You do what you have to do in an emergency.
For example, Jeanne Campbell, who has broken bones in her legs, was sitting in her Lewisburg, West Virginia, home when a massive storm barreled through late last week and a tree came crashing through her roof.
“I just heard the thump on the house and saw the bricks flying, and I was afraid it was gonna come on down through the ceiling,” she told CNN on Wednesday.
She managed to get up and move to the center of the house. “Amazing what you can do when you have to,” she said. Source
Lance comes home
By November 1st Lance was home for his fall break. In fact he took a few extra days so he could be home for a week.
He hit the ground running, telling me he was willing to do anything to help me. Hmmm. We better start with how to empty Roger’s pouch.
You know it’s funny. Of all of our kids, I thought Lance would be the most reluctant to deal with this. To my surprise, he was ready and willing. He reminded me that he had subbed at Sunnyside many years ago while he was living at home working on his Master’s degree. There he diapered many severe and profound students. He could take care of his dad.
He was right. I demonstrated; then I watched him do it. Yes, he was willing, ready, and trained.
I left for a singing, and Lance took care of Roger like a pro. It sure was good to have Lance at home.
The next morning I had another singing so Lance helped me get Roger up and changed. He also gave Roger his pills. It’s odd how roles reverse. That’s a cliché, but true. When Lance was a kid, he had the hardest time swallowing pills. In fact it was a federal case to get him to take antibiotics. Roger tried just about every method to get those pills down. Lance said that one time Roger tried to put them in ice cream; another time he tried to give them with Fritos. “He was definitely very patient with my miserable pill-swallowing skills.” It was time now for the son to be patient with the father.
When I got home from singing Lance debriefed me on the morning.
- Roger is 60% of the time “vacant.”
- Sometimes he will surprise you and be “with it.”
- Says a lot of non sequiturs (That’s from my “PhD in English” son. For those of you who need a definition, like I did, here you go)
non sequitur / nän ˈsekwədər/ noun: a conclusion or statement that does not logically follow from the previous argument or statement.
- Occupies himself with yellow post it notes and arranging and folding and copying what he sees
- He can read; but he reads things randomly and without purpose.
- He is still ambulatory.
- He still shakes.
- He is not aggressive. He is very amiable and pliable.
- He knows what he wants; he doesn’t say yes to everything.
- Echolalia is present. (That’s from me. I sat in many IEP meetings where the speech and language teacher used that term.)
echolalia /ˌɛkəʊˈleɪlɪə/ noun (psychiatry) the tendency to repeat mechanically words just spoken by another person: can occur in cases of brain damage, mental retardation, and schizophrenia
We cut his large pills in half. He still had a hard time getting them down. Or even knowing that they go in his mouth.
In the middle of the night the Lord woke me up. Roger’s pouch was so full–about 750 ccs. He didn’t want to get up, so I emptied it at the side of the bed as he sat up. It worked fine. And I started see that the ostomy pouch was a blessing.
The next morning I got Roger showered with Lance’s help. Roger could stand under the shower and wash a little bit, but I knew then I could not get him showered without assistance.
Lance shaved him with an electric shaver. Perfect. Much better than me doing it with a blade.
We three did some errands: blood work, Monical’s for pizza, the bank, Bath and Body, the Post Office—Roger slept any time he was in the car. We even stopped by the cemetery to see the headstone we had ordered in April. Lance took some great shots.
I laid down and slept. For most of the night. It felt so good. Roger woke up and said, “Did I tell you that I worked out the situation with Lance? The horses will be ok. I didn’t know but we could do it all with separate computers.” Lance had said that Roger had moments of clarity, but they were few and far between.
The Next MRI
On November 5th we left for St. Louis to get the all-important MRI at Barnes. It would give us the “baseline,” and help us determine the next steps in treatment.
Roger slept the entire trip. When we arrived at Scott’s after the MRI, Scott and Jess both noticed a big deterioration from when they saw him three weeks prior.
Before we went to bed than night, the family held a conference call. It was a sweet call. Everyone was worried about me. Lisa suggested that I spend the weeks at Scott’s and she could come home on the weekends. She was worried that I couldn’t handle things. I’ll admit that I got more and more afraid when I was alone with Roger. All of the kids thought that it would be ok to stop the treatment—in fact they recommended it. They could see that I needed help and if treatment was stopped, we could get hospice involved. As hard as this is to say, I was relieved that they gave me the “permission.” Permission to do what I would eventually have to do.
