The End of One Journey…. The Beginning of Another

This was not the outcome we had so deeply hoped and prayed for throughout the past year.  We were supposed to have more time together, we were supposed to celebrate the holidays, we were supposed to have more time to share our love and make more memories.

Sadly, our journey ended on Monday, November 19^th at 10:15 as dad departed his earthly home and entered our Lord’s presence.  That day will be eternally etched in my memory.  My heart was broken that morning as a piece of it went with my dad….only to be completed when we meet once again in heaven.   It was indeed a bittersweet moment we experienced that morning to be with him as his suffering ended.  I had hoped for a final moment of clarity that would allow us recognition that he heard our final good-byes but that was not to be.  Instead I take some comfort in the fact that my dad was surrounded and held by all of his ‘girls’ as he drew his last breath as the pastor prayed.  There is no doubt in my mind that he knew he was loved beyond measure by his family. 

We were overwhelmed with the outpouring of love, prayers, food, and flowers as people received news of his passing.  Dad would have been honored to know that he was loved by so many as was evidenced in the number of friends and family from near and far that attended his service.  I was touched by each and every person who came to show their love and respect for him as well as our family.  Despite best efforts I wasn’t able to spend as much time with everyone as I would have liked but I cherished the time I had with everyone and the memories that were shared with me of my dad.  It was another bittersweet day…. Gorgeous day with family and friends, but brought together by the saddest of circumstances.

Now our new journey begins….the journey of continuing on with our lives without our beloved father, husband and grandfather.  We will begin a new walk of faith---waiting and believing that we will be reunited with him some day.  In the meantime we will move through these next days much the same as we have the past year taking one day at a time, cherishing each day and praying for each other.  Only time will help to lessen the great sorrow we feel.  The very memories that bring happiness are also the ones that will bring sadness and tears…his empty chair next to mine at Sunday dinners, the phone calls at work just to say hello or needing tech support and perhaps most of all coming through the back gate and not finding him sitting on his beloved patio.  I would like to think that he has his own personal patio in Heaven where he can sit and enjoy the view and continue to watch over us as we journey on.

Meanwhile I am ever so grateful for the love and support of family and friends which traveled with us on this journey and continues on to this day. 

Other things may change us, but we start and end with family.   ~Anthony Brandt



My dad, my hero...I'll always love you!



Bringing Daddy Home… (by Julie & Amy)

If you are a follower of our blogs, you know that we had some decisions to make this week. Those decisions have been made and we are bringing Dad home from Rehab.  We will be caring for him at home with the assistance of Hospice.  We feel strongly that being at home is what will be best not only for Dad but for all of us as a family.  Home is where we have done our living, celebrating holidays and good times and home is where our hearts lie. 

As we sat as a family and listened to the Hospice nurse share information and answer questions it became quite clear to her that while we were choosing Hospice we were not choosing to give up HOPE.   Hope has been at the center of this battle from day one.  It seems that Aaron Shust’s “My Hope Is In You” was on the radio a lot during those early weeks and we both clung to lyrics. He is our refuge.  He gives us HOPE.  Take the “sic” out of Hospice and you get Hope.  How cool is that?  

The timing of dad’s homecoming is especially appropriate and gives us yet another reason to be thankful this Thanksgiving holiday.

We are blessed by the friends and family that have provided support throughout our journey.    A verse that has appeared in a previous blog is fitting for today…”Rejoice in hope, endure in suffering, and persist in prayer.” Romans 12:12 

So while we move forward, please continue your prayers and rejoice with us in hope!

                                                               Thanksgiving 2011

Decision 2012...not talking politics here...

It’s been a year filled with decisions, and I’m not referring to the recent Presidential election.  If you thought this post was going to be about politics sorry to disappoint.    I’ve had pretty much zero interest this year.  Sorry, sad maybe but it's true.

So let’s start with a vocabulary lesson from the infamous Webster’s shall we?

Decision – The act of deciding; a judgment or conclusion reached by deciding.

Decide – To settle; to determine, as a controversy or contest, to determine the conclusion or issue of; to make up one’s mind.

