Shaky progress, but still recovering

September 2, 2018. Sunday mornings at the hospital are usually pretty quiet, especially in the parking lot. On Sunday, I can get a decent parking space, unlike most other days. However, today while I was walking from my car to the hospital, the usual quiet was disrupted by a hospital employee who was chasing and calling after a resident “runner.” During the day, you periodically hear announcements about missing patients who wander away from their rooms, but rarely have the patients left the premises. I tried to imagine the backstory to this event that broke the monotony of the walk into the hospital.

shakycross2I arrived at Dad’s room at 7:45 A.M. His breakfast tray had arrived and was on his bedside table. He was still sleeping, but I was able to wake him easily. He finished about half of his breakfast before the physical therapist arrived. I never knew if we could expect to see a physical therapist on the weekend and I was pleased that Dad was being seen by a therapist during the holiday weekend. The session got off to a rocky start when the therapist accidentally dumped the contents of Dad’s urine bag on the floor. While she and the nurse cleaned the floor, which took a little over five minutes, Dad was able to sit without assistance on the side of the bed. The therapist was hesitant to have Dad stand up because his blood pressure was a bit low, but eventually, she decided to let him try. After standing, she retook his blood pressure, and it had elevated into the normal range. Because an aide didn’t assist her today, the therapist did not have Dad walk. Instead, she had him sit and stand a couple of times and then do some leg exercises on the bed.

After therapy, Dad was alert enough to swallow his morning pills of Midodrine and aspirin with juice.

This morning, Dad was fixated on dreams from last night about his father’s surgery and “what they’re doing to him at this place.” It was a confusing conversation because his father had died of a pulmonary embolism in 1957. I was able to get him to drink a couple of cups of coffee, hoping that it might help him clear his head and to stay awake.

shakycross3Unfortunately, the effect of the coffee was short-lived, and Dad fell asleep moments before Stan and Mom arrived. Although he was awake when Dr. Hunt, the attending physician, arrived, he was very groggy. When the doctor questioned Dad about why he was in the hospital, he said that he was in Temple because of a broken leg, which was closer to reality than his answers yesterday.

I, not to mention his night nurse, was concerned that Dad’s biological clock seemed reversed. From what I had heard from the nurses, he was awake most of the night and then slept during the day. When I asked the doctor about what we could do to switch Dad’s inner clock, he said that he would check with neurology. I told the doctor that at home, Dad often took ½ of a Simply Sleep pill (which was ¼ of the recommended dosage), so they should exercise some caution when prescribing sleeping medication. The doctor said that he would check the ingredients in these pills and note on Dad’s chart that they should start Dad on low dosages of any sleeping medication.

Mom and I left for church at 10:20 A.M. After church, Stan told me that Dad had been awake about 75% of the time that we were gone, but that he was still a little confused.

shakycross3Nephrologists base many of their healthcare decisions on the amount of liquid gold (urine) collected during a 24-hour period. When the nephrologists arrived for their morning rounds, Stan told them about the physical therapist’s mishap with the urine bag. However, they weren’t concerned and said that after taking diuretics yesterday, Dad had voided a liter of urine, so they would not dialize today. Instead, they would check his lab results tomorrow before dialysis to see if his kidneys were removing the toxins and electrolytes in his blood. Because Mom and Dad didn’t like the Scott & White dialysis center, we would need to arrange for Dad to receive dialysis at another location—one that wasn’t conveniently located near their home. This refusal to use the local dialysis center was an inconvenience that they would regret and that I wished that we could avoid. In any event, the nephrology team planned to get Dad started on a Monday-Wednesday-Friday schedule that would continue following his discharge from the hospital.

Following our lunch at home, Stan, Mom, and I returned to the hospital at 2:30 P.M. Dad was sound asleep, but I was able to rouse him for about two seconds. I had been looking forward to this weekend so that Dad and Stan would have time to visit. Dad’s inability to stay awake was torpedoing my plans, and I hoped that the doctor would prescribe something for Dad that would enable him to sleep tonight. Tomorrow was Labor Day, and I wanted the guys to have time to visit and perhaps play cribbage.

shakycross2At 3:00 P.M., Kayla, Dad’s nurse, set up the creatinine test that had been ordered by the nephrologist. Before she was finished, Maryline, Dad’s aide, entered the room and said that she was going to bathe him. I told her that his toothbrush was in his travel shave kit that was in his closet, so she said that she would also brush his teeth. While Mom and I waited in the 6 North waiting room, Stan drove to Starbucks to get us some coffee. Kayla came and got us at 3:45 P.M. When I went back to Dad’s room, I noticed that his teeth looked shiny and clean.

shakycross3He slept for most of the afternoon but woke up for dinner, although he was still very confused. He kept saying that something was different. We couldn’t figure out what he was talking about and what was different. I wished that he could have given us some clue as to what he was talking about. After he finished eating, Mom, Stan, and I returned home. I said a quick prayer that Dad would get a good night’s sleep. He seemed to be progressing well, but I wanted him to be more awake during the day.

 

A little more recovery and a little less drama

September 1, 2018. My days at the hospital were full of impromptu meetings with healthcare providers and with caregiving activities in between, none of which was really scheduled and all of which was really important for Dad’s recovery and well-being. For me to be present for all these meetings and ensure that all caregiving was taken care of, it was practically impossible for me to leave the hospital to run errands during the day. Also, by the time that Mom and I left in the evening, we were usually too weary to fight the rush hour crowds in the stores. Fortunately, most stores opened early on Saturday, so today I ran a couple of errands on the way to the hospital. Mom stayed at home to wait until my husband, Stan, arrived from Houston. I arrived at Dad’s room at 7:35 A.M. to find that Dad was sleeping and his breakfast tray was on his bedside table, which was not unusual. What was unusual was that his bed was no longer in the center of the room. Instead, it was pushed within a few inches of the outside wall. I suspected that the furniture rearrangement was the result of Dad attempting or succeeding to get out of bed last night.

