That Sudden Burst of Energy was Knocking on the Door

It was early Sunday morning, around seven, when I noticed he was staggering.  I never thought the oxygen would run out so soon.  He had a green tank that he wheeled around with him and there was a much larger tank in our garage. These had just been delivered and he had never been out long enough for me to know how long the tank would last.  I called his sister, Jonnan, she was staying in a room down the hall.  I was beside myself.  I had no idea where the nearest hospital was and I wasn't even sure I knew what I was doing.

I quickly packed up the car and was ready to go, waiting for Jonnan as she would be able to lead me to the hospital. No one was moving fast enough for me that morning. We pulled in to the circular drive at Putnam County Hospital and I rushed inside with the canister, leaving Bill in the car.  I was praying they could fill it, but they couldn't. I was calm, but my insides were racing.  He'd never make it home if I didn't get oxygen right now! The woman at the desk was not very enthusiastic, she responded to my crisis as if it were nothing, "Sorry, no oxygen for you,  next please?'  I needed options, answers, suggestions, any thing! She wanted to know where we lived and I told her Carmel.  She would give me a portable tank, but ONLY if I returned it that day! She had to be kidding, but she wasn't.  My brother in law, Steve, saved the day. He followed us to Carmel, took the tank and drove back to Greencastle to return it.  I don't know what I would have done without him.

We were home.  We were married.  We laid in bed, Bill exhausted and me talking non-stop.  I had to know if he could hear me, knew what I was saying, was still with me. He hadn't spoken since the wedding reception.  I would ask him to give me a "Billy Smile" to let me know he was still with me and he'd grin from ear to ear.

You learn to read a person's face, their eyes, their reactions to touch and sound when they are unable to speak. I didn't know how long I had, but I wanted to talk to him every moment that I did.  He hated having the lights on or the television, but I insisted that he did.  When he would be sleeping, I'd be on the computer researching every thing I could find on death, what to look for, what to be concerned about. I was now his nurse, twenty four seven and I did not want to miss one thing that might change and I not be aware of its significance in his overall being. 

I was emailing his family daily of updates.  I was on the phone to doctor's and hospice about his care.  I had gone to the medical equipment store to purchase items that would make life easier for him.  I bought the cane, a shower stool, a wedge for the bed so he could breath easier.  If I thought it would make his last days on Earth more comfortable, I bought it.

He wasn't able to keep much food down, so I had to become creative to get him to eat. I made him Coke floats.  He loved them, the scoop of ice cream floating in ice cold Coke.  He'd  never had one and he savored the icy cold ice cream melting in his mouth.  He sucked on ice chips constantly, so I took 7-Up and froze it, crushing it in ice chips.  The first time I placed those on his lips, his face lit up, some thing with a taste besides blah water. I  made pudding s that he didn't have to chew, he could just let it dissolve in his mouth. But his stomach was bloating again and Monday, we had an appointment at the hospital to have the fluids drained.

He was too weak to walk, so I dropped him at the door, running in for a wheelchair and pushing him inside while I parked the car.  It was a routine that we'd come to know and people knew who we were.  He was finished with his procedure and was ready to go home.  I couldn't stand to see him so weak, trying to be so strong.  I stopped at the medical equipment store on our way out and bought a wheel chair.  I wasn't going to have him fall if we had to go some where.  I was putting it in the back of the car, when Ashley called.

She had stayed home sick that day and wanted us to come get her.  Bill was shaking his head, "NO."  I asked her why she was home and the response was always the same, she was sick to her stomach.  I told her we had just gotten out of the  hospital and her Dad wanted to get a bite to eat.  He wanted Bob Evans.  She insisted I come get her, she was hungry and hadn't eaten all day.

Bill didn't want me to go get her.  He was upset with both of his daughters but I told him that I'd tell her she could only come up to the house if Donna picked her up.  I thought for sure, Donna wouldn't drive that far, but my plan backfired.  Donna would come pick her up after work.  We were going to be stuck with her for a couple of hours.

I picked her up and I could tell by the look on Bill's face that he was not happy about my decision. I drove to Bob Evan's, surprised that Bill wanted to eat.  I got everything out of the car, he loved his new wheel chair!  I rolled him in and we were seated.  He was restless and tugging on every thing. I knew some thing was bothering him, but I had no idea what it was.  He settled down for a moment when the waitress came to take the order.  He wanted roast beef and mashed potatoes!  He pointed to the picture on the menu.  Ashley, in her typical fashion ordered the most expensive thing on the menu and I had breakfast.

Bill kept fidgeting and I would whisper in his ear if he was OK.  He gave me nothing.  I was trying to read his mind and be polite to his daughter who was chattering about her illness.  I thought maybe Bill needed to use the bathroom, it was the only thing I could think of, but I was puzzled as to how I would accomplish this.  Did I wheel him in the men's bathroom?  He was too weak to stand on his own. Did I wheel him in the women's restroom and help him?  I was trying to figure out what would work best and decided I needed the cane as once I got him in the bathroom, he'd need something to steady him.

I sent Ashley out for the cane and wheeled him up to the front by the bathroom doors.  She headed out to the car and he motioned for me to lean down to him.  He was shaking his head.  "You don't have to go, do you?"

He shook his head no.  "You don't want her here, do you?"  He shook his head yes.  It was a ploy, to get away from the table so that he could let me know that he wanted her to go home.  She came back in and I told her I guessed her father was playing around as he didn't have to go after all, wheeling him back to the table.  The meals were served.  She ate like she always did, a bird picking at her meal.  She didn't want to take it home, she didn't eat left overs.  Bill ate quite a lot given that he hadn't been eating.  He enjoyed the mashed potatoes and gravy, but he was not enjoying the company.

I packed everything up and we headed home.  Ashley wanted to "help" so I put her to work.  Bill had to do breathing exercises to keep his lungs clear, she could sit on the couch and coach him, making sure he did them right.  She didn't want to do that.  She didn't want to do any thing and I was anxious for Donna to come get her.

Donna had never been to my home, but when she rang the door bell, Ashley was quick to take her on the nickel tour pointing out things that were of interest, such as her father's belongings. I was starting to get a little on edge and was more than happy to see them drive away.

I stayed up all night. Cat napping.  Listening to Bill breathe.  Wondering if it was going to be his last breath. I talked to him non stop when he was awake.  I opened the blinds so he could look out on to our beautiful yard and enjoy the sunshine beaming down.  I would tell  him every morning what day it was and what was on the agenda.  The attorney was going to be coming on Wednesday for him to sign his Will.  I wanted him to have a sense of what to expect as I'm sure he'd lost track of time.  Tuesday night, I sensed things were changing, ever so slightly, but still changing.  I might have been hallucinating as I had not slept in days, but I was very cognizant of his every fiber.

Tuesday evening as we laid in bed, me watching his chest rise and fall, him sleeping restlessly, three in the morning, the labored breathing stopped, he sat upright in bed as if he'd been cured, he turned to me and spoke, "Cindy? Are you alright with the way things are going to be? With the Will?"

"Yes." I responded.  Was this possible that in a mere second he was talking normal, sitting upright, not having difficulty breathing?

"I need to know you will be  OK, I need to know this!"

"Bill, I'll be fine, I really will, I'll be just fine." And in a second, he flopped back in to the bed and the labored breathing started all over again.  I knew this was the beginning of the end.  I'd read about this burst of energy that comes toward the end.  I laid there the rest of the night, watching him, listening to him, wondering if he'd make it to the morning to sign his Will.