Friday, January 10, 2014

When Did You Realize You Are a Caregiver?

Today I received an e-mail from the Caregiver Action Network asking caregivers to share their stories for their website, which is all about networking caregivers, caregiver advocacy, and tools for caregiving.  I usually read these e-mails and then trash them, but today one of the questions they asked really stuck with me and I decided to actually write them back.  So, here's the story about when I realized I was a family caregiver:

About 7 1/2 years ago, I started dating the man that would become my husband just two years later.  Justin was born with cerebral palsy and has been in a wheelchair since the age of 4.  From the beginning of our first date, I started participating in caregiving activities, even if that's not how I would have identified them at the time.  Before we could go to dinner, I had to learn how to operate Justin's RampVan.  When Justin ordered pasta at dinner (which we still can't believe he did!), I had to cut it up to make it easier for him to eat.  But even then, I didn't identify these actions as being something out of the ordinary.  To me, this was what getting to know Justin entailed.  

After we were engaged 11 months later, I started working with Justin's parents to learn how to take care of Justin--how to give him a shower, what to expect from doctor's appointments, Justin's medical history, etc.  Now, at this point, I was well aware that this was not the same process my other engaged and newly married friends went through in the months leading up to their marriage.  But, again, I didn't think of myself as a caregiver.  For me, this was how I learned ways to care for and love Justin.

So, when asked the question, "Do you remember the moment you realized you became a family caregiver?" I can answer with absolute certainty that I do, but it's not when people expect. After we got married, Justin and I lived in a shoebox of an apartment, not an easy thing to do with a motorized wheelchair, but we managed pretty well.  One night, as I was laying awake unable to sleep, I heard a noise outside.  It turned out to be some unidentified animal in the bushes, but that's beside the point.  It was in that moment that my whole body tensed to hear what was happening and I quickly started calculating what I was going to do if someone tried to break in, it hit me.  Our protection as a family was up to me.  If I didn't know what I was going to do, if I wasn't aware of how to handle an emergency, there wasn't a lot Justin could do without me in those situations.  

As I have reflected on this occurrence over the years, it always strikes me how strange that this was the role my dad usually played in our family, and in realizing this role fell on me in my own family, I finally saw myself as a caregiver.  I didn't receive this revelation with bitterness or upset, but it was a turning point.  Ever so slowly, I began to name the other things I did as a caregiver, recognizing them for what they were and no longer feeling like I had to hide them from people who didn't understand.  It has taken a while and I am still in process.  But this moment in the middle of the night over 5 years ago began my process of giving a name to caring for my husband.  It gave a name to all the times I struggle physically and emotionally with all that caregiving requires.  If I could have known anything as a blushing bride of 21 years, I would have wanted someone to tell me it was ok to name caregiving, to own it for what it is, good and bad.  I could have guessed at that time that caregiving would be hard, though definitely not how hard it might be.  But, the freedom that comes with owning all aspects of caregiving, with naming them for ourselves and others in love and acceptance is a gift I needed to receive and I try to give now to the very best of my ability.