A fabulous start to the day, but what a crummy finish

IMG_5954 (1)September 3, 2018. I arrived at the hospital at 7:30 A.M. Dad’s breakfast tray was sitting on the bedside table, but the meal seemed rather skimpy. When I compared the contents of his tray with the slip that accompanied it, I saw that he was missing the cranberry juice, cereal, and coffee. Toshia, Dad’s aide, contacted the kitchen and requested that they bring the missing items. While she was in the room, I asked her if she could get Dad repositioned in his bed so that he could eat. She said that she would request assistance from Isabel, Dad’s nurse.

At 8:15 A.M., just as Isabel and another nurse had just finished repositioning Dad in his bed, Angie and Beverly from physical therapy arrived. During the few minutes that it took for them to rearrange the furniture for Dad’s session, the missing items from his breakfast tray arrived. Once again, Dad’s breakfast would cool off before he could eat it.

fabCrummyCross4Dad was alert, cooperative, and had a great physical therapy session, and Angie said that tomorrow he should be able to spend time sitting in a chair. At the end of this session, I was feeling very positive and was encouraged about his progress. Mom and Stan arrived at 9:15 A.M., just as Angie and Beverly were wrapping up Dad’s session. I was disappointed that they had missed Dad’s best physical therapy session since his surgery.

I reheated Dad’s coffee and laid out his meal for him. He was able to hold the cup and drink his coffee without any assistance from me, and I was thrilled that he was also able to hold his dish of pears and eat them with a spoon without my assistance.

fabCrummyCross1At 10:30 A.M., the nephrology team arrived. They said that Dad’s lab results were good and that he had cleared 650 ml fluid in the last 24 hours. I was pleased that they were satisfied, but based on previous conversations with other nephrologists, I thought that they would have wanted him to produce more urine. Regardless, I was pleased that the day seemed to be progressing well.

Dad had been very alert and his dexterity had improved, so at 10:45 A.M., he and Stan decided to play a game of cribbage. For the past few years, the guys enjoyed their cribbage tournaments, most of which were won by Dad, and they were eager to play again. However, holding cards was a bit more difficult for Dad than holding cups, silverware, and dishes. After a bit of fumbling, Dad told Stan that he was also having trouble seeing the 15s, so the guys abandoned their plan for a game of cribbage before Stan returned to Houston. I think that I was more disappointed than they were. Being able to play a game of cards would have been a significant milestone for Dad. Truth be told, it was a milestone that I needed.

When Dr. Hunt, the attending physician, came by a few minutes later, he told me that he had had the nurse give Dad something last night to help him to sleep, and he wondered if it had worked. Because Dad had been so alert this morning, I assumed that he had had a good night’s sleep. Unfortunately, while the doctor was in the room, Dad became very drowsy and couldn’t tell the doctor anything other than that he was in Temple. It was uncanny how Dad seemed to be sleeping or very drowsy whenever the doctor was present, and I wondered if it was a Pavlovian response.

5364Dad was awake and alert when the respiratory therapist arrived with a spirometer, a little gizmo to improve his lung capacity. He was supposed to inhale for ten breaths, but he fell asleep after the eighth breath while holding the spirometer in his hand. The timing was unfortunate because he now needed to take his morning meds. Had Isabel entered the room before the respiratory therapist, Dad might have been able to swallow his pills with Nepro, but now I was afraid to give him any liquid. Isabel suggested that we crush the three pills and administer them with pudding, which worked. He complained about the taste, so I had him eat a couple more spoonfuls of pudding to get rid of the nasty taste of pills in his mouth. Within moments he was sleeping again.

Today was Labor Day and Stan wanted to return to Houston ahead of the post-holiday traffic, so he, Mom, and I left the hospital at noon. Dad’s lunch arrived before we left, but I doubted that I could get him to eat it now. I left it on the bedside tray and planned to have him eat it when I returned.

oximeter2Mom and I were back at the hospital by 1:00 P.M. I reheated Dad’s lunch and called for the nurses to reposition him in the bed so that he could eat. While they were in the room, he kept trying to remove his oximeter and we had a difficult time trying to redirect his attention. When I was finally able to feed him, I could not get him to open his eyes. I tried shaking him, shouting in his ear, and singing, but nothing worked. By this time, it was 1:40 P.M. and I gave up trying to get him to eat his lunch.

Mom and I were still sitting in his room at 2:40 P.M. when Isabel and Toshia came in to bathe him. Until they were finished, Mom and I sat for about 45 minutes in the 6 North waiting room. While we were there, we met a couple of brothers, one of whom had recently recovered from pancreatic cancer. He was now recovering from a minor infection and was being released tomorrow. His was a fabulous story that lifted our spirits.

fabCrummyCross2At 4:30 P.M., the nurse came in with Dad’s afternoon pills, but he was very drowsy and I was pretty sure that we wouldn’t be able to get him to swallow them. She grabbed some chocolate pudding from the kitchen and mixed in the three crushed pills. Fortunately, I was able to get him to swallow a few more spoonfuls of the pudding concoction, ensuring that he got the required dosage.

Fifteen minutes later, the respiratory therapist returned. I told her that the breathing thingy that she had brought Dad earlier had been knocked to the floor by someone in housekeeping. She left the room and brought us another spirometer, although I wasn’t confident that it would get much use. I was pretty sure that we had a couple of these thingys in the bathroom closet at home, still in their original packaging.

fabCrummyCross2Dad’s dinner arrived at 5:45 P.M. He was scrunched down into his bed, so I used the call button to summon assistance to reposition him. After just a short wait, Isabel and Toshia arrived and took his vitals and repositioned him in the bed. He had been talking nonsense for a couple of hours, which continued while they were in his room. Try as I might, I was unable to rouse him enough to feed him.

