In 2010, I participated in a research project about caregiver fatigue, and co-authored a paper about the study for the Journal of Pediatric Nursing entitled, "The Relationship Between Home Nursing Coverage, Sleep, and Daytime Functioning in Parents of Ventilator-Assisted Children." 

As the mother of a ventilator-dependent child, I was not surprised to discover that sleep deprivation often leads to significant depression and decreased daytime function in family caregivers. My research and my personal experience led me to realize that specific and advanced planning for the care of my child are necessary to maintain a balance in life. Planning a schedule a year ahead of time can reduce fatigue, anxiety, and feelings of being overwhelmed. It may even lead to greater self-confidence, less fear of the unknown, and a stronger sense of control.

I’ve found a simple way to keep on top of my child’s health care needs without getting overwhelmed. I believe you’ll find it handy, too: buy a calendar for the next year. Starting in October, fill in the calendar with essential tasks that have to be accomplished for your child during  the year. Try to complete it by December so you’ll be ready for the upcoming year. Obviously, flexibility is necessary when unplanned illness or emergency arises, therefore, use a pencil when completing your calendar.

Here is a suggested list of 10 essential tasks to achieve each year:

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  1. Schedule your child’s annual routine appointments with specialists well in advance. If possible, cluster two or three appointments on the same day if your child is seen by multiple physicians at the same location. It is easy to neglect routine visits if your child sees doctors frequently during periods of illness. An annual routine visit, however, is essential so that  the physician can perform an examination when your child is as healthy as possible, allowing the physician to best asses growth and development.
  2. Schedule a monthly review and practice of CPR with your professional home care provider. Accidents and emergencies are never planned. Months, and even years, can go by without an emergency in the home.  Monthly practice of emergency response will keep your skills fresh and increase the likelihood that you’ll respond quickly and appropriately.
  3.  Schedule an annual review of the year with your child’s home care manager. Most clinical managers of nursing agencies make a monthly visit to your home. Make one of those visits an annual visit during which you discuss the successes and challenges of the prior year and express your hopes and desires for the coming year. This is the time for open, honest communication. You are in control.
  4. If you’re married, schedule a monthly “time-out” away from home with your spouse.  Plan to do something fun on the same day each month and don’t let anything get in the way. Go out to dinner, see a movie, visit friends or do anything that gets you out of the home together. Even if you’re tired, go out once a month! Your marriage is worth it.
  5. Schedule an annual appointment with a nutritionist. Pediatric nutrition and hydration orders are often prescribed while the child is in the hospital. In order for children to grow and thrive, calories and fluids need to be monitored closely, especially for children who are tube fed. Specifically discuss free water intake. Tube-fed children often receive inadequate amounts of essential free water. Discuss the need for increasing or decreasing calories for the child’s nutritional balance.
  6. If your child is school-age, schedule your child’s annual Individualized Educational Plan (IEP) meeting well in advance of the date. Give yourself time to prepare for this meeting! Does your child need adaptive equipment in the classroom that has not been offered – speech, hearing, vision, or feeding devices? Therapeutic mobility equipment?. Were appropriate changes made from last year’s IEP?
  7. Schedule an annual call to the power companies. Remind them that you have a child who needs priority attention for restoring power during outages. Make sure you’re on the priority list and get the name of a specific contact person.
  8. Schedule an annual safety check of your home. Inspect and repair or replace: the wiring for frays in all of the equipment, electrical outlets, furnace air filters, and smoke detectors. Ensure that the oxygen supply is stored properly.
  9. Schedule a day to research grants and awards that are being offered that year. Many government and charitable organizations offer grants for equipment, generators, respite care, recreational events, camps, sibling activities, and more. Take advantage of these.
  10. Schedule a day to talk to your health insurance company. Insurance benefits and deductibles are often confusing, especially when a child has more than one type of insurance. It’s important to know the details of your child’s insurance coverage before it is needed. Financial concerns can be one of the biggest stressors of caring for your child at home.

Don't forget to download the printable version of the top 10 essential tasks to complete each year! 

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