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| MS Long Term Care |
Although relatively few families living with MS will find themselves dealing with this level of disability, the post is intended to help those families step back a bit - perhaps to view their situation from a somewhat different perspective - and to consider options for helping themselves and their loved ones.
In the most ideal of circumstances, families living with severe MS approach their rater-relationships as a care partnership, in which each person is involved in many aspects of family life, including managing MS-related changes. The term care partners encourages individuals to think of themselves as working together to create and implement management solutions and problem-solving strategies. In addition, it suggests the importance of considering the needs and wants of everyone involved - not just those of the person with MS.
When MS results in significant physical and/or cognitive disability, or one care partner's emotional reaction or adjustment to the disease is totally out of sync with that of other family members, the partnership may become imbalanced or out of kilter.
The ways in which a partnership can become imbalanced and the feelings this can cause, as well as strategies for protecting the balance and restoring it when it has been lost are described. Also, some suggestions for making the situation livable in the event that the imbalance cannot be corrected are presented. Because this post focuses primarily on couples that are living with MS, the person with the disease is referred to as the MS-partner, and the person who does not have MS is called the well partner. Another term, caregiver, is used specifically for those who provide help with personal care or daily routines.
Care Partner Characteristics
APPROXIMATELY ONE-QUARTER OF the 400,000 people with MS in the United States require help with daily activities or personal care. They receive most of their help from partners, who typically have major additional responsibilities, including employment and childcare. People who have disabling MS tend to be married and in their forties and fifties by the time they need help with daily routines. Their significant disability is the result of physical symptoms, cognitive changes, or some combination of both.
Approximately one-third of people with MS have difficulty walking without assistance. Some face increasing dependence for personal care, toileting, home management, and getting around in their homes and communities. Regardless of their physical condition, approximately 10% of people with MS have cognitive problems that are significant enough to interfere with various activities of daffy living.
The families living with this stage of MS typically have children their teens, who are preparing to leave home or already out on their own. There may also be aging parents, themselves in need of increasing amounts of assistance from their adult children.
"Old Hands" at Multiple Sclerosis
THE FAMILIES DESCRIBED in this post have generally been living with MS for a significant amount of time. They have already managed many MS-related changes, in a gradual process that began when they learned that a family member had a chronic illness that could cause increasing disability. These families have had more contact with healthcare providers and insurance companies than most people. They have had to learn about the many symptoms that MS can produce and how those symptoms can change over time.
Family members have also gotten over the hurdle of "going public," because the MS-partner typically has visible symptoms that require the use of an ambulation aid. Extended family and friends have become involved, perhaps by helping the MS-partner in some way or by providing emotional support for a member of the family.
Living with unpredictability has become a way of life, and everyone in the family has had numerous experiences with having to change or cancel long-awaited plans because of the disease. The MS-partner has probably had to limit or stop working outside the home or performing many household chores.
The family has dealt with loss of income and the ongoing presence of the MS-partner around the house. They have learned to pitch in with the housekeeping or maintenance chores that the MS-partner previously handled. There have been other noticeable changes in the routines of family life as well. The couple has probably changed how they spend their free time, both individually and together. They have undoubtedly thought about how they will handle the future, when and if things begin to change dramatically. To find out more, you can check out MS Long Term Care.