It was getting late, and I didn’t think that more time with Dad would yield any different results. I used the call button again to summon the nurse so that I could speak with her before I left, but after waiting for more than 15 minutes, I started wandering the halls in search of a nurse or aide. I finally found a nurse and told her that I was leaving and that I had been unable to feed Dad. She said that they would try and I reminded her that because he was an aspiration risk, he needed to have both eyes open when eating.

fabCrummyCross3I also told her that I wanted to speak with a neurologist tomorrow. It seemed to me that Dad had changed dramatically around noon, and his current condition seemed different from anything that I had experienced with him during this or any previous hospital stay. It also concerned me that the change had seemed sudden and occurred when he was using the spirometer. She said that she would add a note to Dad’s chart.

fabCrummyCross5Mom and I finally left the hospital at 6:30 P.M. I had been so happy and optimistic about his progress this morning, but now I was very weary, discouraged, and concerned. On the way home, we saw a rainbow over the hospital, which I hoped was a good omen. After Dad’s sudden change, I was open to all signs of good luck.



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.



A good day, but with a little too much drama

August 31, 2018. Mom and I arrived at Dad’s room for his tenth day in the hospital shortly after 7:30 A.M. The room was dark and Dad was sleeping. I opened the blinds to let in some light, but the daylight did not affect him. I was able to wake him, but afterward, he seemed uncomfortable. I asked him if he needed a bedpan, and he seemed to indicate that he did. At 7:55 A.M., I summoned the nurse for assistance, but no one answered the page. Thank goodness that Dad’s need for the bedpan was just a miscommunication.

dramacross4At 8:10 A.M., Dr. Tanner, the nephrology resident, told me that Dad had had 2,400 ml of fluid removed yesterday during dialysis. He said that the nephrologists needed to know whether Dad wanted to continue with dialysis or use the diuretics to remove fluid following his discharge from the hospital. If he wanted dialysis, the nephrology team would make the arrangements with the dialysis center. I knew full well what Dad’s decision would be. While he was in the hospital, he probably believed he had no choice in the matter, but I’d bet good money, given a choice,  he would not want dialysis. The problem was that history had shown that he wouldn’t take the diuretics as prescribed, which is what led to his fluid overload condition and his two falls. He had been healthy and active until he quit going to dialysis. I hoped that Mom might be able to sway his decision.

At 8:20 A.M., Maira and Carrie, the nurse and aide (CNA), changed Dad’s dressings and got him ready for the day. While they were changing his dressings, they said that they didn’t like the look and smell of his surgical wound. Maira said that she would have the doctor look at it. Dr. Hunt chose to delegate this task and called upon the orthopedic team to check Dad’s surgical wound. A few minutes later, a couple of orthopedic residents came by and applied a new dressing. They assured us that the wound was fine and should not cause a problem for Dad.

dramacross1During the morning rounds Dr. Hunt said that according to Dad’s CT scan, he had had a stroke in the thalamus. I hadn’t been concerned about the CT scan because I was sure that Dad had not hurt his head when he fell out of bed. I now felt like I had the wind knocked out of me. It seemed like Dad couldn’t catch a break. The doctor said that he planned to call neurology to have them check on Dad. In my distress, I texted my husband Stan about this turn of events, which was probably not fair to him. There was nothing that he could do 160 miles from us, except worry.

Once again, the nurse asked me to help Dad with his morning meds. It was a struggle, but I was eventually able to get him to swallow his aspirin and Midodrine pills. A CNA stops by every couple of hours to check Dad’s glucose level. Shortly after the mid-morning reading, Carrie returned with a container of apple juice that she wanted Dad to drink. Evidently, his glucose level was down to 75, with 100 being normal.

dramacross2So far, the most significant untruth told to us was the statement made by Leslie, Dad’s last ICU nurse. She had assured us that although there was a higher patient-to-nurse ratio on 6 North, they had many CNAs who could attend to patients. Carrie laughed out loud when I asked her about the additional aides. Contrary to the messaging in ICU, the patient floors have five or more patients per RN and as many as 19 patients per CNA. It’s no wonder that the CNAs and nurses appreciated the time that I spent helping Dad to eat and take his meds. These were busy people who relied on family and other patient advocates to assist with patient needs. I was grateful that I was in a position to be with Dad so that I could assist him.

Shortly after the morning rounds, Dr. Harris, a resident from the neurology department, stopped by to assess Dad. Dad was able to push against the doctor and follow a variety of instructions. Dr. Harris said that that the stroke was small and most likely was not the cause of Dad’s confusion, good news that probably improved my blood pressure and stress level somewhat. His current level of confusion was similar to what he had experienced during his previous hospital stay in 2015 and was probably transient and not permanent.

dramacross3Moments before noon, Angie and Judy, the physical therapist and her aide, arrived for Dad’s session. They had barely started when Dad’s lunch arrived, which was typical. I wasn’t sure if he’d ever enjoy a hot meal in this place. Angie and Judy had just had Dad stand up when the neurological team, led by Dr. Jennifer Rasmussen, entered the room. I asked if they could stop by later after his physical therapy session, but the doctor said that they wanted to watch the session so they could see how he responded to physical therapy, so their timing was perfect. After a couple of minutes, Dr. Rasmussen pulled me aside and said that Dad seemed to be doing fine. She added that the stroke could cause sleepiness, but that Dad should not suffer any lasting effects. I was so pleased that it was all that I could do to keep from hugging her.

Shortly after noon, Perry, a transportation tech, arrived to take Dad to Interventional Radiology (IR) to have a tunneled line put in to replace the IV in his neck. From what Dr. Hunt said, the tunneled line posed less of an infection risk. Mom and I accompanied Dad and Perry so that one of us could sign the consent form. We arrived at IR at 12:30 P.M. After waiting 20 minutes, I got someone’s attention and asked if we could sign a consent form so that we could leave for lunch. Mom and I went to the cafeteria to get our lunch, but we ate in Dad’s room. I had promised Dad that we would be there when he returned, and I wanted to keep that promise. Knowing our luck, he’d be alert, and if we weren’t there, he’d give us holy heck.

dramacross4At 1:20 P.M., in response to my earlier text message, Stan texted me to see if we could talk. When he called, he said that he could come up tonight if I needed him. Had I not received good news from the neurologist, I might have welcomed his offer, but I didn’t want him on the road with all the crazies leaving town for the Labor Day weekend. Stan was also relieved to hear that the stroke was very minor and promised that he would come up early tomorrow morning.

