The toll of mito on a family can be psychological as well as physical. Just as the affected parent must adapt to his or her physical problems, so must the children of the family. Youngsters may worry, “Can Mommy still look after me?” or “Does Daddy still love me when he is always so tired?” It is particularly stressful for the child if a parent is hospitalized, wondering, “Will he die in there and never come back?” It may also be hard for the child to adjust to a parent using a cane/walker or wheelchair/scooter. My own personal experience with the latter is that children think these aids are like big toys and rather fun. Rules may have to be established about their use.
A big fear of children of all ages can be the fear that they too might contract this disease. Unfortunately with Mito, it may be passed down to children through genes. This fear is probably always at the back of the parents’ minds. All of these worries and concerns need to be handled in an open way. Meeting the child’s needs as they are presented is important.
Worries need to be addressed at the level of the child’s functioning. A complicated explanation will not soothe a 4-year old. Questions asked should be addressed in a straightforward manner without overly scaring a child. A child should not be overburdened with facts about the disease that no one can control. It may be beneficial for the entire family to have some kind of family counseling. Support groups for various family members can also be very helpful. If you know of another adult suffering from a similarly debilitating disease, letting the children of both families talk may be helpful.
Last but not least, let us not forget the spouse of the one affected with Mito. It is on him or her that much of the pressure of the illness falls, as so often he or she is the one picking up the slack that the afflicted partner is unable to fulfill. This can be as physically draining as well as a psychologically daunting task to fulfill, and this fact needs to be appreciated by the Mito-involved parent. The unimpaired parent needs time out occasionally from all of the many responsibilities, if this is possible. Open communication between spouses remains very important. Both must feel comfortable in expressing their needs. Counseling might play a role here as well.
It’s important for the whole family of a Mito sufferer to be involved in the care of the disease. However, make sure the disease does not become the center of your family life, so that there is time for some fun occasions as well.