By Ann Schrooten
PART II – The Personal Perspective
The Role and Challenges of the Caregiver
Caring for a child who is ventilator dependent requires 24/7 vigilance and involves a level of skill and knowledge that exceeds the typical parent’s experience. Jack must be continuously watched for signs of respiratory distress, which can result from an airway that is blocked with mucous or from not getting enough ventilator support. It is not uncommon to have to adjust ventilator settings, bag Jack through periods of respiratory distress, or perform an emergency trach change.
Because Jack is medically fragile, he can only be left in the care of his parents or a qualified nurse. My husband and I both work outside the home and are fortunate to have private insurance and Medicaid that cover in-home skilled nursing. We currently have nursing coverage 10 hours a day, Monday through Friday. On rare occasions, we can get a few weekend hours of nursing coverage. However, we don’t get any nursing coverage at night.
It wasn’t in the too distant past that the level of care provided to Jack at home took place only in a hospital or skilled nursing facility, and only by medical professionals. Without question, children like Jack thrive better and live longer when cared for in their own homes. However, the demands of caring for a medically fragile, technology dependent child are unrelenting and the stresses on the caregiver are many.
There is the emotional stress of knowing Jack’s life is dependent on my ability to assess and respond quickly and appropriately in an emergency situation. At night, because I don’t have nursing, I rely entirely on the pulse-oximeter to alert me of any problems. So far, I don’t think I’ve ever slept through an alarm. It’s not only scary depending on technology to breathe for your child, it’s equally as scary relying on technology to wake you and alert you to your child’s falling oxygen saturations. Perhaps scariest of all is figuring out why your child’s oxygen saturations are falling and how to resolve the problem quickly.
There is stress associated with going to work or leaving the house, both of which are dependent on whether I have reliable and competent nursing care for Jack. There is the guilt associated with not always being able to meet the needs of my three other children because Jack’s needs must come first, and not being able to do many things a typical family does because of Jack’s extensive medical needs. There is the financial stress of missed days at work due to a nurse calling off, a doctor’s appointment or a hospital stay, as well as uncovered medical expenses. And there is the chronic exhaustion that comes from lack of sleep, constant vigilance and the never-ending battles with insurance and equipment companies.
Despite all the stress associated with life as the parent of a medically fragile/technology dependent child, you learn to do what needs to be done, you get into a routine, and you manage to find joy along the way. Over the years, I’ve gained confidence in my ability to assess Jack and manage his care at home. I can confidently troubleshoot equipment problems and assertively deal with the medical professionals who provide Jack’s care, and with the companies that dictate the services and equipment he receives. I can now pack up our mini-PICU in short order, load Jack in the van, and travel with him to the next state or halfway across the country. My focus has moved beyond just surviving this life to living it. All the encouragement I need to “keep on keeping on” is the knowledge that Jack is loved, Jack is happy, and Jack doesn’t know any differently.
One of the most difficult aspects of being the parent of a child with significant medical and special needs is the sense of isolation you feel. Very few people understand the challenges you face and it’s not as if you can walk out your front door and find a parent in your neighborhood who lives a similar life. It’s imperative to find people who can understand and support you.
The following resource has been extremely helpful – both in terms of providing information and providing friendships with parents who understand:
Aaron’s Tracheostomy Page – www.tracheostomy.com
The Internet’s leading tracheostomy resource since 1996, Aaron’s Tracheostomy Page facilitates networking and support for parents and caregivers of children with tracheostomies. I am one of the Administrators of Aaron’s Tracheostomy Page and have been active on the message board since 2002.
The Willow Tree Foundation – www.thewillowtreefoundation.org
Personal experience has taught me that parents of medically fragile children need respite time. The research I conducted in connection with establishing The Willow Tree Foundation supported this. One of the most profound facts I discovered (and can personally attest to) is that the recurring stresses associated with caring for a medically fragile child do not become less disruptive over time. In other words, we don’t ever get used to this. We learn to cope, but it doesn’t get easier with time. Knowing that the need was there and having research to support my mission, in 2004, I established The Willow Tree Foundation. The Willow Tree Foundation is a tax-exempt organization whose mission is to enhance the lives of parents and caregivers of medically fragile children. The Foundation funds respite opportunities that allow parents to take “time-out” from the unrelenting demands associated with their child’s care so that they can maintain their stamina and sense of perspective and continue to meet the intense medical needs of their child. The Willow Tree Foundation accepts referrals from medical professionals caring for a medically fragile child, such as doctors, nurses, social workers, case managers or support coordinators.