“coughing

Some months back, a series of TV commercials was making the rounds about a father being too sick to go to his daughter’s wedding, or a mom too sick to take her kids to soccer practice.  In these portrayals, the father would open a door to a room where the bride was waiting to walk down the aisle.  Alternatively, the mom would go to an SUV where the revved-up kids were waiting. 

The imagery of the parents was their being in PJs, a thermometer in their mouths, hair being a hot mess, and faces looking long and drawn out.  In both cases, the kids' disappointment is palpable, and mom and dad simply have to follow through.  After taking the wonder drug being pedaled, the father and mother of course follow through on their responsibilities, and all is good. Life moves on. 

While these commercials portray caricatures of families with too little time and too much to do, the analogy is apt for those of us who are care partners to those with serious maladies.  Despite one’s own ills, being a care partner really does mean that you have to keep going no matter what the situation.  

A good case in point is my adult daughter whom suffers from a life-threating seizure disorder as well as disabilities.  As mentioned in a previous blog, my wife and I are her court appointed care partners and legal guardians. We are the classic example of where care partnering found us, and we gladly take that responsibility on. 

Regrettably, she recently had a massive, multiple seizure event that required a rapid emergency medical response to our house, ambulance transport and admission to the ER, and several days in an ICU.  For about a 24-hour period, we truly did not know what would happen.  I found myself thinking that if she survived, I will never complain about her when she’s being a pain in the neck.

oil leaks

But as in the TV commercials, life does not stop.  A perfect metaphor was upon leaving the hospital to briefly go home, I noticed the brakes on my car were soft.  A check around the car found puddles of brake fluid on the ground.  This was not good. So, in between visits to the ICU, we had to take the car in for an expensive repair.  Life doesn’t stop. 

Oh, and yeah, given all of this hitting us over a few intense days, my CLL was still lurking about. Nothing major there, right? The day before my daughter’s medical event, I had my regular visit to the hematologist and got some potentially worrisome news.  I did not even have a chance to process this news.  Life doesn’t stop. 

Yesterday, the decompression that I needed from the last week finally hit.  Rather than spend time at a family event with visiting out-of-town relatives, I just needed to respectfully decline, wall off the world, and decouple completely.  No inputs, no demands, nothing and just close my eyes for a few hours.

Throughout this whole episode, my wife has been a rock.  I just don’t know how she is doing it but she continues her open water swimming, running, and yes, holding our family together during an incredibly challenging time.

Intellectually, I know that in order to be an effective care partner, I need to continue training for my health, job hunting, and try to have some fun now and again.  Like needed car repairs, you have to find a way to do these things since care partnering never stops.  However, I am constantly tired now and something always seems to crop up that gets in the way of my daily maintenance. 

“magic

As a caregiver, the reality is that the responsibility never stops.  Unfortunately, for those with cancer and other serious chronic maladies, there isn’t a magic pill like in the TV commercial.  For me, I just get up every day and lay it on the line as there simply isn’t any other option.   Every person has their own unique experience and approach.  Please share your experience as it will help others.

Thank you for reading!

Always hope. Never quit.

-           CJ Chris

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.