While Mom and I were waiting in Dad’s room for his return, we overhead a conversation about room 631 north, which was just a couple of rooms away. Apparently, the room had bedbugs. Ye gods!

dramacross1After Dad was returned from IR, I reheated his lunch, which had been delivered almost two hours ago and was cold. I was pleasantly surprised when I looked up and saw our friend, Marilyn, standing at the door. While she was there, Mom and I learned that the husband of our dear friend Sally had died on August 17. I was acquainted with Sally’s husband, and his passing was a real loss. I felt guilty for being so absorbed with Dad’s hospitalization that I could not console a friend. While Mom and Marilyn were visiting, I helped Dad eat some of the Salisbury steak, pasta, peaches, and some Nepro. He then wanted to taste the pureed chicken noodle soup. I didn’t think that it looked all that good, but he said that it was the best thing on the tray.

While he was eating, I noticed that blood was running down his chest from the dressing that the interventional radiologist placed over the tunneled line. I summoned the nurse, and she called the doctor because the wound seemed to be bleeding profusely. Dr. Hunt called IR, and they said that they would send someone up who could put in a stitch. A couple of minutes later, transportation showed up to take Dad back to IR. Because Dad was bleeding, the nurse accompanied him and kept pressure on the wound. When we arrived at IR, the doctor didn’t want to add a stitch because he thought that it would cause more bleeding. I asked if they could use Steri Strips instead of stitches. The doctor thought that was a good idea and used three on Dad before he applied a clean dressing. Inwardly, I was rolling my eyes. The Steri Strips seemed like such a simple solution. I couldn’t believe that I had to suggest it.

dramacross2We returned to Dad’s room at 4:15 P.M., and a couple of minutes later Dr. Duran and Dr. Tanner, the nephrologist and her resident, stopped by to discuss the possibility of dialysis tomorrow. Because patients were usually too tired for physical therapy after dialysis, I asked them if they would please dialyze Dad in the afternoon so that he could have PT in the morning. They said that they would see what they could do to accommodate my request.

At 5:00 P.M., the nurse asked Mom and me to leave the room while she cleaned up all of the blood on Dad and changed some of his dressings and his gown. Between Dad’s bleeding episode and the handiwork of the interventional radiologist, Dad looked like an extra in a horror movie.

dramacross3When we returned to Dad’s room at 5:30 P.M., his dinner was waiting. As I started to get him ready for dinner, he proceeded to complain about everything, starting with his hearing aids. He then made a huge deal about the notations on his many bandages. When the nurses change dressings, they initial and date the top of the bandage so that other nurses can tell when the dressing was changed and who changed it. From Dad’s vantage point, the writing was upside down, and it annoyed him. I tried for a good 15 minutes to explain that the dates written on the bandages were for the benefit of the nurses, and not him, but without success. During this hospital stay, he frequently latched onto some notion like a junkyard dog and would not let it go. With this issue still unresolved, Mom and I finally said that we had to leave for the day. I was glad that he had had a good lunch because with all of his complaining, he hadn’t eaten much dinner. I hoped that he’d forget about the labeling of the bandages by the time that we returned tomorrow.


Some promising improvements toward recovery

August 30, 2018. Mom and I arrived at Dad’s room at 8:00 A.M. Aspen, his nurse, and Amanda, his aide (CNA), were in his room and were changing his dressings and his hospital gown. I noticed that Dad’s breakfast tray had arrived and was still covered. When Aspen and Amanda had finished getting him ready for the day, Amanda and I helped Dad take an aspirin and a Midodrine pill with some of the Nepro on his tray. Nepro is a thick liquid, which helped to make the pills easier to swallow. When Amanda left, I grabbed a bath towel and placed it over Dad’s chest like a large bib. With some help from me, Dad ate most of his Cream of Wheat, a scrambled egg, a few swallows of Nepro, and a few sips of warm coffee. Dad had not consumed any caffeinated coffee for several months, but now I encouraged him to sip the coffee in the hope that it might help him to stay awake. His diet hadn’t restricted caffeine intake and caffeinated coffee was included on his tray, so I assumed that I wasn’t treading on dangerous ground, although assumptions in this place could be dangerous.

glacialspeedcross3Helping Dad to eat was a bit challenging because he periodically fell asleep during the meal. Whenever his eyes were closed, I stopped feeding him. I would not let him put anything in his mouth unless he was awake with both eyes open. When he was finished with breakfast, I noticed that he had dried blood under his fingernails, and I grabbed a washcloth from the linen cart and started cleaning his hands. He bled easily these days, so there was no telling how his nails got into that state.

At 9:30 A.M., I had just sat down after cleaning Dad’s nails when Dr. Hunt arrived. He said that the orthopedic resident had stopped by this morning to change the dressing on Dad’s surgical site and said that Dad’s scar was healing nicely.

glacialspeedcross2Dr. Hunt added that Dr. Garland from hematology/oncology had left a note in Dad’s chart, recommending that they stop giving Dad blood thinners. Evidently, the doctors were unable to determine if Dad had developed heparin-induced thrombocytopenia (HIT). This issue about blood thinners and HIT was frustrating, and it seemed like I couldn’t get a clear answer. Dad had a blood clot in his neck, he seemed to need a blood thinner during dialysis, and he had AFib, yet the doctors were withholding blood thinners. When Mom had a bleed that was most likely caused by Xarelto, the cardiologist just about had a conniption when the neurologist stopped her blood thinner. I can only surmise that every case is different and I shouldn’t try to apply a universal solution to an individual problem.