He was easy to wake, and I was glad that he was no longer fixated on the annotation on his bandages. However, within a few moments of waking, he became fixated on “one day’s paper,” a topic that I could not understand, and I could not divert his attention elsewhere.

morerecoverycross1I was glad when Dr. Blake Tanner, the nephrology resident, entered the room, thinking that Dad might turn his attention to another subject. However, I was a bit disturbed when he could not answer the doctor’s questions about where he was or the year, which were daily questions to ascertain mentation. Dr. Tanner said that they would hold off on dialysis and diuretics today to see how Dad’s kidneys functioned. In one of the days where they gave him diuretics, Dad voided 300 ml of urine; on a day without diuretics, he voided 350 ml, so they wanted to see how his kidneys functioned today. Depending on today’s results, they might dialyze him tomorrow. The doctor checked for swelling in Dad’s legs, but they still seemed to be fine. He said that they were waiting on the results of the morning labs, but he didn’t think that they would see anything that would alter their plan. They hoped that the Midrodine would elevate Dad’s blood pressure enough to get the kidneys to produce more urine.

Now that Dad was fully awake, I wanted him to eat. Because he was low in his bed, I used the call button to summon someone to help me adjust him in the bed so that he could eat. His sheets were also wet from wound seepage, which I also wanted to be addressed.

img_0030After waiting for 35 minutes, Storie and Miguel, the nurse and aide (CNA) entered Dad’s room. When I asked about the location of the bed, Storie told me that they had been told that they could not move the bed back to the center of the room because Dad was a fall risk and an escape artist. While they were changing Dad’s gown and adjusting his position in the bed so that I could raise the head of the bed, I ran downstairs for a cup of coffee.  When I returned, I heated up Dad’s breakfast and started to feed him, but he fell asleep before we had made much progress. He still needed to take his morning meds, which was an ordeal when he was half asleep. Fortunately, he still had some Cream of Wheat in his bowl, and Storie was able to crush his pills and mix them in the warm cereal. He made a face as he took the nasty concoction, but at least we were successful in getting the pills in him without him choking on a liquid while trying to swallow the pills. By 9:10 A.M., Dad was sound asleep.

Five minutes later, he was wide awake and wanted to drink his Nepro. He was able to hold the container of Nepro without spilling it, which was an improvement from yesterday. His dexterity suffered when he was in the hospital, and the presence of the oximeter on his hand didn’t help matters. He nibbled at most of his breakfast, but I was pleased that he drank all of his Nepro. By 9:30 A.M., he was sleeping again. It was almost startling how quickly he could wake up and fall asleep.

glacialspeedcross2At 11:45 A.M., Miguel took Dad’s blood sugar and it was 42 (normal is 100), which prompted him to call the nurse.  Storie entered the room with Shelly, another CNA, and had him drink a couple swallows of orange juice. Shelly then had the nearly impossible task of getting Dad to consume a tube of a substance similar to Karo syrup. He hated the taste of it and she practically forced it into his mouth.

At noon, his lunch tray arrived, and Stan and Mom arrived a few minutes later, at 12:15 P.M. While I updated them on the events of the morning, Miguel returned to recheck Dad’s blood sugar. It was now up to 73, which was still very low, but it was no longer dangerously low.

morerecoverycross1At 12:45 P.M., Mom and I left Stan with Dad while we drove a few blocks to Chick-fil-A. The nephrology team entered the room at 1:00 P.M., followed by Bonnie, the physical therapist. I knew that the nephrologists’ visit would be short, and I asked Bonnie if she could wait. She said that she didn’t have time to wait and left. I hated that Dad might miss a physical therapy session and hoped that she would return soon.

I was relieved when Bonnie returned, but we were unable to wake Dad. Thinking that it might be his blood sugar, she summoned the CNA to recheck it, but it was now up to 101. She eventually left.

I had been working on an embroidery project, but the new room rearrangement made it impossible to work in Dad’s room. Now that Stan was here, I felt that I could leave the room, so I moved out to the 6 North waiting room. At 2:15 P.M., Stan came to the waiting room to tell me that they were giving Dad some albumin to increase his blood pressure. Dad had been pretty drowsy today, and I hoped that the albumin would help him stay awake.

glacialspeedcross1At 3:15 P.M., the nurse pulled out Dad’s central line on the left side of his neck, which had been replaced by the tunneled line yesterday. He added that Dad’s blood pressure was 113/65, which was good.

At 4:00 P.M., he started receiving Lasix, a diuretic, which meant that something had changed to make the nephrologists change their minds about holding diuretics today. Right around that time, the hard disk failed on the computer in Dad’s room, which was very inconvenient for the nurses, who now had to use the computer in the room next door to access and update Dad’s chart. Because it was Saturday, and a holiday weekend, the nurses didn’t hold out much hope for getting the computer fixed, although they had a few conversations with the IT support person who was on call.

