Kevin's Hands

Today, one week after Kevin's death, we said good bye.  I know the reality of him being gone has not set in.  The necessity to make decisions and complete tasks has pushed me through this week.  When I thought I would be struggling at the visitation and funeral, I found myself lifted by the many hugs and kind words of literally hundreds and hundreds of people.  There was no overwhelming grief. No crushing fatigue.  Instead there were smiles and laughter and handshakes and hugs.

Will I crash? Yes, but not today.  There were too many wonderful people celebrating Kevin's life...helping me to appreciate even more the man I shared my life with. Thank you, God, for letting Kevin be a part of my life.

At the funeral today, I shared these words I had written prior to Kevin's passing.  Was I sure I could stand up there and do this? Absolutely not.  But I believe, once again, Kevin was giving me his strength.

Kevin’s Hands

            Thank you for taking the time to come together today to celebrate Kevin’s life. Some of you have known Kevin since he was a cute little baby where his tiny fingers may have wrapped themselves around your finger.  Others may have known Kevin since he was a young boy where I envision his hands were often quite grubby as he was busy following his Dad or Grandpa around on the farm or chasing his brothers and sister.

Some of us came to know Kevin in high school.  There his hands were large and manly. As a woman, I don’t have tiny, petite hands. But Kevin’s hands next to mine made me feel small.  Not small as in diminished, but small as in protected and safe.

Many of you knew Kevin’s hands to be rough and callused and dirty.  Over the years the grease and oil of his labor had made an almost permanent stain.  When Kevin would try to “give me 5” to little kids, they often pulled back thinking he was dirty and needed to wash his hands. Back when we were getting ready to be married, it was common for the groom to wear a white tux. We knew that Kevin’s stained hands would stand out against that white suit so he spent time soaking them in bleach before the wedding. And over the years, if Kevin spent time away from work on vacation, we would tease him if his hands started to appear white again.  Time to go back to work.

He had so many calluses that heat didn’t bother him.  He was known for reaching into a campfire with his bare hands and turning a piece of wood or grabbing a foil packet off the grill without the use of tongs.

So why am I talking about Kevin’s hands? Because I think his hands represent who he was.

Kevin was physically strong. He didn’t work out or lift weights but he had muscle. Over the years, I can remember stories where some man… (let’s just keep it generic here so as not to offend anyone)… some man was pushing or pulling on something and struggling with all of their might.  Kevin would walk over, give it a grunt, and have it done.  I’m imagining some said, “How’d you do that?” while others just shook their head.

Kevin was mentally strong. As many of you know, I thought of him as my rock. While I fussed and worried, he would try to calm me down and put things in perspective. I’m hoping he can somehow continue to do that for me even though he isn’t physically present.

Kevin was funny…or at least he tried to be.  If things got tense, he could make me laugh, even if I didn’t want to. He had some zany one-liners like when someone asks, “What’s up?” Kevin would respond, “A chicken’s butt when it eats.” It just catches you off guard and makes you shake your head before moving on. Kevin used that sense of humor to tease kids.  He’d ask the craziest of questions or twist something they just said and then the poor kid would just look at him and not know what to say.  For example, a little boy might say, “I spilled on my pants at breakfast.” So Kevin would come back with, “You ate your pants for breakfast?” It didn’t take long for Kevin and his humor to forge a bond with a child. He liked to tease and he kept that sense of humor right up to the end.

Kevin was hard working. If it was farm work or spraying crops at the co-op or being a mechanic, he put in long hours to get the job done. Kevin wasn’t a procrastinator.  He didn’t wait until the last minute to take care of things in our home or yard or with our vehicles.  I always knew the lawn mower or snow blower would be ready when the time came.  If we were going on a trip, he would always check things over on the vehicle before we left and he’d pack a little tool bag just in case.