During Dr. Hunt’s visit, Dad slept like Sleeping Beauty and we could not rouse him. After the doctor left, I decided to get some coffee from the cafeteria to see if that would help keep Dad awake, but I couldn’t wake him enough for him to take a sip. I tried yelling at him and clapping my hands next to his ear, but nothing worked. I found this deep sleeping troubling. We had experienced challenges waking him during his hospital stay in 2015 that turned out to be nothing, but it still made me uneasy.

glacialspeedcross1At 10:30 A.M., Amanda removed Dad’s heart monitor in preparation for his MRI. Because Dad was still sleeping soundly, I assumed that he would be easy to move and would be still throughout the imaging. However, moments later, the door opened and Sharon and Jim, two of my parents’ neighbors, walked into the room. As soon as Sharon said hello, it was as if a switch turned on inside of Dad’s head. Not only was he awake, but he was also alert with moments of clarity. I jokingly asked if they could stay at the hospital with us. During both of Dad’s hospitalizations, he would instantly transform from a confused state or wake from a deep sleep when my parents’ close friends entered the room. I never had a chance to ask anyone about it, but I wondered why friends might have a greater impact on Dad than his immediate family. Their visit with Dad was cut short when the transportation team transferred Dad out of the room for his MRI.

Mom and I visited with Sharon and Jim in the 6 North waiting room for about 45 minutes. When they left, Mom and I decided to wait for Dad in his room. As we entered his room, it sounded like we entered a room full of crickets. That familiar sound meant that Dad’s hearing aids were somewhere in the room, and near each other, and generating a lot of feedback. I eventually found them in the drawer of the bed tray and plugged them into their charger, which stopped the aggravating noise. Aspen later told me that as they were moving Dad from his room, she suddenly remembered Dad’s hearing aids and stashed them in the drawer for safekeeping.

pushmecross1Dad was still awake when he returned from his trip to the x-ray department. Moments after Aspen had him resituated in his bed, his lunch tray arrived. I was relieved that for once he would be able to eat a meal while it was hot. But as luck would have it, Angie and Judy from physical therapy arrived within seconds of the food tray. The hospital had its pecking order of providers and services at the hospital, and so did I. For me, physical therapy trumped food trays, so Dad would enjoy a lukewarm lunch after physical therapy.

The physical therapy team quickly got Dad sitting up on the side of the bed. Before they tried to have him stand, Angie hooked up his heart monitor while Judy adjusted the height of his walker. On the count of 3, they helped Dad stand up. He was still a little bent, but he stood up straighter than he had during his previous session. To help him stand straight, they had him look straight ahead at the large picture on the wall. Angie was able to get him to stand on his left foot and lift his right foot off of the floor. A few minutes into the session, they had a bit of a challenge getting Dad to keep his eyes open. I found it amazing that he could fall asleep during a physical therapy session. After Angie regained his attention, she had him stretch out his shoulders, and then she let him sit down on the side of the bed. After he rested for a few minutes, she had him stand up and then step to the left and then to the right, picking up his feet as he moved. Before they let him sit down again, he marched in place, albeit very slowly.

glacialspeedcross1When he was back in bed, they had him lift each of his legs. Angie said that he did fine, but tomorrow she would like to see him lower them with more control (versus plopping them down on the bed). Because of his severe fluid overload condition before he entered the hospital, he would not have been able to lift his legs. Mom often had to lift his legs onto the bed at night. During this hospital stay, Dad had had several liters of excess fluid removed during his four dialysis sessions. His legs were now much leaner and lighter. I was glad that Mom was here to witness this good session. I had been disappointed that she had missed his first session with physical therapy.

After the therapists left, I was able to help Dad eat some warm soup and mandarin orange segments before the transportation tech arrived at 12:35 P.M. to take him to dialysis. Unless a problem occurred, dialysis sessions lasted about four hours. I assumed that Dad would not return to his room before 5:00 P.M.

After Dad was transported from his room, Mom and I ate lunch in the hospital cafeteria. Under normal circumstances, we would have returned home for a couple of hours, but Mom had an afternoon appointment with her cardiologist, whose office was on the first floor of the hospital.

glacialspeedcross2Shortly before 2:00 P.M., David, the case manager, stopped by Dad’s room with a list of names of rehab facilities. Before Dad could safely return home, he would need a week or two of intensive physical and occupational therapy. We knew that we didn’t want to use Cornerstone, which is where he stayed following his previous surgery. The Brookdale Meridian, which is located less than three miles from my parents’ home, was Mom’s only choice. David wanted us to choose a couple of places, but we asked him to see if this one was available, and if not, we would choose another facility.

As we were walking to Dr. Ebert’s office at 2:30 P.M., my mobile phone rang and it was Jean from the Brookdale Meridian. She had a couple of questions about Dad and his possible checkout date. She also asked if I had any questions. If their care was anything like their responsiveness to new-patient referrals, Dad would be in good hands.

Mom’s visit with Dr. Ebert was basically routine, and she left this appointment with the medication refills that prompted her to make the appointment. Dr. Ebert is also Dad’s cardiologist, and she had many questions about his current status. I had contacted her before one of Dad’s appointments to inform her about his fluid overload condition, and she had tried to reinforce much of what I had been telling him about the consequences of his condition, with little or no effect.

pushmecross2When Dad returned from his dialysis session at 5:15 P.M., he was still wide awake. According to Aspen, he had the dialysis nurse call the nurses’ station a few times to see if his wife was OK. Usually, Dad sleeps through dialysis, so Mom and I were surprised to see that he was awake and alert when he returned. I marveled at the change in him since this morning.