At 5:30 P.M., in preparation for his dinner, I asked Shelly, his new nurse, to reposition Dad in his bed. At 5:45 P.M., Stan and Mom went home to start preparing our dinner while I stayed to help Dad with his dinner. I thought that feeding Dad would take only a few minutes, but I was very wrong. He was talkative and asked dozens of questions about his condition. He was able to eat and swallow well, but the talking slowed the progress. When he had finished his dinner, he wanted me to stay and review his situation and plans with him. Stan texted me a couple of times to see if everything was OK.

morerecoverycross1Dad was still very confused, but our conversation was light and humorous and eventually centered primarily on his catheter, of all things. He had been concerned that he was being forced to stay in bed and didn’t realize that he had a Foley catheter. I eventually left the hospital around 7:00 P.M. I found his night nurse and warned her that in spite of my best efforts, Dad had slept for most of the day and that he was wide awake now. She groaned as I left and I wished her luck. I was glad that we had had a good talk and I prayed that it would be a good night for Dad.

 

 

Little victories and setbacks during recovery

August 29, 2018. Before going to bed last night, I had washed a load of clothes and then placed them in the dryer with the intention of drying them in the morning. When I woke up at 4:00 A.M. this morning, I was pleased that I remembered the wet clothes, and started the dryer. Life’s little victories seemed important these days.

pushmecross5When Mom woke up at 6:00 A.M., she said that she was exhausted and that she was frustrated that she didn’t have time to do anything around the house. Last night, Stan and I had talked about trying to get Mom to stay at home and rest, so I took this opportunity to suggest that she stay at home this morning, and I would bring her with me to the hospital after lunch. She gratefully accepted my offer.

I arrived at Dad’s room shortly before 7:45 A.M. He was sleeping, but he was easy to wake. After saying hello, he told me that there had been about 15 people in the room overnight, which seemed implausible to me. I later learned from his night nurse that Dad had triggered his bed alarm by getting out of bed, and when she got to the room, she found him on the floor in a “praying” sort of position, probably trying to get back into bed. She had to call for assistance to get him back into the bed, but I doubt that the task required 15 people. However, keeping Dad in bed had proven to be one of life’s most difficult challenges. Thank goodness he didn’t injure himself.

pushmecross4Dr. Tanner, one of the nephrology residents, stopped by this morning and confirmed what the nurse had told me yesterday afternoon. Because of Dad’s low blood pressure, they were unable to remove more than 500 ml of fluid yesterday during dialysis. He said that they were going let Dad’s body rest today and perhaps try another dialysis session tomorrow. Wasn’t it just yesterday that I had prayed that Dad could maintain enough blood pressure to keep removing this excess fluid?

After Dr. Tanner left the room, someone from the food & nutrition department dropped off Dad’s breakfast tray. It was a messy process, but with some assistance from me, he ate about half of the food on his tray. The linen cart for our section of 6 North was conveniently located across from Dad’s room, and the nurses told me that I could use it. Before Dad started eating, I grabbed a bath towel and used it like a large bib, which saved me and the nurses a lot of clean-up time. I was happy to see that in the last couple of days, he had graduated from receiving Nepro through a feeding tube to a tray containing oatmeal, an omelet, an English muffin, a carton of Nepro, milk, and coffee. As nervous as I was about his status, I had to admit that his condition had improved a lot in the past five days.

At 10:00 A.M., I used the call button to summon the nurse. Once again, Dad had slid down the bed and needed to be repositioned. While Aspen, the nurse, was there, I asked her if she had seen the doctor or his PA or any of the therapists. I didn’t want to risk missing any of them by leaving for lunch at the wrong time. Aspen replied that she had not seen any of the providers this morning. I spent the next hour trying to engage Dad in some sort of meaningful conversation while he drifted in and out of sleep.

pushmecross2At 11:00 A.M., Katherine, the occupational therapist, arrived. She had barely started getting information from Dad when Amber, the physical therapist, and her student, Shelby, arrived. The room became a hubbub of activity when the nephrologist also arrived. It was positively uncanny how all of the care providers seemed to arrive at the same time. Thankfully, the nephrologist stopped by, only to confirm what Dr. Tanner, his resident, had said earlier. I was glad that his visit was brief. I was eager for Dad to get started with his physical and occupational therapy.

Within moments of the nephrologist’s departure, a knock at the door announced the arrival of Pastor Tom. When he entered the room, he looked at Katherine and said, “Hi, sister.” It seemed that Katherine was also a member of my parents’ church. I know that it doesn’t make any difference in a person’s care, but I always felt better when I was able to make a personal connection with the health care provider, so Pastor Tom’s visit seemed fortuitous. Pastor Tom stayed only long enough to exchange enthusiastic greetings with my father. Although he was there for only a couple of minutes, seeing him always acted like a shot of adrenaline for Dad, which was just what was needed at that moment.

pushmecross1Amber and Shelby were able to get Dad to sit on the side of the bed. While he sat on the side of the bed, Katherine exercised his arms and checked his toes and legs. Katherine and Amber then worked together to get Dad to stand up, with me cheering him on from across the room. By 11:20 A.M., Dad was exhausted and ready to lie down.

As the occupational and physical therapists were getting Dad resituated and comfortable in bed, Adan, the speech therapist, entered the room to ask if Dad had been receiving his food trays. I told him that the breakfast tray was great, but I questioned the wisdom of giving Dad rice for dinner last night. He agreed and said that he would modify Dad’s diet to dysphagia III so that his trays would not include loose foods like rice. When I asked him if he knew anything about Dr. Hunt, who was starting his week-long rotation today, he said that he thought that the doctor was cool.

pushmecross3So far, I’d seen everyone today that I wanted to see, with one exception: I had not seen Dr. Hunt. However, it was now 11:40 A.M., and I needed to get home for lunch. After a quick lunch, Mom and I returned to Dad’s room at 12:50 P.M. When I reached out to touch his right arm, I noticed that his gown was damp on his right shoulder. When I mentioned the damp gown to Aspen, she said that while I was gone, they tried to give him a pill and some water had spilled on his gown. I don’t know if I could swallow a pill while slumped down in bed, especially if I was in a groggy and confused state. I didn’t question her more, but I assumed that he was able to swallow the pill.

