May 2, 2018. The month of May seemed to be getting off to a good start. According to Mom, she had been successful in getting Dad to walk a little around the house. My heart almost stopped when she told me that she also took Dad to his barber for a haircut. Although you can park in front of the barber shop, it’s not exactly an accessible trip from the parking lot into the shop. Had I known in advance about this excursion, I would have been a nervous wreck worrying that he might fall while negotiating the front walkway. I was glad that I didn’t learn about this outing until after the fact.

When I spoke to Mom on the following day, she told me that Dad had had a good day in physical therapy and that they both liked the new therapist.

I had been in Johnson City for a workshop and had planned to spend the night there. Because I felt like I was coming down with a cold, I decided to drive to my parents’ house tonight instead of tomorrow morning. I wasn’t happy to be visiting them when I was sick, but Mom was looking forward to seeing me that weekend, sick or not. I’d had to be vigilant with my hand washing to ensure that I didn’t spread my cold germs around their house.

May 11. Mom is a meat-and-potatoes gal from way back, so for Mother’s Day, I thought that I would serve her filet mignon. I purchased some nice steaks and side dishes from Omaha Steaks for our early Mother’s Day dinner tomorrow night.  Shortly after Stan got home from work, we drove to Temple for the weekend.

When we arrived, I told Dad that I had taken care of tomorrow night’s dinner. He then told me that he had already planned Mom’s dinner, which surprised me. For many years, we had had an understanding that Mother’s Day dinner was my responsibility, although we often discussed the menu and the logistics of the meal. Now that he was confined to a wheelchair, I had assumed that he would not be able to share in the dinner preparation. Because I wanted to grill the steaks, a task better done in the evening, we agreed to have the steaks for dinner on Saturday and the dinner that he had planned on Sunday for the midday meal.

May 13. While Mom and I attended church, our husbands played cribbage. Whenever we were in Temple, Dad did not take his diuretics, which concerned me. In addition to his not taking the pills, he didn’t seem to be following a renal diet or curtailing his sodium intake. Because any mention of pill, diet, or walking seemed to ignite an argument, I tried to limit vocalizing my concerns during this weekend.

Dad had told me that he would need my assistance with the preparation of today’s Mother’s Day meal, which was an understatement. Although he had planned a nice menu for Mom’s dinner, Mom and I ended up preparing the meal. In addition to shrimp cocktail, barbequed spare ribs, green beans, and twice-baked potatoes, Dad also planned on Mom’s strawberry pie and Jell-O salad. We had a full weekend of eating high-on-the-hog. Unfortunately, as I had suspected, Dad did not take any diuretics while we were there.

May 14—17. Dad attended physical therapy today and would do so again on Thursday, three days later. He didn’t get out of his wheelchair on the days between his sessions; however, he felt especially positive after his Thursday session and said that he was getting ready to get rid of the wheelchair. I was hopeful that he had changed his attitude about exercising between sessions and that he was becoming inspired to get better.

May 21. Because his physical therapist did not come to work today, Dad’s therapy session was canceled. Unfortunately, he didn’t take the initiative to walk around the house either. When Mom tried to get him to walk the next day, he said that he was too stiff to walk. If I had been sitting in a wheelchair for 12 hours a day, I’d be pretty stiff too. I hated that wheelchair.

May 24. I suspected that Dad didn’t have the greatest physical therapy session today. According to Mom, Steve, the physical therapist, lectured Dad about the need to exercise between his physical therapy sessions. I hoped that Dad would listen more to Steve than he did to me. Dad had been out of the rehab center and had been attending outpatient physical therapy since mid-April and I could not see much of an improvement in his mobility. If anything, it seemed to be getting worse.

May 26. I had not planned to go to Temple this weekend, but something in Mom’s voice during our last phone call prompted me to change my mind, and Stan agreed that I should go. When I arrived, Dad was in his wheelchair, trying on a pair of new shoes that had just arrived in the mail. The shoe size was larger than what he had been wearing, but he could not get them on his feet. I was appalled by the level of exertion that he expended trying to get the shoes on his feet. You would have thought that he had just finished the four-minute mile. When I later asked Mom if he had been taking his diuretic, she said that he had had not taken a pill in quite some time.

