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Parent & Patient

It's my fault - I passed this on to them. It's hard to have dreams or goals for the future because of the uncertainty…"

Raising a family while suffering from any chronic illness can present special challenges to parents. This is particularly true when one suffers from mitochondrial disease (Mito) as this disease presents with so many various issues. Fatigue, skeletal muscle weakness, and pain present some of the biggest obstacles to overcome. One of the most important principles to remember is that mitochondrial disease is part of your life; it is not your life. Children need to know that Mito is not in charge; you are. It will help them to feel more secure through the ups and downs of the condition.

It is a good idea to try to follow the basic principles of energy conservation outlined in the energy conservation section. With that said, a few other things could help parents who have Mito:

  • Rest  whenever possible
  • Pre-plan
  • Cope with fears and questions

Resting whenever possible is most important

If children are still young and take naps, it is a good idea to nap when the child does or nap while older children are at school.

Have your children watch a video or TV show for a certain period of "quiet time" for everyone. This requires a mind-set that overlooks the possible untidiness of the house!

Pre-plan

Try to schedule fun activities with your children in your highest energy periods, then quieter activities later in the day when you are more likely to be tired. When a parent has a chronic illness, it is important that he/she focus attention on what really matters -- personal relationships, not a perfectly clean house.

If the parent with Mito is still able to work outside of the home, it becomes important to prioritize time and family needs. If it's possible to hire a house cleaning service, this is a wonderful saving of energy and time. If not, try to break down chores and assign different family members certain responsibilities according to his or her age. Even a toddler would be pleased to run and get a simple object for a parent and save them a few steps.

One of the most time-consuming aspects of modern child rearing is taking children to and from various extracurricular activities. With Mito as an extra unwelcome member of the family, it is important to limit each child to only a few activities. This helps to reduce the total driving/activity time outside the home. It is helpful to arrange a car pool if possible with other parents of children in the same activities to reduce total driving time. If a friend offers to do an errand for you, accept their kindness. Never refuse any offers for help! As a person with Mito, you must swallow your pride and take anyone up on his or her offers. And it is very important to always remember, "If you don't take care of yourself, you can't take care of anyone else, either!"

Using easy-to-prepare meals is another way to save more energy that can be devoted to the family. Since people with Mito may have GI motility problems, meal preparation might be difficult from a nausea perspective. Try to prepare foods that are nutritious for your children and spouse but can also be tolerated by you "the Mito parent," so you don't have to prepare something special for yourself.

Coping with Fears and Questions

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.

In conclusion, it remains 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.

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Comments

edslisa's picture

edslisa

01/23/2012

Excellent suggestions!