Hospice Home

I had Joe transported to the Hospice Home in Gilbert yesterday.  Joe had been up every 15-45 minutes around the clock.  He was starting to fall and was so restless.  He kept insisting that we remove his bile bag from his stomach.  It was a constant battle.  He couldn’t remember that the bag was surgically placed there like an anchor in a wall.  He had a big ball on the inside of the skin to protect it from coming out.  Unfortunately, they didn’t make it “Joe Proof”.  After 2 long days of trying to talk to Joe about it, trying to keep Joe calm and relaxed, we lost that battle.  Wednesday night (early Thursday morning), Joe took a fall at 2:30 am.  He cut his elbow and back.  We got him back in bed and he proceeded to get up about every 15 minutes to go to the bathroom.  I did not sleep and got up with him each time.  At 5:50 am I put him in the bathroom and he grabbed his tube/bile bag and yanked hard.  He had pulled it out of his stomach and threw it on the floor.  It happened so fast and I was stunned.  The Hospice Pastor told me later that Joe did that on purpose to let us know it was time to let go.  He was going to make sure of it. After he did that, I had to get past the shock and  kick it into gear to help him.  I won’t go into any more details, but just to say I woke Shelli up and we got him to bed while dealing with the hole in his stomach, got him more meds to help with the severe pain he was having in his stomach and elsewhere, called Hospice and said it’s time to move him.  They were wonderful and had a nurse, a counselor and transport there to get things moving.  While all of this was happening, a little white/grey bird kept tapping on the bathroom window as if trying to tell us something.  I’m probably reading into things, but it was so unusual.  While Hospice was working on Joe, I took a video and some pictures of our concerned visitor.

Once we got to the center, they worked hard to keep Joe calm.  He was in so much pain and they ended up having to medicate him every 10 minutes (dilaudid, ativan and haldol).  Finally, Joe calmed down.  His bleeding was pretty severe and they did a little test.  Around noon they told me that Joe is bleeding internally and will “bleed out” soon.  I asked how soon and they told me probably within 24 hours….at the most 48.  As much as you think you are prepared for that news, you can never be prepared to have your heart ripped out once again.

Soon after we got the news, a lot of our family from the valley had gathered around Joe.  We have been taking 1:1 time with him to say “see you later…never goodbye” and have been gathering as a group to tell stories to Joe.  Our Priest came by and anointed Joe (for the 3^rd time) and we were able to get his parents and sister/brother-in-law from California, here as well.  It’s been a day full of mental exhaustion, so many tears, some laughs, hugs, kisses and constant talking to Joe about how special he is, how many people he has touched, how many are praying for his comfort and letting him know it’s OK to go and be with the Lord.  He deserves it and we know he will be pain free, playing ball very soon.

Please understand that we know Joe can hear us and we are constantly reminding him you are all out there.  We don’t know exactly when he will take his journey and as hard as it will be on all of us, we are convinced that Joe will finally be pain free and in the Lord’s arms soon.

With Love and Thanks,

Sherrie

Happy Birthday Joe!!!!

First of all I want to thank Ron and all of you for posting the wonderful stories and messages.  Joe was just inundated with messages, gifts, food, cards, texts, phone calls and Facebook messages.  We read a little each day and it has definitely sunk in how much he means to folks and how much you all mean to him.  The birthday response has been incredible to say the least.  Shelli and I want to thank you guys for our birthday wishes too.  Our family always dreaded this week – 3 birthdays in the same week!  It’s exhausting, but you guys have made it so great with your prayers, love and support.

The birthday week had its good moments and bad ones.  We had to put our family dog Holly down.  She had cancer and like Joe, was not supposed to live this long.  The cancer just spread so bad and was consuming her body.  She was having trouble breathing and started to fall.  It was so hard on us, but it was the right thing to do.  Rest In Peace Holly!  We Love You!!! 

Joe knew it was his birthday and he knew he was 56 on May 4^th.  On May 3^rd, he started having a lot of pain and restlessness.  He was up every 30-60 minutes for over 24 hours.  No matter how much pain medications I gave him, nothing could keep him down.  He tried so hard to pull the tube out of his stomach and then he started getting organized.  I was so exhausted since I had zero sleep and when he was in the bathroom I laid down for a minute.  I fell asleep and woke up about 10 minutes later to find that Joe had taken everything out of his drawers and laid it out.  I asked him what he was doing and he said he lost the uniforms and equipment for the baseball tournament so he was going to use his stuff.  The rest of the night he talked about the upcoming game.   

