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 31, 2010

a great day for seeing more of dad

Today was wonderful.  I have to admit, I'd really prefer not to say goodbye to Dad just yet.

8:00 am
Tim takes a call from Uncle Loren.  A special family member to me from my earliest memories, Loren has been my mentor in all things "counseling" my whole life.  So, it always feels like a privilege to both Tim and me when we are the recipients of his tactful, generous TLC.

10:00 am
Tim goes to the Ryan House and learns that Dad had a good night.  His blood pressure is much better but nowhere near normal. 

11:30 am
I go to see Dad with Emily and Ulisses (our faithful Office Gang).  He is awake but not very alert, and his interaction is limited.  His color, Emily and I decide, is very yellow...whereas before, when she saw him at the Veteran Home, he was a bit more grey.  He seems to be at a whisper level again.  I realize I loved hearing his voice and will miss it again.  His nurse says it does not appear that he will die this afternoon, so I decide to go to a work commitment in an effort to be reliable.  I hope to minimize my time away from my Dad.

4:00 pm
I return to the Ryan House.  My work responsibilities were most kindly taken on by others. (Thank you, thank you Sharon and Brian!  You are so good to me...far beyond what I could ever expect.)  Dad is more stable than he was mid-morning.  His systolic blood pressure (the top number; 120 is normal) is now in the 90's, still not completely normal but now not keeping him from returning to his pre-second-bleed status (that is, before last night).

4:30 pm
I go to the hospital to drop off a thank you note that mom and I prepared for our ICU physician who so graciously assisted in our transfer to this dream home.  On my way, I run into Melissa, an OT who stands out to me as our best-ever teacher: she was patient, friendly and thorough as she and a PT (also top-notch) taught Tim, Mom and me how to transfer Dad from supine (laying on his back) to EOB (that's "edge of bed") and challenge his sitting balance -- a process that even if you're an expert (which they are) takes 2.  They let us practice multiple times; it's not easy to coordinate the actions of 3 intermediates (that's us)!  I thank her for her investment on our behalf, and let her know what a difference it made for me.  (I was struggling with a lack of knowledge in an area that I have always been weak in, mobilizing what we call "heavy transfers".)  As I navigate the halls to and from the ICU, I contemplate gratitude.  We have so many professionals to be grateful for; how could we begin to list them all!  From Christina, the SLP who started us off with such warmth and positivity at Good Sam back in May, all the way to today's nursing staff at the Ryan House, we've just been so fortunate. I wish that in thanking each of them as we encounter their support, we could somehow let them know how their part in Dad's story changes us.

5:00 - 7:45 pm
I get to hang out at the Ryan House.  Just what I daydreamed about as I had hoped for this placement in weeks past.  (Alas, despite two planned transfers here, the first when he was in near-brain death status and the second upon leaving St. Joe's after his plasma phoresis, literally just scant hours before the pickup van came, Dad's status was deemed "unexpectedly improved" beyond the bounds of this facility.  Flexibility that even I did not possess was required to navigate these losses.  But, now it all fits together in my heart and mind, as clearly this is the appropriate time for Dad and his family to be here.)  Emily comes by, visits briefly with Dad and notes his great skin tone and color! (She's always been good with hair and skin -- so I trust her on this one!)  We get to do some Arcadia work together while in the living room.  Mom and I do practical planning for mortuary selection.  This leads us to ask the staff about how to set up an autopsy.  And I get to ask Brenden, his nurse, some helpful "post-mortem" questions (having a chance to create that visual picture, even in death, seems to really set my mind at ease).

7:45 - 10:30 pm
My precious friend Erica comes by and together we have a delightful time with Dad.  If you could hear her laugh, you would have a very clear sense as to why delightful is the only word to describe it.  Dad is feeling much stronger, his voice is functional.  She helps to navigate Dad's themes that emerge despite his aphasia (word finding difficulty) and underlying dementia-like process, two complicating factors that make relating with him quite tricky.  And, here we discover Erica has a precise skill: capturing pieces of who Dad is by what he isn't exactly saying.  What FUN!  Like, he's eating pudding and he says "these guys did a great job."  I'm thinking who (the guys), what (the job)...well maybe the pudding makers.  Now what should I say about the pudding makers, yes to honor their efforts but more, to help Dad know I'm with him?  And, while I'm going through this laborious process, Erica has breezed through the thought process: "let's see...Phil is an engineer, so must be...the SPOON!  She says, hey the spoon?  And since Dad (intermittently) understands what is said to him, before I've finished with the "what" of it all, is happily giggling with Erica about her score of a guess.  I can't tell you how special it is to share the beauty, and the struggle, of my Dad with Erica tonight.

SOOO...Tomorrow is another work-Dad mix.  I hope this lasts forever.

xoxox and thanks for being here,

P.S. Thought of the word that best describes for me what it's like to place your dad in hospice:  DAUNTING.

P.P.S.  Feel free, my dearest friends and family, to give me your thoughts on that phrase that just slipped out a moment ago: "I hope this lasts forever."


  1. Karen, how special it is to read about your journey and all you are learning, both about medical protocols and about yourself. You have such an amazing ministry ahead of you with people you have not even yet met who will be strengthened by what you have learned on this path.

    I'm so glad you had the blessing of today with Uncle Phil. I completely understand how you could hope this lasts forever. When it changes, there may be a new normal for you -- a daily life that goes on with a piece of you missing. But now your dad is here, like he's always been, and your family is still whole... complete. And though the circumstances may be different from the past, you can still see your dad and feel him and talk to him like always before. I can see how you would hope it lasts forever.

    I miss seeing you. Please know that you all are in our thoughts and prayers...

  2. Hello cousin Laura! How wonderful to hear from you. Yes, seems very strange to wish for permanency at this level of Dad's journey. I can imagine how family can begin to contemplate that death is better for their loved one than deep impairment. But somehow I don't think we are there yet. Thank you for understanding this place.

    I hope you, James and the kids are doing well. Would be great to visit together! If not before Dad's passing, then most hopefully at his services. Much love!