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Learning to Thrive after ALS

John was diagnosed with ALS in January of 2014. Throughout his disease, we were overwhelmed by God's provision of love, encouragement and physical resources, which He so[...] read more

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Posted 2019-03-25T14:46:00Z

Final Days and Last Words

Because of the LORD's great love, we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness.   -Lamentations 3:22-23

I wrote much of this shortly after John died, but it wasn't the right time to share it.  It's not a quick read for sure and was mine to treasure at the time.  As I prepare for the marathon walk tomorrow, God brought me back to it, though, and it seems that others could be comforted and encouraged by reading it now.  It is even longer than my other lengthy posts, but as always, there is no pressure to read it.  I'm offering out of obedience and love.  That's my part. 

It was Thursday, March 24th.  John had been awake since four o’clock in the morning, and waking me up constantly, too.  I always tried so hard not to come across as annoyed when John woke me up.  I’m not sure that I did a good job that day.  He was having a difficult time getting comfortable and wanted his pillows and bed adjusted, which didn’t seem like anything noteworthy.  Things didn’t get better, though.  The alarm went off at 7am as usual.  I got back up, prepared his medicine and formula, gave his medicine and started his feeding pump.  I walked the dog, fed all the animals and climbed back into bed 30 minutes after leaving it as usual.  It just wasn’t going to be a usual day, though.  John had been having more trouble breathing first thing in the morning for several weeks.  An increased morphine dose had been effective in resolving the issue.  Not that day.  Around 8am, John was still struggling.  He typed, “I’m ready to meet Jesus.”  Well, okay.  It was Maundy Thursday, the Thursday before Easter, on which we remember Jesus' last supper.  Ironically, I turned off the feeding pump that day, and John had his last "meal" as well. 

His double dose of morphine was still half what I was told he could have, so I gave him the rest.  I stopped the feeding pump and called Steph, John’s sister.  It was a short conversation.  “John’s not doing well, and he said it’s time for you to come over,” I told her.  With a heavy sigh, she calmly replied that she was on her way.   John was settled for the moment, and Steph was on her way, so it was time for the prayer request text.  I put my phone on the vibrate setting, knowing that it would soon be flooded with text replies, and the phone was not going to be the focus of this day.  I did call hospice to update them and confirm the morphine doses I could give.  John didn’t want the hospice nurse to come, and I was good with that, too.  I was created to care for him and ready to do whatever he needed, and hospice was great at giving me support and respected when we wanted it to be by phone only.   By the time I got off the phone, responses to my text had already overwhelmed me.  We were so blessed with prayer warriors who were ready to lift us up in prayer and we were incredibly grateful for that.  Our friend Blake was on that prayer team list, not because we thought he would pray, but because I knew he would want to know when we really needed it.  His response came in first.  He simply asked if he could come over.  John said yes, and I passed on the message.

Blake came right over.  The boys were up and occupied with typing and math games in the living room and did that happily for a while.  I had already told them what was going on, that we weren’t going to have school because Dad was getting a lot worse.   They hugged me, went in to hug him and went back out to the computers, which served as a good distraction.

John always greeted people with his wonderful, bright smile.  Blake’s entrance that day was no exception.  We immediately began joking with each other, and a personality test I found online was brought to the forefront of the conversation rather quickly.  While I do believe it was pretty accurate, I know those things don’t really define or understand the depths of who we are.  However, it served as the perfect distraction for the day.  As it turns out, I am a commander.  I’m sure those of you who really know me are not surprised in the least.  It also told me I was 89% judgmental and on another scale, 74% turbulent.  I know, more shock, I’m sure.  So began the laughter.  While it was at my expense, I would not have had it any other way.  Blake took the test.  He is the entertainer, which certainly seemed appropriate.  When Steph came in, the commander couldn’t help but share what we were doing and some of the horrible (and true) descriptions that went with my profile.   You see, people with this personality have a particular skill at pointing out other people’s failures apparently, and they only make up 3% of the population, which is a good thing because they overwhelm the rest of the sensitive world.  Oh boy!  Guilty as charged, and the three people in the room who had been witness to this side of me in the past burst out in laughter.  Yes, by nature I am insensitive and harsh, and this thing nailed it.  Of course, curiosity got the best of Steph, so she took the test as well.  I took it upon myself (as commander) to read through their profile summaries silently and share the more appropriate and humorous parts out loud.  Blake and Steph moved on to other conversations as I read, and John would listen.  He laughed at me because I couldn’t stop obsessing…guess I was overwhelming everyone! Ha!  That was how most of the day went by…funny stories from the entertainer and laughing at the commander’s insensitive and obsessive tendencies.   At one point Steph massaged John’s arms and feet, and I tried to be intentional about giving them some time alone.  I was watching him closely since I was continuing all of his nursing care, and I also really just didn’t want to leave him, so I probably wasn’t that generous, but I tried.

