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."

Monday, August 30, 2010

our weekend update

10:30 p.m. SUNDAY NIGHT

So, there is a lot to report from the weekend.  I'm sensitive to your busy life and am so grateful you come here with free moments you have.  For most posts, I try to summarize the details and expound on the thoughts behind them.  HOWEVER....I don't think that's gonna work this time.  I've waited two days to try to let the stuccato details fade into a flow, but the additional time has done nothing but make the details seem all the more potent.  In a few months, I'll look back and wonder why the blow-by-blow....but for now, I'll just thank you for your expansiveness.

So, here goes...(all you bottom-line thinkers, brace yourselves!) 

Thursday night about midnight we get a call that dad is hemorrhaging from his catheter tube that he, in his ongoing confused state, pulled out.  (This is a very common occurence in patients with cognitive issues...pulling out cath tubes and nasal feeding tubes...but this amount of bleeding is almost unheard of.)  Although we are all hesitant to send Dad to the hospital for more medical intervention that ends up creating more questions than giving answers, Mom and I agreed without question that in this situation Dad should be transferred to the hospital immediately to try to get the bleeding stopped.  I rushed to the Veteran Home while mom, who lives a bit further away, left to meet us at the hospital. 

While the Veteran Home worked hard to get the transfer details in place, I stayed bedside with Dad.  Looking back, it's a bit bizzare that I waited gently, asking a subtle question or two and giving lotion rubs and lip balm support to pass the time.  Is this the time to be patient and passive?  Who knows.  At long last the EMTs arrived, and the transition began to appear strained.  They were concerned about his oxygen saturation (which at one point was 78% rather than the preferred 93%) and his dropping blood pressure (which at its worst was 60/20, rather than the norm of 120/80).  At one point the EMT in charge asked me if we were okay with intubation.  This created some anxiety for me, as Cheryl and Darren had worked hard with Mom on Dad's behalf just weeks before during their visit, to help create merciful advance directives.  Intubation was clearly on the list of excessive interventions.  But, I did call Mom to be sure this was still in place, that an unexpected bleed-out situation did not create an exception.  As we hesitated on the phone together, the immediate need seemed to pass and we were on to the ambulance.  I told her I'd call her back if the intubation question came up again.  I hoped it would not.

However, in the ambulance, the issue came up again as I observed the EMT seeming to struggle, again, to stabilize him.  When he asked me a second time about intubation, I called again.  Mom and I struggled together, and after a quick moment of prayer decided that this untimely emergency still was not justification to change Dad's advance directives.

Once in the ER, the Advance Directives Questions seemed to skyrocket out of control:  are we okay with blood transfusions?  laproscoptic surgery to repair tears to the urethra or bladder?  vasopressors to stabilize chronic low blood pressure?  Normally, I love demanding medical situations that require me to dissect the information carefully, integrating information from multiple sources to create a logical set of options for mom and the family to consider.  But tonight, it's all coming at me too quickly to digest.  I start to panic and as the tears begin to spill, the well-meaning, bubbly (and yes, I'd say high strung) ER nurse technician immediately slows her onslaught of questions and offers us someone to talk with, a palliative care somebody, maybe, or perhaps a chaplain?  I hesitate and then admit, it's Tim I need.  So, despite my efforts to handle things without his assistance, I quickly get him out of bed so that Mom and I do not have to negotiate these crazy-tough questions on our own.

