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.

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.


  1. So after going outside to turn off my pool pump and making myself some oatmeal, the tears have slowed enough for me to see my computer screen again!

    Grief? Isn't grief crazy? I'm a crier (and a comfort-eater, but that's another day.) I am super empathetic and my mind always makes my own personal connections when a friend or loved one of mine is going through an end-of-life journey with a family member (but I'm the kind of crier that personally connects to car insurance commercials, too.) I cry all the time. In "these situations" I always think of my grandpa, who was around your dad's, age when he passed (the day before his 69th birthday.) I wish blogging was around in 1994. His would have gone on for years.

    I have also started to grieve my own father, who is alive, working, etc., but very unhealthy. I wonder how long God will let him be here? I pray he will hang out for a while, but who know? Lifestyle catches up with us.

    Anyway, grief. I like to cry. I like to look at old pictures. I like to hear those songs on the radio, even seek out meaning in songs totally unrelated, that bring about the tears. It's a good release for me. I'm not productive in grief. I don't clean excessively or bury myself in work. I don't want to comfort anyone. I usually want to cry and be snuggled. Sometimes I get mad, and this aggression sort of takes over my insides and I take it out on everyone around me, or I think about doing so. Usually Mike bears the brunt of it. God BLESS the husbands of emotional, hormonal wives.

    I don't have anything articulate or inspiring to say, but I love you, Karen! Thank you for sharing this special and difficult thing you are going through. I wish you, your dad, and all of your family all of God's blessings in whatever form you need from Him as you go through this.

  2. Grief is such a personal thing, felt at different times, at different stages. It is impossible to ever prepare for the process, but my prayer for you and your family is that during your deepest moments of grief, you will also find peace, comfort and maybe even a smile when reflecting on the precious memories of your dad. Your blog is a beautiful way to honor your dad and unite your loved ones through this very difficult time. Thank you for sharing your dad's story. I am praying for you, your dad and your family.

  3. Karen, we went through something similar last summer when we nearly lost Randy's mom. It lasted for 70 days and we all became physically, mentally and emotionally exhausted, only being told that there was nothing they could do for her and that her body just had to heal itself. There was a lot of heart wrenching prayer as we waited the first few days in the emergency. We knew the doctors were doing all they could but we all felt so helpless. We knew that the outcome was up to God. God decided it wasn't her time, but for so long we didn't know what the outcome would be. We grieve for now with you, but your dad's future will be eternity with God and he won't have pain or confusion any more. What you are going through as a family is the hardest part of it all...but know that you are being carried in love and prayers.

  4. Thank for your love and prayers!

    Randy and Tracy - how cool to know that you understand the unique demands of an extended illness.

    Becky - I'm glad to hear you say that you can never prepare for the process. It takes a lot of pressure off me to do a bunch of work in advance. (I'd rather just focus on enjoying the parts of Dad that are still with us.)

    Karli - I love hearing your heart! I could hear you talking in what you wrote. Oh, and do you have any songs you recommend?


  5. Well, for me, every time I hear "Somewhere Over the Rainbow" or "You are my Sunshine" it's all over. The list is long. I'll try to compile one for ya :-)

  6. ahhh, gotta love the sunshine song. would love a karli compilation! thanks for coming to see dad tomorrow...means more than you know!!

  7. After catching up with mom last night and purusing the awesome blog work Karen's been creating, I feel I'm coming up to speed with the situations occuring a couple hours to the south.

    Grief... definitely seems to be a dynamic process... there really isn't anything linear about it. Sorry, I'm already two days into school... working on an exponential regression graph for the process of familial loss... will let you know how that comes along.

    Anyways, I was sitting in my first Mechanical Engineering class this morning as the professor told of his years of experience as an officer in the Air Force, industrial consulting, and presented interested class members with the opportunity of joining a group to design a model aircraft that would compete against other engineering schools' designs. He asked us, before we left class for the day, to type out a brief paragraph describing a little about us and why we wanted to pursue engineering. Right off the bat, I felt the need to boast a little about my dad and grandpa and how it seeems they really infused in me the desire to figure out how things work and better the world around us by designing and problem solving. Maybe there are other major reasons beyond my dad's influence as to why I'm sooo drawn to numbers, formulas, and the "Mythbuster's Philosophy on Life". But with hospice as dad's new home, the loss of someone to take my homework to for solving, or a new shape of a wing for aeronautical analysis, I definitely feel the pangs of grief a little differently than I did a week or two ago.

    Back to that exponential graph of the grieving process... sorry I'm can't leave it alone quite yet. I don't know what it looks like exactly... definitely looks different for each person, the slope of the line is constantly changing over time. Maybe within a couple weeks, Calculus 1 will give me the trick for formulating the equation...

    ...I kinda doubt it

  8. Great comments!

    Jonathan, I especially connected with you on the Dad|Homework thing. One of the treasured memories of Dad that I will always have are of the times Cheryl and I came 'home' from College (to Bowling Air Force Base). Of course we would have piles of homework, and we were always confident we could get all the answers we needed for our Physics or Calc classes from good 'ol Dad ("Col. Bruce" to me back then! :-). Dad was amazing - and gracious with us - and just took one glance at the problem and he could work the answer immediately. Kinda weird how he remembered all that stuff - I forgot as soon as I got back to the Dorm . . . I think he would have been proud of your studies - and would have loved to help you, as he did so graciously with us.

    I remember too the personal tour I got from him (and Grandpa too if you can believe it!) of the Wright Patterson Air Force Museum. Imagine that - two fly boys who flew just about every plane in the museum at one time or another giving this ground-loving Canadian a doctorate level tour of aviation (and jet propulsion . . . and aeronautical engineering . . . and). Well, It was amazing. Look at planes in a whole new way to this very day. Can even pretend to know a bit about them too when my eight year old son asks a question about his favourite bomber.

    Anyway, its been a long time since those days of doing homework at my future in-laws place - but I remember enough about calculus to know that you're right: it likely won't give us the trick for formulating the grief equation. i suspect only God and His Word will accomplish that. And heaven will sure be sweet, if only because we won't need to contemplate it at all - won't that be fantastic!

    God Bless,

  9. Jonathan - I have had the exact same feelings as I have been going to school. Especially with AFROTC ... alot of pride in Dad and Grandpa's careers. I guess when it really comes down to it, part of the reason I am going the route I am is because of their influence in my life.


    Tammy Underwood-Jennings (September 9, 5:50am)

    Yes, I've gone through the death process with both of Jack's parents now. His mother died from breast cancer 11 years ago. I never thought in a million years that I would tell someone to let go. It goes against every fiber of my selfish being because I didn't want to have to let them go or to say goodbye or for my girls to have to grow up without their grandparents. But, as we know, it is actually a very big act of love to let them know that you are going to be fine and that it's alright for them to go be their Father where they will no longer be in pain or have to suffer.

    I wish I could wrap my arms around you because the emotions are still very much real for me and I know what it's like when the Lord decides to take them home. You are probably just concerned with taking care of your dad and making sure that he is comfortable right now but at some point your grieving will come, Karen. Just remember that our Lord is bigger than the grief and that He does bring healing to our hearts. And He actually imparts joy when we are able to get past the grief and think about our loved ones walking around the streets of gold with their brand new healthy bodies. Can't you just see it?!

    I appreciate you including me in your updates of your dad. And just know that you will continue to be in my prayers.

    Love, Tammy