At this point, I am marking the days. That means that I look at the date in my journal, and, since I know when the brainstorm ends, I can count how many days are left. Mind you, while I lived this in real time, I didn’t have that perspective. But now I do. And yes, the storm is almost over.
I’m sorry if there are so many references to “pee.” Maybe it’s the “mother” that is coming out. It’s a basic bodily function, but when a human being, whether a child or adult, can’t take care of himself, they must be helped. I couldn’t stand to have Roger wet with urine. I’m sure the cleanliness bothered me, but I mainly wanted him clean and comfortable.
November 18, 2014
I woke Roger up the night before to give him his medicine at 8:30 pm, and he was soaked. I got him cleaned up, and then I woke up at 3:00 am. I checked on him, like a mother does her baby, and his ostomy bag needed to be emptied. I emptied it and, though he was wet, I thought I’d just wait until morning to clean him. I laid down. And then got up. I couldn’t let him lay in pee.
I had decided that I would tell Nurse Beth that a catheter was needed. He would feel cleaner, and it would relieve a lot of stress.
Communication now consisted of hums or grunts. I gave him a sweet roll before noon, and he said, “Mmmmm…me…meat…meat…meat…” I asked, “Meat?” He said yes, so I gave him beef and noodles.
Changing him is still hard. I rolled him to get his clothes off, but eventually he had to stand. He did it haltingly.
November 19, 2014
I was grateful for the wheelchair; however, I got discouraged trying to get him out of the wheel chair. It was horrible. He couldn’t help, and I couldn’t lift him. Finally, by the grace of God, he got up. I changed him, and got him to bed. He stayed in bed, and by morning he seemed stronger. I cleaned him up, put him in the wheelchair and he had breakfast at the table. At noon, again, I couldn’t get him out of the wheelchair—even with a pillow on the seat.
Somehow I got him to the edge of the bed. Getting him to lie down was horrible. He didn’t move his arms. It was like he had a stroke, but in his entire body. He was just dead weight.
- He forgot how to brush his teeth.
- I began feeding him because he couldn’t remember how to use the fork.
- His fingernails began to look blue.
- He coughed while he slept.
- I asked him if he could say my name, and he could barely get out “Glenda.”
I thought back to last week and realized Roger had really gotten worse. My friend Kathleen came and stayed with him while I went to the bank. The kids were planning on coming for Thanksgiving, which was the next week. I was really looking forward to that.
November 20, 2014
Sounds odd, I know, but I was pretty excited for this day to come. It was the day Roger would get his catheter. Nurse Beth came in the morning, as well as the chaplain. I went into the bedroom with her and she looked at him. While the chaplain stayed to talk with Roger, Beth brought me out into the dining room and said that Roger was declining and his time would be short. She didn’t want to state a time frame, but eventually she said, “About a month.”
We were told to stop all liver meds. What an event that was. For the past three years we were on such a regimen to keep his liver functioning, and now we were told to stop. It was another “nail in his coffin” so to speak. That sounds horrible, I know. But it was just another example of how we were now “not” keeping him alive.
Beth put the catheter in, and I was so relieved. I thought, “At least I don’t have to worry about rolling him over and changing his Depends.” Don’t get me wrong. I would do it if I had to, but I was wearing down. At this point I couldn’t get him out of bed. His leg muscles were so atrophied; I didn’t think he could support his weight at all.
I had an interesting visit with the hospice chaplain. He had brought his guitar and had seen the videos that Lisa and I had done. Evidently they had gone viral in the hospice office. Well, I may have mentioned the videos to the social worker during one of his visits. The chaplain stayed and chatted. I cried a little. He did his chaplain stuff, nodding and listening.
Ashley, the CNA came and gave Roger his bath and shaved him. What a blessing hospice was. She said she planned on coming three days a week and told me that I didn’t have to worry about bathing him because he didn’t have a body odor. She would take care of that when she came.
Ashley had brought a different kind of Depends, but the joke was on us. He didn’t need them because of the catheter!
Good friend Erin brought some homemade soup. As I was feeding Roger the soup at about 5:30, he started to shake, and his face got real flushed. There was blood on his hand, and I discovered that he had pulled out that catheter. The catheter that I was so happy to have! Hmmmm. I guess it was not all about me!
