HOW OUR BLOG BEGAN, in AUGUST 2010: As many of you know, Phil has been struggling with a very complex series of neurological issues for about 5 years. This past spring, the issues became especially intense as a result of an unexpected cognitive decline and a fall on May 15th that resulted in a head injury and further decline. And then, on July 16th things catapulted to unbelievable, as Phil suffered from a severe "electrical storm" in his brain that essentially created a status of brain death for two full days. Inexplicably, the very morning that neurologists and other medical team members were planning removal of life support, Phil began breathing on his own and his brain waves returned to a stable, while still abnormal, level. Since then, each day has been a unique journey. And while he and his body continue to demonstrate a will and capacity to live, he continues to have severe deficits and it is quite uncertain as to the path he will take. As loved ones close in can attest to, it has been tricky to keep up emotionally with all of his changes, and provide the needed support. We can only imagine the hard work Phil has gone through as his brain has taken him through such roller coaster experiences. It is our goal here to keep family and close friends apprised of Phil's ongoing story, and to build connections that honor him.

AND THEN, SEPTEMBER 11, 2010....Dad's remarkable journey alongside us culminated in a gentle, generous death.

And so, my goal here now as his daughter is simply this: to record snippets...pieces of his life that my memory offers back to me, pieces of myself as I learn to live without a dad. I hope all who meander by find life, and hope, and peace.

Tuesday, August 24, 2010

awful doesn't really feel so bad

Sister Cheryl reports a new state of affairs. 

It was pretty cool to visit with her tonight, and get a totally different picture than what I gathered this morning when I popped in to see Dad on my way to a work commitment.  And different than Mom's full update for me over the weekend.  Finding out what's happening one mile north of my house from a sister who lives 1,724 miles away is just....well cool.

Sometimes I think the way Dad's days have been unfolding of late must be even more surreal for Cheryl and Jonathan and Daniel.  They love him just the same, but get just bits and pieces, here and there, snippets, that must create a sense of disbelief. 

So let me update you with the weekend's turn of events from Cheryl's side of the hospital bed.  It's a bit more consise, and equally amazing.

(ok, it's Karen semi-quoting Cheryl)

FRIDAY NIGHT, 11 PM  I speak with mom and Karen, who with Tim have been in Dad's room for the last 3 hours.  Two of these, he spent in a complete comatose state...

Tim and Karen come by to say goodnight around 8:00 pm.  After a blurry-eyed few moments, Dad closes his eyes and then becomes completely unresponsive.  Mom is alerted and she drives to meet them.  Together they watch as dad's status continues, unchanged.  Other than breathing, his body does not move or shift in the slightest, and they are unable to awaken him or create any kind of a neurological response, even with loud voices and painful stimuli.  (Thanks to dad's week in the ICU, we all know how to simulate the basic bedside neurology exam.  For example, we learned the best way to elicit a response is to press hard into the base of the nailbed with a nearly sharp object, like the back of a pair of surgical scissors.  So "pain" is a relative term in the neurology world.)  Anyway, his status is at the very bottom of a coma scale, with no observable medical changes other than a fever.  Then, after two hours, his status improves slightly...he is now spontaneously opening his eyes, makes a partial attempt to look toward their voices when they speak, and his body begins to move voluntarily again (but not in response to commands).  They are calling to let me know that it appears his brain is "storming" again, and that this weekend might be the days that dad wraps up life.  We all are "on call" for any further declines.

MONDAY AFTERNOON:  I check in with Mom, and she is spending the afternoon with Dad.  Mom hands the phone to Dad, and with his voice at FULL VOLUME, he formulates short sentences and tells me the things on his mind.  His voice is slurry, but animated; his thoughts are complete but very random.  All of a sudden, I have this recollection of a phone call I had with him when he was in rehab back in May: where he was disoriented, with confused thoughts, but was fully intelligible.  In both instances, it's not really possible to talk him through his confusion. 

WOW.  Friday, he appears to be at a near "brain death" level again...just like he was when his massive brain storm hit on July 16th.   But then on Monday, he is carrying on a full conversation...just like he was after his brain injury from his fall on May 15th.  This is after weeks of not being able to hear anything but chance single whispered words, or see nods to yes/no questions.  HOW WONDERFUL to hear his voice, after all this time!  And how very unexpected. 

And yet, within these massive changes, it appears his overall thought processes are unchanged; he is still very confused and concerned about things that he can't make sense of.  It is difficult to console him or help him walk though simple information using rational lines of thought.  All these weeks, it has been difficult not to know what is going though his mind.  Well, now that he has voice projection, we know.  And this is difficult too. 
There's two ways to look at it, I guess: first, heartwrenching, and worse, to see his confusion out in the open and unchangeable.  Second, still heartwrenching, but better, to know the truth about what is on his mind.  For me, I guess if I could choose for dad, I would choose the second option.  I feel some consolation that he, for the time at least, is able to voice his concerns.  I imagine that this must help him cope with his confusion, to be able to verbalize his concerns, and feel the love of others in response.


That's a theory I ascribe to, now more than ever.  The outpouring of concern from long-time friends, both near and far...from my childhood friend Tammy and Tim's dear friends Doug and Deb (33 years but who's counting?),  to OT classmates of 16 years ago, Kristin and Michele, and longtime Arcadia family Rachael, Erica, Patty, Emily, and Ulisses, to Cheryl's lifelong dear friends Sherrie and family who continues to keep the memory of Dad's full life in their hearts...

You are all so encouraging to us!  THANK YOU for sharing in our days, our updates, this blog.  Knowing we do not have to absorb dad's story alone is truly a gift that gives to us more than you could ever imagine.


  1. Thank you for this update. I will give your mom a call this week. LOVE YOU, Gail


    Thinking of you, Tim and your family. This journey has to be so difficult, I just don't even want to let myself "go there." The blog is such a wonderful way to keep close with all the people involved with your dad. Take care. xxoo Patty


    thanks for the warm thoughts, patty! i remember you taking the time to get to know him one day in the office and helping us understand some of his speech needs. amazing to go through the hospice process as a therapist daughter. feel like it's adding so much to my repertoire of experiences that will help me in my therapy world as well as my personal life. thanks for following along in the blog.

    hope all is well for you and your family!

    xox k.