After Aspen changed Dad’s gown and linens, I helped Dad with his dinner. I noticed that it seemed to take him a long time to swallow. When I asked him if he was having trouble swallowing, he said, yes, a little bit. I gave him a few bites of turkey and gravy, beans, and he drank a little Nepro. When it seemed that it was taking him a long time to clear his throat, I asked again if he was having trouble swallowing and he said, yes. When I asked him to explain about the trouble that he was having, he started snoring, putting an end to our conversation and his dinner time. By now it was 6:45 P.M., and Mom and I were tired and ready to go home. On the way out, I quickly explained Dad’s situation to Aspen. When I got home, I texted Adan and expressed some concern about Dad’s problems with swallowing. He responded and said that he would stop by in the morning to check on Dad.

glacialspeedcross3Dad’s days were such a mixed bag. The day could start bad and end bad with intervening good hours, or any combination of good and bad periods. I was frustrated that we couldn’t seem to get one solid good day.


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.



Out of ICU, but not the sort of day we had envisioned

August 28, 2018. Mom and I arrived at the hospital at 8:00 A.M. This was Dad’s first day out of the ICU, and we were optimistic about the day. When we arrived at room 634 North, Dad was sleeping, and I thought that he looked terrible. His face was more swollen than I had ever seen it. Also, I was concerned about his coloring, so I wondered about his oxygen saturation. We were able to wake him, but he kept dropping off to sleep in mid-sentence. His oxygen mask had been removed, and I didn’t know if he kept dropping off to sleep because of low oxygen, fluid overload, or if he was just naturally sleepy. He complained of constant interruptions during the night and said that someone had come into his room this morning, but I was never sure if he was remembering dreams or reality.

transitionCross1At 8:15 A.M., Conner, Dad’s nurse, entered Dad’s room for the first time since the shift change at 7:00 A.M. Following our introductions, she accessed Dad’s chart and told us that Dr. Jennifer Moran, the attending physician for 6 North, had asked for someone in Orthopedics to look at Dad’s surgical wound vac. It had been in place for more than five days, and it seemed to the doctor that it might be clogged. When I asked her if Dad was scheduled to receive physical therapy, she said that only speech therapy was on his schedule, but she would ask for physical or occupational therapy today.

When I asked if he was scheduled for interventional radiology (IR) to have the clog in his fistula removed, she confirmed that he was on the IR schedule for 1:00 P.M. today. With the IR appointment scheduled for the afternoon, I was fairly certain that Dad would not receive dialysis today. However, his ability to receive dialysis hinged on whether or not IR could clear the clog in his fistula.

transitionCross2I had barely finished speaking with Conner when someone from the Transportation team arrived to take Dad to IR. I should have learned a long time ago that schedules in the hospital were fluid and much like those of remodeling contractors. To help the Transportation aide prepare and move Dad to the gurney, Conner summoned Miguel, Dad’s aide (CNA). I learned then that Dad had indeed remembered reality and that it was Miguel who had interrupted Dad’s sleep early this morning.

Because someone had to sign a consent form before IR could perform the procedure, one of us needed to accompany him to IR. Either one of us could sign, but we both wanted to accompany Dad, who was now sleeping soundly on the gurney. We arrived at IR at 8:35 A.M. Ten minutes later, Nathan, an IR nurse took Dad’s vitals and obtained some background information about Dad from us.

transitionCross2One of the interventional radiologists is a member of FUMC-Temple, my parents’ church. I was pleased when I saw that it was Dr. Dollar who entered Dad’s bay. I reminded him that Dad had been a patient of his twice before and told him that Mom and I had attended his daughter’s confirmation. We joked that the pastor would give the doctor hell if the procedure didn’t go well. Before Mom and I left Dad, Dr. Dollar mentioned that because the attending physician wanted to know if Dad had Heparin-induced thrombocytopenia (HIT), they would test him for that. Because Dialysis patients usually received Heparin before and during dialysis to prevent blood clots, they could develop HIT over time. We woke Dad, kissed him, and let him know that we would be waiting in his room for him. At 9:20 A.M., Kristi, the IR surgical nurse, wheeled Dad from his bay and Mom and I found our way to the x-ray waiting room.

Mom needed to have some of her heart medicine prescriptions refilled. Unfortunately, her primary care physician who wrote the prescriptions had recently retired. I thought that Mom’s cardiologist should prescribe all of her heart medications, and we decided to schedule an appointment for Mom to see her. Because Mom’s cardiologist works in the Scott and White Heart Center, which is located on the first floor of the hospital, we decided to spend some of our wait time scheduling an appointment.

transitionCross2At 10:25 A.M., Mom and I walked back to the x-ray waiting room to check on Dad’s status. We were told that they were almost finished and that we could wait there to speak with the surgical nurse. A few minutes later, Kristi, who had assisted Dr. Dollar, said that they were able to remove the clot and that he should be able to have dialysis at any time, which was excellent news. Because this procedure had been successful, Dad would not require another procedure to insert a dialysis catheter, which could have increased his odds at contracting an infection.

We arrived at Dad’s room about 15 minutes before he did and in time to speak to the nephrology team, which was making their morning rounds. They asked us if we knew the results of Dad’s procedure. When I relayed what Kristi had told us, they said that they would schedule Dad for dialysis this afternoon. I had been very worried about Dad’s apparent fluid overload condition this morning and was pleased that he would have some of that excess fluid removed today. He had had a lot of dialysis in the eight days that he had been here. I prayed that he could maintain his blood pressure until all of the excess fluid was removed.

When Dad returned to his room, Conner changed the bandages that protected his recent skin tears and took his vitals, which were great. She also said that she would remove the annoying wound vac that had been left on by the orthopedic surgery team. It didn’t seem to be helping Dad’s situation and was just another annoyance for him.

transitionCross1Mom and I left for lunch at 11:30 A.M. so that we could get back to Dad’s room before he went to dialysis at 1:00 P.M. However, when we arrived at Dad’s room at 12:45 P.M., he was already gone. At 1:00 P.M., Conner stopped by Dad’s room. She told us that she had just returned from accompanying him to the dialysis room, and would be glad to take us there so that we could be with Dad. I had a deadline to attend to and opted to stay in Dad’s room while Mom went to sit with Dad.

