Parents and Caregivers of Children with Mito

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 as this disease presents with so many various issues. FatigueThe overall feeling of tiredness or lack of energy. It is not the same as simply feeling drowsy or sleepy. Being fatigued means having no motivation or energy., 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.

One of the biggest challenges for a parent or caregiver is to seek help. Asking for and accepting help is a complex issue. Obviously you first need to admit that having some help will make a real difference in your loved one’s quality of life, and therefore yours as well. Then you need to define what help you need. Which tasks or chores would be the easiest to ask others to do? Which do you really want to do yourself? And which, if any, can you afford to pay others to do? If this just sounds like more work, know that it doesn’t have to be an overwhelming task but rather just a way to organize the thoughts and information you already have. Ready to give it a try?

Here are Six Steps to Getting Help:

1. Recognize that caregiving, like any job, is made up of lots of individual tasks, not all of which are of the same importance. Some tasks take a few minutes; some may take many hours. Some tasks are easy; others require some skill and fortitude. The challenge is to know the difference.
2. Recognize that asking for help is a sign of strength and not of weakness. It means you truly have a grasp on your situation and have come up with a proactive problem-solving approach to making things easier and better.
3. Create a list of the tasks that need to get done in any given week, or at least those you are most concerned about, such as balancing your responsibilities at work with taking mom to the doctor and Susie to soccer practice, bathing and dressing your husband, cooking, cleaning, etc. When you see how long the list is you’ll quickly understand why you are so tired and don’t have time for yourself.
4. Group your tasks into categories such as personal care tasks for your loved one, transportation, household chores. You can group your tasks into only a few broad categories, or many specific ones. There’s no right or wrong way. It’s all a matter of personal preference.
5. Write down your caregiving worries. Where will we get the money to pay for John’s medications? Who will care for Mary if I get sick? Where can I find a daycare facility that provides transportation? Seeing them in black-and-white helps diffuse some of their emotion.  It also allows you to think more rationally about your concerns and understand how getting help with some of your tasks might lessen the stress. It can provide the basis for deciding which tasks you might ask a neighbor, family member or the church to help out with, which you are willing and able to pay someone else to do, and which there might be a public program for.
6. Share your lists with someone you trust before you actually reach out for help–a friend, therapist or clergyman, perhaps. The intent is to first get comfortable with idea of talking about your need for assistance and hopefully get some encouragement and good ideas in the process. Then take a deep breath and actually ask someone to help with one of the tasks on your list, or ask for guidance in resolving your most persistent worry. Start with something small, especially if you are looking for hands-on assistance or something that requires someone doing you a favor. Don’t get discouraged if you get rejected at first. It sometimes takes perseverance. Just remember–the effort is worth it because the goal is better care for your loved one and yourself.

Visit these additional resources that focus on supporting Caregivers:

• Caregiver Action Network
• Family Caregiver Alliance
• 211 Nationwide Health and Human Service Information and Referral Program
• Next Steps in Care