We kept his birthday low key and just had some family over.  Joe opened more cards and then yelled at us to get the game going.  We felt so awkward, but he was determined this game was going to happen.  He directed us and we moved the furniture in the family room, set up bases using white napkins, put him behind home plate as the umpire, and used a balloon for the ball and a banana for a bat.  Grammy pitched and Edison batted and got a home run.  We took turns batting, fielding and pitching in our family room and actually had a blast.  Joe said it wasn’t exactly as he pictured it, but it was good.  The best part was after the game, he actually started to relax and rest more.  The mind and determination are so powerful. Joe definitely has a passion and I think we all know what he will be doing in Heaven - - anything to do with sports!!

After visiting, resting, reading cards and playing ball we took Joe for a walk with the family.

Joe's Birthday walk with Doug, Candace, Amanda, Shelli, Edison and Quinn

It was the perfect end to the day.  Joe slept better that evening then he had in several days.  When Hospice came today and asked him how his birthday was, he said “I didn’t die.  I really didn’t want to die on my birthday.”  Maybe that’s what he is waiting for.  I just don’t know.  Hospice said his blood pressure continues to increase, his pulse rate is high and continues to increase, his weight is now dropping (even with the TPN), his legs are swelling, he has fluid in his lungs and his “body mass” is just different.  All signs he’s in the final stages.  The only part that makes no sense is how in the world Joe gets ups, walks, showers and visits.  They keep saying they just haven’t seen anything like him.  We also talked about putting him in the Hospice Home.  I go back and forth and have not made a decision.  I’m taking vacation this week from work, so I will try and decide while I am off work.  It’s too hard to make that decision when I’ve had no sleep.  I’ll see how the week goes and hopefully will know when the right time to move him will be. 

Thank you all again for making this week so special for the Kahler family and especially for Joe.  Without your love and support, it could have been the worst birthday Joe has ever had.  Instead, you all made it so memorable for him.  We keep all the cards in a BIG basket in the family room as our constant reminder you are all out there for us.  We couldn’t do this without you.  God Bless each and every one of you. 

With all our love and thanks,

Sherrie, Joe, Shelli, Amanda, Candace, Doug, Edison and Quinn

HAPPY BIRTHDAY JOE

Family and friends,

I am honored to once again have the opportunity to write on Joe's Game Plan with Sherrie's permission.

Sherrie is a wonderful woman and has proven to be very strong in her ability to keep all of us informed during these very difficult months.  I can only try my best to imagine how difficult it is for her, yet one thing I can tell for certain is in the past few months each posting by her is increasingly difficult to write.  Let's try to help her out.

I know you have sent in cards and letters to the Kahler family expressing your love and support, which has been so important, as it has given them strength.  Some of your stories have given the family a few timely laughs, much needed and much appreciated.  Many of you shared your stories of Joe from yesteryear in person at one of the gatherings over the past several months.  There were the joyful high school and college reunions, the fun charity golf tournament and lunch, and there was the wonderful Daddy/ Daughter dance.  While many great "Joe" stories were exchanged during these get-togethers, not everyone who follows this site got to hear them or join in.  So here is an idea.

For Joe's birthday, which is Sunday May 4^th, let’s flood this blog site with birthday wishes.  Send your birthday wishes here for others to see and please share your "Joe" stories with each other while entertaining the Kahler family and all of us as well. If not registered to the blog or one of the log-ins, simply enter through the anonymous button.  You can sign your name at the end of your story or stay anonymous.  I realize many of you have already put a birthday card in the mail, while others may not have seen this post before May 4th, it doesn't matter.    Make your story long; make it short, but please share one or more of your favorite Joe Kahler stories here for all of us to read, as we can further share this time together and give a little gift of ourselves back to the Kahlers.

 HAPPY BIRTHDAY JOE, we love you!

Let the stories begin.

Here is my story.

 R. G. Neilson

 

TOUCHDOWN MAKER

The smell of the green grass was never sweeter than that of the rectangular, white lined field, of five-yard intervals. Nothing compares to the smell and taste of that fresh-cut grass on an autumn night under the bright stadium lights with the cheering, Spirited crowd at our backs.

Wounded the week before, unable to practice during the week, dressed in full uniform but unable to play, the touchdown maker watched and impatiently paced along the sideline.  A separated shoulder can be painful at best, and fully debilitating for a football player.  The impact from the many collisions an all-star running back encounters in the normal progression of one game would only worsen the injury and delay full recovery.  Full rest and abstinence from this game was the coach’s prudent decision.  The game must be played without the touchdown maker.

Morro Bay, I believe it was.  We had gone there the year before.  This crisp and chilly October night it was us and them once again in the swirl of the high desert winds. Nearing the end of the first half things had gone well for the team wearing the scarlet and gold uniforms.  Seconds left before the halftime break.  Thirty some yards from our destination.  Timeout.  A trot to the sideline.  Quick conversation with the head coach.  “Run the circle route; 24 circle pass”.  With one wave of the coach’s hand #24 joined me on the trot back to the huddle.

