Tuesday, April 17, 2012

Parent as Caregiver

“There are only four kinds of people in the world – those who have been caregivers, those who are currently caregivers, those who will be caregivers and those who will need caregivers.” ~Rosalyn Carter.

The thing about being a caregiver is that I never aspired to be one.
When I was a child I never dreamed of being a nurse.  I am not even naturally inclined to giving first aid.  I imagine that many other caregivers have thought the same things.  But read the opening quote again – caregiving is an unavoidable part of the human experience.  I might argue that it is the essence of the human experience.

I often wish that when Evan was born I had been given a book that spelled out my role as a caregiver.  It could have outlined some basic expectations of parent versus caregiver, enlightening me ahead of time:

            Parent:  When your child has a cold, wipe his nose, provide a vaporizer, give a little Tylenol or cough medicine, provide lots of fluids. Take him to the pediatrician if symptoms aren’t improving.

            Caregiver:  When your child with special health care needs has a cold, do all of the above.  Also, you will have to give breathing treatments continuously, administer steroids to reduce airway inflammation, and you will probably have to go into the ER and be admitted to the hospital.  When at home, you will have to stay awake all night in case your child goes into respiratory distress and you will need to give breathing treatments and percussive therapy.  If you absolutely can’t stay awake, set your alarm for every hour to do a breathing check.

 Breathing treatments are more fun with sunglasses on!

I haven’t found an abundance of accessible instructional resources for the job of parent / caregiver.  Much of what I have found is too specialized for my needs – focused on issues that don’t apply to Evan.  The National Family Caregiver’s Association website is mostly geared towards elder care, but it has a lot of information that I have found useful as a parent.  The NFCA website has a page titled Tips and Tools.   On this page there is a list tip sheets and how to guides to explore. Here is the link:  http://www.nfcacares.org/caregiving_resources/tips_and_tools.cfm

Even though I fully realize my role as caregiver, I keep learning every day.

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