Kevin was a fix it man. I’ve always considered myself lucky to have a husband who knows his way around a tool box.  If something broke I often said, “Your dad can take a look at it when he comes home.” And he did. And he fixed it.  He enjoyed making things work again. When it came to his work, he knew his stuff and the guys at Peterbilt can vouch for that. Truckers would call for mechanical advice day or night.  Although, he did grumble about the calls where the driver says, over the phone, “My truck’s broke.  What’s wrong with it?” He always wondered how he was supposed to diagnose the problem over the phone. However, a customer told me this week, he would often call Kevin and describe what was wrong with his truck. He said, Kevin would tell him what was wrong, he would bring in the truck and 90% of the time his phone diagnosis was spot on. As I said, he knew his stuff.

In my opinion, what made Kevin good at what he did was his realization that he wasn’t just fixing a truck. He was helping a person. As I’ve witnessed this past year, he made a connection. So even if he screwed up or made a mistake, people knew he was giving his best and would try to make it right. You can’t ask for much more than that.

This past year, Kevin’s hands changed.  The stains and calluses disappeared. His hands were more pale and thin and soft. Just like his hands, Kevin’s softer side became more apparent.  The rough and tumble outer edge was wearing away. He was more outwardly emotional and appreciative. It was always there, just not on the surface for everyone to see.

I miss this guy.

He won’t be there to make sure my car is okay

or fix what I break

or be my muscles

or my strength

or make me laugh

or hold my hand… 

So I look to the Lord as it says in Isaiah: 

For I, the Lord your God, hold your right hand; 

it is I who say to you, 

“Fear not, I am the one who helps you.”

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

One Day at a Time

As this disease progresses, I find myself reluctant to have Kevin take that next step.  A week ago last Wednesday (Jan 4), a new hospice nurse visited the house.  After evaluating Kevin, she was sure he was on the decline and needed a hospital bed.  What? The recliner was working fine.  How would we transfer him from a bed to a wheel chair? "You won't," she calmly answered. "But you don't have to decide right now." With a few tears, we gave the okay.

Ironically, Kailey and I had just talked about taking the Christmas tree down over the weekend. Change of plans! If we were getting a bed in our living room, there was no room for a tree.  Once the hospice nurse left, we jumped into action. My trusty helper, Kailey, ran to the attic to fetch the boxes and we disassembled and boxed it up in no time.  With the boxes still piled in the living room, there was a knock at the door.  The bed was here!  Seriously??  She had told us they don't move furniture and they don't help move patients.  Eek! We weren't ready.

Sleeping as I write this

The delivery guy set the bed up in the middle of the living room.  Once he left, we tackled the job of moving the heavy, solid oak desk from the living room to the other room.  We couldn't lift it, so we had to find and use the furniture mover stored in the garage.  The two of us managed to transfer Kevin from his recliner to the wheel chair.  Picture Kevin (wrapped up in a blanket because he was cold) sitting in his wheel chair in the door way while two crazy women pushed and pulled furniture, vacuumed 100-year old cobwebs found under furniture and maneuvered his bed into place.  There was no shortage of entertainment that afternoon and to quote Kailey, "No one got hurt!"  Kevin was snug in his new bed. An afternoon that started with tears ended up to be quite fun.

This same hospice nurse encouraged us to use the medications in the care package to keep Kevin comfortable.  For a family that isn't big on taking pills, this was another step.  How do we know he really needs them?  What does he need? How much?  This doesn't fit into the "Buck up" mentality we live by.

I've surmised, since this nurse visited, that her theories weren't quite accurate.  She was making observations without ever having seen Kevin before so she could not accurately see progression (or decline).  Kevin is not on his deathbed.  His breathing is good. His coloring is fine.  He is still eating. Is he deteriorating? Certainly.  Most likely, that is due to his tumor growth.  He has no movement or strength on his left side at all.  His right side is weaker and more inaccurate when it comes to movement.  He cannot sit up without the assistance of the bed (or a whole lot of muscle power).  We no longer make any attempt to have him leave his bed.