Shortly after 1:30 P.M., Dr. Hunt arrived and began to summarize Dad’s current condition. During his summarization, he mentioned the presence of a blood clot in Dad’s neck, which was new news to me. I knew that he was receiving a blood thinner, but the doctors had only mentioned the likelihood of platelets clotting as the reason for giving him a blood thinner. Doctor Hunt mentioned that he had requested a consult with hematology/oncology to help him determine if Dad had developed an intolerance to heparin or not. He also said that he didn’t want Dad released from the hospital to a rehab facility until we had established a baseline for his kidneys and weight, and a baseline for his mentation. He wanted to know if neurology thought that his confusion was a permanent or transient condition. Because Dad had fallen last night, the doctor wanted to ensure that Dad had not fallen on his head. For that reason, he ordered a CT scan. I was skeptical about the need for the neurology consult and the CT scan. Usually, when Dad fell out of bed, his fall was more like a slide that started with his feet. The cynic in me thought that all of these consultations and tests were ways in which to inflate the hospital bill. As long as the tests didn’t harm or hurt him, I reluctantly agreed with the doctor’s suggestions.

Within the hour, a gurney appeared outside of Dad’s room, and he was transported to the x-ray department for his CT scan.

pushmecross4At 3:15 P.M., a couple of doctors from the hematology/oncology department visited us to talk about some of the problems that Dad might be having with heparin and HIT. They said that sometimes they could substitute Argatroban for the heparin, but in Dad’s case, they thought that this drug was too harsh. Because Argatroban is metabolized in the liver, it would be too hard on Dad’s liver, which had been under stress during this hospital stay. They said that they also had been viewing Dad’s white and red blood cells under a microscope and had noticed a slight change in their shape, which might indicate the start of a cancerous condition. However, the only way that they could know for sure was to order a bone marrow test, and we all agreed that at Dad’s age, we didn’t need to go down this path. They speculated that his liver problems probably started with the sharp drop in his blood pressure the day after his latest surgery. Although his blood pressure had rebounded, it would take more than a few days for the liver to recover.

When Mom and I left at 5:00 P.M., I had some very mixed feelings about the day. On the one hand, he had started his physical therapy, and the doctor was talking about Dad’s discharge from the hospital. On the other hand, we were discussing blood clots, the possibility of a cancerous condition, and the need for a CT scan to determine whether he had sustained a head injury. Although Mom felt better after having spent the morning at home, Dad’s morning had seemed a bit more positive than his afternoon, and I was sorry that she had missed it.

 

 

Replacing the crumbled hip

August 21, 2018. Once again, Dad objected to my plan to come to Temple to sit with my mother in the surgery waiting room. I told him that I had to be there for Mom, but truth be told, if something went wrong, I’d never forgive myself later for not having been there to give him a hug and kiss before his surgery.

I had a full schedule today and didn’t leave Houston until 7:15 P.M. Houston traffic was still a bear, and I was thankful that I was able to bypass most of it with my EZ Tag toll tag.

I didn’t arrive at my parents’ home until after 10:00 P.M. I had a house key, but Mom had insisted that she would wait up for me until I arrived. As I expected, Dad had been in bed since 8:00 P.M. and was asleep when I arrived. Mom told me that we would be getting up very early tomorrow because Dad had to be at the hospital by 5:30 A.M. for his 7:30 A.M. surgery. At least one of us would be well rested.

hip4August 22. We all woke up earlier than necessary, and we were ready and in the car by 5:00 A.M. Needless to say, the streets of Temple were all but deserted at that time, and we were in the day surgery waiting room by 5:15 A.M. Dad’s name was called a few minutes later, and we rode the elevator to the second floor and located our surgical bay. We were greeted by Richard, one of Dad’s nurses, who handed Dad his surgical wardrobe. While Mom helped Dad to change into his surgical attire, I waited outside of the bay curtain.

After Dad had donned his surgical gown and cap and was situated on the gurney, Allison started his IV. Shortly after 7:00 A.M., the anesthesiologist arrived to address any questions that we might have. I mentioned our experiences of Dad’s challenges with extreme confusion following surgery. His not-so-comforting response was that as we age, anesthesia becomes more problematic, so today would be no better (and could be worse) than Dad’s surgery in March.

hip1Moments after the anesthesiologist left, Dr. Daniel Stahl, the orthopedic surgeon arrived. He described the surgical procedure, and while talking, he lifted the portion of the sheet that covered Dad’s legs. Dr. Stahl seemed somewhat alarmed when he saw the many sores on Dad’s legs. The doctor then told us that because of Dad’s age, his kidney issues, and the sores on his legs, the hip-replacement surgery was very risky. When he offered Dad a chance to cancel the surgery, Dad said that it was too late to back out now, to which the surgeon replied that until he made the incision, it was not too late to back out. I asked the doctor why he didn’t perform the hip replacement surgery in March. Evidently, the earlier surgery of mending the hip with pins was a lot less invasive and often sufficed. I, on the other hand, wasn’t feeling great about more surgery and starting over with rehab.

After hearing from Dad that he wanted to proceed with the surgery, the doctor told Mom and me that he would meet with us after the surgery, and then he left. At 7:25 A.M., Shasta, another one of the OR nurses, wheeled Dad to the operating room. As Mom and I proceeded downstairs to the surgery waiting room, she was noticeably upset. She said that during the pre-op visit on Monday, she had not heard that the hip replacement would be a high-risk surgery for Dad.