At 2:30 P.M., Mary, a hospital pharmacist, came to Dad’s room to ask me about his at-home medications. She wondered if Dad was using more than one pharmacy because most of his medications had not been refilled in quite some time. I found this news disturbing, yet not surprising. Dad often (defiantly) said that he was not taking his medications. There was one, Renvela, that I hoped that she would find had been refilled at the Veteran’s Administration Hospital, but I wasn’t holding out much hope.

transitionCross2At 3:40 P.M., Dr. Potter and Dr. Murdette stopped by to check on Dad’s fistula. Dr. Potter is Scott & White’s new transplant surgeon and had replaced Dr. Gregory Jaffers, who had recently retired. The transplant team performs the fistula surgery, and Dr. Jaffers had performed Dad’s fistula surgery in 2016. Dr. Potter said that he had been in surgery all day and hadn’t had a chance to see Dad and had hoped to meet him. I assumed that Dr. Potter had heard about the clot in Dad’s fistula and thought that he should meet him should he have to repair the fistula. I told him that the IR procedure had gone well and that Dad was having dialysis now.

Dad and Mom returned from dialysis at 5:15 P.M. As Conner was getting him resituated in the room, she told me that they were able to remove only 500 ml from him today because his blood pressure kept dropping. After receiving that disappointing news, I asked her about the results from his latest labs, which were run this morning. It seemed that his WBC count had jumped from a normal range of 10 yesterday to an elevated 14 this morning. I was very concerned that Dad was fighting a new infection.

transitionCross1Dr. Moran stopped by at 6:15 P.M. I expressed my alarm at Dad’s elevated WBC count, but she didn’t think that it was an issue because he didn’t have an elevated fever and his blood pressure was good. She told me that today was the last day of her rotation. Starting tomorrow morning, Dr. Hunt would take over as the attending physician. If Dad was developing an infection, she said that Dr. Hunt would be a good attending physician for Dad; in addition to being an internist, he was also certified for infectious diseases.

Mom and I left the hospital at 7:15 P.M., tired and unsure of Dad’s status. I hoped that Dad’s uptick in his WBC count was of no concern. Mom and I were both tired, and I was now worried about her continued weight loss. She suddenly seemed frail to me and she had no energy. She also had no appetite and I could not get her to eat more than a couple of bites of dinner; however, she did eat an ice cream cone.

transitionCross3I had only planned for a short trip to Temple for Dad’s surgery on August 22, and I was now out of clean clothes. It seemed like my trip would be extended for some indeterminate time, so I had to wash some clothes before I could go to bed. I was tired and frustrated and capped off my evening by being a jerk and snapping at my exhausted mother.

Before going to bed, I called my husband, Stan, and updated him on the activities of the day. Before we hung up, Stan said that tomorrow would be a better day. From his lips to God’s ear.



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.

Attempting to recover at home

April 13, 2018. A lot had happened since our last visit to Temple. Dad had checked himself out of Cornerstone, which meant that instead of receiving daily physical and occupational therapy, he would receive physical therapy twice a week at the Roney Bone and Joint Institute. After Dad’s unorthodox transfer home, Stan and I were anxious about his situation and were eager to set eyes on him.

home4Cross2Stan and I left Houston for Temple shortly before 3:00 P.M., but because of an accident in Cameron that closed the road in both directions, we didn’t reach my parents’ home until 6:30 P.M. Shortly after we arrived, I learned that Dad had not been out of his wheelchair since his last physical therapy treatment on April 10. In principle, Mom would help Dad with his rehab exercises between sessions with the therapists, so I was a bit concerned that nothing had happened since he had been home.

We had a nice evening, and I tried to contain myself and not say anything about Dad’s lack of therapy since his return home. The four of us discussed some of the chores that they needed Stan and me to do over the next two days. We played Oh Hell, and I won.

home4Cross3April 14. Following our Saturday breakfast of homemade waffles, we reviewed and refined the list of chores that Stan and I needed to tackle today. Mom and I went to Academy, Walgreens, and WalMart. Dad had asked Mom and me to find some exercise aids that he could use at home. We purchased a couple of items from Academy, but I doubted that he would use them. They were simple and inexpensive so our loss wouldn’t be significant. After we returned from our shopping expedition, I tried, without any success, to encourage Dad to try walking a few steps with his walker. I hoped that he would try walking a few steps before we left for home tomorrow.

IMG_3501My parents had a large vegetable garden. Between Dad’s stint in the hospital and rehab and Mom looking after him, weeds had taken up residence among the tomatoes, squash, beans, and cantaloupe. While surveying the garden, I wondered why the vegetables couldn’t be as low-maintenance as the weeds. After lunch, I weeded the vegetable garden while Stan planted a couple of rose bushes and a couple of saplings in the yard. The day before Dad fell, he had placed bags of mulch in the front gardens. A couple of weeks ago, Stan had spread the mulch but thought that we needed to purchase a couple more bags, but Dad wanted only to use what he had purchased. When I had finished weeding the vegetable garden, I redistributed mulch in the front gardens. I had often said that my parents’ large yard kept them active and was good for their health. The large yard was now becoming a chore for Stan and me, and we fantasized that they would consider downsizing.

home4Cross4During our happy hour, Dad announced that he and Mom had decided that they could not continue living in their home for many of the reasons that concerned Stan and me. Dad said that they wanted our opinion and looked to us to do some research. We discussed many options, and it seemed that they wanted to move into a small house, which wasn’t my first choice for them. However, I knew of a 55+ community in The Woodlands and discussed its possibilities. I allowed myself to dream of all sorts of possibilities that included them living in or near Houston.

