Thursday, September 15, 2011

May the Road Rise Up to Meet You - and Your Walker

I'm doing my best to advocate for my aging Dad  as he navigates the healthcare system. He may have reservations about becoming an epatient but he appreciates it when I advocate for him -- most of the time!

I've just returned from visiting him, now @11 months post-op and still dealing with surgical sequelae. For my own peace of mind I watched closely as he negotiated ADLs.

As was the case in 2010, I was caring for dad and simultaneously preparing for patient advocacy conferences. I am lucky and grateful to be attending both Medicine 2.0 and Health 2.0 (particularly, the Patients 2.0 prequel).

In my blog post  last year I cataloged frustrating issues in his care. I posted again after he was diagnosed with a surgical site MRSA infection, though I skirted the issue of specifically identifying him.

Now Dad sleeps and eats well, follows the news and discusses liberal politics passionately with his friends, enjoys film and theater and reading serious works of historical research on his Kindle. He also works hard at physical therapy. He has great resilience and good strength and energy. But he has been left with that nasty quality of life diminisher: limited mobility.
I'm glad I could provide some practical support for Dad like making phone calls to get a prescription refilled and driving him to both a medical appointment and a discussion group. But we have -

Bigger Issues

While I give props to Elizabeth Cohen, her mom was apparently willing to move over and let Cohen drive (so to speak). The Harrises have perhaps more complicated family dynamics and no rule book for how to sort them out. Not even family precedent, even though my mom died 20 years ago of cancer. 

We grapple with things like: 
  • How to support his independence when faced with evidence that his decisions may not be so good? (Dad has toyed with the idea of still more, probably useless but potentially harmful surgery)
  • How to interact with physicians in empowered mode / advocate for him when he isn’t willing or able to do so himself
  • How to motivate Dad to take responsibility for keeping records such as medication lists
  • How to establish roles and boundaries and still communicate our love for one another
This daughter's wish? That I could have spared him MRSA; accelerated his rehab; prevented his falls and just provided greater comfort. My experience with Dad motivates me to keep advocating for patient safety; patients' access to their records; for shared decision making and basically the whole epatient manifesto.

Moving forward we'll need to keep an eye on his creatinine, his mood, his foot drop, his balance, his cholesterol, skin and much more. After just four days together I don't know what it's like to walk in his orthopedic shoes, but I know I want to help make his path as easy as possible.


Laura said...

What a wonderful advocate you are!! I wish dad and family happiness and health. Lots of dicey issues there. I've been there.

Eesti said...

While reading this book, I felt completely pulled out of my reality and into the story. It was a moving experience. As an avid reader- I highly recommend it.