Ron's Last Moments

My riding mower has not been working right.  It is not holding a charge, so I have to jump start it before I mow and then again whenever it dies while I am mowing (which can be a real challenge because I then have to push it from wherever it dies in my hilly yard to an electrical outlet).  Today, I called Jerry and Jim from Cottrell Outdoor Equipment (269-629-9094 - I would love for you to throw them some business) who repaired it earlier this spring.  Initially, they did not remember me.  I tried all my clues in succession before they recalled me.  “I am the girl on 46^th street.”  “I am the girl with all the stickers on the mower that had those electrical issues.”  “I am the girl who gave you the Toyota to give to your friend.”  Finally, out of desperation, blurting, “I am the girl whose husband had cancer.  He died two weeks ago.”  At this last statement, I burst into tears and they remembered me and immediately began expressing condolences. 

They came right over.  They took my mower because there are already mice living in the engine again and they want to clean it up and explore what repairs are needed.  They both hugged me.  They both shed tears.  They told me how sorry they were, shared stories of how cancer and other terminal illness have affected lives, and empathized with my situation.  They told me, again, not to worry about that old mower; they have my back, they will take care of me.  They offered that I can call them any time for support.  They told me about the booth they will have at Richland’s upcoming Relay For Life event and offered to put Ron’s name on a luminaria, so I made a sign for him using one of the Gwen Frostic turtle stamps that had become symbolic for Ron.  I gave them a check, made out to Relay for Life, in his honor.  They tried not to take it, saying “We don’t want any money from you, we’ll cover you” but I insisted.  I want to keep honoring Ron and I find myself sending out checks in his memory pretty much daily to the various organizations that have helped us.  I told them I am leaving for the weekend and will find someone to mow while I am away, so they can take their time with the mower.  Jerry told me he will come over and personally mow my lawn this weekend.  They were both so sweet and kind to me, as they always have been.  We all wept and I felt truly taken care of by these sweet gentlemen.

As they were pulling out of my driveway, my next door neighbor came over.  She told me that our neighbor down the road passed away this morning.  I don’t want to use their names, because I don’t know that they have had a chance to share their knowledge with those who need to know first.  But, I do want to share that these neighbors, an elderly couple, have been so kind to me and Ron.  They were married for 65 years and the husband had been fighting cancer for five.  They came to Ron’s 30^th birthday party and I took a photo of them that I now need to find to share with the wife.  They prayed daily for Ron and I and we did the same for them.  The wife and I exchanged food when either of us made or had too much of something.  She and I offered support to one another on the phone and whenever we saw each other in passing.  I just saw the husband, a farmer who remained active in spite of all his cancer treatment, working on his tractors in the barn down the road a few days after Ron died.  I know he is now joining Ron for whatever comes next and I’ll bet they are probably both rejoicing in the fact that they lived as fully as they could until the very end.  So, I am now also mourning for my sweet neighbor, who always plowed out my driveway in the snow and always joked about my dogs.  I feel worse for the wife than I do for him because I now know personally how hard it is for those of us left behind. 

Hearing that my neighbor died and wondering how it was for him, since he died in a hospital rather than at home, reminded me that I have been meaning to post on here to tell people about Ron’s final time on this planet.  Now seems as good a time as any to do that.  There is nothing too shocking or graphic or anything, but I do just want to preface the rest of this entry by saying you only need to read on if you want to know about what the end was like for him.  If you would rather not know, then now is the time to close this post down.  And, forgive me, for it is long, because I know no other way than to say it all.