While we waited, I mentioned to Mom that Dad would probably require rehab. She said that after their previous experience with Cornerstone, she didn’t want him to go to a rehab facility. I reminded her about how weak he was after the last surgery and that we should be open to rehab, even if we went someplace other than Cornerstone.

Dad’s surgery was over at 9:30 A.M, and the surgeon stopped by to speak with us a few minutes later. He said that Dad came through the surgery fine and explained a bit about the condition of the hip from the earlier surgery. When I asked if we would bring Dad home from the hospital, he said that Dad should go to rehab for a couple of weeks. Before he left, he told us that we would be notified when Dad was ready to leave recovery. After the doctor’s disturbing comments prior to surgery, Mom and I were very relieved and eager to see Dad.

hip2An hour later, Mom and I were becoming concerned that we hadn’t heard anything about Dad. We were also starting to turn blue from the temperature in the waiting room, which must have been set to 65 degrees. We had seen several people leave the waiting room to see their loved ones and we were curious about our long wait. When I approached the waiting-room clerk to check on Dad’s status, she told me that “they” would call her when he had a room. At 11:15 A.M., almost two hours after his surgery, his recovery nurse, Karly, called us to tell us that he was still in recovery because there were no available beds on the orthopedic floor. I gave Karly my mobile phone number and Mom and I went home for lunch and to change into warmer clothes.

About an hour later, Karly called and told me that a room on the orthopedic floor was being cleaned. When I asked her for the room number, she said that to avoid problems caused by last-minute changes, she could not give me the room number until he was in the room. At 1:15 P.M., as we were backing out of the garage, she called me again and told me that Dad was in room 546 South. We arrived at Dad’s room at 2:00 P.M., and Pastor Tom from my parents’ church entered the room about five minutes later. During his visit, he told us that quite a few of his church members had had hip replacements and recovered quickly. After a short visit and a prayer, Tom left at 2:15 P.M.

Dad’s nurse, Brittany, was very nice and spent a significant part of the day monitoring his vitals. His oxygen saturation level was low because he sometimes stopped breathing, but it eventually leveled out between 98 and 99%. She asked if he had any history of sleep apnea. We said that he didn’t, but I mentioned that we had seen similar breathing patterns after earlier surgeries.

hip3With Dad sleeping soundly, I was able to give the nurse an update on his meds. I also told her that he had a bit of fluid overload, and that his face was usually puffy in the morning, although the fluid usually dissipated by mid-morning. Unfortunately, as the day progressed his legs became swollen from sitting in the wheelchair all day. A couple of hours later, she said that Dad’s face seemed swollen from lying down all day, and she elevated his head.

Around 3:00 P.M., a millennial in red scrubs and many tattoos entered the room with a heart monitor, and hooked it up to Dad. When I asked her if she worked in the war room, she said yes. I had seen the war room employees in one of Dad’s earlier stays in the hospital and was relieved that his heart would be monitored. The color of employees’ scrubs identified their role at the hospital, and the red scrubs stood out among all of the others.

hip5Dad’s oxygen saturation and blood pressure levels looked good for most of the day, but his heart rate hovered around 109, which seemed high to me. When I asked Brittany about it, she said that as long as it wasn’t fluctuating between the 60s and 90s, he should be all right. She reminded me that because of his AFIB, he was being closely monitored by the heart team in the war room, and they would keep an eye on his heart rate.

Try as we might, Mom and I could not get Dad to open his eyes for more than two seconds, and he only grunted like a bear when we asked him questions. At 4:45 P.M., his condition had not changed, and we decided to go home for the day. Mom and I were sleep deprived, had been here for the better part of 12 hours, were starting to get hungry, and Dad would probably sleep for the remainder of the day.

hip1We were relieved that the surgery had seemed to go well and that his condition seemed stable. I didn’t know how well Dad’s new hip would work with all of his excess fluid. I hoped that he might have some dialysis during his stay, which I hoped might improve his mobility.

Because of his history of delirium and confusion caused by the anesthesia, the next three to four days would be important for him, and probably a little challenging for the three of us.

 

 

Is this fall number 5 or 6?

July 25. Dr. Ebert’s nurse called me today. She had repeatedly called my parents’ phone number but there had been no answer, and she was concerned that she might not have their current phone number. I confirmed that she had the correct phone number and suggested that she keep trying. About 30 minutes later, Dad called me to see if I had called him. Evidently, he had heard the phone, but my mother was away from home and he had not been able to answer it before it stopped ringing. I told him that the call was most likely from Dr. Ebert’s nurse. I couldn’t tell him why she was calling, but I was certain that she would attempt another call.

ouchCross4When I called Mom a couple of hours later, she told me that Dad had not walked or exercised since Stan and I had left on Sunday, three days ago. I suggested that she move Dad’s little step into the living room so it would be easier for him to access and perhaps use it. I didn’t think that it was a reasonable substitute for walking, but it was better than nothing. During our call, Mom told me that Dr. Ebert’s nurse had called to tell them that Dad’s November 20 nephrology appointment had been changed to Tuesday, July 31 (next week!), at 3:30 P.M. I was relieved that the appointment had been moved up because I didn’t think that Dad or his kidneys could wait four months to see a nephrologist. Also, with this schedule, I could do my volunteer shift at the wildlife center, drive to Temple for the appointment, and then come home on Wednesday in time for my shift in the cattery at the SPCA. Everybody wins.

fallGuyJuly 26. I called my parents’ home numerous times today, starting at 3:00 P.M. Finally, at 4:50 P.M., Mom answered the phone. I could hear Dad’s voice and a woman’s voice in the background, and Mom said that she would call me in five minutes.  When she called, she told me that Dad had fallen while trying to walk from the car into the barber shop. As they were coming home, neighbor Jo’s aide saw them and offered to help. She wheeled Dad into the house and started bandaging his bloody arms.