Well, to itemize each ER happening would be space-prohibitive.  Perhaps jumping to the outcome would be best.  After 5 hours of investigative effort, the ER determines that, despite the massive blood loss, miraculously Dad's urinary tract was not torn internally.  Nor was it blocked with a blood clot (which they were expecting, as a newly placed catheter did not enable the bladder to empty).  No, there was no explanation for the spontaneous cessation of bleeding.  What they were unable to definitively answer, however, was the reason for his continued low blood pressure, despite a strong pulse.  Lab tests, among other efforts, only assured them that it was not due to blood loss.  They began to strongly suspect SEPSIS (a "horrible way to die", I felt the nurse was gently trying to intimate as she carefully stated this death path is difficult on families, and generally not preferred as it is easily prevented).  Ready to share with others the hunt to understand this "Mystery Man", they made plans to transfer him to the ICU.  At this point, as Tim was observing the details of the numbers on his machines (his blood pressure was very gradually increasing), I was beginning to get a philosophical sense that we have been given the opportunity, in some ways, to decide how Dad dies.  Or, at least how he doesn't die.  How strange!  Is bleeding out from a tube okay?  No, not if we can help it.  Is septic shock okay?  Well, not for a capable, caring ER nurse, but how about for us?  Thank God for my new data plan: it taught me about sepsis and vasopressors.  But, as always, Google had its limits.  It could not paint for me a visual picture of my pressing questions, "What does it LOOK like to die of sepsis?"

*       *        *        *         *


Tim and I just got back from an unexpected call and now I must go to bed.  So, my summarizing skills must kick in after all.  All you bottom-line thinkers, here's your reward for hanging in there with me:

The results of the ICU trip are as follows....
Dad made it through the night.  He didn't die of sepsis.  Further, our quest to remove the risk of death by tragedy (that is, to remove dad's tubes which he would likely continue to pull out) was unbelievably successful.  Instead of having to decide whether we would remove tubes that would quickly lead to Dad's direct demise, we learned that he actually has improved enough to no longer need them! Specifically, 

  • He doesn't need a catheter anymore.  (His system is now enabling him to void spontaneously.)

  • He doesn't need his i.v. anymore.  (He got enough high powered antibiotics in the ER to last anyone's lifetime.) 

  • He can swallow.  So even though we're keeping his feeding tube in place for medication management, it's not needed right now for nutrition. 
The time in the ICU gave us time to learn these new facts about Dad.  And we likely would not have learned any of these facts if the emergency had not occurred.  Pretty wild, huh. 

And while we were in the ICU, we also got to contemplate the fact that now, despite Dad's continued stamina against all odds, he is now an appropriate candidate for Hospice.  (Tubes are a no-go in Hospice; they're a dead giveaway that family is choosing the "treatment", not "comfort", route.) 

Pick a word to describe Hospice as an alternative to endless medical interventions that are no longer effective:  DELIGHTFUL.  Helping to place your Dad there?  ---- ??? ----  Still working on that one.
So, thanks to the kind and conscientious ICU doctor who answered our questions in a most unexpectedly poetic, insightful and hospitable manner, as well as our unbelievably gentle facilitator (literally the best listener I've ever met, our palliative care nurse who's been following us since Dad's seizure on July 16th), he's been at this amazing 10-bed, just-like-home inpatient Hospice facility since Friday night.  It really has been delightful to visit him in a place where we're all working together toward the same objective: peace.  And comfort for Dad.  And us.

But as I'm creating this post, we get a call that Dad is unexpectedly bleeding profusely again.  And do we want Dad to leave Hospice and go to the ER to try to stop the bleeding?  Or let him stay?  And if he goes, they say, who knows what we'll face (actually, we know).  And if he stays, tonight will likely be his final night. 

Mom, Tim and I confer together and it seems like we're learning what Dad now needs.  More peace.  So we begin to learn about the signs of pending death.  Skin color changes and breathing changes.  We look for both but neither happen.  Turns out Dad's life-death-life cycle continues, and he likely won't die tonight. 

So Mom is sleeping in his room, and Tim and I are going to bed.  We'll relieve Mom in about 6 hours. 

Oh, and I'm also going to start learning about GRIEF.  Even though I'm a therapist, I don't actually know much about it.

So....please keep Dad in your prayers today.  And feel free to START THE COMMENTS FLOWING (below)....I'd love to know what you know about grief. 

xox to all!  Thanks for the love.