My parents had planned another trip to the barber later today. Instead of taking him in Mom’s LeBaron convertible, I decided to drive him in Stan’s new SUV. We were able to get Dad into Stan’s car, but the trip from the car to the barber chair was a bit harrowing, and we practically dragged Dad the last couple of feet and into the chair. Fortunately, because it was a holiday weekend, the barber didn’t have any customers and was able to assist us. More harrowing than the walk in from the car was the walk back to the car. Once again, the barber saved our bacon and was able to help us maneuver Dad back into the car. The barber and I could barely get Dad safely to and from the shop. There was no way that Mom would have been able to manage Dad without me. Because he had been able to negotiate the walk on May 2, it seemed that his condition was worsening. I couldn’t understand why Dad and his physical therapists were not alarmed.

I could tell that Mom was exhausted, and I was glad that I was there to help her. I also decided that I was going to help Dad to walk. He was able to walk 88 feet once today, but the next two times, he had to stop and rest for a moment at the halfway point.

I asked him if he had to stop because of pain (from the hip surgery) or because of exhaustion. He admitted that it was the latter. We proceeded to have a very civil and productive discussion about his condition. Not only was he easily exhausted, but he was showing signs of severe fluid overload. In addition to having swollen extremities, his legs were weeping fluid. I begged him to take the diuretics, and I told him that if he would, he would regain some of his strength and endurance. He promised me that he would start taking the pills on a daily basis.

The next morning he took his pill, and I left feeling more optimistic than I had in quite some time.

May 29. Dad had his assessment today during physical therapy and he was approved for another 30 days of therapy. Although this seemed like good news, it meant that he was not well. Also, his next appointment was not until June 7, which meant that he had a 9-day gap between therapy sessions.

According to Mom, Dad forgot to take his diuretic today.

June 18. According to Mom, Dad had been taking his diuretics on most days since I saw him on May 26. However, he found many reasons for not taking the pills, like trips to physical therapy. Today he didn’t take a pill because he spent a few hours at the dermatologist having a biopsy for skin cancer on his head.

Stan and I left Houston to spend a week in southern California with his family. While we were there, we also visited with some of my cousins. I wanted to call my parents every day, but the time difference posed some challenges; however, I was able to call them a few times. According to Mom, Dad was taking his diuretics as he had promised me. I was encouraged and looked forward to seeing a significant improvement when I returned to Temple at the end of the month. By that time, he would have been consistently taking the diuretics for three weeks. According to Mom, his legs had stopped seeping, so he was already on his way to reversing his dangerous fluid overload condition.

June 29. Stan and I arrived in Temple at 6:00 P.M. Instead of being pleased with Dad’s progress, it seemed to me that his progress had stalled. His legs weren’t seeping fluid, but his whole body still seemed very swollen. He also wasn’t wearing shoes because he couldn’t get them on his feet. When I asked Mom when he had last taken a pill, she said that she didn’t know.

I tried reasoning with him again about walking and taking the diuretics, but he lobbed excuses at me faster than Serena Williams. When I asked him to walk, he said that he didn’t want to at that time. When I asked if he wanted to get out of the wheelchair, he said, “Not if it means that I have to walk four times a day.”  I didn’t know how to respond. My mother was exhausted from trying to care for him, their 3,400 sq ft home, and their acre of property. I wanted him to get better and stay in their house if that’s what they wanted, but not at the expense of Mom’s health.

While Mom and I attended church on Sunday, July 1, Stan observed that Dad sometimes spontaneously drifted off to sleep while they were playing cards, which was also a symptom of fluid overload. He would sometimes fall asleep at the dining room table at the end of a meal.

I was appalled to learn that Dad wanted to install a ramp off of their patio, presumably to enable wheeling the barbeque grill onto the patio, but I suspected that it had more to do with wheelchair accessibility. He kept saying that he looked forward to activities that required him to walk, but it seemed that he was preparing the house for life ahead in that wheelchair. Mom told me that he wanted to walk again, but you couldn’t prove it by me.