Upon hearing this news, I lost my cool. When we were in town this past weekend for Stan’s birthday, Mom mentioned that Dad needed a haircut. I told her to wait until we returned so that Stan and I could help get Dad into the inaccessible shop. Mom said that as soon as Dad fell, she could hear my words in her ears. I told her that she and Dad needed to reassess their living options, and she said that they would never live in a nursing home. I wished that they understood that they had options other than their large, unmanageable home or a nursing home.

Before I hung up, I told Mom to contact the orthopedic surgeon and schedule an X-ray to ascertain whether or not Dad had broken or rebroken any bones.

home4Cross3July 27. After spending a few hours away from home today, I logged on to Dad’s MyChart account and noticed that his Tuesday appointment with the nephrologist had been rescheduled to a date and time that I could not make. The change was required to accommodate a new appointment with the orthopedic surgeon. I called Mom to see if she would let me try to reschedule the nephrologist appointment to a more convenient time for me, and she agreed. I spent the next 30 minutes on the phone with a very patient woman who worked at the appointment desk at the dialysis center. I was able to reschedule the appointment with the nephrologist to Monday afternoon. It wasn’t the most convenient time, but I could make it work without missing any of my commitments or appointments in Houston.

July 29. After attending my church in Houston, I packed a small bag and drove to Temple. Traffic was better than I would have expected on a Sunday afternoon, but parts of US 290 still left me white knuckled. Although the seemingly 100-year construction project was nearing completion, some of the road conditions were still far from ideal.

gliderhairWhen I arrived at my parents’ home, Dad was sitting in a glider chair with his legs resting on an ottoman. It was the first time since his surgery in March that he had been able to get himself in this chair. In addition to it being much more comfortable than his wheelchair, having his feet elevated might help reduce the swelling in his legs. Unfortunately, while he was on the glider, he was watching the Texas Rangers beat the Houston Astros.

After dinner, the three of us played a game of Oh Hell, and Dad won.

July 30. Besides the afternoon appointment with the nephrologist, Dad had a 9:10 A.M. appointment with the lab. According to my parents, Dad seemed to be having weekly trips to the lab for blood draws. Each specialist ordered lab work that addressed only his or her area of specialty. With any luck, Dad wouldn’t need any more blood draws for a few weeks. After we returned home from the lab, Dad helped me assemble a canvas stretcher for an art project. Before we were finished, I had hauled at least six different tools from his workshop into the living room, but we had a good time working with the difficult stretchers.  After lunch, we all snoozed for a few minutes before going to the dialysis center to meet with Dr. Maaz Syed Ahmed, the nephrologist.

My parents had a little difficulty understanding him, but they liked this doctor. He encouraged Dad to keep taking one pill/day and to monitor his weight and blood pressure. Dad’s creatinine level was elevated above high normal, but the doctor didn’t think that that Dad’s level was alarmingly high. The doctor also did not recommend that Dad resume dialysis, but he provided the following guidelines:

  • Restrict fluid intake to less than 50 ounces per day.
  • Do not exceed 2,000 mg of sodium per day.
  • Schedule an appointment with a wound specialist to address the wounds on his legs.
  • Walk as much as possible, but when seated, keep his legs elevated.
  • To address any pain, take Tylenol. Do not take aspirin or Advil.

The doctor asked Dad to schedule a couple of follow-up appointments before we left the building. Dad now had another appointment in October with the nephrology PA and then in January with Dr. Ahmed. I hoped that Dad liked this doctor enough to follow his recommendations, which seemed to dovetail with Dr. Ebert’s advice on July 17.

As soon as we returned to their home, I packed up my car and drove back to Houston, arriving shortly before 7:00 P.M.

PenultimateFullSizeRenderAugust 3-5. After Stan arrived home from work, we drove to Temple and spent the weekend with my parents. Dad ignored my requests to walk with him and did not walk during the weekend. He and Stan built a higher step, which Dad was excited about using. I still didn’t think that the step was a reasonable substitute for walking, but Stan gave me a look that suggested that I not raise any objections. Dad had enjoyed working on this little project with Stan and felt that it would help him. For me to raise objections wouldn’t accomplish anything and would only irritate Dad.

As expected, we played Oh Hell Friday and Saturday nights.

August 7. Mom was not at home when I called today, so Dad and I had a chance to discuss her birthday dinner. She would be 91 in a couple of weeks, and Dad had assured Mom that I knew how to prepare her favorite food, chicken-fried steak. I had never fried a chicken, let alone steaks, and I was thankful that I had a membership with Omaha Steaks. I was pretty certain that they knew how to prepare chicken-fried steak. Because Mom loved balloons, I planned to get her some, and I also planned to have flowers in her honor delivered to the church for the August 19 services.

August 9. Dad accompanied Mom to the store today, but he stayed in the car. He had not been walking, but he had convinced himself that using the little step that he and Stan had made would be an adequate substitute for walking. Evidently, getting Dad from the house into the car was a real struggle, and it became clear to Mom that walking was important. She decided that Dad must start walking again and planned to broach the subject with him. I stressed to Mom that he needed to walk over the weekend so that he could get into the car on Monday for his physical therapy.

