The Blog

Caregiver…One More Title?

I have a lot of titles in my life.  I am a wife, a mother, a daughter, a sister, and an attorney, and an employee.  Yet somehow, I have now added “caregiver” to my list of titles.  While I understand that I am a caregiver to our son, I really do not like thinking of myself as Ryan’s “Caregiver.”  Ryan is completely capable of performing his day to day activities.  He wakes up, he works out, he makes his breakfast, he goes to work, comes home, spends time with the family, and gets himself ready for bed.  The only part that involves me as what could be construed as a caregiver is that I drive him to and from work or whereever else he needs to go.  So, what is a caregiver really and why is it that I keep hearing this title in reference to Ryan and me?

Mirriam Webster Dictionary defines the word “caregiver” as “a person who provides direct care (as for children, elderly people, or the chronically ill)”  When I did a Google search for epilepsy caregiver definition, most of the results referred to “patients and caregivers” and had nothing to do with a definition of “caregiver.”

caregiverdef

Then I saw it.  “Caregiver Burden in Epilepsy: Determinants and Impact – NCBI – NIH” on April 8, 2014.  In this article, a caregiver “was defined as the family member who was primarily responsible for provided every-day care for the patient.”  So, now even though there is a definition out there, I still do not feel helped.  I am having trouble accepting that I am primarily responsible for providing every day care for Ryan.

Next I found that Edmonton Epilepsy Association published a pamphlet, which seemed to be more on point with my mental state and personal theory of what a caregiver should be.  In the pamphlet, the Edmonton Epilepsy Association describes that a caregiver “provides the link between the individual, health care professionals, and the community at large.” 

edmonton caregiver defNow, this is a definition with which I can live.  I do go to his doctors appointments with him.  I do talk to his doctors about his care and treatment and ask questions on his behalf.  I am reaching out to the community at large for financial and emotional support to both of us.  

As I continue to read, I find that it really is a great resource.  It does not make me feel like I am a nurse or aide to Ryan, but rather, that I can be both a wife and a caregiver to him at the same time and using the same resources.

For those like me, struggling to comprehend this new title of “caregiver” I would say after this research that it is not a new title but an enhanced titled.  We have been doing these things all along but the diagnosis of Epilepsy in our loved one has put a new focus on us.  With words of encouragement and the understanding that we are there to make sure the person is safe and to be a “link” to healthcare providers and the community, I am now more accepting of my title of “caregiver.”

Starting this Site

I have known Ryan since before he was diagnosed with Epilepsy. Yet it wasn’t until 4 years into our marriage when I truly saw and understood what effects Epilepsy has on a person both physically and mentally. It was also not until this time when I felt the impact Ryan’s epilepsy had on our toddler son and me. It is not an easy condition to talk about or explain. However I want to be able to share our experiences, research, accomplishments, and even set backs in hopes that others can learn more about Epilepsy and become more aware. Welcome to ROC Stop Seizures. Thank you for taking this Epilepsy Awareness Journey with me.

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