Our biggest hurdle right now is sleep.  For some reason, Kevin cannot settle himself down to sleep at night.  Although his body is fairly immobile, he uses his head and right hand to do his own version of "thrashing".  I sleep on the couch next to his bed so I can answer to his needs. Unfortunately, that has become a challenge I cannot meet. Kevin gets wild and crazy ideas in his head that I cannot change no matter how hard I try.

One night, he was desperately trying to line up the flaps on his blankets. What does that mean? I turn on the lights.  He is wide awake.  I show him the blankets...no flaps. Then he wants help with the lid on the silo. I give him drugs for anxiety and restlessness. The weirdness continues.  At one point, I crawled into bed beside him and started asking him questions about his childhood thinking it would take his mind off the current dilemma occupying his brain.  That lead to a 30 minute discussion on setting an alarm.  "I set the alarm.  It's okay. Just relax." "Did you set the alarm? We need the alarm set?" "Yes, dear. I set the alarm." And on and on and on.

All of these scenarios are mixed with moans from gas pains, requests for drinks of water, and complaints of an ache or pain that is there one minute and gone the next.

Another night Kevin hollered at me, "Kathy!" "What?!" "Come help me open this shed door," as he is pulling on the side railing of his bed.  "You are in your bed. It's okay. Go to sleep." A few minutes later he is plucking at his bedding and stating, "There is something wrong with the upholstery in this vehicle.  Help me get out of this car."  Still later he claims he is setting up the kitchen.  He needs buckets for the utensils.  I crawl in bed with him again and get the bright idea to ask for "a break." In our former life, if we were toiling away at a task, we would agree to "take a break" for a certain amount of time.  I would lounge on the couch and he in his recliner.  Since Kevin was hell-bent on setting up this kitchen, I decided we needed a break.  Every time his head started to toss or his right hand went up in the air, I would say, "Can we just have a little break? I could really use a break."  Eventually, about 4 am, it worked, he was sleeping. Success!

The following night, after yet another series of crazy adventures, I thought I would try my tactic again.  "I need a favor. Can we just have a little break?" Kevin retorts, "Break? I'm just here for a color test!" Sorry for the language...but what the hell??? Although these stories are humorous to me now, I don't find them funny at the time.  I stink as a nurse and my patience leaves everything to be desired even when I have a full night's sleep.  After multiple nights, with snatches of sleep here and there, I am pleading, "Just go to sleep!"  Thankfully, he remembers none of any of this in the morning.

Are we trying drugs?  Yes.  At times it was a guessing game. Other times I had a concrete plan from the hospice nurses of what to give at what times.  In all cases, haloperidol, lorazepam, morphine and sleeping pills have not worked. After talking with others, the lorazepam seems to have a history of causing hallucinations, so we no longer have that drug as an option.

Do I have help? Yes.  Others, especially Kailey, have offered to take my overnight shift.  My issue is that we don't have a set plan yet that works.  If I knew that Kevin gets this drug at this time and this one at another time, I could feel more comfortable letting someone step in.  As of now, it is still trial and error with the never ending hope that tonight's method will work.

Our biggest joy each day is our visitors.  People continue to take time away from their busy lives to schedule a visit with us.  For me, that would be a tough thing to do...what will I say? what will I do? what will I see? But so many of you are such good people that you don't let your fears cause hesitation and you reach out to us.  Thank you.

Kevin is ready to go. He doesn't want to live like this.  I am ready...that's a lie.  I continue to live day by day, afraid to look into the future.  It's just too scary without Kevin. But I know this is not the life he wants to lead and I am not cut out to patiently provide the kind of care he needs. God will decide the right time.

Throughout all of this, Kevin still retains his sense of humor.  He may not remember much or struggle to find a word, but then he will throw out a line that will have all of us chuckling.


Tonight I am thankful for:

• Medications that give me hope that tonight could be the night he sleeps through the night (or at least a couple of hours).
• Making Fettuccini Alfredo tonight with Kailey and following it with a glass of wine.
• Short term memories so there are no hard feeling for my impatience.
• Not having to go to work the next day after a night with no sleep. Not everyone has that luxury.
• My mammoth blanket (a huge brown furry blanket) that I curl up in to search for sleep, whether it be on the couch or Kevin's bed or the dining room floor.
• That my car has not had to leave the garage during these days of rain, ice and snow.
• Supportive family that we know will be there when we need them.
• Visits that include updates and stories and laughter.

