A bit of civic duty and a touch of the caregiver blues

February 28, 2016. Although Dad had attended church last week for the first time in almost a year, he opted to stay home today while Mom and I went to church. Stan spent a little time in the backyard and used the tiller to work over the soil in the vegetable garden. Before he left Temple for our home in Houston, he and Dad played a couple of games of cribbage.

After Stan left, I fixed dinner. Dad had two appointments tomorrow, which would prevent me from working a full day tomorrow, so I worked a couple of hours before dinner.

civicCross2February 29. Today was Sadie Hawkins day, otherwise known as leap day, and I was going to be back in Houston with my husband before the end of the day. While I was working, Dad came into the office, intent on finishing a letter to Shell about the Locke Scholarship that he funded. Mom had drafted the letter and I finished applying edits and some formatting so that he could mail it before the postal carrier arrived.

After helping Dad with his letter, I worked until 11:15 A.M., grabbed a quick bite to eat, and then packed my car for my trip home. As I left, Mom and Dad were standing together in the front yard talking with their neighbor, Jim. It did my heart good to see them engaged in normal activities.

I arrived at my Houston office shortly before 3:00 P.M. and found my new desk. While I had been living at my parents’ home, my employer had relocated the Houston office to a different building on the campus. I spent about an hour unpacking my crates and putting items away.

civicCross3After I arrived home, I called Mom, and she said that Dad had drunk some Nepro and that he had taken a shower. Not being there to ensure that his dialysis port was adequately covered made me extremely nervous, but I had to trust that he was fine. The refreshing and cleansing properties of water could also be deadly for him. I would be glad when he could have the fistula surgery and have the dialysis port removed. Somehow, I also needed to get a grip on myself and try to relax as my parents regained control over their lives.

Stan, our cats, and I enjoyed a quiet evening together. I had been away from my cats for the better part of a year and enjoyed having a cat on my lap again. Our female kitty suffered from allergies, and Stan had been the good cat daddy, taking her to the vet and administering her meds.

civicCross1March 1. Today was Election Day in Texas, which was the primary reason that I had come home: I was going to vote. Had I been realistic about my father’s recovery, I would have requested an absentee ballot, but it was nice to come home, if only for one night. I worked for about an hour from home, packed up my computer, and drove less than two miles to my polling place. I encountered a long line that moved quickly and finished voting just 14 minutes after the polls opened. After stopping by the house once again to grab a cup of coffee, I was on the road to Temple by 7:33 A.M.

I arrived at my parents’ home just as Mom was just leaving to pick up Dad from dialysis. While she was gone, I set up my computer. The house remained quiet today. Dad took a nap after lunch and Mom and Dad occupied themselves with mundane household tasks and reading the mail. I worked until Dad called me to the sunroom for happy hour.

After dinner, we played three-handed Oh Hell and spent much of the evening watching the election results for Super Tuesday.

March 2. Today we had appointments with two specialists—the gastroenterologist and the infectious diseases doctor. Shortly after we arrived at the gastroenterologist’s office, we were welcomed by Talithia, the nurse, and Sara, the dietitian. I told them that for the past two weeks, Dad had been receiving all of his nutrition by mouth. The only fluid that passed through the G-tube (PEG) was water. They were pleased, but they said that Dad would need to take all of his nutrition by mouth for at least 30 days before they would pull his PEG.

civicCross2I was concerned about the logistics of pulling his PEG and whether he’d require surgery. They assured us that it was a simple office procedure that required only a few minutes and that his stomach would heal within a couple of hours. Once again, I was amazed by how fast the body could heal itself. Talithia told us to schedule an appointment for two weeks from now to have it removed. When Dr. Timothy Pfanner entered the room, Dad told him that he wanted to stop taking so many pills. The doctor said that compared to most of his patients, Dad wasn’t taking that many different medications.