Some decisions are made so quickly and easily that we have to give very little thought to the question at hand.  Some decisions are no brainers…pardon the pun.  Example: ’would you like fries with that?’  Other decisions can pose more of a challenge….What to wear?  What classes to take? Where to go on vacation?    Then there are those difficult ones...the more thought provoking and consequential decisions…the life-changing ones.

Our family was encouraged to consider making one of these decisions last week.   I’ve known families who have had to make this kind of decision.  I would never wish for anyone to have to consider making this decision.  This is a heavy burden to carry for family members.

Expecting it or not, hearing the words come spilling out of a doctor is very surreal.

Let me set the stage for you.  After spending the night with dad last week and going on 27 hours with no sleep, I was unpleasantly surprised by a visit from one of dad’s rehab doctors.  He introduced himself as a doctor that practices general medicine but is also certified in palliative/hospice care.  Having worked for a Home Health agency for many years I am acutely aware of the philosophy of Hospice.  It is comfort care for end of life. Needless to say his introduction did nothing to soothe my soul that early morning.  Alone with my dad, and the two aides whose impeccable timing found them finally coming to assist with bed changes, I had to force myself to focus on the words the doctor was speaking.

The conversation went something like this… ‘I think the time may be coming that you and your family may need to discuss future long term care….blah, blah, blah, it’s ok to hope for the best but to prepare for the worst….blah, blah, blah’, you will want to honor his wishes…blah, blah, blah.    All the while I am trying to watch dad from the corner of my eye to see if he is listening, hearing, comprehending any or all of this.  Maybe the timing of the aides was impeccable after all, I believe he was too distracted to hear or understand what the doctor was saying.  I will give him some credit. He seemed like a compassionate man, taking the time to listen to me and answer my questions but I would love to give him some pointers.  First, when delivering that kind of message it might be best to see if other family members might need to be available.  Second, refrain from using the quality of life vs. quantity of life more than once in your conversation.  I get it.  We get it.  We always have.  We want QUALITY. 

So it has come to this.  Of all the decisions that had to be made during the course of dad’s treatment…chemo, radiation, more chemo, stopping chemo, decisions that we all trusted the doctors when making we are now faced with making the toughest decision of all.   We are making decision to effectively care for him without ‘treatment’.   We all agree that we want him home.  Hospice or not, he belongs at home.  The changes and improvement hoped for are just not surfacing.  Time may be our only ally.  During that time, we want him home.

It is hard not to look back and let the mind rifle back through all of the crucial what if’s, if only’s, should have’s, could have’s and second guess or even try to justify the medical decisions that were made.  Would the outcomes have been the same?  Were we destined to be on this road all along?  Did we just prolong the trip?  Did we follow the wrong map?    I have found that these questions and thoughts serve no purpose now.  No matter the original intended destination we are where we are. 

So we move forward one day at a time with hope, faith and family intact.  Our love for each other and your prayers and well wishes get us through each day!

  Thank the Lord because he is good.  His love continues forever.   ~Psalm 106:1

Unhappy Anniversary

It’s almost here…November 4^th.    It’s almost been a year.  We are nowhere near where we had hoped we would be by now.  There have been highs and lows over the last 12 months.  We’ve conquered some challenges and succumbed to others.  There have been victories and celebrations but there have also been set-backs.   Why dear God do we find ourselves at this place now?  It seems this journey has taken yet another detour.  I wish it was as simple as checking a map to get our bearing and find the right directions to take.  Most days I just feel lost. 

Dad has had a major set-back.  After yet another fall he was taken to Harris ER for medical attention.  I knew in my heart that he would be admitted and he would not be coming back home that day.  His health had declined too much over the last few weeks and his refusal to eat but a few bites a day did not help the situation.  I can’t begin to explain the frustration of watching a loved one disappear before your eyes.  We have encouraged, urged, demanded, insisted, begged, bribed and cried trying to reason with him that he had to eat and even drink.  Well meaning suggestions from friends and family regarding what we could give him began to frustrate me further.  For anyone to think that we have not tried everything…and I do mean everything… to get nourishment in his body, well then you simply do not know my mother, sister or me.    And while nutrition plays a significant role in the condition he is now in it is not the only culprit. 