The hourly dose of morphine seemed to keep John comfortable for most of that day.  The boys continued to occupy themselves in the living room until more friends and family came by that afternoon.   John had asked me to see if Todd, the former lead pastor, could come over.  The boys had both already expressed interest in being baptized, so the children’s pastor, Chris, was already planning to come around 4pm.  He had offered to come sooner after my text actually, but John said 4pm was still good.  We had a great visit and prayer time with Todd.  Of course he made sure to tease me while he was there, and we all laughed until he asked for specific prayer requests.  I had one.  My insensitive nature now had a label – turbulence, and I was afraid that it was going to take over and get in the way of me being able to glorify God through this.  Todd wasn’t worried, and I don’t think John was either.  I wasn’t convinced, but I was encouraged.

In the meantime, Chris arrived and went ahead and started talking with the boys outside.  That was perfect timing.  They are so comfortable with Chris, and we knew they would benefit from talking to him in the midst of this.  After Todd left, Chris came in to see us.  He summarized some of what the boys said and told us his thoughts about them being ready for baptism.  Then we visited.  John thought very highly of Chris and asked him months before to deliver a eulogy at his service.  Chris had emailed it, but John hadn’t been able to read it.  Chris paraphrased it for him in that moment.  I never asked why, but I believed it was because he wanted John to know he thought highly of him, too.  John shared again that he was ready to die, but that he just didn’t know how to stop breathing.  What an interesting comment but so appropriate because ALS is a disease that attacks the muscles you control voluntarily, which is why it doesn’t affect the heart.  You can’t tell your heart when to beat, but you do will your lungs to work.  That is why the lungs atrophy and ultimately cause death in ALS patients.  It seems a little contradictory, though, because it doesn’t actually seem possible to will yourself to stop breathing, and John couldn’t.  I soon realized he was going to have to wait until his lungs just gave out.

It wasn’t that time yet, but it was getting closer.  John and I started to get more time alone together that evening.  While friends and family gathered in the living and dining room, I gave John a relaxing sponge bath, brushed his hair, shaved his face and put lotion on him.  The entertainer was telling stories in the other room, sending laughter down the hall for us to hear.  Pandora had been playing praise music nonstop all day, and I sang along while I did my very best to pamper my sweet husband.  Around 7pm, the morphine dose needed to be increased again.  When I called hospice that morning, they had given me another increased dose to try when needed, so I started giving the new maximum.  We had a few more friends visit, but around 9 or 10, the house had cleared out.  Blake, my family and Steph all offered to stay, but we said no.  We were good, and the boys went to sleep quickly.  Jason had been sleeping with me for months, so he slept in my bed.  Fortunately, he doesn’t wake up easily. 

That night, which was actually Friday morning, from 12:30-2:30 was when John experienced the worst.  I had just laid down to go to sleep, ready to get back up every hour for the higher morphine dose.  It was no longer enough, and I called hospice, but the nurse on call didn't call back quickly.  I read the first 18 Psalms while holding his hand, hoping that would bring some comfort, but it wasn’t what he wanted.  With tired eyes, he typed “sing.” And so I did.  I also continued to call hospice and even tried the ER.  I was giving as much morphine as I could, but it wasn’t enough.  At one point, I asked him if he was okay.  His response was, "you?"  Of course it was. He was always thinking of me.

Finally, the nurse called.  She gave me a new dose to try.  She was a little hesitant at first but said since he was young that should be okay.  I told her he no longer wanted to be awake anyway.  In the background, the speech device voiced "yes" in agreement.  Fortunately, adding the Lorazepam was enough to give him relief then. I set the alarm again, so I could wake up and continue his hourly medicine throughout the night.  Long ago I told him to stop thanking me for everything, and so blowing kisses and saying I love you became his way of showing me his gratitude.  Eventually he couldn’t manipulate his lips to blow kisses, so he started to type “smooch” instead.  That night, he used that word several times and followed it up with "love you."  What a gracious man! Even when I felt like I failed to care for him well, he was always so grateful.