August 12. Dad didn’t walk today, but Mom said that she was able to help him transfer from his wheelchair into the glider chair (with ottoman). She said that he fell asleep as soon as he was situated. I was glad that he was out of his wheelchair and sitting with his legs elevated. I’m unable to watch television in these glider chairs because their soothing gliding action puts me to sleep within moments.

fallGuyAugust 13. Dad slipped or fell out of bed this morning while trying to transfer from the bed to the wheelchair. According to Mom, it took her about 30 minutes to get him up and into the wheelchair. This event marked the second time in the past couple of weeks that he had slipped to the floor. Getting Dad up and off of the floor exhausted Mom, which concerned me. Fortunately, he didn’t have a physical therapy appointment until 10:30 A.M., so they both had a little time to rest before they had to go to his physical therapy appointment with Christi. Shortly after PT started, Mom and Dad told Christi about his fall this morning. She stopped the therapy session and scheduled an appointment for Dad later in the day with the orthopedic surgeon’s PA. She said that she would consult with the surgeon and then call my parents to see if they should continue therapy. The therapist strongly suspected that Dad would require hip-replacement surgery. Ye gods.

August 15. My parents still hadn’t heard from the surgeon’s office, which meant that Dad was just sitting around without any physical therapy—regressing.

I was a little anxious about today’s activities. Tomorrow was Mom’s 91st birthday and her driver’s license would expire. The Temple DPS office was small, and when the 30 chairs inside were full, people had to wait outside in the 100-degree heat. Mom planned to go early to avoid the worst heat of the day, but I worried about her standing outside in the heat and sun. I also was worried that she might not get her license renewed, which would create an impossible situation for my parents. Until Dad was up and around, she was the only driver in the house.

badRehabCross1When I called Mom this evening, I was pleased to learn that she waited only 15 minutes outdoors and then another hour inside. Even better, her license was renewed. One hurdle down, numerous more to go.

August 16. Today was Mom’s 91st birthday. On this date 41 years ago, Elvis Presley died, and later today we learned that Aretha Franklin had died of pancreatic cancer. After Mom and I discussed the sad news of the day, she told me that someone from the surgeon’s office had called and scheduled a pre-op visit for Dad on Monday, August 20, followed by surgery on Wednesday. I just hated the thought of more surgery. It seemed to me that we were back to where we were on March 24 when Dad fell and broke his hip, and I dreaded the thought of another hospital stay.

 

Maybe enlisting the assistance of a physician would help

July 3, 2018: Independence Day fell on a Wednesday this year, but for Stan and me to celebrate the holiday with my parents in Temple, we had to have our celebration on the preceding weekend. Afterward, I had left their home with some concerns that I hoped Dad would address. However, when I called Mom today and asked her if Dad had taken a pill today, she said that he had not, and he was through taking them. When I asked her why, she said that Dad felt that he was making enough urine without the aid of the diuretics. I couldn’t believe that he was reneging on our agreement to take one pill every day. I understood that it was his life, but what he did also affected the rest of the family, especially Mom. I also wasn’t sure that he understood the possible consequences of his decision.

ouchCross4In desperation, or maybe out of frustration, I called my friend Sue, the dialysis nurse practitioner, to sanity-check my assumptions and fears. Unfortunately, all of my fears about what Dad was doing to his body were well founded. After sharing the highlights of my 30-minute conversation with Stan, he encouraged me to write a letter to Dad, outlining my concerns, describing Dad’s symptoms, and listing the probable consequences of his decision to quit taking the pills. I agreed, but because I felt that time was of the essence, I decided to email the letter to my parents and then tell them to read the message. In my perfect world, they would print it and refer to it often.

July 4: It was raining in Houston, and it rained most of the day. The media dubbed the rain event the Fourth of July flood.

I called Mom to see how they were faring and to tell them about our weather, but there was no answer. I waited a few minutes and then called again. This time my mother answered, but she seemed out of breath. It seemed that while Dad had been showering, he had fallen off of the shower chair. It’s not easy to fall off of a shower chair, but because of his fluid overload, his center of gravity was out of whack. He didn’t break any bones, but he dislodged a large scab on his elbow, causing his elbow to bleed profusely. I didn’t want to keep Mom too long from her cleanup activities, so I quickly told her that I had emailed her a letter for Dad. She said that she would be having a “talk” with Dad later today and she would print my letter and have it handy during their discussion.

ouchCross2When I called my parents again later in the day, it seemed that my parents had had a come-to-Jesus meeting. According to Mom, following their little talk, Dad took his pill and said that he would continue taking them. From her lips to God’s ear.

July 9. Dad saw the orthopedic surgeon today. He said that although Dad’s hip was healing, it was not completely healed. Considering that Dad had severe osteoporosis, I was thrilled that the doctor expected the hip to heal. Mom added that the doctor said that he thought that Dad’s leg seemed thinner; however, I had a hard time believing that he could recall the size of a patient’s leg that he saw a month earlier.

July 10. According to Mom, Dad was still taking his pills. Stan and I had been spending every other weekend at my parents’ place, but because of a work conflict, Stan would not be able to accompany me to Temple this coming weekend. When I relayed this information to Mom, she was very disappointed. I suspected that Dad was also disappointed. My father cared for Stan and always looked forward to seeing him. Stan also seemed to have a calming effect on my parents.

ouchCross1July 15. Mom and I usually attended church when Stan and I were in Temple. Because Stan wasn’t here, Mom thought long and hard about whether she should attend church and leave Dad home alone. She finally decided that we would go when Dad insisted that she and I attend church. Unfortunately, while we were gone, Dad tripped on one of the front wheels on the wheelchair when he tried to stand. He wasn’t badly hurt, but his fragile skin was quick to tear and bleed. When we returned home, Dad had a bloody leg and sock. Feeling guilty for having left him alone, Mom dug into her stash of bandages and tended to his leg.

