on the couple s emotional life.
For some well-partners (particularly those whose MS-partners have experienced significant cognitive changes), the emotional investment gradually shifts from being a romantic commitment, a shared raising of their children, and planning for a healthy future, to one that is based on friendship, managing the current situation ("getting through the day"), and a commitment to keeping the marriage vows. Even in the face of this shift in feelings, the emotional support provided by the well-partner becomes increasingly essential to the MS-partner, whose social network tends to grow narrower.
The MS-partner's increasing dependence and need for various kinds of help bring about inevitable changes in the marital relationship. These changes may happen slowly over an extended period of time or abruptly because of sudden disease activity. Some couples report that the disease has gradually allowed them to make room for the disability and related caregiving activities in their relationship and family life.
"Taking things as they come" has become the family motto, and the adaptation has been relatively comfortable. Not surprisingly, however, many couples find that unexpected changes remain unwanted challenges. The changes often come during the family's peak years of career and family responsibilities and seem to affect all aspects of family life.
Some people believe that there is no point in thinking about or discussing these stresses because there is little that can be done about them. They acknowledge that they got the short straw in the "in sickness and in health" gamble. Our experience as clinicians and caregivers, however, is quite the opposite. By increasing their awareness of the specific situations that cause stress and examining how they have successfully managed changes in the past, couples can devise strategies for enhancing the care partnership while minimizing caregiver burn-out. To find out more, you can check out Multiple Sclerosis Caregiver Support.