November 6th–Results Day
Roger, Lance and I sat in that room and heard the doctor say that she was very surprised with the results. There was a lot more swelling and she couldn’t tell if it was edema or the tumor. Here’s the email I sent to our family.
Dear Family and Friends across the miles,
We went to St. Louis to get an MRI, bloodwork and a consultation with the doctor. She wanted to know how he was doing, and we told her that he has become quite distant and unable to hold conversations. He mumbles incoherently at times. We also told her that his executive functions and physical abilities have declined over the past two weeks. She gave him a few simple test questions and he was not responsive, which surprised us. (Lance’s personal theory is that she didn’t give him enough “wait time” to process what was going on, especially because after the doctor left, we asked him the same question about how many fingers we were holding up and he answered it just fine.) Then she started talking about kidney function, the fact that it was too low to recommend another round of chemo pills. After discussion, we understood that he needed more fluids to remedy this situation, and so he is now scheduled for two visits a week for infusion at St. Mary’s in Decatur to help with that.
She then talked about the swelling in his brain from what she saw with the new MRI. She eventually said that there was approximately 50% more growth since the last MRI in July. They expect swelling after radiation, but his was more than what she expected. She expected he would do better because she said most people rebound, and the swelling goes down after a few months. However, she was not confident that his would go down without treatment, so she suggested high dose steroids, twice a day. We all agreed that we couldn’t tell if it was edema or tumor growth that was causing the swelling. The doctor said that if the swelling is from the radiation, we would see a marked improvement in Roger’s condition after 5 days. If not, we just assumed that meant it was the tumor that had grown significantly. We were encouraged that we wouldn’t have to wait a considerable amount of time to find out if the steroids would work. (We will know if the steroids work if his cognitive function improves.)
So that is our plan. Steroids. And if he doesn’t show improvement in the next five days, I will call. The doctor mentioned briefly another backup plan if the steroids doesn’t work, but I was not really confident in trying that other backup plan. So we shall see. The doctor also made an appointment to see Dad again on November 20th. She did mention looking into finding us an oncology contact at St. Mary’s, so we shall see what comes of that. Bottom line–we left with a script for more IV hydration and steroids. The doctor is not opposed to talking about hospice when the time comes, but Lance and I think that we would like to discuss hospice after this round of steroids if it doesn’t work. We will know more about the situation come next Tuesday.
In the meantime, I am figuring out who can watch Dad when during this week when I need to be away. We hope that maybe the steroids will help with his ability to swallow pills. We were happy to discover that the Keppra is available in liquid form, and we will be picking that up tomorrow. Lisa says she plans to come home on the weekends for a while. Bruce and Jody come Saturday. An Alabama friend comes Monday to Wednesday morning, so that should help some. Dad continues to follow direction and instructions, but he needs constant supervision to follow through with the instructions and is a little weak on his legs. We are thankful, though, that his legs and arms still work and that he can help us dress him and move him around. MAMA
We traveled back to Decatur and I took Lance back to Bloomington to fly out. We cried. It was our year to have the kids home for Thanksgiving. Just like when Chad left, Lance and I exchanged a mental message: “Will we have a normal Thanksgiving, or will we be making funeral arrangements?”
I was alone. Thankfully Roger slept the whole night.
It was the anniversary of Roger’s dad’s death. He didn’t comprehend it.
I kept looking for a great awakening with the steroids. Nothing.
We went to get fluids at St. Mary’s, and it was hard for me to drop him off and go find a parking space. I worried about what he would do or where he would wander. In retrospect, I should have used valet parking.
That evening when I returned from another rehearsal, the Gruens said Roger was a little hard to get to bed that night. He paced, turned the lights out, and stood at the closet door trying to use his zipper to turn in the closet light.
I was a little afraid that he wouldn’t sleep after the steroid, but he eventually sat on the bed and then laid down.
State of Grace Trio has been a great thing for me. They were like family (they still are); it provided me with time to be away from Roger without neglecting my responsibilities. Months later I understood why God placed me with them.
Now it was Lisa’s turn to come home.
Love you, Mama. You are such a courageous and brave and thoughtful woman. I love that you’re doing this.
I’m not sure it’s courageous as much as therapeutic. Good for me to get my thoughts down, and good that I can keep daddy’s memory alive.
This one made me cry more than all the others combined I have no words as to why I know one part is Lance’s help The visual of him standing there and helping his dad It just touches my heart