April 15. While Mom and I attended church, Dad and Stan played cribbage. After lunch, I tried again to get Dad to walk a few steps with his walker before we returned to Houston, but was unsuccessful. Stan and I left at 2:40 P.M. and arrived home at 5:50 P.M. Although we were concerned about Dad’s lack of therapy, we were very encouraged that my parents were open to moving.

home4Cross3April 16. I spent a few hours scouring the web for independent-living communities in Harris County that had decent reviews. I spoke with a representative from an independent-living community in The Woodlands, Texas. The community sounded exactly like what my parents wanted, but I wasn’t convinced that this was the best place for them. Although it provided many amenities, it was a gated neighborhood that didn’t provide transportation, which could be problematic in the future. I did a little more research but didn’t find anything that I liked well enough to suggest without first visiting the property.

April 28. Stan had a bad cold, so I traveled to Temple today without him, arriving at my parents’ home shortly after 10:30 A.M. My mother had been worrying the heck out of me with her stylish shoes that wouldn’t stay on her feet. During the past year, Mom had lost a lot of weight, and now her slimmer feet often stumbled out of her shoes. Sunday had become one of the most dangerous days of the week as her shoes fell off while we walked to and from the church. I had told her that we would shop for some stylish, yet sensible, shoes as soon as I arrived.

After finding the perfect shoes, we dashed into HEB for a few groceries and then went home for lunch. Dad told us that he had exercised four times while we were gone. Because he had “exercised,” he wasn’t willing to walk with the walker.

home4Cross2I had a difficult time hiding my disappointment when Dad told me that he and Mom had decided to stay in their house and not move. Several thoughts came to mind, but for once, I decided to keep my thoughts and concerns to myself. However, I wished that they had told me sooner about this decision so that I wouldn’t have wasted so much time looking for viable options for them.

We ended our evening with a game of Oh Hell, and Mom won.

April 29. Mom and I attended church this morning, which gave her the opportunity to test and show off her new shoes. I still wasn’t able to get Dad out of his wheelchair, so I had to settle for batting .500 during this weekend trip.


Leaving rehab just a tad too soon

April 6, 2018. Today was my last day of employment. After 19 years, one week, and one day with my employer, I had been informed that I was ready to pursue other interests. In anticipation of my employer’s significant US layoffs, I had left Temple last Thursday so that I could be in the office in case I was included in the reduction.

badRehabCross7My week in Temple for Dad’s surgery had put me behind in many of my responsibilities at home, so when Stan suggested that we return to Temple tomorrow, I brought up several reasons why I could not leave town for the weekend; besides, he had plans to play golf on Saturday. When he said that we could drive to Temple after golf, I agreed to the trip.

April 7. I hit the ground running and finished my grocery shopping before Stan left to play golf. While he and his friend Mike were playing a couple of rounds of golf, I checked off tasks on my to-do list and was ready to leave town when the guys returned at 2:00 P.M., and we left home shortly before 4:00 P.M.

badRehabCross5I had decided that I would not tell Mom that we were coming for a short weekend visit. Knowing her the way that I do, I knew that she would try to tidy up the house or prepare dinner during our three-hour drive. When we were about two miles from Cornerstone, I called Dad. Although he answered his phone, he couldn’t hear me. We continued our drive to the facility and surprised him when we walked into his room. During our 20-minute visit, I adjusted the speaker control on his phone so that he could hear callers. I then called Mom and told her that Stan and I were with Dad and that we would be arriving soon. In the 30 minutes that elapsed before we arrived at my parents’ home, Mom had rushed around the house, trying to tidy up. Truth be told, even when she thought that the house was a mess, it still looked like it was minutes away from a photo shoot for House Beautiful magazine.

April 8. Stan was right to suggest that we visit my parents this weekend. It was obvious to us that Mom was approaching the end of her rope. With Dad away, she wasn’t sleeping well, and she was skipping meals. During the day, she spent most of her time at Cornerstone and then was distressed about not getting anything done at the house. She was also too tired to cook when she got home and had lost weight that she couldn’t afford to lose. During our short visit, I prepared six protein- and carbohydrate-rich single-serve casseroles for her to eat. I didn’t want her to get sick while Dad was in rehab.

badRehabCross2April 10. Dad had been the sole occupant of his semiprivate room and had been enjoying his privacy. Although the Cornerstone staff encouraged patients to visit some of the common areas, Dad had no interest in leaving the room except for physical therapy. Today the staff notified him that he would get a roommate on Friday, three days from now. Shortly after receiving this news, he started complaining in earnest about the facility. He didn’t like the therapists, and the room was too small. I agreed with him that the rooms were small, but the rehab stay was supposed to be short, and he could leave his room and spend time in the common areas. Nothing that I said about the facilities and the purpose of rehab seemed to sway his opinion. Dad now seemed to be more concerned about his accommodations and not about his rehabilitation mission.

Dad had his first post-op appointment with the orthopedic surgeon today, and my parents used the services of the Cornerstone bus to get to the clinic. The surgeon wasn’t there, but they met with his physician’s assistant (PA). She told my parents that she could order outpatient rehab for Dad (which he would receive twice each week) and that he could leave Cornerstone at any time.

badRehabCross7With the blessing of the surgeon’s PA, my parents decided to check out of Cornerstone before Dad’s roommate was admitted to the facility, and several days short of the recommended two-week stay. Mom assured me that she would help Dad with rehabilitation exercises on the days between physical therapy. The separation was taking a toll on Mom, Dad didn’t want a roommate, and they had decided that they didn’t think that the therapy was helping. I was opposed to their plan, but she said that it was their life, and she was right.

Mom had not eaten dinner last night, and I was relieved to hear that she ate one of the prepared single-serve casseroles tonight. I hoped that she would start taking better care of herself when Dad got home. On the other hand, Dad had been eating well, although it didn’t seem that Cornerstone had been serving him a renal diet.

