While the biggest effect of a MS diagnosis strikes the person receiving the news, the ripple effect of that diagnosis can throw even the most stable families off balance. Routines change, roles shift, relationships revise – there’s no denying when MS is in the house.
However, with good preparation and planning, families can adapt to life with MS. Instead of being “disabled families” they are “families living with a disability.” So where to begin? The experts say “soon after diagnosis,” when family members should acknowledge that each will be affected by MS, though in different ways and perhaps at different times.
The Learning Curve
The foundation for adaptation begins with educating the family about MS in general so that they understand what the person with MS is experiencing today – and may be experiencing tomorrow. Of course, when discussing the subject with children, just what and how much information is given depends on the child’s age and maturity. But all children will appreciate being informed to some degree, and will likely experience less anxiety when they learn whatever facts are shared.
In a webinar for everydayhealth.com, Gabriel Pardo, M.D., notes the importance of family members learning about the disease and its symptoms, as well as how they affect everyday living.
“Doing that will set realistic expectations and will empower everyone in dealing with the emotional, the physical, and the social impact of the disease itself. Family members are the closest and most important support group for those with MS. Many of these patients may not have external signs of the disease, but they may still have special needs such as frequent rest breaks due to fatigue. Understanding these and doing things at their own pace will help tremendously,”
He adds, “Now, for those patients that have more clear limitations, knowing how to assist them without affecting their independence and self-esteem really takes priority. Remember that we are who we are because of our mind and spirit – not just our bodies – and that having MS does not change who we really are. You need to concentrate and enhance what they can do and be supportive as they find out how to best deal with their symptoms.”
Good communication skills are also essential, as the person with MS needs to be clear about his or her needs for support and for independence. Family members must also be able to appropriately communicate their opinions and feelings about the changes that are occurring within the family.
Adapting to New Roles
One of the biggest changes involves a shift in roles. As MS affects the ability to work outside the home, or complete tasks within the home, responsibilities must be redistributed. It is important to remember that there are many ways the person with MS can contribute even when disabled.
In their book The Everything Health Guide to Multiple Sclerosis, Margot Russell and Allen Bowling, M.D., Ph.D., offer the following tips to assist you in reworking your roles in the family system:
Establish clear roles. Identify the roles played within your family system. Individual family members should clearly understand what is expected of them. It may be helpful to make a list for each family member to follow.
Allow for flexibility. Being able to change roles is integral to a healthy family. Roles in all families can change over time, not just in families living with MS. Healthy families have the ability to adapt: The stay-at-home mother, for example, may head back to work, which might be a big adjustment for the rest of the family. Changing your expectations and adopting flexibility is an important strategy when coping with changes in the family structure.
Allocate roles fairly. Roles should be spread among the various members so that no one is asked to take on too much responsibility. Problems can arise if one person is asked to take on too many roles. A full-time working mother cannot be expected to put in forty hours a week and then take on the lion's share of household duties. Everyone in the family should be expected to take on appropriate roles of responsibility.
Teach responsibility. All family members should take their roles seriously and do their best to fulfill their duties. A healthy family system is dependent on each person taking responsibility for himself. In families where clear, flexible roles exist, individual members will be much more likely to take their responsibilities seriously.
Family assessment. It's a good idea to take stock of your family's strengths and weaknesses and take steps to improve the family system. Having good communication skills comes into play here. Schedule family meetings and take stock of how well things are going.
Bowling and Russell emphasize the importance of maintaining a good quality of family life. Being able to give and receive love, enjoy pleasurable activities together, and sustain hope as a family unit are important characteristics of a healthy family.
Even if some of the activities you once enjoyed are off limits, they say, the quality of your time together doesn't have to change: “If hiking or skiing are no longer possible, a beautiful ride in the country can be a nice way to enjoy nature. You want to balance the needs of everyone in the family while leaving a little room for the realities of MS to coincide. Mom or Dad can read a good book in the ski lodge and have lunch ready for everyone at noon rather than having the whole family give up skiing. There is no shortage of ideas to help you adapt – it just takes creativity and flexibility on everyone's part.”
Spouses must also make alone time for each other, and be aware that the caregiver role can affect the spousal relationship.
Don’t be afraid to ask for outside help if needed. Seeking out support from mental health professionals may help ease anxiety and assist you in reworking your roles in the family system.
Reaching Out
The MS Center at the University of California San Fransisco informs patients that the kind of support available will vary according to the resources in the community. This may consist of services such as delivered meals or someone to help with the personal care of a loved one. Other services include housework and grocery shopping. In some communities, grocery shopping can now be done online.
Community resources also offer educational classes or materials, group meetings providing emotional support, and respite for both the caregiver and care-receiver. Support groups can provide an opportunity for caregivers to share their strategies for dealing with difficult problems and emotions that you are now facing. From professionals, other caregivers, and some national organizations, you can learn more about the illness, how to manage stress, how to cope more effectively, how to build relationships, how to make your caregiving task easier, and how to plan for the future.
The earlier you obtain support and assistance, the UCSF MS Center advises, the better able you will be to cope over a long period of time and maintain your own well-being. Do not wait for a crisis to occur. If you are a family caregiver experiencing any of the signs of burnout or increased distress, it is better to seek help before problems become overwhelming.
Children, too, may need guidance, as it is important for them not to lose their childhood. Signs that a child may be at risk are having falling grades or performance in school, having few or no friends, becoming very reclusive, getting into trouble, or using drugs or alcohol.
According to the UCSF MS Center, if a child shows any one of these symptoms, family counseling should be sought. The good news is that children of a parent with MS generally grow up just fine, even though they must sometimes take on more responsibilities than their peers. As in all families, if parents remain sensitive to the needs of their children, and communicate a safe, loving environment, their children will generally grow and develop in a healthy manner.
When MS is in the house, family life does change, but with understanding, communication, flexibility, and support, its interference can be minimized and may even help to draw loved ones together in new ways.
(Last reviewed 8/2012)