The Friday (5/4/12) before Ron passed away, he was not feeling well.  This had happened a handful of times before in the preceding weeks, but seemed to be happening more frequently.  He would wake up late and feel very sluggish and sometimes had a hard time speaking.  He also felt dizzy and weak.  On some of these occasions, he would have trouble regulating his body temperature and would feel cold and clammy to the touch, or be sweating buckets while shivering beneath blankets.  His mother and grandmother were scheduled to visit and we kept that in place.  When they arrived, he still felt strange.  I had plans to meet some friends for lunch and beers in the afternoon sun.  I offered to instead stay with Ron and in all honesty wanted to stay with him because I was worried about him.  He encouraged me to keep my plans and get some respite, since his family was here to watch over him.  When I returned home, he was feeling better, but still fatigued.  His mom told me he slept most of the day.  By bedtime, he was back to his usual self and we didn’t think anything of it - this had been happening so often.  I had already called his hospice nurse while I was in town and she didn’t seem to think it was anything to worry about.  She told me to call her over the weekend, if needed, and I agreed.

Ron’s last Saturday (5/5/12), he was feeling pretty good.  I was, for some reason, tired and overwhelmed with everything that needed to be done.  I remember complaining heavily about something, but for the life of me, I cannot remember what.  (Insert regrets here - I can name several hundred I have had, but will refrain for now.)  I just remember him telling me he was sorry that all of this was happening to us and reassuring me that it would all be okay.  He always reassured.  It is one of the things I miss most about him.  Our friends, Laura and Gina, stopped over to drop off a very hilarious t-shirt about well-known comic book characters and their various psychological disorders (Ron LOVED it, but never had a chance to wear it).  My brother, Dustin, and sister-in-law, Carrie, came over.  Because he was feeling up to it and the rain was holding off, we packed the four of us and three dogs and the wheelchair into two two-door cars and headed into Battle Creek for a dog walk.  Ron and I joked around on the car ride over.  We held hands.  We talked about how good it was to be doing something together that was not going to the hospital.  Our dog walk lasted about two miles, maybe more.  I think Ron got tired long before we turned back, but, he didn’t say anything, even during the 10,000 (compulsive) times I asked if he was okay.  It was finally Dustin who said he wanted to turn back.  Ron was sore when I helped him up out of his chair and back into the car, but he said he had fun.  He told me he needed a little push from me now and then to go have an adventure.  He had always joked that I was the gas and he was the brake in our relationship and it’s true – together, we found balance.  On the way home, we stopped at one of Ron’s favorite places to get ice cream and he ordered a root beer float.  He stayed in the car and we stood around the outside of his window eating and chatting with him.  He did not finish the float, but was happy to take it home and get it out later to add more root beer and keep eating away at it.  At home, we ordered a pizza and it seemed like the best pizza ever from Sajo’s, our favorite place in Richland.  Ron ate two slices and confirmed its greatness.  He was otherwise pretty quiet.  He wanted to watch Cops (he loved to smoke pot while watching Cops . . . just something about those two things combined), but it was not on.  I can’t remember what we watched instead, but know Dustin and Carrie left before it got too late and Ron and I sweet talked with each other until bed.

The last dog walk - still smiling

On his last Sunday (5/6/12), he was feeling tired from the big outing the day before.  But, he was excited about stuff he was downloading with the iTunes gifts he got for his birthday and was never without his ear buds in.  His mood was cheerful.  The weather was nice and I told him I needed to be outside.  I wanted to get something done.  I always feel like I need to be getting something done.  I told him I wanted to weed his raised vegetable garden beds and get them ready for planting.  I asked him to come outside with me, for as long as he felt up to it, just to hang out and chat while I worked.  He stayed out for about an hour, smoked two cigarettes, peed in the grass a couple times (a favorite thing for him since going to the actual bathroom had become so much work), ate some candy, complimented my efforts in the garden, gave me advice about the garden, talked with me about what plants to pick up at a sale the following weekend, petted the dogs, and told me I was beautiful, even though I was dirty and sweaty and had picked at a spot on my forehead until it was red and was wearing my shittiest and most unflattering gardening clothes.  He told me I was beautiful, like he always, always did.  I blew off the compliment, like I always, always did.  He looked at me with love and I did the same.  And then he needed to go back inside and get in his hospital bed, which was the only place he was really physically comfortable anymore.  I got him settled and set-up with what he needed, then went back outside to work some more.  Came in after another hour and showered.  Attempted to make an actual meal on the stove because I was hungry and I wanted Ron to have something good to eat.  Cooked some frozen ground turkey (burned it) and mixed it in with some store bought sauce and served it with pasta shells.  I thought it tasted like complete crap and apologized to Ron that I am such a lousy cook.  Told him I wished I could have served up meals he would actually want to eat.  Ron tasted it and told me it was fine, it was actually good.  He ate a small bowl with lots of parmesan cheese (I believe the cheese was to hide its disgusting flavor, which he would never have admitted to me).  He thanked me all night for trying to cook.  We watched some Sunday night cartoons together.  We told each other we loved each other.  We fell asleep to Vanilla Sky (Ron’s pick), which we had been falling asleep to for the past two nights – the tradition had become that we would pick up where we left off each night until the movie was done.

