Gary's Journey has ended. Rest in Peace dear one.

It was Tuesday and I had a bad cold.  I was on my way home from work and had the thought, "perhaps I should go by Gary's and visit."  I again knew that I should not take a cold to the Memory Unit so I re-routed for home.  The phone rang with the Sunrise Assisted Living ringtone...I immediately knew something was wrong.

The voice on the other end informed me that Gary had not eaten since the day before at lunch and had his jaws on lock-down so he could not eat.  He was also not drinking water.  I somehow knew this was the beginning of the end. I explained that I had a bad cold.  Her response was, "We have face masks....you need to come."

I spent most of the next week by his side.  I sang to him, prayed for him, talked to him about memories and listened to him breathe.  

By Friday, he had a catheter as his kidneys were shutting down due to no water.  He took three teaspoons of water from me on Thursday and four teaspoons on Friday. He had chosen to die. The output from the catheter was near black. I stayed with him each day and went home at night to try to sleep.  The whole week from Tuesday to Sunday, I slept about 12 hours total.  I was exhausted but knew the end was in sight.

On Sunday, we started the oxygen and started monitoring the number of respirations emitted from his frail body.  His last weight taken was 135 pounds....down 50 pounds from when he moved into memory care one and a half years ago.

Gary's daughter joined me for several of the days where we sat vigil....waiting for his death.  We sang to him, had visitors with guitars and prayers and basically sat quietly and watched as his right lung collapsed. 

I awoke at home on Monday morning after two hours of sleep at 2:30.  I struggled to go back to sleep but arose at 4:30 am and decided to go ahead and join Gary at the unit.  I took my belongings needed to stay with him indefinitely.  I would not be coming back to my home until he died.

Normal respiration is between 12 and 20 breaths per minute.  For days, Gary was at 24.  He was on morphine to assist with keeping him from struggling.  The Hospice doctor visited on Monday morning and decided it was time to put him on continuous care.  Simply put, he would have a nurse 24 hours a day that could administer morphine and other comforting drugs until he dies.  I was glad to have the professional company in the room. The doctor met with Heather and I and said he would live 12 to 24 hours.....48 on the outside.  His physical strength and lack of heart or lung issues would slow down the process.

The thoughts that occur during this time of waiting are incredible.  I had very few tears or grief.  I had always said the last few years had already given me time to grieve.  I, apparently, was right.

On Monday, around 3:30, his breathing changed and became more shallow.  His breathing count was sustained but it sounded very differently.  The nurse's job  at this point was to watch him and give comfort as needed.  When this breathing changed, so did her demeanor.  She made no comment, but I knew the difference was a marked indicator or pending death.  

At 7:30, I moved to sit on the bed with his head next to my breast.  I stroked his head and chest and felt a man very different from the one I knew and loved.  His blood had been leaving his extremities for hours but now his entire legs and hands were starting to turn purple.  I thought at any minute he would die.  The nurse came over and examined him.  She indicated that it would not be long.  I sat there until my legs fell asleep and my pain was unbearable from positioning.  At 9:30, I moved to the chair where I could sit more comfortably but still touch him.  The nurses  changed shifts and I got to know the new nurse.  She suggested that I sleep and that she would wake me if anything changed.  I slept in the chair for about 45 minutes, rejuvenated and went back on death watch.

The night brought a stream of caregivers who were respectfully saying goodbye to a man for whom they loved and cared for for 1.5 years.  One of the ladies always referred to him as Poppy, like her substitute father. 

Around 12:30, I again sat on his bed and watched his coloring change once again.  His face had turned purple but the crown of his head was still white.  It gave the illusion of him having a jagged crown on his forehead.  His breathing had moved to being forced by his stomach muscles.

The nurse commented that she had never seen shallow breathing being sustained for that long.  Around 4:30, the room felt different.  I knew the Lord was near.  I turned on the Christian music station and again filled the room with soothing sounds.  His apnea had started. The nurse talked me through what would happen.  The science of the last breaths were accurately called by her.  

The song "Oceans - where my feet may fail" was playing.  As the song played out with a peaceful tribute to God, my husband of 32 years drew his last breath.  When the song ended, he left this earth.  It was the most peaceful experience I have ever had.  4:57 am on January 9...he was gone. I could not have scripted the last few minutes of his beautiful life any better than the unfold. 

We had to wait until an RN came to officially pronounce him dead, but I knew he was gone.  I called the folks I needed to call and then sat there.  Around 6:45, Heather came to sit with him and me until the nurse came.  We sat with his body for 3 1/2 hours before the nurse arrived.  His official time of death was 8:45 am.  I was exhausted and decided to leave.  Heather offered to stay until the mortuary came but I encouraged her to leave as well.  The nurses would stay with his body until he would be moved.

It was over.  The beautiful life he had lived was done.  The agony bestowed on my family from the Frontotemporal Degeneration was finished.  He was at peace.  As I left the room, I kissed his forehead and noticed that he was again turning from purple to white.  He was being restored.  This was symbolic of what was happening behind the scenes. I knew as Gary ascended to heaven that his body was being restored to one of health, memory and wholeness.  It was beautiful.  I felt at peace. His journey was done.

Mine is just beginning.