I'm not Ready

I don't know what to think about how the day went today.  Steve woke me up at 3:30 am.  He was wet from his chest down.  He had had been sleeping for 9 hours and his urosomy bag had leaked everywhere and I could smell his diaper.  He was literally dripping everywhere he walked.  He came and sat on the couch [mental note: wipe the couch with bleach wipe to kill the virus before anyone touches it and mop the floors].  I talked to him briefly and grabbed the mop and washed with bleach water the path I was on as I walked back to his room and got him dry clothing.  I walked back into the living room.  "Steve, lift your arms, we need to change you."  He complied and I changed his shirt.  I handed him the disposable wipes and a new Depends and a clean pair of shorts.  "Go get yourself cleaned up" I told him.  He did as directed and I continued spraying, bleaching, wiping and mopping.  What I didn't realize is that he had gone back to his bedroom instead of the bathroom.   When he walked out in clean clothes, I saw where he came from.  I sat him in his chair and went back to mop his room.  When I got there I saw the bed needed to be changed again.  So, I put on my gloves and got the clean sheet and under pad and set about to do the work quickly before he came in.  I didn't want him embarrassed to see me cleaning up after him.  He is a man [after all] and who among us would want someone else cleaning up after us?  How would it make us feel to know that we had to have someone change our beds?  He won't let me help him personally.  That's too much.  But, we have to keep cleaning because he has the virus and it is imperative to kill the virus.  We have to be aware of everything he has touched.  We have to be vigilant to protect ourselves and our families.  I finished without him catching me.  This whole process had taken an hour.  It was now 4:30 am and I told him I thought we should try to lay down again.  Just rest until the others woke up for coffee and breakfast.  Today he has a doctors appointment.  His CNA, Jennifer and his RN Nicki would be here early and they always wore him out.  He took a ml of Morphine and laid down. 

I laid down on the couch and it took me another hour of reading a magazine to finally set it aside and close my eyes.  He woke me again at 6:30.  He was sitting in his chair and messing with his cigarette box.  I looked over and he was folding a card around it and then smoothing it back out.  Getting the remaining three cigarettes out and laying them side by side on the table.  He walked over to the drawer and pulled out five candle numbers.  He laid them on the table.  I asked what he was doing and he proceeded to tell me a story.  It was obvious by the story and the questions he was asking that he was confused.  I wondered to myself if he was over-medicated.  But, as I looked at his med diary, I could see it had been 7 1/2 hrs since he had anything. That couldn't have been it.  I wonder if the end is drawing near and if the cancer has hit his brain.  I fixed him some instant coffee in his Starbucks mug and he lit a cigarette and  inhaled it deeply and set it in his favorite cobalt blue glass ashtray Eric had given him.  He continued to mess this the cigarettes he had lined up on the table.  He picked up an unlit cigarette and put it in his mouth.  He reached for his bright yellow lighter and I said "don't light that."  He asked me why? I reminded him that he already had one in the tray.  He said he was looking for it and set the unlit one down again. 

Once he finished that smoke, I had noticed again, he was wet and his bag was coming off.  I told him he would have to go and change again.  This time he went to the bathroom and Grandma and Betty woke up.  "Good Morning" they said to me with smiles on their faces.  Not a very good morning and I hated to tell them but knew I had to.  Their smiles faded and concern crossed their weathered faces.  We are going to the doctor today.  Maybe we'll get some answers. He had been in the bathroom for about 30 minutes trying to get himself cleaned up.  He came out in his diaper, something he never would have done if he had his wits about him.  He said he needed to sit.  So, he sat down and smoked another cigarette.  Just then, Jennifer showed up to shower him.  Every time she showers him, it takes everything out of him.  He is just exhausted just changing his own clothes.  She is patient though and she worked hard to clean him up.  She oils his legs to keep the skin supple but the swelling is starting to take it's toll.  The skin is so stretched it is beginning to weep and bleed.  She puts on clean clothes and he walks out with his salt and pepper hair all wet.  We are talking about his care when his RN shows up.  She sits down at the table and writes a page of things to check on while he finishes a cigarette.  We realize that he is not wearing a bag and we tell her we better put that on now before he ends up wet and we have to start over again.  She agrees and we help him back to his bed.  Once there, she realizes just how infected he is.  Sigh....

