Sunday, November 1, 2015

Epilepsy Awareness Month 2015: Caregiving. Family. Advocacy.

It is hard to believe it has been seven years since I first started caring for Robert.  In the fall of 2008, Robert had recurring infections and allowed a stranger to live in his house (a homeless woman he and his companion, Judy, met while picking up their prescriptions).  By Thanksgiving, this woman had given Robert a black eye, Robert’s infections continued to recur and I realized he was eating expired food and living in less than clean conditions.

Mere weeks later, Robert was living in a Skilled Nursing Facility near my home on a long-term course of antibiotics, the new “roommate” had been given money by Other Brother and strongly encouraged by both of us to find another place to live and I was faced with the reality that Robert could no longer live independently.

It was a giant snowball of a mess, quickly gaining speed and intensity into full-time caregiving. 

I did not even realize what I was doing or that “this” was caregiving.

And that I was now a caregiver.  

Robert’s decline from a lifetime of uncontrolled epilepsy, almost daily seizures, dozens of medications, surgeries, falls and infections have resulted in a fast and furious decline in cognition and mobility. Eventually, his decline was labeled as “CTEM” or “CTE,” Cumulative Traumatic Encephalopathy (brought into awareness recently by football players who have suffered from repetitive concussions). 

(I will talk more about this later in the month.)

I started this website in 2009 thinking it would be used to update family and friends. I soon became passionate about spreading awareness about epilepsy and, frankly, was getting pretty darn irritated with the stigma it still carried.  Not to mention the underfunding of research to find a cure!

It did not take long for me to realize my focus of the website but, more importantly, a passion and purpose: Caregiving. Family. Advocacy.

What do these mean to me? (Thanks for asking!) J

Caregiving. Hard work and requiring a lot of learning on the job flying by the seat of your pants. Caregivers help each other and are the hardest working people I know. It is hard work whether from daily tasks (many of them unpleasant) to fighting for quality care and resources.

Family. Not always unicorns, puppies and rainbows.  Well, rarely unicorns, puppies and rainbows but always, ALWAYS love. Being there for one another – not necessarily daily but when needed.  Anyone in a family can attest to how messy relationships can be! And, yes, sometimes there are also unicorns, puppies and rainbows.

Advocacy. Making change, educating, helping others when they cannot help themselves. Relentless pursuit of quality care, resources, answers and a life lived to the fullest (for both the caregiver and caree). 

For the past several years, I have participated in the efforts to raise awareness and spread education about epilepsy during Epilepsy Awareness Month. You can read a few samplings and recaps of past years here, here, here and here

I asked readers what they wanted to see this year and the response was: What is the impact of epilepsy on the caregivers?  What is life like for Robert? Repeat the educational series for those who might have missed it.

In other words, Caregiving. Family. Advocacy.

Before we get into the education, the impact of caregiving and more about Robert, let’s start with a reminder of who Robert is (“Mr. Excellent” for those familiar with him). Robert describes everything as excellent at every opportunity. Whether he is in the ICU sick with pneumonia and sepsis or enjoying his Rocky Road ice cream, Robert has taught me and many others, The Magic of Excellent, (which helps when he is driving me crazy - because that is part of caregiving, too). 

Richard, Robert and I created this video earlier this year and I think it is the perfect way to kick off Epilepsy Awareness Month 2015. 

Wishing everyone a month of Excellent!

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