At 9:45 P.M., I received a call from a Cornerstone employee. She had been trying to call Mom but it didn’t seem to her that the phone number was correct. After telling me the number that she had called, it was apparent that she had transposed a couple of the digits. When I asked her if there was a problem, she said that Dad had slid out of bed and was found on the floor. She went on to say that Dad had been uncooperative, but they helped him back into the bed and he seemed unhurt.

badRehabCross4After hanging up, I tried calling Dad at Cornerstone to get his side of the story and see how he was doing, but after the phone rang a few times, I decided to hang up. I didn’t want him to try to get to the phone if it happened to be out of his reach. I called Mom, and she was breathless when she answered the phone saying, “Melody, is it Dad?” The ringing phone had awakened her, but by the time she reached it, the caller had hung up. My call came moments later, and I told her about the call from Cornerstone. Mom said that the incident surprised her, saying that he had been out of bed before to use the bathroom. This incident only heightened my concern about Dad coming home early.

April 11. My parents’ next-door neighbor, Jo, and her caregiver arrived at Cornerstone this morning to help get my father home. My parents called these two women angels, and they were. Mom had not called them; I didn’t know how they knew that Dad was leaving, and I don’t know how Mom would have been able to transfer Dad into the car and then transfer him out of the car and into the house. My parents didn’t have a wheelchair yet, so their friend used an office chair to get Dad into the house from the car.

A representative from American HomePatient, the provider for the wheelchair, called me today. She was trying to call my parents, but their records had my parents’ former phone number, which had changed after my parents returned the last rental wheelchair to American HomePatient.

badRehabCross2When I called my parents’ home, Dad answered the phone and told me that Mom was at WalMart. She was shopping for medical supplies that she would need to care for Dad. During our conversation, he told me that he would start receiving physical therapy on April 23, 12 days from now. This news worried me, which seemed to be my default state these days. When I expressed my extreme concern about such a long gap in his therapy, he said that he and Mom were just old people trying to get by the best that they could. So now, in addition to being worried, I was also feeling guilty for questioning all of their decisions.


So far, so good at the rehab facility

March 30, 2018. After spending most of the week with my parents, I was now back home in Houston so that I could spend the Easter weekend with my husband. I was pleased to learn that Dad had received physical therapy today. He had not received physical therapy every day at the hospital, so I hadn’t assumed that he would have therapy today. In the hospital, physical therapists didn’t work on the weekends, and I didn’t know if physical therapists worked on the weekends at the Cornerstone rehab facility. Having therapy today lessened the potential gap in his treatment. To ensure that Dad would reach his physical therapy goals in the targeted time, he needed frequent sessions. Significant gaps between sessions could slow his progress or cause him to regress. My parents and I were intent on Dad being able to safely leave Cornerstone within two weeks.

goodRehabCross1Shortly before 11:00 A.M., the case manager called me from Scott & White Hospital to tell me that Dad was still in the hospital but would be transferred to Cornerstone later today. She said that she had tried to reach my mother, but no one answered the phone. I told her that I was in Houston, but my mother was with my father at the hospital and that she could speak to both of my parents by going to his room. I was a bit surprised that she had not tried Dad’s room first. Even if my mother hadn’t been there, Dad would have appreciated knowing the details of his transfer.

Later today turned out to be noon, just an hour after she called me. The previous occupant of Dad’s semiprivate room had already been discharged, so Dad had the room to himself. I hoped that he would have a private room for a few days. He didn’t receive any physical therapy during the afternoon, so I was thankful that he had received therapy this morning at the hospital.

When Mom called me a little after 5:30 P.M., she told me that the day had gone very well and that Dad was determined to be fit enough to go home in five days. Mom’s enthusiasm and optimism about today’s events rubbed off on me, and I had a good feeling about Dad’s prospects.

goodRehabCross5March 31. I wasn’t sure what time Mom planned to leave home this morning for Cornerstone, so I called her mobile phone, hoping that she might have it with her. Mom usually kept her phone in her purse and had a difficult time answering it before the call was transferred to voicemail. I knew that Dad kept his phone on the bedside table, so when there was no answer, I tried his mobile phone number. As I had expected, Mom answered Dad’s phone.

I could hear a lot of background noise during the call, and Mom said that Dad’s room was a hubbub of activity. The occupational therapist and an aide were getting Dad ready to take him to the shower, which was located down the hall. Because of all of the distractions, I told her that I would call her later this afternoon.

goodRehabCross2When I called Mom at 5:30 P.M., she gushed praises about the physical therapist. Mom said that the therapist was kind but firm and that she did a great job with Dad. After spending an hour in physical therapy, my exhausted father returned to his room. I don’t know how much time he spent with the occupational therapist this morning, but if every day was like today, Dad just might be ready to leave in less than a week. I was very pleased that the residents of Cornerstone received therapy on Saturdays. Because tomorrow was Sunday and a holiday, I didn’t think that he’d receive therapy, but at least he would have only a one-day gap in his treatment.

April 1. Today was Easter Sunday, and I called Dad’s mobile phone as soon as I returned home from church. After four rings, the call went to voicemail. I called again with the same result. On my third attempt, I received a text from him, which had to have been the result of some fumbled fingers because he does not text. Now that I knew that he was there and most likely was holding his phone, I called again, and this time he answered. We talked for almost 25 minutes. He was in a great mood. He said that Mom had been there for a couple of hours before she went to church. The Cornerstone staff had delivered bags of Easter candy to the residents, and he proceeded to itemize the contents of his bag during our call. When he found the six-inch Hershey bar, he said that he would start with it. While we were talking, a caregiver arrived with his meds. He told her that he was on the phone and would take the pills later. In jest, I told him to take the pills with his candy.

After all of the effort that it took to convince him to enter this facility, I was thrilled with his positive attitude and good mood. We had a great talk, but when his lunch arrived, he was done with me. Evidently, Cornerstone’s food was pretty good too.

goodRehabCross3Mom called me a couple of hours later from Dad’s room. Dad was in physical therapy, and because my parents’ neighbors said that they might visit this afternoon, she remained in Dad’s room during his session. While Mom and I were talking, an aide wheeled Dad into his room. I was thrilled that he had had therapy on a Sunday, and Easter Sunday at that. At the end of our call, I was feeling good about this facility and Dad’s care. It seemed that his stay at the Cornerstone facility was going to exceed my wildest expectations.