Admission to the hospital opened the gates for numerous tests, labs and doctors to shed some light on his case.  After learning very recently that dad had indeed suffered at least two strokes,we now also know that he has a moderate case of Encephalopothy.  Bottom line there is damage to his brain.  After a quick ‘Google’ session we see that it certainly explains some of the symptoms dad has exhibited as of late.  P.S.  I wouldn’t  recommend that people seek medical treatment/advice via Internet…it’s kind of scary actually.    Cancer, Chemo , Radiation, one or all three combined, have contributed to his plight.  The nutrition is not going to ‘fix’ it.  Time will.  Maybe. 

So in the course of a week we have watched dad withdraw even further.    

Confined to a bed without freedom to stand or walk. 

Confused about many things.

Transferred to a skilled nursing facility very close to home, allowing mom time to rest but also be at his side when needed.  This stay will hopefully rehab his body.  I wonder though, can they rehab his mind?   Can he remember that the ‘women’ who are nagging him to eat and telling him what to do all the time are the same ‘women’ who want him well and want him at home?   

At least for a moment last night I felt like he really knew me and was having a clear moment...His 'love you too babe' as I left for the night gave me a surge of hope.

Still I I fear we are on a slippery slope. 

So there is nothing happy about this upcoming anniversary. 

Cue the sad music…cut to the credits.  I want my happy ending!  I want our journey, our story to be neatly wrapped up with a big happy bow put on top.   I want our normal life back.

And as I type this I notice today’s verse on my desk calendar:

Everyone who asks will receive.  Everyone who searches will find.  Matthew 7:8

Hear me God...I'm asking....I'm searching...

Seems like we've been here before.....

I am much too familiar with this hospital.....

We are back at Harris Methodist Ft. Worth.

Dad had another fall last night/early morning.  Due to the number of falls and his current condition the Home Health nurse instructed mom to call 911 the next time he fell.  Well that time came this morning. I got the call from mom just before leaving for work.  Fortunately I made it to her house before the ambulance left and we were able to follow them to the hospital. 

Emergency Room...been here before.  Two times before.  We were assigned he same ER doctor he had 6 1/2 years ago.  I know you are wondering how I could remember  such a thing.  You are probably thinking wow Julie what a memory. Yes, it's true. I am like an elephant...in size and memory.  Anyway, I will never forget the ER trip he had 6 1/2 years ago or the cocky ER doctor who showed little concern for our situation.   Dr. C (I'll protect the guilty by not using his full name) told us then that it was very unlikely dad would be leaving the hospital alive. Well he was wrong.   I've always dreamed of waltzing dad back through ER to prove him wrong.  But I have to admit that Dr. C had a much better bedside manner this time.  He listened to us and seemed to show genuine concern and compassion. It was a far better experience with him this time.

So after many hours in the ER watching patients come and go we are thankful that he is getting the care he needs. We are fortunate.  One CT scan and many labs later he has been admitted. The scan showed no signs of stroke or bleeding in the brain.  There are however other causes for concern. While I know he doesn't like hospital stays I am ok with this one.  He will be getting some much needed hydration.  They will also be monitoring kidney function, blood sugar, nutrition, etc.  

We are now in a room...finally. In the same building as his last several hospital stays.  Same smell to the building, same layout as the previous floors, same uncomfortable chairs in the room.  On a good note he is getting the same good care.  Some things never change.

Life will never be the same though.  We will all be changed by the events of this last year.  Someone very close to me shared with today that we grow and are changed by every day that we live.  Maybe it's the wisdom that comes with each new day that prepares us to deal with the future.  It could also be past experiences that have matured us and readied us to deal with our new circumstances.

While conventional wisdom may suggest otherwise, I will not lose hope that dad will completely recover.  My faith will not be diminished by doctors predictions.  I will cherish each day and each memory.  I will love him with all the love that my heart holds. 

Today he knows me as Julie Roxann, tomorrow it may be the water girl or 'that other blonde girl', but for today he knows me.  He knows me, he knows who I am and he knows that I love him. 

Live~Laugh~Love....exactly what I intend to do!



  

Don't sweat the small stuff.....

How many times have I heard, or even used, the phrase 'Don't sweat the small stuff'?  Now in addition to not sweating the small stuff I am also trying to appreciate the little things each day brings. 