We arrived at the clinic 15 minutes  prior to his appointment at 10:45.  Steve seemed to know the drill.  He walked straight up and signed him self in and seemed like his old self again.  Gone was the confusion and clarity had returned.  We wait.  We watched an hour of House they had playing on the big screen.  They had the lobby full of chairs lined in rows like we once did to watch movies in the Elementary school gym.  Finally, they called his name.  He has gained a few pounds.  We are happy that our nutritional efforts are working out.  The doctor prescribes an antibiotic and more pain meds, orders a blood test and wants to see him again in two weeks.  Again, it crosses my mind...will he make it two weeks?

We stop and take him to lunch at a little mom and pop place by the hospital and he eats about half his burger but not very much of anything else.  We box it up and take him home.  He needs his meds and that is a full day for someone in his condition.  He seems good though...just tired.  We let him nap until around five.  Betty tried to wake him up.  She reminded him we are returning tomorrow to Utah and tried to convince him to come and spend some time with us.  He didn't.  I had to get going to collect my things and get some work done.  I went in to kiss him on his head.  I told him I loved him and that I had to leave.  He said okay, love you and I walked out.  I was putting my things in the car when he came walking out the door.  His shoes were on the wrong feet and he walked over to my car to climb in.  It was locked and he was trying over and over.  I told him only I was leaving and walked him back into the house.  He told me that my jokes moved his heart to the right side.  I knew then, the confusion was back.  I told my Grandma to watch him and I would call in an hour.  When I called, he is very confused still.  He told them he didn't think the baked potatoes were very good.  They ate Kentucky Fried Chicken for dinner.  I don't know if I should go home tomorrow. 

Grandma said the hospice is having a social worker come by in the morning to evaluate him to stay short term in their hospital to receive IV antibiotics.  They think that is what is causing the confusion.  I wonder to myself "can he rally?"  I am tired but I am trying to make a decision.  Should I go back over there?  Or should I get some sleep?  I know I shouldn't be driving.  My Grandma thinks he'll be okay tonight, but, I will hate myself if I miss it.  I'm thinking...I'm thinking.  I call Grandma again. She assures me it will be okay.  I need my brain with me tomorrow.  I need to talk to the social worker and I may need to drive home.

After making her promise me when she get's up in a few hours to use the restroom that she'll check on him and call me if he is still confused, I decide  I am going to stay here with my Fuller family and get a good nights rest.  I have the greatest support system.

Dave and Tammy have had my back.  They put me up and feed me coffee in the morning.  Their son, John, was so thoughtful, last night he waited to shower for me to get the first one. They gave me my own room and a four poster bed.  My friends back home (Deb, Kathy, Dan and Jay) are making me dinner on Saturday night.  How great is that?  I am deep in the west.  My emotions are running deep.  The see my need and they reach out by text, email and phone calls.  God brought us back together and I think I know why.  This is who we can be ourselves with.  These feelings we feel are about as raw as it gets.  We help each other through the trials.  They feel like a second family.  I am so grateful that God is good and we have earned each other.

I ask myself the big questions: Is there a Heaven?  I think there is.  I believe Steve deserves to go there.  He has always been so good to me.  Without question, steadily supporting me all my life.  I love his humor.  I love his smile.  I love the way he rolls his eyes at me.  I love talking about fixing up our homes.  He is my Favorite.  My friends tell me it is okay to cry.  They tell me they are here for me.  I have not a doubt of it.  I haven't really broken since I found out.  A tear or two has slid down my cheeks when I needed to leave tonight.  What if this is the last time I kiss him on his head?  What if I never hear his voice again?  What will I do?  I am completely unprepared for this reality.  Tears are rolling down my cheeks now.  The things I think....you are beginning to see what I am saying about wondering if I am certifiable. I have seen the Secret.  I don't want to put it out there.  I want him to go quietly.  I don't want him to struggle.  I need to rise up.  I need to rise up and meet this.  I want be there holding his hand.  I think God is gonna be so proud of him.  He was there for me.  He raised Betty's babies until he couldn't anymore when he found he had cancer.  He has been there for Betty steady and true.  He always knew who he was and he never apologized and he never changed.  I love that about him.  In his hours of need I will be there steadily supporting him in return.  I hope God gives me the summer with him.  I hope my fears quiet and we have time to say all the things that need to be said.  I hope I have no regrets.  Energy never dies, it only changes form.