One pass

One catch

One play

One touchdown

 That night of the glorious autumn of 1975 #24 the touchdown maker in one play once again led his team to victory.

 R. G. Neilson

Stronger, Yet Weaker

I’m happy to report that Joe has gained 5 lbs since they increased his TPN.  It has given him the strength to walk short distances on his own without falling.  He loves it!  Unfortunately, his pain level continues to increase as the cancer grows and the toxins (combined with his pain meds) are taking over and we are losing Joe mentally worse than ever before.  In addition, he still doesn't sleep longer than 2 hours at any given time.  A whole lot of tears and un-pleasantries come with memory loss and excruciating pain.  Out of respect for Joe, I won’t go into the details, but just say that everything is becoming harder to manage and harder to witness.  Hospice is very concerned about the effect this may have on the girls and me and also worried if we can even physically handle Joe during certain situations.  They want me to move him to the Hospice Center so they can manage him 24/7, see if they can do anything different with his meds and take over so the girls and I can be the grieving spouse/children instead of being caregivers/grieving spouse/children.  I understand completely what they are saying, but I haven’t mustered up the courage to say OK yet.  I suspect it is coming as there are certain things that are almost unbearable.  I have told them that I won’t consider anything until after Joe’s 56^th birthday, which is Sunday, May 4^th.

On a good note, Joe likes to get outside everyday so we put him in the wheelchair and take a stroll in the early evening.  We’ve been watching a video our dear friend Susan put together for us called “This Is Joe.”  It’s been so helpful for Joe to remember certain people and events in his lifetime.  He still lights up when the grandkids give him those big “HI PAPA” yells and hugs and kisses.  Our youngest daughter, Shelli is turning 20 tomorrow, so we have been talking about how exciting this is and that our baby is no longer a teenager.  Joe seems to understand that milestone as well. 

As always, thanks for your never-ending prayers and support.  We seem to be coming closer to the end and I just ask that you pray for Joe’s comfort and peace.  He told me that he is ready, he isn’t scared and he knows it’s going to be wonderful beyond anything he could imagine.  He deserves it.  He is truly amazing.

With love and gratitude,

Sherrie

Easter Week

As a Pastor said this week “Jesus is victorious in pain, suffering and death. We need not worry. ” It reminds so many of us of Joe’s journey.  While his pain and suffering continue to increase, we trust in the Lord that soon his pain and suffering will cease.  Until then, we are all suffering along with him.  As only Joe can do, he tries everything he can to minimize our pain by trying so hard to make things as “normal” as possible. He talks, visits and jokes with us even though we know he is suffering.

Joe had a couple bad falls this week.  He got confused when the doorbell rang and went out the garage door while I was in the shower and Shelli was answering the front door.  He fell and hit the car.  His elbow swelled up like a softball and became “fire engine” red.  Hospice said he developed an internal infection from the falls and we had to put him back on IV antibiotics.  Happy to report they have worked and he no longer complains of elbow pain.  The other fall came in the bathroom and I couldn’t catch him in time.  He scraped his arm and bruised his side.  Typical Joe, no complaints.  I just apply antibiotic cream and bandage him up.

Easter day was a blessing.  We never thought Joe would be with us to celebrate this glorious day, so that in itself was our miracle.  We had 20 family members there and Joe sat at the table with us and enjoyed his Popsicle while we ate an Easter feast.  Joe was so happy he could do that and so happy we kept things “normal”.  We had an Easter Egg hunt for the kids (Joe was too sick to join in or watch), but Edison and Quinn did share all their excitement about the day with Papa Joe while he lay in bed listening to them.  It was another blessing. 



Joe with his parents, sister Julie and Brother in Law Mike

Joe with Shelli, Amanda and Candace

Joe having Easter dinner with the Family



Easter night, Joe’s pain just escalated.  He never slept longer than 45 minutes at a time and became very confused and started hallucinating.  The flood gates opened on my end, which didn’t help the situation.  We held each other tight that evening and Hospice was there in the morning to evaluate the situation.  They suspect that the cancer that has been present on top of Joe’s liver is now penetrating in the liver.  The liver rids toxins from the body and when it can’t function, the toxins build up in the brain and cause these problems.  They’ve added another medication to Joe’s list.  We were hoping it would help him sleep more, hallucinate less and make him more comfortable (even at the expense of losing alert time with him).  The girls and I think it has helped, but not as much as we had hoped.  Maybe it will in time.  Until then, Joe continues to get up numerous (and I mean numerous) times a day -24/7, struggles more than he ever has and now has a constant pain level higher than ever before.  Our job is to continue praying for Joe’s comfort and to do whatever we can to put that Joe Kahler smile on his face...even if it is for just a moment. 