Life has changed pretty dramatically over the last few months and everyone in the family has had to adapt.  Thank goodness for great husbands and kiddos who are willing to pitch in and help when needed--often without being asked-- to keep things running smoothly!

So instead of sweating the fact that my house has not had a proper cleaning in many months,  I am appreciating that my guys are doing a better job of keeping things picked up and even doing laundry!

I'm no longer sweating the fact that my scale is yelling angry things at me when I dare to step on it these days--which happens pretty infrequently due to my fear of watching the growing number.  That number continues to grow because I am appreciating the Gourmet Jelly Beans that my sweet mama has been keeping in constant supply for my never ending craving.  I know that she is dipping into my inheritance to pay for those lovelys!  I am also appreciating the Peppermint Ice Cream that hubby stopped to get me last Saturday.  Gone by Wednesday...I really, really appreciated it!

Not sweating that I am not able to keep in touch or get together with some of my friends as often as I would like.    But I am definitely appreciating
those that have been on those journey with me.  Terri, My friend, my ride share, my sounding board who so graciously listens when I need to talk.
Julie, My sweet friend who checks in on me to ask if I need anything and even offers her husband's help.  Jamie, My co-worker turned friend, who is always a a source of encouragement at work.  Robbin, my friend at work who has traveled a similar road and offers a motherly hug and prayers.  These are just a few of the friends that have ridden out this personal storm with me.  Then there are those special moments when out of the blue someone says or does something for you that you don't expect.  This was the case last week when a friend from High School unexpectedly mailed me a sweet gift!  We have re-connected on Facebook and I now wonder what lifetime friendship I may have missed out on!  She was so thoughtful and sweet in thinking of me at this time when she has already 'worn my shoes' herself.  I am thankful for the people that God puts in our lives and now consider her one of my angels.

Life has new perspective now and I plan to stop sweating the small stuff--realizing most of it IS small stuff and make more time to truly appreciate the little things that bring joy, happiness and value to our lives.

“Enjoy the little things, for one day you may look back and realize they were the big things.”    ~Robert Brault

What I didn't know.....

Cancer stinks...this I know.  Cancer is a tough battle...this I know. 

What I didn't know is that we would still be facing such difficult timeson this journey almost a year later. October 4th marked 11 months since we first learned of dad's  diagnosis.


What I didn't know is that we would not be able to make our annual family trip to our favorite mountaintop cabin this year.


What I didn't know is how deeply that would affect me. 

Certainly I'm sad that we are missing 'our' beloved cabin, breathtaking sunrises and sunsets and nightly campfires but what really saddens me is that not going is an admission that dad's health has not improved.  In fact it has declined steadily over the last few months. 

What I didn't know is how much it would hurt the first time he didn't know who I was.  Or how he would continue to ask about the 'girl' that was here last weekend.  Thankfully he seems to recognize me now..even if it's only for the nagging I do trying to get him to eat or drink more.

What I didn't know is the impact that this journey was having on my youngest son.  After dad fell again last week he asked me if I ever cried about grandpa.  I am pretty sure I have I have mastered the art of masking my feelings and emotions to those around me.  However, while the tears no longer come easy for me there was certainly more than one that escaped my eyes after hearing his confession that he sometime cried about it.  It's hard enough knowing what an impact this illness has had on mom, Amy and myself but I had hoped, naievely of course, that I could shield some of the hurt and worry from my kids.

What I didn't know is just how much the doctor's don't really know.  All the bloodwork, MRI's and scans in the world cannot tell us if dad will improve.  Medicine is not an exact science and I am having a hard time coming to terms with that.  What we endure now would be made so much easier if there was certainty of a full recovery looming on the horizon.  I know that when we see the oncologist this afternoon I will expect answers and information but will likely have to settle for guesstimates and statistics.

On the other hand....

What I DO know is that no matter how hard times get or how discouraging the future can seem at times that we, as a family, will continue to support each other with love, faith and encouragement.

So we fix our eyes not on what is seen, but on what is unseen, since what is seen is temporary, but what is unseen is eternal.  
2 Corinthians 4:16-18