Life with MS

Since MS is such a variable disease, needs are constantly changing. Ongoing family conversations are therefore going to be needed. Whenever there is a significant change in disease course or function, or if there is a change in the family that will affect family roles, another conversation needs to happen.
 
Be honest about your feelings and assumptions and respect the feelings and opinions of others, even though you may not understand or agree with them. The person with MS may have thought the family would always be able to do whatever needed to be done, whether it was administering medications, running errands, cleaning house, or providing hands-on assistance. But situations can change as children move away or a spouse’s health declines. In the same way, family members might have assumed that they would always be able to meet all of their loved one’s needs. But unanticipated life events, career demands, or failing health can become an issue.
 
The following questions should be addressed by all members of the family when the current care plan is becoming more difficult and there is recognition that some problem-solving is needed:
 
1. How is the family member with MS doing right now? What’s working? What isn’t?
 
2. What are his or her medical needs? Personal care needs? Who is doing what? Is any change anticipated?
 
3. Is the person with MS receiving good clinical care and experiencing good quality of life?
 
4. How are other family members doing? Are there new or additional things causing stress? Are they being handled?
 
5. How much do we know about community resources that might be able to help us?
 
6. Do we have a clear understanding of the financial resources we have to work with?
 
When conversations are difficult
 
When conversation about changing care needs occurs, everyone affected may share a variety of feelings and opinions. Not everyone may agree on what needs to happen next. Simply acknowledging that the discussion is difficult for everyone is a good way to start. Recognize that you are working together to reach the best possible solution. Sometimes emotions can interfere with communication, so encourage each other to speak calmly about the matters at hand. Setting some ground rules before the conversation begins can help too. Let everyone have a turn to express his or her thoughts. Try not to interrupt. If you don’t understand something, ask for clarification when the person finishes speaking.
 
If, despite your best efforts, a mutually-agreeable decision cannot be reached, consider asking for outside help. A care manager is useful to identify resources and offer suggestions that might not have been considered. Enlisting a social worker, clergyman, or family therapist to assist in the process can improve communication and understanding. Perhaps individual counseling is the best option for those struggling to cope with stress and emotions.
 
Local professionals can be located by contacting a MS membership organization or reaching out to your state’s psychological association at www.apa.org.
 
There are certain times when these family conversations are most likely to be triggered. One is when the family realizes they cannot do it alone and that more help is needed at home. Another is when a move to a more supportive housing alternative, such as assisted living, may be necessary in order to assure safety and maximize the independence of the person with MS. A third is when 24-hour skilled care in a nursing home setting might be necessary.
 
This article is an excerpt from Maximizing Independence: A Guide to Planning for Changing MS Care Needs, a booklet that was developed collaboratively by the Multiple Sclerosis Association of America, MS Focus: the Multiple Sclerosis Foundation, and the National Multiple Sclerosis Society. To order a free booklet, contact MS Focus by email: support@msfocus.org or call our Program Services Department at 888-MSFOCUS (673-6287).
 
(Last reviewed 5/2012)