Feelings are much like waves; we can’t stop them from coming, but we can choose which one to surf. Source
I would add that emotions are like the waves in storms. The ones you choose to ride may be overwhelming, but you can survive if you don’t fight them.
Roger has four siblings, two brothers and two sisters. Three of those four live near the farm in Indiana where they grew up, and his older sister Eva lives in South Carolina.
On a side note, Eva was an ICU nurse for many years. When Roger was near death and needing a liver in July 2012, she traveled to Barnes to see him. It wasn’t two minutes after she entered that ICU room before she was checking machines, labeling his bed, and explaining how things should be done. It was so comforting to have her there. But, as I said before, the rest of that story is for another blog.
Elaine, his baby sister, and her husband Mark made a day trip to visit Roger, and while he seemed to know them, he didn’t completely make the connection of how he knew them. I enjoyed listening to Roger trying to remember the names of cows and dogs that they had as kids on the farm.
Elaine made Roger’s favorite kind of Rice Krispie candy; all in all it was such a nice visit.
Then they left.
Then Lisa left.
I thought I would cry, but I didn’t as much as I thought. I kept thanking God for allowing Lisa to be with me so long. After she left, Roger called me Lisa several times. He couldn’t remember who was at our house; several other things showed me that his memory was declining steadily. But still he said he loved me and was thankful for all that I did for him.
You must realize by now that our four children are wonderful. Even though they live so far from us, they all wanted to help as much as they could. The fact that Roger could not be alone made them want to be available to give me some respite. I look back now and see how much I needed them.
Stephanie, Chad’s wife, had teachers’ meetings for a week, so Chad and the kids spent that week with us. They were to arrive on Monday, August 18th, so I spent time cleaning and organizing things that day. My journal showed that each day brought more signs of declining executive function as well as leg weakness.
I had thought we could run into town and get a soda before Chad arrived, so I told Roger to go to the bathroom before we left. Later I found him urinating in a tub where I kept the towels. Grrrr! On the way he took a swig out of his little water bottle that he used to rinse his pouch. It was as though he was a kid that needed constant supervision. At this point, I began to think about who I could get to pay to stay with Roger. I would need assistance soon.
It was so good to have the kids in the house. Chad and I went upstairs to clean the office; we filled five garbage bags of “stuff.” This was so difficult. Part of me felt bad for getting rid of so many illustrations that he had cut from newspapers and diligently categorized. It was like, “What if he gets better and gets upset with me?” Chad reminded me that Dad was not going to be the old Roger again. It was ok to clean. So we continued, part of me feeling good about the cleaning, and part of me regretting it!
For the first time I was a little fearful of Roger. I suggested that he go to the bathroom, and he grabbed me by the wrist. Then he relaxed. I began to wonder what I would do if I ever had to make him do something. Chad and I talked at length about the future. He was concerned about what the chemo and radiation would do and how it would affect Roger’s walking. We had been told that it would make him tired, but there were other things that could make it very difficult for me to even get him to treatment.
Chad, in his wisdom, suggested that I call hospice. We both knew it was going to be inevitable, and we both agreed that we should make an initial contact and get our questions answered. I looked in the phone book and picked out one based on its name. I was relieved when we found out that Medicare would cover all of the costs and that hospice would be as involved as we wanted them to be. They could not start services until all treatment was stopped and only palliative care was ordered by the doctor. I kept that information in a safe place; I knew I would need it someday.
One day, early in the morning, Roger said something about dying. I told him that I was a little worried about what we would do if the chemo/radiation made him so weak we couldn’t get him up the stairs at Scott’s. Yes, I was having second thoughts, wondering if we made the right choice.
He started to cry.
He said, “I don’t want to die.”
I said “We don’t want you to die either, but this cancer is going to take you. We are worried that we are doing the right thing with the chemo.”
He said, “Well, if it doesn’t work, we’ll just have to stop. If we have to, we will stop”
I made him repeat it to Chad, and we were both amazed at his clarity of mind. It confirmed to us that we were taking the right step, but that we could stop if necessary, based on his wishes.
We were going to Kroger’s for medicine, and before we got in the car Roger was looking for his phone. I couldn’t find it so I said, “Let’s just go without it. We will be right back.” We got in the car, and this was the conversation before we drove out of the driveway.
Him: I really can’t find my phone.
Me: I’ll try calling it.
Me: I hear it. It’s in your pocket.
Him: (feeling all of his pockets). It’s not there.
Me: I’ll call it again.
Me: I still hear it. Check your pockets again.
Him: (emptying his pockets). I don’t see it.
Me: Get out of the car. I’ll call again.
Him: (gets out of the car)
Me: I still hear it. It’s got to be in your pants. (Gets out of the car, walks around to him, hears the ring, feels the pockets, and….)
Me: I found it.
Him: Where is it?
Me: It’s in your shorts pocket. You didn’t take them off before you put your pants on.
Both: LOL LOL LOL
The day before we started treatments we went to church. It was a blessing to see Roger move his hands as though he was directing the congregation when we sang the hymns. He praised God verbally, encouraging the choir, singers, and preacher.
Then the day arrived. Chemo and radiation. The standard treatment. The treatment that held unknown side effects. The treatment that would consume our lives for the next six weeks.
We cried in bed. We hugged so much. I reminded him that this illness was terminal. I cried. I said I didn’t want to be without him. I didn’t know what I would do without him. I would miss him so much. He cried, and said that he thought he would be around five more years. I told him that with treatment they expect maybe 14 months. Without, maybe nine. Or less.
I reminded him that when others were going through a family terminal illness, he always told the family that they would be teaching others about life and death. I was determined to follow his instructions and try to be an example to our children.
We cried. Quite a bit. He told me I was wonderful and that I was the best thing that ever happened to him. He said that I had been so good to him.
Our morning medication routine became different for me. There was so much extra “waiting time” to get certain things in his system without food. I didn’t sleep too well that first night, worrying that I wouldn’t wake up at the appropriate time, even though I had 5 alarms set on my iPhone. I gave him the first “poison pill”. That’s what we called it. He didn’t have any odd feelings or side effects…yet. That was a blessing.
We finally got on the road, headed to St. Louis, and after several pit stops (literally) we arrived at the radiation place. While we were in the waiting room I asked him if I should hang on to his phone while they did the treatment.
Him: Where is my phone?
Me: Oh, no, here we go again.
Him: I don’t know where it is.
Well, being a quick thinker, I decided to try to locate it with the “find a phone” app. BOOM! It worked! It appeared that it was someplace in Applebee’s by the hospital. I immediately locked it, turned on the lost phone message and decided to worry about it later.
He returned from the treatment, and I asked how it went. One advantage of having short term memory loss is that you don’t remember things you might want to forget. I asked what the custom woven mask was like that they put on him, and he gave me a blank stare.
When we arrived at the car, I dialed his phone.
Me: Yay! I hear it! (I looked all over the car, and finally found it on the floor between the seat and center column.) Why Applebee’s??? Oh, the restaurant was under the garage!
So that was the beginning of the treatment. We were exhausted, but thankful for the lessons that we were learning.