Tuesday, January 21, 2014

The Soul Decides

I was told that the soul decides who it wants around when it finally crosses over.  If the soul doesn't want anyone around, it will go when everyone is sleeping or out of the room.  If the soul wants a specific person around, it waits until that person can be there.  This revelation, again, reminded me that I'm not in control.

After 10 days in the hospital, we finally got my husband home.  Before the hospital he was like he'd always been.  Sick from whole brain radiation but recovering well.  He still had a voracious appetite and pretty decent energy.  He didn't need me to stay home with him, he was taking care of the house, our dog and cat, and even making me dinner.  Then BOOM!  He was able to walk into the ER unassisted, even though he was in so much pain from the adrenal gland tumor that had burst that was bleeding into his abdomen and the sepsis that was taking over.

Ten days in the hospital.  He went in on Dec. 12th and came home Dec. 22nd. I slept there all but two nights. I only left in the mornings to go administer finals to my students and submit final semester grades.  Other than that I never left the hospital.  The doctors made their rounds at the worst times, in the mornings while I was administering finals. Little did I know while I was passing out tests that what they were saying was that the cancer was much more aggressive than they thought originally since the tumor on his adrenal gland was not even present at the October CT scan.  They were now changing the timeline.  More like weeks or months, not years. He kept that from me for 4 days.  When the doctor finally called me at work to talk about his release and suggested hospice, I was horrified.  She said that he was ready to go home and he just wanted to be with me.  No, this is a little bump in the road I said.  He's recovering and getting stronger, he's going to start treatment again.  She wanted to schedule a meeting the next day to talk about our options. I asked him when I got to the hospital about what the doctor told me and he said he knew.  I asked why he hadn't told me if he already knew and he said he hadn't wanted to talk about it.  How can I argue with that.

We set up a meeting with the doctors to talk about options and I asked his parents to attend.  I feel like I ambushed them since they had been in the same boat as me the day before.  This is a bump in the road, he's recovering and getting stronger and he's going to start treatment again.  They took it very hard.  I felt so guilty but how do you tell anyone that their son has only weeks or months to live not years?  So I understand why he kept it from me. How could he tell his wife she would be a widow before the spring?

We only agreed to hospice because of the ability to quit and start treatment once he was back on his feet but we knew we needed a lot of help with him if he was going to be at home.  He is 6' 3" and 250 pounds. I asked his parents to move in with us.  We would set up the hospital bed in his man room.  They went to our house to make all the preparations.

Hospice is the best program.  They were still making deliveries at 9 pm Christmas Eve.  Pretty much every day we either had a doctor, a nurse, or a home health aid coming to the house and there was a 24 hour phone line where we could call and immediately get a nurse on the line and if need be, a nurse to the house.  We were scheduling physical therapists to come to get our big man back on his feet and out of that hospital bed and back upstairs into my bed.  He was just happy to be home.  I overheard him tell one of the nurses that there was nothing like home, the sounds, the smells, he was just happy.

He did pretty much everything we asked of him and he did it without complaint and most of the time with a smile on his face.  He was still on very high doses of pain killers so he slept most of the day but when he was awake we were doing leg exercises, we were trying to sit up.  But instead of getting stronger he was getting weaker and needed more pain medication.

We were hoping for 6 more months but we were starting to see the reality, he wasn't eating, he wasn't getting stronger but weaker, he was in more pain.  It was happening too soon.  We weren't even getting weeks, let alone months, it was looking more like days.  I was petrified of missing his passing.  I didn't want to leave the house, I didn't want to go to sleep.  His mom said the same thing.  We would never get over not being there when he finally went.

One of our close friends is Melissa and her mother is a retired nurse.  We call her Maka.  She had experience with hospice with her own husband and on a few other family members and close friends and she had offered up her services to us. She had just taken her sister in law up to a monastery to become a nun and had spent two days at the monastery praying with them.  Her first day back she asked if we needed her.  She arrived in the morning and I told her about my fear of not being there when he passed.  She told me that the soul decides, we have no control over it.  That relieved so much anxiety because I knew it was up to him, not me.  Another reminder that I am not in control.

Maka must have seen the signs that we were oblivious to because she just kept staying.  He was awake in the morning but as the day progressed we just couldn't get him awake enough to take his oral pain medication.  Maka switched to the liquid form to help control his pain.  She had stayed all day and said she would stay the night.

He couldn't speak to us that day but he was still communicating.  Maka was holding his hand and he let go and reached down and started patting her butt.  She said "Jeff, I'm not Katie."  His hand shot straight up into the air!  I came in a few minutes later to hold his other hand and he let go and felt around on my chest until he found my boob.  I said "yup, that's my boob." He squeezed it twice!  That was my husband!

It just so happened that Melissa was coming over that afternoon.  Melissa is one of my husband's favorite people besides Jessica.  Melissa and Jessica both were there that night.  Maka heard the death rattle around 11 pm and told me to wake up his parents who were sleeping upstairs.  We were hovering over him telling him he could go as he struggled to breathe and I realized that he was going to wait until the 29th, which is his favorite number.  Maka told us that it would be a few hours and to get some rest.  She sent his parents upstairs and I stayed in the recliner next to the hospital bed, while Jessica and Melissa were in the living room.  I dozed off and on and from12:30am to about 3:30am, Maka never moved.  She stood next to his bed and held his hand and talked to him the entire time.  Around 3:30 she told me it would be soon and to get his parents.  I laid across the top of his bed, right above his head, and stroked his forehead and cheeks while his parents and Maka held his hands as he continued to struggle.  At one point he became very calm and his breathing changed and instead of labored breathing, he was just sighing and was very peaceful. Maka and his parents sat back and Maka started asking about our wedding.  I went and got our wedding album and his parents started telling wedding stories.  I continued to stroke his face and whisper to him while listening to them and then he took his last breath and I felt his heart stop beating.  5:15 am Dec. 29, 2013.

The soul decides and his soul chose to go at that moment.  He hated being the center of attention but he wanted specific people there.  Maka's boyfriend had had the stomach flu and when she finally went home that morning, within the hour, she was sick.  He knew we needed Maka to help us get through it.  He wanted Jessica and Melissa there, but he also didn't want people hovering over him.  He waited until they were all just a little distracted while his mom held his hand and I was watching.  I feel so selfish saying this, but I truly felt like it was just me and him.  It was so peaceful and intimate.  He made sure I was surrounded by people to take care of me and support me but I feel like he chose me to share that last moment with him. I'm so grateful he chose me.






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