Friday morning at 8:05, when the alarm woke me up to give his medicine (and I went ahead to get up for the day), he greeted me with "good morning" and his big smile. That was the last thing he said.  He squeezed his closed eyes that day to respond but could no longer type. In eight words, he set the stage for his last 24 hours on earth.  I sang. I was okay. I kept him asleep. I basked in his appreciation and love for me, and I did have a good day.  It was Good Friday in more ways than one.  We reflected on Jesus' sacrifice on the cross for our sins.  We remembered the grace of God and our own unrighteousness.  God was preparing to reveal resurrection life in a whole new way to both of us, but for that day, we were able to rest not only in God's love for us, but also in our love for each other.  Good Friday of 2016 was the most intimate, special and beautiful day I ever spent with John.  He could barely keep his eyes open, and the medication was slowly increasing his level of sedation, but he was there.  He was there as I gently brushed his hair for an hour, as I bathed him and rubbed his arms, legs and chest with lotion, as I stayed by his side, held his hand and sang to him.  And amazingly, there were no tears, only peace and love.  As I loved him with my hands and voice, he loved me with his smile. 

Friends and family were there throughout the day.  Laughter still drifted down the hall, more and more food lined the counters, and the boys were so well cared for.  At times, those much-loved people would visit the bedroom, but for the most part, John and I had the day to ourselves while knowing we were far from alone.  Erik went to his dad’s house for the weekend as planned after saying goodbye to John for the last time, knowing that it would be.  Jason, only six years old, hugged and kissed and said goodbye to the father who loved him so much to spend the night at the Austins’ house, where he was graciously offered a living room fort full of legos and a sweet friend to play with – the perfect distraction.  (Dena and Zach were such a gift that night, though certainly not for the first time nor the last.)  John didn’t take for granted the gift of being Erik and Jason’s dad, and it was obvious.  With a gentle smile and a squeeze of his eyelids, he received their hugs and kisses and communicated that he was giving them right back with his whole heart, though his body laid lifeless.   

Around seven or so that evening, he became less responsive.  His morphine pump was working better, and I had been giving the extra morphine every 20 minutes for a couple of hours, along with frequent Lorazepam.  Slowly, his breathing became more labored.  I struggled to get his head in a good position, so I held it up.  Apparently, I did this for three hours.   Most people had left by now.  We were good. It was okay.  One friend stayed late to visit with Blake, then with me and John. 

Blake and I had a strange friendship even then.  We had worked together for years through Cub Scout leadership.  I did most of the work, and he put out the fires I caused when people had a hard time with how hard I pushed (okay, that was work, too)…or I put hours of planning into an event, and at the last minute he would make suggestions to change something. (That never went well.)  He was a giver, but not always for the right reasons.  He had faith experiences, but no real relationship with Christ.  He trusted in his feelings and learned from the culture of the world.  He often annoyed me, but I appreciated the way we could work together, and he and Dena really went out of their way to care for us after John’s diagnosis.  We were friends, but Blake admired and loved John genuinely, and John loved him back with patience and grace, something I lacked for sure.  When everyone else had left. Blake asked if he could stay and said Dena was okay with it.  This time it was my decision to make.  I was okay with being alone and had no concerns that I couldn’t care for John on my own.  There was so much peace and purpose, and the presence of God was palpable.  Something I realized later, though, is how difficult it was going to be to make decisions without John, not that I always needed him to tell me the right thing to do, but that his perspective often rounded out mine and his support gave me confidence in my choices.  I wasn't really ready for that, but in this situation, he had already said yes, so I relied on his answer.  While I do know John loved visiting with Blake, I had no doubt he knew that was what Blake needed, and maybe for the first time, I saw what John did in Blake.  I saw how much God loves him too, and the pain and desperation in Blake’s eyes to have just a bit more time with John, though I knew it wasn’t John he was desperate for, but for hope.  I let him stay. 

