Next Step

How quickly mindsets can change.  On Thursday I wondered how long Kevin's journey would last. He was eating, his breathing was fine, his coloring was good...those "signs" of the end were nowhere to be found. I worried that it could be weeks. I knew he didn't want that and I honestly wondered how I could hold up mentally and physically for another month or so. Who knew that two days later Kevin would be gone.

Warning: This post may be too explicit for some but I record these thoughts for me. To process. To remember. 

Friday afternoon, Kevin said he wasn't feeling well.  We canceled our scheduled visitors and he was going to try to sleep. Once again, he couldn't relax.  We tried a "sleeping pill" (I found out later that day it was actually an anti-depressant type medicine which helps to relax and focus...and that never quite worked for Kevin)  We tried morphine. He was still having stomach pains, like gas pains.  Kevin just couldn't get settled so another call was made to hospice. They recommended doubling the dose of the "sleeping pill" and prescribed yet another medicine.  When I made my trip to the pharmacy that evening and found out it was Gas-X, I just shook my head.  I was looking for some "miracle" relief and I didn't think this was the answer.

Kailey and Peter were in charge as I made the pharmacy and grocery store run and Keaton was on his way home. Kevin was never able to sleep while I was gone and his thoughts weren't always coherent. He would say something that wouldn't quite make sense and Kailey, trying to meet his needs, would ask questions to figure out what he wanted.  His very clear response, "Why do you ask so many questions?"  Oh, Kevin.

We went through the meds regime again about 8:30pm.  Kevin would say, "I think I'm ready for bed." We would respond, "Go ahead." After all, he was in bed and just needed to close his eyes.  It's like his mind couldn't figure that out.  He had also started a sequence of hiccups and burps that certainly weren't helping him to relax. At 10:00 I pulled the recliner into the next room to try to get some rest. My hope was that by being 20 feet away from his bed, instead of mere inches, I wouldn't hear every movement. Kevin was having his own conversations about moving trailers and hooking up trailers. My pleas to relax and go to sleep were in vain. At 1:05, not sure why I remember the time so distinctly, I awoke with a start.  I had slept and I had slept hard.  Yippee! But Kevin wasn't sleeping. The hiccups and burps continued so I called hospice yet again looking for relief.  

The nurse on duty was on call so he was sleeping.  When I described the scenario, admitting that I was frustrated that we weren't finding relief for Kevin, he said he would need to get on his computer and he would call me back.  After hanging up, I noticed that Kevin's right arm was starting to shake. Sitting next to him on the bed, I held his hand.  His eyes began to flutter and his body started to shudder.  He was having a seizure.  Immediately, I called hospice right back. "He's having a seizure and I don't know what to do!" I had anticipated and dreaded this for the past year.  Seizures are a common side effect of brain tumors but this was his first.  Luckily, because Kevin's left side was immobile, the seizure wasn't as violent as it could have been and it passed fairly quickly.

He was wiped out.  The good news was that this was the most relaxed I had seen him at night in quite some time.  His head was on his pillow and eyes closed...but he still had the hiccuping and burping annoyance. No complete relief.  As I watched him, I worried that he had now lost movement in his right side.  His often over active right hand lay limp at his side.  The right side of his mouth didn't move so his speech was undecipherable. The hospice nurse made the decision to come to our house in the middle of the night. I laid next to Kevin and waited.

After multiple doses of morphine, other medications, and a 4 am run to the all night pharmacy in LaCrosse by Keaton, Kevin was heavily sedated. He was more relaxed but far from peaceful.  His breathing would appear to almost stop, then do heavy, fast-paced catch up breaths, then go through a series of hiccups and burps.  The good news was that the movement in his right side had returned. He could understand me and respond. Once, when the hospice nurse was on the couch, talking to a doctor on the phone, Kevin sat straight up, looked directly at the hospice nurse, and said, "Are you talking to me?" Caught by surprise, we stared back at him. He laid his head back down and closed his eyes.

Watching him, I was hoping for more relief but this appeared to be as good as we were going to get. The hospice nurse said he felt the move toward the end had started.  It could be hours or it could be days.