Hanging at the veggie beds - my favorite company

On Monday (5/7/12), Ron was slow to wake up.  I got him up to pee and smoke around 10am.  After doing these things, he said he just needed to sleep some more.  We were scheduled for paracentesis at the hospital and needed to leave by 1pm to get there.  He told me to let him sleep until noon and then ask him.  At noon, he said he couldn’t go.  He felt too weak.  He could barely stand.  He refused to eat.  He was feeling cold, but was sweating again.  His temperature was 94 degrees.  He couldn’t get comfortable.  I cancelled with Borgess, rescheduled for the next day.  I called our nurse and then spent a few hours reading from a place where I could watch Ron sleep until she came out around 4pm.  She took his blood pressure.  Normal.  Listened to his lungs.  Normal.  Took his blood oxygen level.  Normal.

She listened to his heart.  She said it sounded different.  She told us it was slower than usual for him (60 beats per minute rather than 80) and that it sounded like it was working harder than usual (Ron’s heart was one of the strongest and most steadfast things in his body throughout this whole ordeal, feeding some very vascular tumors almost effortlessly – yet another one of his superhero strengths).  She told us she thought that all of these little episodes of weakness and temperature issues and dizziness were part of the disease process and that his body was slowing down.  She told us that he probably had a few days to a few weeks left.  She was serious, empathetic, and sorry, but wanted to call it like she saw it so we would be prepared.  I started to cry.  I had to blow my nose.  I could not keep my face together anymore.  She asked Ron to get quiet and listen to his body and see if he could tell that something was different.  He told her he could not.  He told her he was fine.  He was just tired that day, he said, but he now had his appetite back.  He told her his brother, Doug, was coming the next morning and that they would go to the movies to see The Avengers after his paracentesis and then Doug would stay the night.  I asked her if this would be okay and she said it would, if he felt up to it, but cautioned that he should not leave the house if he was feeling dizzy.  Ron added that he might even have Doug take him to the comic book store the following day, if he felt up to it, so he could spend some credits he had there.  He perked right up after she mentioned it could be the end – ever defiant and mischievous – never one to be kept down or told he can’t do something. 

I asked if we should call his family and tell them what she thought she noticed about his heart.  Ron said no.  He didn’t want anyone worried.  He just wanted Doug to come as planned.  The nurse said we could wait a few days and see how Ron was doing then.  She said if his heart stayed slow over the course of a few days, then we should tell the family.  She said she would check in with us the next day.  I walked her to the door and she told me she was sorry for the news, but added that she might be wrong, as so many predictions for Ron had been in the past.  When I got back to him, Ron told me she was “100% wrong.”

The night before he died, Ron had an appetite.  He was voraciously hungry.  He requested Chef Boyardee ravioli and ate half a can.  He requested an orange cream bar and ate that.  He requested a small bowl of rainbow sherbet, which he ate with his favorite spoon from his grandparents (a baby spoon – he liked sherbet with a baby spoon).  He proceeded to eat from the steady supply of candy and junk food he kept at bedside, Little Debbie snacks and Lik-M-Aid Fun Dips and butterscotch hard candy.  He ate and ate.  He asked for a juice box.  And another.  I saw him eating and I had hope.  He was certainly gearing up for something.  The amount of food consumed was abnormal for him, since eating usually hurt his belly so much afterward.  The eating also contradicted everything I had read about end of life body functions; usually people stop eating and you are not supposed to force them to.  It gave me hope and seemed to give Ron a great deal of enjoyment.