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.

Thursday, August 19, 2010

new concerns

Hi family,

Wanted to let you know I saw dad yesterday and, while in some ways he was more responsive in therapy (putting more voice behind his whispers, and being a bit more alert, in small doses), the therapists were concerned because occasionally his eyes were rolling toward the back of his head, and he would "space out" for brief moments. He also intermittently had slight facial droop on the right. They were concerned that he was experiencing some new "electrical mini-storms" -- similar to some of the things they saw prior to his massive storm on July 16th (which caused his 2 days of brain death).

Mom mentioned that today they are seeing more of the same concerns...his status seems a bit unstable again. So keep him in your thoughts over the weekend! Will keep you posted.

xoxo k.

Monday, August 16, 2010

ahhh, sister love

Don't ya just LOVE sisters?!

I just got off the phone with mine.  And then checked the site here, and Mom's sister sends her love to the mix.   Great to have you here Sandi!  I will always so appreciate you and Jon for your kindness during your stay in May to help when dad fell and sustained his head injury.

So....Cheryl came through as she always does, with those signature words of wisdom which always prove to be just what's needed to grow through the next day.  And it all seems so effortless to her....what a gift.  Did I say that I just LOVEEEE my sis?!

I was prepping her for my mushy blog posts, particularly last night's where I admit to the sadness.  And how it's creating a layer of complication for balancing dad with the rest of my life.  How it's almost psyching me out.  She said she knows what I mean.  And that this is what she's been saying to herself to keep from staying in deep dark dad places in her mind:

We can't project how it is for Dad.  We're not in his brain, or in his body.  We don't know if it's as horrible for him as we see it to be.  We can't imagine it until we've lived it.  When it's our time, we may be surprised to find that this kind of time alone is an okay way to become ready for heaven.
We talked about a book series we both love, The No 1 Ladies' Detective Agency.  (Check out a cool online reading group for their summary.)  It's a simple, heartwarming story of Africa told in the voice of a traditional, proud Batswana woman, a private investigator named  Precious Ramotswe.  I love the series for so many reasons...perhaps most of all because it normalizes for me things about their country, and poverty in general, that from the outside looking in otherwise deeply sadden me.  (Like, according to her, the only floor that makes sense for a home to have is the mud floor hut of a traditional African hut.  She highlights how it cools the room, and how easy it is to keep clean.  Or how, while inconvenient, the chickens that come inside from the streets do have the benefit of breaking up the monotony of an otherwise uneventful day.  And don't get her started on her White People Monologue:  about how sorry she feels for those pasty, sickly looking people visiting from far off lands...who never seem to have enough and keep looking around like they just can't get comfortable with the facts of how life is meant to be lived in her great country.  Ok, so now -- see what I mean?! An opposing view from someone on the inside can make something awful seem kinda meant to be.) 

Anyway, Cheryl and I quickly referenced tonight Precious Ramotswe's perspective on end of life living:  how when you're old, you deserve to sit on the veranda in the bush and watch the cattle. You don't have to read, or talk, or watch children or cook or chase chickens.  Just sit and watch the cattle.  It's just right.  It's proper.  The reward for a life well lived.

On to Cheryl's genius.  She admitted that clearly dad isn't exactly in a rocking chair on a veranda drinking bush tea, but Precious does lead us to a comforting thought.  That we 40-something daughters can't know, at least not for a few decades yet, what dad is going through.  But perhaps it's not so very different from watching the cattle in Africa.  Yes, America's pasty-white version of it, to be sure, with cadillac chairs and hospital beds and feeding tubes and therapists who keep waking you up and putting you to work...but perhaps it, in its own way, is soothing and alright.

So, a context for my sadness, and a glimpse of something that's better than it seems.  Well done, sis! 