It was a mess—blood everywhere. I called hospice, they called the on-call nurse, and she called to see if we wanted it reinserted. Nurse Beth had said that she used a smaller balloon/bulb, and there was a larger one that would stay in better.
I pondered it. It’s a painful thing to go through, but not knowing how long he had to live, I thought we had better give it another shot. Boy, was that a bad idea. He was hurting as she tried to insert it, and I had to hold his hands. And the thing was just not going in. We gave up, got clean clothes and sheets, and put Depends back on him.
My singing group, State of Grace, graciously came to our house to practice. It was so good to have them there, but I was emotionally spent. My heart wasn’t wanting to sing, and I was on the verge of tears. Like the song, God heard me sing when the waves were crashing around me…I just didn’t sing too well.
Mike and Della stayed and put in the dead bolt lock on the office door. My plans were that if I had to have someone stay with Roger, I didn’t want them to have free reign of the house.
They left at 10:30 PM. I was discouraged. Roger’s bed was all wet and bloody with residue. I didn’t know how I was going to clean him up by myself, but I would do what I could. I asked him if he was hurting. He said no.
There I was, praying that God would be merciful to Roger and just take him home, and boom! I see a status update on someone’s FB.
The most evil thought….desiring the death of another for personal convenience.
The statement could have been directed at many different circumstances, but I know at that time it was meant for me. I was convicted and said out loud, “Lord, I don’t want Roger’s death for my convenience. Lord, forgive me. Take him in your time. Your perfect time.”
November 21, 2014
A day of friends.
I got Roger cleaned up; and the rest of the day he was in bed.
- Good friend Karla came by to talk and brought me lunch.
- Good friend Teri came by and brought me a soda, Depends and laundry soap.
- Good friend Tonya came by and brought me a soda, some applesauce and cookies.
- (Did I mention I LOVE fountain drinks, and I believe everyone of my friends
- Good friends Dave and Delores came by. Dave had come by earlier in the morning with flowers and asked if there was anything he could do. I had some drawers that needed fixing so he had taken them and brought them back, all fixed! Delores visited with Roger and even got him to laugh!
- Good friends Mike and Della came by with a soda a supper. They stayed with me until Lisa arrived from Green Bay.
November 22, 2014
It was our year to have Thanksgiving at our house. Having daughters-in-law means having to be a little flexible with holidays. I have never been much of a “possessive mother-in-law,” so everything always seems to work out. About every other year the kids, if they can, come to our home for Thanksgiving. Lance lives in SC, so he doesn’t usually make it, as Christmas/New Year’s works out better for him and that long trip.
Lance had made the decision to come this year based on Roger’s prognosis.
By Saturday morning, November 22, 2014 Lisa, Chad and Stephanie and their kids had arrived. Again—a wave of relief. Scott and Lance were planning on coming sometime on Tuesday or Wednesday.
That morning furniture got moved around, and, as I stated, it was so good to have the kids here and help.
I went to a “Ball Brothers” concert that evening, and when I got home there was a noticeable difference in Roger. His eyes were puffy, his face was red and little distorted. His tongue was not good. It was as though he wanted to talk, but couldn’t. Just different than the “norm.”
Stephanie was able feed him meatloaf and green beans.
The thought occurred to me: What if he dies before Lance and Scott get here?
That old tumor was getting him. We didn’t call anyone at that time because he didn’t have any emergency symptoms. I just thought it couldn’t me long God would be calling him home soon. I just didn’t know if he knew how close he was to meeting Jesus. I didn’t want him to be afraid, I just didn’t want him to be alone.
This is so hard reliving this. As I typed the section about Roger meeting Jesus, I broke down and cried. Wailed. Sobbed. It makes it so fresh. I thought I was doing pretty well, but that deep-rooted pity, remorse, sadness and grief easily surfaces.
You are so strong, Mama. I love you so much. Thank you for writing all of this down. You are and will be an encouragement for so many people. Love you.
Thanks, Lance. I love you, too!
It’s difficult to read, because I remember reading much of it in an email from you. Glenda, you are waaaaaay stronger than you give yourself credit for.
Diane that you for reliving this with me. You have been such a dear friend to me.