I continued to cry off and on over the course of the night, thinking about losing him and what that would do to me, to his family, to his friends, to everyone who knew him.  Ron continued to reassure me that he was fine and was “not going anywhere.”  He went to the bathroom.  He went outside to smoke.  At about 8pm, he said he was ready to just be in bed for the night.  We watched House M.D. together, me sitting by the side of his bed on the floor, where I often sat so that we could be close and touch each other while we watched.  He may have petted my head.  I may have stroked his arm.  I can’t really remember if we did those things on that particular night or if I am just remembering all the nights rolled into one.  I got ready for bed and made my chair bed up.  I asked if he wanted to “slumber party it up” which means talking until we both pass out from conversation.  He preferred instead to finish Vanilla Sky, as he had been almost to the end the night before when the sleep timer on the tv cut it out.  So, we watched the last 10 minutes or so while he took his night meds.  I cried some more, thinking about the movie and the chance to live forever and be cryogenically frozen and come back at a time when they could cure you.  I wondered if Ron would even want that, were it available to him, and wondered if someone who is healthy (like me) would be allowed to just join their partner in that deep sleep until they could both be together and made whole again. 

So, next on the list of movies for us to fall asleep to, we talked about several different Wes Anderson flicks and settled on Darjeeling Limited, because the train scenes always make both of us sleepy.  We were both making comments during the preceding short film, Hotel Chevalier, and I noticed Ron’s petered out and that he had fallen asleep before the short was even over.  I fell asleep after the brothers drank their sweet lime.  It was probably about 10:30pm.  I awoke about 2 hours later to Ron stirring in his bed.  I asked him if he needed some help.  “No.”  I asked him what he was doing.  In slurred speech (from the new sleep aid he’d started a week earlier, I suspected), he answered, “It’s too hot.”  He was kicking his covers off.  I again asked if he needed help or if he wanted to get up to go pee.  “No.”  We said our ‘I love you’s and went back to sleep.  I did not get up or go over to him.  I was tired and lowered my head back down on the pillow.

Oh, dear friends, that was the last time I would ever hear Ron Clark speak.  Cruel hindsight.  The regrets.  How I wish I had gone to him.  He told me not to, but still, I could have easily crossed that three feet of carpeting and I wish I had.  I could have held him and rocked him.  I could have squeezed into bed with him.  I could have talked to him all night, read to him, sang to him.  I could have told him about all the great things he would see and people he would meet.  I could have reminded him of the positive impact he has had on everyone who’s known him.  I didn’t know.  I didn’t know.  I didn’t know. 

A half an hour after the covers came off, like clockwork, I got up and went over and tucked him back in.  His breathing was a bit raspy, but this had become quite common over the preceding weeks and he often woke coughing in the morning, so I was not worried.  I did not wake him up (wondering now if I even could have).  I got back in my bed.  I went back to sleep.  I was used to getting up to check on Ron every hour or so.  I was always able to easily go back to sleep.  It had become a routine.

Around 3:30am on Tuesday (5/8/12), Ron started making noises and I woke up.  He was sort of moaning and crying out a little in his sleep.  I went to him.  I was saying his name, softly first, then more loudly.  It had happened before that I tried to wake him and couldn’t right away.  On those occasions, he would wake up scared because my efforts would get too loud.  So, I tried to stay soft and quiet, repeating his name, touching his arms, his shoulders, his face.  Repeating his name, more loudly now.  Shaking him a little.  Saying his name loud.  His eyes opened most of the way, looked right through me, didn’t see me, looked out toward the darkened window where his lovely view would be.  He could not wake up.  I could see him trying, but he could not wake.  I turned on some soft lights.  I kneeled by his bed.  I help his hands and touched his arms.  I cried.  I cried.  I cried.  I told him I was so scared.  I told him I was not ready for this.  I told him that even though I was not ready, he could leave his body if he needed to.  I did not want him to feel trapped in there.  I hugged and kissed him.  I stayed with him for a half an hour.  I named off all the people in his life who loved him.  He quieted.  He went back to sleep.  His breathing was wheezy and kind of ragged, but steady and without any long pauses in between.  His heart rate was steady – I watched the strong and ever-present pulse in his neck. 

