Rod Mulder — The New Normal

We started to realize that if Rod was in the bedroom, we couldn’t hear him if we were more than a few feet from the bedroom. Over the next couple of days, the house was quiet. Except for a night I spent at home in Erie, I worked out of the office while Jane and Laura did puzzles within earshot of the bedroom.

An old friend called a couple days later from Lake Geneva, WI to see how Rod was doing. After a short call, he called back announcing that he had plane tickets to come out to visit. The day before John came out, Jane and I helped Rod get into a better and more upright position in the bed. It was an engineering feat that was surprisingly similar to what they had to do to get the Costa Concordia righted. We noted that he couldn’t really roll over on his own anymore. Hospice agreed that we needed a hospital bed and it was arranged that one would be delivered on Thursday.

John showed up Wednesday and immediately I noticed that he was a better and nicer person than me. I joked that he was the nicest person I’ve ever met. No one disagreed with me. On Wednesday, he sat with Rod a couple times. On Thursday, a hospital bed was delivered and Rod moved over. Laura took advantage of a break in the weather and made a run to Loveland to attend a support group. John came over to visit with Rod and Jane left him alone. I don’t know where I was but when Jane got home, Rod was asleep in the hospital bed and John was passed out on a couch. I think this is what men who are nearly in their eighties do when they visit each other. I look forward to it.

We put the hospital bed in the dining room. After taking almost all the leaves out of the table, we turned it sideways in the room and shifted it to the side. John and I used some velcro straps of mine to tie the light fixture up and out of the way. Jane is very upset that it is not perfectly level. Jane is learning to live with disappointment.

Almost immediately, the hospital bed was an improvement. I’m probably wrong, but he is in fine health except for the brain tumor. His parasympathetic nervous system and the organs that it governs are solid: liver, heart, kidneys, digestions, et cetera. It is the systems that are controlled by his brain that seem to be failing. This includes swallowing and breathing. When he lies flat, the swallowing and breathing issues are magnified. Once propped up, he seems to be clearer and not like he drowning.

This is my blog and I feel like I need to talk about me a little. We noticed that Laura is a stress baker, Jane eats when stressed, and I like to work out. The Estes Park Aquatic Center is very close to the house. On Monday, I hit the pool and copied a workout I just recently did in Boulder. Jane and I went to MedX to work out one day that week. On Wednesday (I think), I went back to the pool and hammered out 3 kilometers straight which is the longest I’ve ever swam without stopping. It was cathartic to just zone out and swim.

About this time, I started writing daily updated to family members:

28 February:

The house is calm and quiet. Rod is in a hospital bed in the main room of their house. The dining room table has been moved over to make room.

His voice is a whisper but when he is awake, he is alert and interactive. He is, however, rarely awake. His appetite is good and he is thirsty. The latter stages typically involve little input but we have been learning that brain cancer is atypical. Whereas usually all systems shutdown together, when the brain fails first, the automatic systems and organs remain healthy causing an asymmetrical reaction that is confusing to all. His vital signs are great which contradicts his inability to move on his own. Fine and gross motor skills are failing as is his ability to read and concentrate.

There is no pain and he is in good spirits. He is concerned with the car maintenance and things around the house that need to be attended to. He loves to hear about the weather and cries whenever we read letters to him.

A friend of Rod and Laura’s for nearly 40 years came out for a visit which was very nice. He was in town for a couple days but only spent a couple hours with Rod. Curt and Carrie came up last night and brought lots of food (which they left) and had a nice but also short visit.

It looks like Jane and I are relocated to Estes Park for the duration which is fine. I think our Europe trip is off though we haven’t officially made the call. Yesterday I discovered that we had burned through all of their internet’s data plan and had incurred over $300 in overage fees. I moved quickly to get AT&T on the phone and retroactively upgraded their plan to get that knocked down to about $60 of damage. I am working with three local companies to find a solution that will allow me to keep working from here without nearly the cost. It was a real “pit of the stomach” moment when I realized what was happening.

1 March:

I am locked in the office as Laura and Jane deal with some, um, business. Yeah, use your imagination. Business was done, let us say. He wanted to make a trip to the bathroom but he doesn’t have the strength for that and the wheelchair can’t get through the doors. It was clear that he was disappointed. Still, Jane is a pro and Laura a saint. I am neither so I stayed away.

When Rod woke up this morning, he told Laura he was sad. In what I believe is just an amazingly beautiful metaphor or something, Laura decided pancakes would cheer him up. I got all verklempt. Look, we are out of tools here. This is profoundly sad and what can you do? Laura reached into her bag of tricks and pulled out pancakes.

Laura and I went to church this morning while Jane held down the fort. Before we left, Rod was talking in his sleep repeating “oh my goodness” in a surprised and delighted whisper.

At church, their friend Steve prayed for them and it was beautiful, powerful, and wonderfully appropriate. Laura spoke to some people before the service but before the last song was done, we were out the door. Laura had had enough by the end.

Jane and I snuck out for some brunch of our own. When we got back, I got to work on the office. Rod, however, was in a talkative mood. Though his eyes were closed most of the time, he would latch onto something said and offer his opinion or even a joke. Knowing that I was working on his computers, he kept calling me back (through Laura or Jane) to tell me some hint about how things were put together. He is also very concerned that Laura get the struts fixed on her car and that we get the printer fixed. He needs to know that Laura can do Quicken, the accounts are balanced, the computers are in working order, the car running, et cetera.