Around 6am the texts to family began suggesting they plan to see Kevin yet this morning. Strangely, the kids had slept through all of the "happenings" downstairs until I woke Keaton at 4. At 7, Keaton woke Kailey.  I wanted her to lay with her dad a while before others arrived.  I needed to make sure we had our time with him. 

As family arrived and they greeted Kevin, he would open his eyes and look right at them to acknowledge their presence.  The drug regime continued every hour while the living room was full of family and conversation. Hospice had called after 10:00 and suggested we try to stretch out the medications a bit so he wasn't quite so heavily sedated. Gradually, as the morning drew to an end, people started to leave.  We were still waiting for Kevin's brother Jeff to arrive from New Richmond at noon but the crowd had thinned.  I shooed the kids out to the kitchen to grab some lunch.

Kevin's breathing suddenly became more rapid and included a groan.  He definitely sounded uncomfortable.  Maybe extending his medicine wasn't such a smart idea. Kevin's brother, sister-in-law and nephew arrived.  I tried to tell Kevin he was here but he didn't open his eyes.  I felt so bad. Why didn't they get to see Kevin the way everyone else did? I kept rubbing his belly and saying things like "It's okay" or "Relax" hoping the medicine just hadn't kicked in.

Things moved quickly and it still seems unbelievable to me.  I called the kids to join us at Kevin's bed. At some point the groaning stopped and his breathing was a super fast, very rhythmic sequence. We had sat the bed up to help with the burping so he reminded me of a little old man with his head bent down giving quick, rhythmic breaths. We could see the changes to his eyes and the coloring of his hands. He was leaving us.  Suddenly, those quick breaths got slower, and slower, and slower, but always constant, until they stopped.

Tears.

Rubbing his head. Kissing his neck. Rubbing his belly. Holding his hand.

He was at peace.

It was shortly before 1:00. Most of the family had just left a little over an hour ago.  Now we had to call them back.  Kevin's entire family returned to see him one last time.

After I knew everyone was there, I called hospice.  The process of removing Kevin's body took much longer than I had expected.  Waiting for hospice to arrive. Then calling the funeral director. Waiting for him to arrive.  In the end, it was nearly 6:00pm before Kevin's body had left the house. During that time, I strangely felt like Kevin shouldn't be left alone.  We were all in the same room with him, but I felt like someone should be with  him. I'm not sure why. The kids and I needed to call other friends and family.  We ventured upstairs for privacy but I kept coming back to sit by Kevin and hold his hand or rub his belly.

At one point, we were all sitting/standing around the living room. It was quiet.  Too quiet. Sitting next to Kevin, I knew he wouldn't want this. Sneaking my hands into Kevin's side for warmth and comfort, I asked people to share a story of when he was younger. One of those nights, when Kevin couldn't sleep, I had asked him to tell me things about when he was little.  As typical Kevin, his details were sparse, so I wanted family to tell us more.  It was enjoyable to hear his brothers and sisters share (and disagree on details). I  think it was good for the nieces and nephews to hear the reminiscing and perhaps learn a thing or two about their parent.

When the funeral director finally arrived, and we said our very last good byes, I kissed Kevin on the forehead. It was cold.  But not an ugly cold. A cold like he had just come in from outside snowmobiling. Now he finally can again.

But this is just the next step for Kevin.  The next step to a greater life. I just wish I was with him. It is the next step for us too.  Trying to live here without him. Right now, it doesn't really seem real. Keaton said last night, "It feels like Dad is on a trip." We all agreed.  Last night I fell asleep in the chair.  Kailey woke me up when she was headed upstairs.  Half-asleep, I looked around and said, "Where's Dad?" She looked at me funny.  "Where's your Dad?" I asked again. Kailey gently asked, "Mom, where is Dad?"    Oh.     Reality.

As we move through this next step, we are thankful for:

• Hospice nurses who come in the night
• Peace for Kevin
• My kids. I will make it through this because of them
• Loving family who are feeling this same pain but still making sure we are okay
• People. People. People.  Who offer condolences and support and love

"The souls of the just are in the hand of God,

and no torment shall touch them.

They seemed, in the view of the foolish, to be dead;

and their passing away was thought an affliction

and their going forth from us, utter destruction.

But they are in peace."

Wisdom 3:1-3