I thought about calling someone, but I didn’t want to wake anyone up.  I reread everything in my hospice manual.  I read online.  I wrote a long email to my family about what had happened that day with the nurse and then with him not waking up.  I was certain he would wake up.  No sooner had I sent the email than he made some more noise.  Softer this time, but still audible. 

I finally broke down and called my brother shortly after 4am.  I could not keep the fear and tears out of my voice.  Hearing his voice on the phone started me panicking a little.  He said he would be over as quick as he could.  He asked if I had called anyone else.  I told him I had not, but that I would call the hospice nurse on-call.  I didn’t figure the on-call person would tell me much, other than what I had already read in the book.  When you take on the responsibility of caring for someone until the end, you sort of are supposed to be prepared for this sort of thing.  The on-call nurse said I was doing everything right.  She said she would send our usual nurse out in the morning.  She told me there was no way to know whether Ron would ever wake up or not.  She recommended giving him oral morphine for pain, which she said would help with his breathing and help with any pain that might be causing him to cry out.  She also recommended crushing some Ativan into the liquid morphine to alleviate any anxiety he was feeling.  She emphasized what I had already read over and over – hearing is the last sense to go, so to be mindful of talking to Ron and providing him with comforting sounds and words.

Dustin and Carrie arrived about 5am and helped me get Ron repositioned more comfortably.  When we finished, we felt like we had accomplished something.  By then, Ron’s medication had kicked in and he was resting, breathing regularly.  I positioned him with his head looking slightly toward where we were sitting in the living room, just a few feet away.  We made a pot of coffee.  We were sitting around processing what was going on and what would happen next.  I was (again, regrettably) quite cavalier about it all.  I still fully expected Ron to regain consciousness.  I figured he would tell me about how scary it was not to be able to wake up.  I figured I would plant a big old kiss on him and tell him how scared he made me.  So, we sat around talking . . . just about random stuff . . . checking in with Ron every couple minutes, saying his name, including him in the conversation.  Every so often one of us, usually me, would go over to him to look at his face more closely, check for signs that he would wake up, monitor his quieted breathing.

Ron stayed asleep.  Around 7am, his regular nurse called and said she would come out soon.  “Do I call his family now, or should I wait until you get here?” I asked.  She recommended calling, so I called Doug.  Told him there was a change of plans and that instead of going to The Avengers, he should plan to bring his mother and sister down to see Ron.  I told him Ron was unresponsive, but I was still so sure he would be awake soon, figuring his night meds just needed to wear off.  By the time they arrived, I figured he would have us all laughing about it.

More conversation with Dustin and Carrie.  Nothing special.  We all wish we would have gathered around his bed side and been talking directly to and about him during this time, but we didn’t know . . . and maybe the way it happened is what he wanted anyways – no big fuss.  We checked on Ron a few more times.  Then, in the midst of things, just before 8am, I looked over from the seat I’d picked where I could see his lovely face in the soft morning light.  I watched his chest.  I did not see it rise.  I listened and did not hear him breathing.  I quickly went to him, telling Dusting that I did not think he was breathing anymore.  He still had a pulse, strong and visible, when I got to his side.  I was so scared.  I was calling his name.  I put one hand on his shoulder and the other on his arm and gently rubbed him.  I told him we were with him.  I told him he was not alone.  I told him that I loved him . . . we loved him.  I am sure Dustin was saying the same.  I kept waiting for him to take another breath, as I have been with grandparents who were dying and could go for unimaginable amounts of time without a breath, only to gasp for another one.  Instead, I saw Ron’s pulse stop.  His eyes opened really wide.  He looked a little amazed for a second and then he looked, well . . . gone.  He was gone.  He was gone.  He was gone.  I cried.  I wailed.  I cried.  Dustin held me.  Carrie held both of us.  We all cried.  We cried and cried and cried.  Ron . . . Ron . . . Ron . . . we loved you so much.