Thank you for doing your part with your prayers, support, cards, gifts and messages for Joe and our family.  You help ease all our pain with your love, prayers and support.

Happy Easter and God Bless you all,

Sherrie

T-Ball!!!

Joe and our son-in-law, Doug had always planned to coach all levels of baseball together.  Unfortunately, Joe is not able to do that, but Doug did continue on with the goal.  Joe was so glad and supportive.  When Joe heard Edison's 1st game was Saturday, he said he wanted to go.  The girls and I decided we would do everything we could to get him there.  At midnight Joe started to get out of bed and wanted to get ready for the game.  I had to tell him it wasn't until 10:00 am the next day, so back to bed he went.  We did get up in plenty of time to get Joe showered, dressed and give him some pain meds so he could make the trip to the ball field.  Joe couldn't walk to the field, but thanks to Hospice, we have a wheelchair for him.  We got there in time and Joe saw Edison get his first hit.  It was a classic T-Ball moment...swing and a miss, swing and a miss, swing and hit the ball, chase the ball, pick the ball up on the way to first base!  We will never forget it and laughs and joy that came from it.  Joe wanted to stay for the entire game, so we saw Edison play defense and hit the ball a few more times (and learn not to pick up the ball on his way to 1st base).  When we got Joe home, he was exhausted, but so happy he made it.  He said that he was so glad that God let him get to the game.  He also said he wondered if that was what God was waiting for...to make sure Joe got to the game.  We don't know, but just his words had us all in tears.

Here are some pictures from this priceless day.
 

Edison's 1st time at Bat with Dad (Doug) coaching

Joe and his grandkids Quinn and Edison, after the game

The rest of the week has been difficult.  Joe only sleeps 1-2 hours at a time.  He's had a couple bad falls (he continues to try and do things on his own), the pain is increasing and things are just challenging.  On another positive note though, after several calls and lots of frustration, I finally got the insurance company and Hospice to agree to increase Joe's calories from 545/day to 1100/day.  He was losing a pound a day and I really thought they were starving him to death.  I've come to terms that Joe will pass away from cancer, but I could not sit by and let him starve to death.  It is definitely helping and Joe doesn't obsess about food the way he was.  We'll see in a couple days if it helps put a few pounds back on him and hopefully give him some more strength.

Speaking of strength, thank you all again for the cards and notes and prayers and support.  We received breakfast at the door yesterday (thank you Heather Burris!) and some dinners and groceries and gift cards.  The support and love is truly overwhelming.  We sat with Joe today and read all the cards and messages that came in this week.  He was smiling from ear-to-ear.  He just said "this is amazing".  He's so right and we thank God everyday for bringing you all into our lives.

Love,
The Kahlers

That’s Our Joe

Hospice told me two things this week that really stuck.  One was “We (Hospice) are very good at predicting end of life…………except in Joe’s case.”  And the second quote was “You die like you live.”  It really helped me understand the end of life journey we are on with Joe.  Although they never met Joe when he was healthy, they told me he must have been extremely strong, quick to do everything, put everyone before himself, did anything for his family, never wanted to let anyone down and was really determined.”  Yep…that’s our Joe.  This explains why we are in week 7 of a journey that was supposed to be 2 weeks long.  No one is saying how long Joe has now.  He’s exceeded everyone’s predictions.

Things are tough though – mentally and physically – for Joe and for the rest of the family.  Joe continues to lose weight (lost another 4 lbs), is gone more than he is here and has more pain than ever before.  They thought he had another urinary tract infection, but turns out it is probably just the cancer and organ failure causing the problem.  I’ve had to tell him several times that he has cancer because he doesn’t understand why he can’t walk like he used to, why he has tubes and bags connected to him and why he sleeps on and off 24 hours a day.  This morning was particularly rough as he couldn’t figure all this out.  I sat with him for a long time today and explained every step of his journey from the first indication he was sick in November, 2011 to being diagnosed on December 3, 2011 to his seven surgeries, his treatments including chemo, radiation and experimental drugs to finally signing on with Hospice.  It was a painful, yet comforting discussion.  He seemed to recall several parts of the story and by the end, felt relieved that no one was “tricking” him, but instead just helping him.  And then the light bulb went off and he asked for his basket of cards.  The basket has been next to him in bed and we’ve been reading on and off today as he lay in bed.  It was so comforting for him to know and understand how many folks are supporting him and his family through this entire journey.  I’m guessing this is one of the reasons we are in week 7 of this journey.  As always, we owe you guys a tremendous amount of gratitude. 

XOXO

Sherrie