And then just when I thought we'd come to the end, she tops it all off with a reminder of eternity. That life, for all of us, ends up being just a BLINK.  And who of us can't make it through a blink.  Especially when just beyond the blink awaits Christ, in love with each of us.

Ahhh, life is good.  Did I MENTION how much I love that sis.... oh yeah, I think I did.

Maybe in honor of mine you should go find that sister of yours and give her a big smooch on the cheek.  Hyatt girls, I know you've got one or two that can't be too far out of reach!!!  (Miss you guys!!)  And Ginger, you can kiss us cousins and call it even!!

xoxoxoxoxo to each and every one of ya's,


OFFICIAL STATUS:  per mom....

* Spending time with him these past days, it is hard to know if he is improving or declining.  Not being able to understand any words he is mouthing really does make it tricky to know. 

*  No word yet on how much longer therapy will continue.  But they will have a long term care bed for dad at the facility (AZ Veteran Home) when therapy has to end.


family love

How encouraging already to hear from Aunt Gail, Uncle Mike and Brother Daniel.  So cool to feel the love.  Thank you!!  And wow, soaking up Daniel's post-within-a-comment.  Important, his acknowledgement of our individual ways of coping with life and death changes in the ones we love.  And his story within Dad's story, his experiences at Field Training, is a wonderful tribute to Dad.

If any of you were to call to ask for an update, I would only be able to tell about my efforts to set up my life so I can fully re-engage with Dad.  I haven't been to visit him since Cheryl and Darren and the kids left middle of last week.  Our last day, all of us together with him, was powerful.  Momentous.  And sad.

Seems difficult for me to know how to catch my breath from intense experiences like the ones we've all experienced together in the past weeks.  I tend to need to withdraw completely. And then jump fully in again.  Like, 110% on, 90% off, 120% in, 88% out.  A good strategy, in theory, but not very practical in the living of it.  Life doesn't like being put on indefinite hold, and sad situations get harder to re-visit as time passes.  How to jump back in?  And how deep is too deep? 

*     *     *     *     *

Today in church a phrase in one of our songs caught my attention:  "if grace is an ocean, we're all sinking."  (How He Loves by David Crowder)

A rather negative image of God's grace, I gotta say -- the sinking part, at least.  (It's the only thing not to love about the ocean, other than the sharks and the jellyfish.)  But it does create a picture of the bigness of His grace, and the inescapable-ness of it all.

Which got me thinking.  Maybe the reason the sadness is so hard to deal with when I do take my breaks is because I am stepping out of the way of the waves.  Shifting gears, and keeping life's other responsibilities nurtured, is crucial.  But so is facing the heartache, head on.  Maybe it's where God's grace can best be found. was all about setting up the logistics of my life so I can be sure to get in and soak up my Dad.  I'll keep in mind that whole ocean of grace thing as I get ready to go.


I anticipate a medical update for you guys on Wednesday or Friday.


xoxo to all!!!

Thursday, August 12, 2010


I'm so glad you've come.  My dad is an amazing man, and his life has taken some unbelievable turns as of late.  It's been almost all I can do to absorb it all, and initiate a few texts to update people I already dialog with on a regular basis.  And of course, (my all time fav!), answer any calls or texts that come my way. 

Well the other day, I received a delightful call from my Uncle Karl.  He took time to absorb all my updates, and then gave much needed thoughtful encouragement and TLC.  As we concluded our conversation, he said that he would love ongoing updates.  I asked him what format works best for him (I know not everyone is addicted to texting like I am!).  He said he really appreciated his sister's daily emails when she was here for a visit several weeks ago. 

Kinda took me by surprise...Uncle Karl wanting this format.  Gail's visit was during a most unbelievable time in Dad's life/death/life journey, and I was with Gail in the same room as she composed several of her emails.  She was quite honest -- vulnerable really (this coming from me, a girl whose "personal-privacy" meter is set on ultra-high!).  I couldn't imagine doing it myself but was glad she had found herself reaching out so easily to her larger support systems.

