Unfinished business

Being a guest blogger is an interesting concept. For reasons which now escape me, I assumed that my post on Brit’s Running Stitch would gather the same readers’ commenting as my own blog. Wrong! For one thing, Brit writes a lot about her creative endeavors (quilting, cooking, gardening, etc). I have enjoyed clicking over to explore a few new blogs and reading about a wide variety of topics. In one blog, I read a post on the Death with Dignity-Assisted Suicide measure brought me to tears. For example’s sake, the writer described her view of her own Dad’s death when she was 10 years old.

 

After reading, I wondered how my sons, particularly YaYa, would remember their father’s final days before his death. If you remember, he died at home and I cared for him. As for whether it was with dignity, only he can evaluate that. I do think that it was his fight to have and when he’d finally accepted his fate, he went. There was one single tear which I took as his way of saying I love you. I was reminded me of some grief work which I had planned but have put off for reasons which will soon be evident to you.

  

Warning: You may need to get out your box of Kleenex for this one.

 

In the final days of my husband’s life, he wrestled with death. He fought to maintain his dignity even though he was rapidly losing his ability to function. In addition to all of this, he fought me. Refusing to use the walker, he crashed into things as he walked about the house. Like a bumper car, anything in his took a beating. Often, these things beat him right back. His arms and legs were bruised from these collisions as well as from the IVs. If anyone tried to help him, he would swing his arms wildly and growl. It was so difficult to NOT help him but eventually I got used to letting him crash. I drew the line with the stairs. I would boldly block his way and tell him no in as firm a voice as I could. “Move!” he would bellow, but I stood my ground. It got to the point where nobody wanted to help care for him. They all just wanted to bring in a “nurse” to solve the problem. I refused. I knew that he would end up either strapped to the bed or moved to a nursing facility to die. I wanted dignity for him.

 

Two days before he died, I was out running. I’d set him up nicely. He was sleeping in bed after a foot rub, some meditation, and his morphine with ativan cocktail. I left him in the hands of his two sisters and niece. I’d not made it back yet when my phone rang. “He’s UP!” they reported. They wanted me home. I arrived to find him sitting on the couch completely soaked in urine. In his confusion, he had removed his diaper and wet himself. I cleaned him up and he moved to the rocking chair where I read The Tao of Pooh to him. All seemed to be well until I noticed him slumping to the right side. His tumors were causing more strokes to occur and this one seemed like a big one. I offered to help upright him but he refused the help. His arm was getting badly squashed. I urged him to move. He grabbed the handrail and pulled back with all of his strength. The rocking chair moved back and then came flying forward as he released his grip. He, along with the rocking chair, lay in a twisted mass on the floor in front of me. At this point, there was no way he could do it on his own. I went to move him and watched as his arm came swinging around in protest. I swiftly grabbed and said, “I will NOT let you hurt me.”

 

His sister came in just in time to help me move him. We untangled him from the chair but were not able to pick him up off of the floor. It was at this point that she motioned me outside to resume discussions regarding the “nurse.” Knowing the end was nearing, I told her that he would likely be bed-bound from this point forward. There would be no need to bring in outside help.

 

Inside, my husband lay on the floor moaning. I knew he was in tremendous pain but still he refused the morphine. He was always stubborn like this. I felt the most amazing sadness as I watched him lying there. This was not how it was supposed to be. We were supposed to have a YEAR to create some “good” memories, NOT all of these “bad” ones. He eventually let me give him the morphine. I that time of surrender, I made a little bed on the floor for him with a pillow and blanket. One by one, the kids came in to sit with me. BoBo asked how long he would be like this. I clarified whether he meant on the floor or fighting with his will to live so that he could die. BoBo meant the latter, and I explained that it would be soon. We embraced.

  

With a fire burning in the fireplace, we waited for his brother to arrive from Hawaii. I knew that collectively we were not strong enough to lift him to the bed. So we waited and I watched. He never moved his right side again.

 

I grew anxious as the time approached for my husband’s oldest brother to arrive. I wondered what he would think of me, finding his brother lying on the floor like this and hearing of my refusal for help. On one hand, I cared what he thought; on another hand I knew that I had done everything right. When he did arrive, we lifted my husband on a blanket into the bed. The lift became a struggle as my husband attempted to help. I am sure it was hard for him to be seen in such a helpless state. Dignity. What is that?

 

The following day was quiet. I was home alone with my husband for the majority of the morning. I called the hospice to add a home health aide to our schedule for help bathing, shaving, and oral care. I stepped up the social worker visits for the boys. And I took long deep breaths in preparation for the days to ahead.

 

The fireplace continued to warm the room. He loved the fire place. It was one of our few requirements when we were looking for our new home. Some of his favorite music played quietly in the room. He slept a lot that day. I sat with him for periods of time, and left him alone at other times. He always was a loner of sorts – needing time to himself in order to find his truth. That evening, his friends David and Marc came to spend the night. They meditated in the room beside him, thereby setting the energy of peace. Just before bedtime they played Old Maid with YaYa which was a relaxing way for my son to be near his Dad in these final days.

 

With the aid of a sleeping pill, I slept well that night. By morning, I awoke to the sounds of moaning coming up through the heater vent. I arrived at his side to assess the situation, and reviewed the log of the medication administered during the night. It had been over 6 hours since his last dose of pain medication. I mixed up the dose and spooned it into his mouth with the baby spoon. His moaning continued and his breathing remained labored. I wasn’t sure that the morphine was even absorbing. I called the on-call service at the hospice to request a change to subcutaneous morphine.

 

The morning activities went on like any other day, only it wasn’t me who took the kids to school. I pulled each child aside and warned them that today might be their father’s last day alive. I gave them the option to skip school. I also asked BoBo if he wanted to be picked up when it happened. He said that he wanted to finish out his school day and would probably want to play in his baseball game. In retrospect, I am not sure if he was in denial or just needing to be near his friends. His aunt drove him to school, and YaYa rode his bike to school with the neighbors. With the kids at school, I put down the side rail and lay beside him for a while – trying to find comfort for him and me.

 

By 9 am, I was impatient with the hospice agency. My husband had been receiving his morphine dose hourly and my supply was running dangerously low. I called the agency again. The receptionist informed me that everyone was in a meeting until 10 am. I paused a moment to quell my frustration and then explained that I had called the agency after-hours to report on my husband’s increased pain needs and request subcutaneous morphine via a CADD pump. I told her that if she could assure me that the pharmacy was processing my order that I would wait for the nurse to call me however, if the pharmacy was not already working on my order than I would be out of morphine by the time they processed it. I then reminded her that my husband was DYING and that she was working for a hospice which promised 24-HOUR support. She promised to have a nurse call me within 10 minutes.

 

Five minutes later, a nurse called. She had not heard of my request from the call center and my request was not being processed. She told me that she would see how quickly the pharmacy could process the order and advised me to give him ativan with the morphine in the meantime. I explained that my husband was no longer swallowing and that I was afraid that the morphine was getting lost in the pool of saliva even though I was clearing it out before the doses. I did what she said though and held his hand while I waited. Through my tears I told him that I loved him and that we would be okay. I told him that it was time for him to go.

 

The nurse called back to tell me that the pharmacy was mixing up the solution and that she would bring an injection to the house to hold him over in the meantime. I told her not to bother, but just to come to pronounce. My husband’s sister looked at me in horror from the doorway. I hung up the phone and told her that I wanted to hug her but that I was not going to leave his side. I knew that she was afraid to be there but she came anyway. He took his last breath just as a single tear rolled down his cheek. His sister and I embraced and cried. His fight was now over. My fight, as well as our children’s, was just beginning.