FAMILIES LIVING WITH MS benefit most when all family members engage in the planning process together. If the person with MS experiences functional decline, what resources could be pulled together to ensure that he or she could continue to be actively involved in family activities and community life? What kinds of equipment, home modifications, personal assistance, household help, and transportation services will be needed? How many of these needs can family members meet? When will outside resources be required? Who will arrange for these resources? How much will they cost?
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| Potential Impact Of Multiple Sclerosis |
People quickly find, as they embark on this kind of dialogue, that not all family members think alike. Members of a family will approach this kind of discussion from very different perspectives. They are at different places in their lives in terms of age, experience, responsibilities, life plans, needs, strengths, and emotional make-up. They will cope differently when asked to think about a day when their loved one may need more hands-on assistance in order to compensate for physical decline. Some will become anxious and want to avoid the topic. Others might want to jump in and start detailed planning right away. Some will be very flexible in their thinking and not have strong opinions, one way or the other. Others will have very strong ideas about how to go forward.
As with many other family issues, it wilt take time and perseverance to see the process through, but such a dialogue will undoubtedly result in a plan that will be the most realistic and have the best chance for success. If your family finds it too difficult or stressful to initiate these conversations, you might wish to meet with a family counselor to help you jumpstart the process. Your chapter of the National MS Society can refer you to counselors in your area who are familiar with MS and long-term planning issues.
The important thing to remember is that there is no right or wrong solution to this planning discussion. Every family is different. Every family has access to different resources. Finances vary. Family members have different strengths, abilities, needs, and priorities. Community services and programs vary throughout the country. Since it is only the family members who know best what will work in their particular situation(s), non-participation in this kind of discussion puts them at a great disadvantage and limits options and choices.
Topics for Family Discussion
CHOICE and CONSUMER DIRECTION are becoming the operative words in addressing long-term care needs. Long-term care is no longer a phrase associated only with nursing home care; it refers to a continuum of care that includes a range of services in a variety of settings - the home, day programs, assisted living facilities, as well as nursing homes. This continuum of care can begin at any age, and be provided by both formal (professional) and informal (non-professional) caregivers. Therefore, being knowledgeable consumers of long-term care services requires that families be aware of their needs and informed about their options. To begin the process, it is important to have adequate information in the following areas:
- Potential impact of MS
- Individual needs and priorities within the family
- Availability of public and private resources
- Potential uses of adaptive equipment and assistive technology
- Advantages and disadvantages of various long-term care options
- Financial resources.
IN ORDER TO be able to communicate effectively with each other and with potential resources in the community, family members need to be knowledgeable about MS - both in terms of the needs it is generating right now and its potential impact down the road.
Keeping a healthcare journal can help the person with MS monitor his or her health and well-being, while tracking any health- or disability-related needs; a frank and open discussion with one's physician can be helpful in anticipating long-term medical needs. To find out more, you can check out Potential Impact Of Multiple Sclerosis.