Recently I was the Keynote speaker at a National MS Society Luncheon for caregivers; those persons who were involved with a family member with Multiple Sclerosis. In preparation for the luncheon I searched for information to add to my material. I found plenty of information for the family on the problems for the person with MS but a lack of information about the impact of the disease on the family; their needs, their challenges, what they need to do to take care of themselves. I have found the dynamics to be similar for those family members impacted by a loved one with Parkinson's Disease, stroke, an elderly parent with medical needs and other challenges necessitating the family to be caretakers.
Let's be clear- the life of the person with MS or other challenge is profoundly changed by their diagnosis and its impact. They did not wish to have the disease or its limitations and are profoundly affected by it. We must also be sure to note, though, that the family also has been impacted. If we do not recognize and address some of these effects family members may suffer and relationships may be profoundly effected.
The person with MS suffers multiple losses; loss of their self image, of things they used to do, of their independence and some of their abilities. Feelings of anger, depression and anxiety are some of the normal responses to the losses. The same feelings also occur with members of their family as well. Family members sometimes feel guilty about their feelings- wishing they didn't feel as they feel, and feeling they shouldn't feel that way. Feelings are okay....it's what we do in response to them that is the issue. For example, a family member having to cancel plans they looked forward to in response to their loved one's illness would normally feel frustration, sadness and possibly anger. The feelings are appropriate. Instead of being angry at the person who's sick, we can be angry at the situation. We can let the feelings out in therapy or with others that can provide us support. We make sure though not to either "stuff" our feelings or explode on others.
Family members respond differently; some talk with many others in order to feel better and others don't talk as much but just try to "keep going". It's important to recognize we have different styles and to respect that we're not the same in how we deal with problems. It is essential to know, though, when help is needed.
If we find that we are having continued problems with family members (or the person with MS), if we have been depressed, anxious or stuck one should seek help. Self-help or support groups can be found through the MS society as can information on MS. Therapy can be extremely effective. If things have been problematic, the time for action is now. If we're having trouble getting somewhere, it can be a good idea to talk to someone who knows the area and can either provide directions or help us find our goal.
Randy Bleiwas CSW, MA, CASAC