The eye of my beloved - this is how I will remember him - full of love and light

I called the nurse and told her.  She started to ask if I was sure and then I think realized she didn’t need to.  I knew.  She said she would be over as soon as she could.  I called Doug and told him the news.  He was with his parents and he and his mother would go to his sister to tell her.  The three of them would come down.  Ron’s body would stay in the home until they could come see him.  The nurse came and confirmed the death.  She called Anatomy Gifts Registry, through which Ron donated his body for research.  They would contact the local funeral home.  It was all very smooth and calm and natural.  It was not traumatic in some of the ways I feared it could have been. 

It was a sunny, perfect day.  It was a day of mourning.  It was a day of making many hard phone calls, sharing sad news, hearing people’s voices crack on the other end of the line.  A day of gathering up his medications to give to the nurse.  A day of watching the supply company come and remove all of the rented hospital equipment.  Day of the dogs barking at so many people coming and going, but also sort of seeming to understand that something big had shifted.  Day of tears.  Of grief.  Of Kleenex.  It was also a horrible day.  He had been doing fine and seemed stable.  And then he was gone.

Through hospice, we had access to Rose Arbor, a very beautiful hospice residence in Kalamazoo that Ron and I had talked about him going to if he ever got to a point where I could no longer physically take care of him.  He agreed to go, if needed, but his real goal was always to die at home, with no heroic measures, with me by his side.  He didn’t ever want to get to the point where he needed someone to change diapers or a foley catheter bag.  He didn’t want to be unable to stand.  He already hated that he could no longer walk.  Perhaps most of all, he did not want to be in and out of a coma for weeks on end and have people constantly worried and fussing around him.  When the time came, he wanted to just go.

Well, I have to say, Ron went on his own terms.  He was as active as he could be right up until his final day.  He was surrounded by love when his heart stopped.  And, because he fooled me (and maybe even fooled himself) into thinking he was fine the night before, he avoided any fuss or drama or the big deep conversations that we kept putting off.  Ron never wanted anyone to be sad or worried about him.  He kept the grief at bay while he was living.  Of course, this makes it harder now that he is gone and I am filled with regrets about all of the things I wanted to tell him, but I am glad I respected his wishes.  Still, if I could go back, I would have held him the entire night and never left his bedside.  This would be for me more than for him – I think he did it how he wanted to.  Regrets.  I didn’t know.  I feel like I should have known, but I didn’t.  I believed him when he said that he was fine.  That he was going to The Avengers that day.  That he would be in attendance at his sister’s wedding in July.  That he would go to Wheatland Music Festival in September.  The fact that he always had a goal in mind is what likely helped him live so much longer than anyone expected.  Sure, he was in denial about some things, but that denial actually helped him live for as long as he possibly could, and to live happily and fully.  He never gave up hope that he would see another day, even as he could acknowledge that he knew he was dying.  He held those two conflicting truths in his heart and somehow didn’t let them cancel each other out.

Even though it was always to be expected, it seemed so unexpected, so sudden.  Even if I had another day or another week or another month, I still wouldn’t be ready.  Wouldn’t have told him everything I wanted to.  Wouldn’t be ready to lose my love.  Wouldn’t be ready to face a world where the nicest person I ever met no longer exists. 

The way he left this place was completely Ron.  It could not have been any more peaceful or painless.  He was there until he wasn’t, just like he wanted it.  I suspect he is proud of that, wherever he is.  So, here’s to you, Ron Clark – you did it right, sir, you did it just perfect.