But now here was someone asking me to fill her shoes!  Intimidated by the idea, I quickly came back to the conversation at hand. It was my Uncle KARL on the other line.  Logical, efficient Karl (traits we Bruces are known and loved for) -- not one of my therapist friends!  Rather than self-debate further, I asked straight out: "So...what did you like about Gail's emails?"

I thought he'd say something about the fact that they arrived daily. Or that email is faster than phone calls  (that logic and efficiency thing again).  But to my surprise, my aunt's personalization, that fact that she shared a piece of her soul, was really what he valued most. It gave him a way to live within her experience. And it strengthened his sense of family. Of spiritual community.

Well. Ok.  I'd give it a go.  But 10 days passed, and no emails. Why can't I get to something so important?  Don't think it's my privacy issues...while I have continued on my mostly solo path (beyond Mom, Tim and my  siblings), I am working hard to expand outside of my immediate bubble. I do believe what Uncle Karl said, that we need a community to come alongside us as we struggle through some of life's hardest gifts. Must be the email thing, as this is my second weakest link (returning voicemails is my first).

But the idea of has gradually dawned on me that I know a lot about this, at least in the online dimension.  My recent philospophical understanding of social networking, and my deep appreciation of it, is thanks to our amazing nephew Patrick and neice Amy (who just spent a wonderful year with us at our business, catching us up to the wonders of current day technology--admidst a ton of fun).  I realized that the format Uncle Karl would like is a lot like, well, a blog.

And I can do blogs. In fact, my brother Daniel and I spent all summer figuring them out. ( is the happy fruit of our labor.) I love the blog way! You get to write it the way that you see it. You take a situation and fill the telling of it completely full of interpretations, impressions, insights. It's not about the facts of the matter, really -- although I'm the first to admit that a well-crafted fact or two doesn't hurt a post much at all.

The idea of sharing the details of my dad's situation in this style caught my attention. Being able to place my spin on things would soften the sting of the straight up, cold cruel facts. Certainly for the teller, hopefully for the reader.  So, a simple question to brother Daniel tonight -- "Is it easy to set up a Dad Blog?" -- and my problem is solved. (For Daniel, it's all easy. The hard part is getting me up to speed on what just happened.)

Ok, Uncle, so here it is.  My best attempt to provide dad updates from my heart.  I'll take the plunge, for family.  Love you lots...and thanks for asking.  And, of course, for calling.

Love to all!!!


p.s.  apparently, this is harder than i thought!  As I preview the post, I see that I am stalling on my official update.  A few facts, please.  But -- where to begin?  Truly I find it difficult to put into words my personal sense of what is happening with dad. 

So I'll pretend, Uncle, that you are asking me questions.  We'll start with the facts:

* Several days ago dad was transferred back to the Arizona Veteran Home.  This is the place dad left several weeks ago when his massive "electrical storm" hit. (Was it really just a massive grand mal seizure?  A single seizure, even a grand mal, is not known to create damage like this.)

* Dad was supposed to go to Hospice, but during the several days it took to prepare for the transition, his status improved so that he was no longer appropriate. Again, very unexpected.  (One of those days, I was talking to him after PT and OT had transferred him into a reclining hospital-bed chair.  The palliative care --end of life -- nurse came by to check on him and I saw a near-concealed look of shock pass over her face.  She leaned toward him and said quietly, "You ARE the Mystery Man.")  I just smiled.

*  Surprisingly, dad has been authorized for therapy: Physical, Occupational and Speech.  They are working VERY hard to maximize his functional capacity, but are not sure how long they will be able to justify therapy.  Why surprisingly?  Because normally people who are at his low level don't receive therapy.  Why "not sure"? Because people at his level coming into subacute therapy usually "peak out" their potential rather quickly.  And also because, with dad, we have learned to expect the unexpected.

Will save my sense of it all for another time.  Must go for now  Again, xox to all.