I was glad I did, and though I had mixed feelings about the boys leaving, I was grateful for that as well.  Saturday morning, March 26th, 2016, from 12:30-2:30 brought the worst pain I experienced as I watched John’s body lose its breath.  His breathing was now full of intense, agonal gasps for breath that caused his back to arch.  His apnea increased to 30 second intervals and even up to two minutes.  My stomach was full of knots and every heavy gasp felt like a knife twisting inside.  I set the kitchen timer every 20 minutes, so I wouldn't be even a minute late on his next morphine dose.  I gave the highest doses possible.  He wasn't conscious, but I prayed that he wasn't feeling anything and that God would just take him and end it.  When he wouldn't take a breath for a while, I would hold mine as well and think, "Yes, let this be over." Then he would breathe again and my shoulders would drop as I let out a desperate, faint sigh.  Occasionally his head would tilt back, his eyes would open and he would stare up at the ceiling.  He wasn't really there, though.  I prayed he was seeing Jesus...a light...something beautiful.  I sat on his left side and Blake was across on his right.  We both stared and counted in silence to ourselves.

The next phase began around 2:30. (Each lasted about two hours it seemed.) John’s palms were clammy, his head, chest and arms were sweating, his fingertips started to pale and the area around his mouth became a little blue.  The gasping calmed some. Thank you, God!  His eyes would still open occasionally.  The time between breaths continued to lengthen.  Breaths were still noticeable, though.  I used a cold cloth to wipe his head, chest and arms.  I held his hand.  I chose to listen to the book of John, using John's audio Bible and speech device for a while.  John - written so that you may believe.  Yes.  We listened for 15 verses. 

“This is my commandment, that you love one another as I have loved you. Greater love has no one than this, that someone lay down his life for his friends. You are my friends if you do what I command you. No longer do I call you servants, for the servant does not know what his master is doing; but I have called you friends, for all that I have heard from my Father I have made known to you. You did not choose me, but I chose you and appointed you that you should go and bear fruit and that your fruit should abide, so that whatever you ask the Father in my name, he may give it to you. These things I command you, so that you will love one another.”  John 15:12-17  

Friends, appointed, fruit, love…. Pointing to Jesus’ sacrifice and God’s great love for us, His desire for us to know Him and allow Him to work through us.  His strength, His plan, His goodness.  Perfect!  The conversation was perfect here, too.  The waiting conversation.  The watching conversation.  The loss of brothers conversation. 

At 4:30 or 5am, things changed again.  Blake pulled back, retreating to a chair along the wall near the bathroom door.  John’s breaths were no longer easy to hear or even see.  The skin along his adam's apple moved quickly but subtly. That was it. I checked his pulse often.  I felt his heartbeat.  I laid my head on his shoulder and remember singing again.  The 20-minute alarm would sound, and I would press the bolus button, and every two hours I mixed and gave his other medicine through the feeding tube that had allowed him nourishment for 16 months. Six o'clock -  Exhaustion and back pain threatened my post.  It got quiet and still, and though we weren't alone, John and I shared these moments without anyone else around it seemed.  I pushed my bed over, so it was perpendicular and touching his. I laid on my stomach with my head just below his left arm...hanging on to his arm, rubbing and constantly raising my head to watch his face….and to watch for movement of any kind, though my hope was that there would be none.   

I felt myself drifting as 7 o'clock neared.  The timer was still on, but I didn't want to sleep.  I didn't want to leave him alone.  I fought so hard but could not do enough.  For just a few minutes, I fell asleep.  Blake walked away to make coffee, and John and I were completely alone.   The timer woke me up.  Disturbed that I slept, I quickly checked for a pulse on his wrist.  Nothing.  I felt his chest for a heartbeat. Nothing. I laid my head on his chest to listen.  Nothing.  All in one moment, I felt hope, relief, joy, finality, heartbreak but also completion and peace.   

And so started a new season.  As He always does, God prepared me perfectly, though I failed to see it until later, as is usual also.  You see, I knew Jesus as my Savior and King, as God in flesh who gave His life for me, but what I was going to need most as a young widowed mom, was to learn to find my companionship in Christ.  I can’t completely explain it, but that night God taught me to see Jesus as my friend, and He did it through Blake.  God taught Blake a lot that night, too, but that’s not my story to tell.  (If you know him, be sure to ask!)  

Yes, John, good morning were the best last words.  Of course.  I'm sure my last words will be something forceful or over dramatic, but not yours.  You always knew what I needed to hear...what so many needed to see and hear.  Good morning always, not because our situation is good, but because God is - always!  

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