"Therefore do not worry about tomorrow,

for tomorrow will worry about itself.

Each day has enough trouble of its own."

Matthew 6:34

"Praise be to the Lord, to God our Savior,

who daily bears our burdens."

Psalm 68:19

A Year of Learning

Although I've always believed in life-long learning, this past year has pushed my learning on a personal level more than I could have ever imagined. This post will be more about me, because I cannot speak for Kevin. But I have a hunch Kev would agree with me in most cases.

What I've Learned This Year

Medical care is not a spectator sport.  It requires listening, questioning, note taking, researching, and decision making.  We so rarely saw a doctor in the past that we just did what they said, without a real understanding of what was happening or asking any questions.  Please don't think I am speaking negatively of doctors. I have the utmost respect.  But I now know, after Kevin dealt with multiple professionals, that it is our job to be informed and make sure all involved know the complete story.

I have a lot of work to do when it comes to my faith. Church and prayer have always been a part of my life. However, this past year I've witnessed the strong conviction and practices of many people and I want to be more like them.  It was a step for me to include a Bible verse in each blog post. Unlike some of you, I don't have passages committed to memory nor can I easily access them in the Bible.  Instead, I have to research.  Someone said to me many months ago, "I didn't know you were so religious."  I replied honestly, "I'm not, but I'm trying to be better."

When push comes to shove, I can do things I had never thought about.  For someone who ALWAYS knew that anything medical was "not my thing", who would have thought I would be giving shots twice a day or helping a hospice nurse put in a catheter. (Okay, let's be real.  "Helping" meant handing her items, attaching a syringe, and holding Kevin's hand. But at least I wasn't hiding in the other room).  What at first turned my stomach to jelly becomes easier over time.  Realistically, what I think is a "big deal" for me, some people are doing day in and day out. I just need to buck up.  

Time for a little tangent...it bothers Kevin and I when people say we are strong.  We just don't get it. We are going through life a day at a time.  Yes, life is hard right now, but we aren't doing anything extraordinary.  We are doing what anyone else would do...put one foot in front of the other and keep moving. Our journey is more public than others because I write this blog, but please don't make us out to be any stronger than any one of you.

Work is work. Kevin and I have a strong work ethic. We rarely took days off or used our sick days.  I still value that trait but now realize there is more to life than work.  I'm trying to put family first.  Of course, I write "there is more to life than work" but I already know that in all likelihood I will be filling my life with work once I am alone. 

Live a little. Boy I have a long way to go on this one. I envy people who just go and do.  I worry about the logistics or the expense or the whatever. Thankfully, over the past year, people have helped us to go and do and make memories.  

You never know what people are going through. Okay, I  knew this on a surface level but never really felt it before.  People are getting up each day, putting a smile on their face, caring for their family, going to work and seemingly living a "normal" life.  But behind the scenes there may be so much more going on that none of us could even imagine.  What leaves me feeling guilty is that, through the years, friends, family, co-workers and neighbors have faced struggles and I did nothing to reach out because I really had no idea life could be so hard.  When you lead an easy life, it's hard to relate, but that shouldn't be an excuse. I should be compassionate enough to recognize hardship without having to live through it.

People are amazing. We still cannot wrap our head around how much people have done for us and continue to do for us.  Cards, letters, food, visits, kind words...it is incredible. On a regular basis we hear, "we pray for you every day." Every day. Wow. It is heartwarming for all of us to know Kevin has touched your life in a way that you want to reach out and help. Thank you.

Now that leaving the house is so difficult, we appreciate the visitors.  If you decide to stop by, please don't feel you need to bring anything.  We have plenty of food.  Your presence is enough.  

The things you have learned

and received and heard and seen in me, 

practice these things, 

and the God of peace will be with you.

Philippians 4:9