When I asked him if he had taken his pill today, he became a bit miffed at me, telling me that he had a lot of things to do today and he didn’t want to take the pill. After telling him that I couldn’t think of anyplace that he needed to be, he eventually took a pill. My health discussion with Dad seemed to deflate his mood, and getting him to take his pills felt like a hollow victory.

goodRehabCross2Fortunately, he didn’t stay mad at me for long, and we spent quite a bit of time planning for his 90th birthday celebration on October 6. We were expecting one of my cousins and her family, and we needed menus for three days. Dad and I were partial to many of the same foods, and we developed menus that contained some of my favorite foods as well as his. Dad also wanted to play a few hands of Oh Hell during the festivities, and he drew a seating chart of how we would seat seven people around a table that accommodated six.

Mom told me that Dad had an appointment this coming Tuesday with his cardiologist, Dr. Elizabeth Ebert. I had met Dr. Ebert on several occasions, and I hoped that she would not mind if I contacted her about my father in advance of his appointment. I assumed that my parents would not tell her about his reluctance to take his pills, so I planned to send her a message via MyChart, Scott & White Hospital’s patient portal. I had been using this website to communicate with Dad’s physicians when he was at home on home care. His credentials were cached in my browser, which enabled me to periodically monitor his test results and correspond with his doctors.

July 16. I wrote the following email to Dr. Ebert and hoped that she would read it before Dad’s appointment the next day:

“Hi, Dr. Ebert.
I’ve been encouraging my father to see you. Dr. Issac (his nephrologist), said that he could try getting off of dialysis if he would take diuretics. My father has been taking them on a less-than-regular basis, and I am concerned about fluid overload and how it might be affecting his heart and lungs. He views the diuretics as an imposition that affects the quality of his life. He hasn’t seen any nephrologist since November 2017. My parents trust you, and I hope that you can have a frank discussion with them.

Thanks.
Melody Locke”

fastCross2July 17. When I spoke with Mom this evening, she said that Dad’s appointment with Dr. Ebert had gone well. While they were in the doctor’s office, she referred Dad to Dr. Concepcion, a senior nephrologist with Scott & White. I knew and liked Dr. Concepcion, but he spoke with a heavy accent, and I feared that my parents would have a difficult time understanding him. After our call, I told Stan about the upcoming appointment with the nephrologist, and he told me that I needed to go with them, and I agreed. When I logged on to Dad’s MyChart account, I was dismayed to learn that the appointment was scheduled for November 20, more than four months from now, and a year since his last appointment.

PenultimateFullSizeRenderJuly 22. Today was Stan’s birthday. We had arrived in Temple yesterday and celebrated the previous evening with some of his favorite Midwestern foods. He and Dad also spent some time playing cribbage. While Mom and I attended church today, the guys played more cribbage and took time out to build a mini step that Dad could use to exercise his legs while he was sitting. I was able to get Dad to walk twice this weekend. We now sing She’ll be “Comin’ Round the Mountain” when he walks. We could usually sing four verses before he had to stop and rest.

barberPoleDad said that he needed a haircut and would see the barber either this coming Wednesday or Thursday. Recalling the difficult time that Mom and I had getting him into the barbershop during a previous visit, I implored her to wait for a weekend when Stan and I could help get him into and out of the building. I didn’t get much of a response, but I hoped that Mom would recall the harrowing experience.

July 24. I logged on to Dad’s MyChart again today to see if Dr. Ebert had left any notes about Dad’s last appointment. I was pleased when I read the following message:

“RE: Visit Follow-Up Question

I spent a good bit of time last week with your father (and mother) in the clinic. I expressed how important it was to take his diuretic every single day. He did complain that it was an inconvenience and he did not feel that he should have to take it daily. I explained that with his kidneys, he needed to take the diuretics if he wished to stay off of dialysis. I told him that as long as he had 6 to max 8 hours, then the diuretics would have worn off. I told him that if his appointment was at 2 in the afternoon, then he should take his diuretic at 6 am; or if he had a 10 am appointment, to take his diuretic as soon as he got home. I also encouraged him to follow up with Nephrology. He informed me that he did not wish to go back to Dr. Issac, so I instructed him that he should see another Nephrologist. He requested a recommendation. While I do not know all of the Nephrology department, I reported that Dr. Concepcion is very good. Unfortunately, it appears that an appointment was not scheduled until November. Because of the delay, my office will be contacting him requesting that he do some lab work so we can see where everything is now (electrolytes, renal function, etc.). We are also going to get him an appointment with a nutritionist to discuss an appropriate diet (requested by your mom). If he continues to have some difficulty, then I will also request that he be seen by one of our Heart Failure nurse practitioners so that they can continue to monitor him and reinforce the need to take his medications.

Sincerely,
Dr. Ebert”

I hoped that Dad would heed her recommendations. I felt that with Dr. Ebert as an ally, Dad might start taking his pills on a regular basis and reduce some of the fluid in his extremities, which would improve his center of gravity and reduce the weight in his legs.

 

Chugging along the rickety tracks to rehabilitation

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.

chugginCross3When 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.

chugginCross1When 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.

chugginCross2May 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.

chugginCross4May 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.

chugginCross3My 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.

chugginCross1I 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.

chugginCross4June 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.

chugginCross2While 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.