To me at least, he is also very interested in the grandchildren. He likes stories about them and enjoys reminiscing. He is proud of all their accomplishments and seems to relish the fact that they are all so different from each other. Our conversations are short and end sort of abruptly as he dozes off.

Music–or should I say, muzak–plays constantly. Jane and Laura sit a few feet away from Rod and do puzzles continuously. Rod asks for cookies and sips of Diet Coke. Laura insists that he eats healthy. Jane and I sneak him cookies.

Today was his best day in a week. The last half hour was pretty rough for Jane and Laura, but until then, it was good. I hope we get more good days.

Pancakes. Who would have thought, right?

On Monday, I commuted to work in Boulder. It was a good idea the night before when the weather was predicting no snow but, of course, it snowed. The drive was OK except for the Texan that sped through the towns (where the roads were completely clear) and then slowed to a crawl when there was even a hint of dust on the roads.

I got very little done at the office beside talk to people which is part of my job so that was fine. I left at about 4 to go run a couple errands, pick up stuff at the house, and meet the St Vrain Chain Gang cycling group in Longmont so that I could get the club’s kit that I had ordered. I dropped off one of Rod’s old computers at CHaRM in Boulder and headed home. Jeremy wasn’t there and I quickly got what I needed put together and headed out the door. Up in Longmont, I actually had a call with Jeremy who wanted to talk. I reversed course and had dinner with Jeremy where we talked about his grandfather the whole time.

3 March:

Rough day today and it followed a rough night. My first impression this morning was that Laura looked sad and tired. Rod hasn’t been very communicative in any sort of conversational way. There is lots of talking in his sleep and moments of alertness that don’t stick for long.

This morning, I came down the stairs to find Laura at Rod’s bedside. We nodded at each other but the look in her eyes said that something was happening between her and Rod. I snuck into the office and kept quiet.

A little while later, I emerged with the intention of foraging for food. A few minutes out of the office convinced me I could wait. Whatever was happening was not finished. I tiptoed back into the office and waited. I learned later that he was restless but her presence calmed him.

Some of what Rod is saying in his sleep or twilight is disturbing. He calls out for help seemingly in distress. But then the moment passes and he calms down. The outbursts are wearing on Laura the most.

I spent most of the day out of the house finding the hotspots around Estes Park (a new connection will be installed Thursday morning). It has been angrily snowing all day but without much accumulation. The day has been gray and depressing which I don’t think is helping the mood in the house. Jane and Laura are doing puzzles with a vengeance.

I made cookies tonight and Jane made dinner. In the middle of dinner, Rod woke up and, um, business is now being attended to while I again am hiding in the office.

The tentative plan for tonight is to sleep in shifts with someone always in the room with Rod. He seems most distressed when he can’t see Laura or Jane.

Laura asked me to pray before dinner. I prayed for strength and patience, mercy and grace through us and for us. The task before us is sacred and terrible as well as beautiful and trying. Please make this your prayer as well.

Sometime in here we learned that my step mother was sending us a surprise delivery of some sort of food like thing. I expected a chocolates or a snack box from Harry & David. Instead, we were overwhelmed to find a feast from HoneyBaked Ham company. I had to mention that because much of the food that is mentioned over the next couple days makes reference to that particular delivery.

4 March

Another good day! It followed a good night as well!

Just a couple notes from a thankfully uneventful day:

This morning, Rod wanted hash browns. The hospice nurse came and delayed the hash browns but then Laura came to the rescue a little later delivering the good stuff.

After dinner tonight, Rod drank plenty of decaf coffee, had a piece of lemon cream cake, and ate two cookies. We talked for a bit about some of his early jobs like climbing the telephone poles when he worked for the phone company and creating the “no. 2 pencil” test grading system that eventually became the one used for the ACT.

He is in good spirits and making many corny “dad” jokes. Having a discussion seems pretty exhausting to him. Dozing off in almost mid sentence happens a lot.

I wasn’t going to write an update but then thought it would be good to ask if he had something he wanted me to pass along. It wasn’t fair to spring that question on him after talking for so long; he was pretty worn out but said he is very thankful for friends and family.

5 March

Last night was good and today was pretty good as well. Rod has a bed sore that is sometimes painful. This is happily the only pain he has and thanks to Jane, it is pretty well controlled.

Tonight Curt, Eldon, Corina, and Lauren came up for dinner. It was a difficult time for some of us but Rod was very interactive and sociable. We were prepared with a plan for if the night became too much for him but didn’t need to put it into action. We know that commotion and loud noises can be distressing for brain cancer patients. Though there was a point where we did feel we had to dial the volume down, Rod seemed to enjoy listening to the conversation around him. After everyone left, he said that listening to us made him forget about what was happening to him.

We, correction, I went through an incredible amount of the ham tonight. Two helpings while everyone was here and then after they left and my shame could be limited to just Jane and Laura, I attacked it again.

Rod and I chatted for a while after everyone left. The conversation covered topics like his first beer, time working the fields in his youth, and what they did for fun when he was a young adult in northwest Iowa. He’s been teaching me to swear in Dutch. From swearing he segued to reciting a verse from a hymn.

Jane and I are going to make a trip to our house tomorrow to pick up supplies (Brachs Chocolate Stars, for instance) while the nurse and aide make their respective visits.

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