When we left the gastroenterology clinic, we took the elevator to the fourth floor to the Infectious Diseases (ID) specialist. When we saw Dr. Sangeetha Ranganath, she said that Dad looked much better, but Dad had no recollection of ever meeting her. I had met her on May 21, 2015, when she first started following Dad’s case when he first developed myriad infections. Because the staph infection can reside in his system for so long, she said that she could not consider stopping the antibiotic for at least another year. He complained about the number of pills that he was taking, and she said that he wasn’t taking that many medications. Dad had swung and missed twice this morning. I suspected that if he had had a third appointment, he would have asked about reducing his meds.

civicCross3After lunch, Mom drove Dad to the barber so that he could get a haircut. During happy hour later, he and I got into another row about me yelling at him. His hearing has been a real challenge. If I didn’t speak loud enough, he complained that he couldn’t hear me. If I spoke too loud, I was yelling at him. The bottom line was that he was tired of my telling him what to do, which was what I heard him tell Mom.

Dad might have been perturbed at me, but not enough to call off a game of cards. After a dinner filled with stony silence, we played an enjoyable game of Oh Hell, and I won.

Dad started taking his pills by mouth today. He couldn’t swallow the pills with water, so he crushed them and mixed them with applesauce. In addition to the pills, he also had to mix in a couple of teaspoons of Renvela, an expensive phosphate binder. According to Dad, the concoction was just about the worst tasting thing that he had ever eaten, and I suspected that he wasn’t exaggerating.

March 3.  I logged on to work at 3:45 A.M. this morning and heard Mom and Dad wake up about 45 minutes later. The day got off to a bit of a rocky start because Dad was still getting used to crushing his meds and mixing them with applesauce. I suspected that if the concoction were tasty, the process would have been finished sooner. However, he and Mom were out the door exactly on schedule at 6:20 A.M. We didn’t have a chance to weigh him, and neither he nor Mom paid any attention to either of his weigh-ins. During dialysis, 1,900 ml was removed, so he lost a little over 4 lbs during this session.

civicCross1After lunch, he had a short nap and was good to go for the rest of the day. Near the end of my workday, Dad came into the office, and we finished his scholarship letter to Shell. Evidently, he hadn’t mailed it earlier in the week.

After dinner, we played Oh Hell, and Mom won. During our game, we watched the Republican debate on television.

March 4. Other than my being very tired because I stayed up too late watching television, the day started out well. I worked until 7:00 A.M., and stopped to eat breakfast with my parents. After breakfast, I worked steadily until lunchtime, with only a couple of interruptions from Dad, who periodically came into the office to look for some medical documentation.

After lunch, I took a long walk along my parents’ street to view the Texas bluebonnets. After the revitalizing walk, I worked until 5:00 P.M. It seemed as if we were going to have another uneventful day.

civicCross2It wasn’t until after dinner that the day seemed to implode. Mom asked when our friends would arrive for the weekend. I thought that we had already discussed the weekend plans, but when I told her that they would be here for lunch, she became very upset. I didn’t help matters much when I asked her if I could give our friends the sheets from their old bed. She responded by saying that she had too much to do to possibly find the time to look through the messy linen closet for the sheets. She then said that she also had to bake a cake before they arrived. I continued to upset her when I offered to bake the cake.

My mother is a perfectionist. When I reminded her that she should try to limit self-imposed stress, it was like throwing gasoline on a fire. She then said that I might talk to my father like this, but not to her, which upset me. I was just trying to keep my father alive and reduce the probability of my mother having another stroke, and all I got was grief. I finally told her to get out of the kitchen so that I could take care of the dinner dishes and tidy up. By the time that I had cleaned up the kitchen, she had found the linens, which wasn’t surprising because she had the most organized linen closet on the planet, in spite of her protests to the contrary. After giving me the linens, she went to the bedroom and shut the door. I went upstairs to my bedroom, closed the door, and called Stan to pour out my frustration on him. I would be glad when he arrived tomorrow. Having him around seemed to have a calming effect on all of us.





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