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.

 

Tap dancing along the slippery slope to recovery

Before Dad’s hospitalization, his organs had been in pretty good working order. However, the aspiration and sepsis events impacted his kidneys, which resulted in his dependence on dialysis. To say that my father hated dialysis is an understatement. He hated the inconvenience of it, how it interfered with his ability to travel, and how much it tired him. In addition to the four-hour sessions that impacted his daily life, he also had issues with the dialysis center. Although the place was spacious and had nice dialysis beds, Dad’s opinion of the facility changed drastically when he moved from being a dialysis catheter patient to a fistula patient.

tappingCross1Because of the potential for infection, only RNs can work with dialysis catheter patients. However, techs are trained to hook up dialysis patients who have fistulas. My father quickly learned that not all techs are created equal. Dad had a problem with bleeding, which could be reduced or avoided if the tech took care when removing the needles at the end of the session. A couple of careless techs caused bleeding that the nurses at the dialysis center could not stop within 60 minutes, which was their threshold for calling 911. As you might expect, going to the emergency room significantly increased the time required to solve the problem. During one of Dad’s trips to the ER, the paramedics stopped the bleeding during the two-mile trip to the hospital, but because of their protocol, they still had to take him into the ER, and blood was drawn as part of the normal procedure (ironically, to ensure that he had not lost too much blood). If that wasn’t enough, my parents paid a $200 co-pay for the privilege of visiting the ER.

I generally heard repeated versions of Dad’s war stories during each phone call and visit to my parents’ house. I inherited many of Dad’s unfortunate circulatory traits, so I’m pretty sure the bleeding episodes would have also left me cold, if not bitter. It didn’t help that the decorum of the techs seemed a bit unprofessional and cavalier, and sometimes inappropriate. During my few visits to the dialysis center, I wondered if similar behavior by some of the techs might warrant a call to the Human Resources department.

tappingCross3Several years earlier, my mother had been the president of the Colorado Mesa University (CMU) foundation. Their annual meeting was scheduled for November 2017, and past presidents usually attended this meeting. Dad wanted Mom to attend, and he wanted to accompany her, which meant that he would need dialysis during their trip. CMU is located in Grand Junction, Colorado. Although Grand Junction and Temple are similar in size and population, I suspected that Grand Junction would not have a dialysis center that could match Temple’s. According to my parents, I couldn’t have been more wrong. Although it fell short in square footage, it whomped the Temple facility in the professionalism of its staff. When Dad asked one of their techs why they didn’t have chairs, she replied that she wouldn’t have had time to sit even if they had chairs. This environment contrasted sharply with that of the Temple facility.

I wasn’t surprised when Dad started needling Dr. Issac, his nephrologist, to test him to see if he still needed dialysis. Unlike most of the dialysis patients, Dad often had only the minimum amount of fluid removed during his dialysis session. Although Dad’s tests showed that he still required dialysis, Dad was able to convince Dr. Issac to reduce the time from 4 hours to 3-1/2 hours. Dad eventually got the doctor to reduce the time to 3 hours, which enabled him to get home before 11:00 A.M.

tappingCross2Because Dad received co-pay bills for physician visits to the dialysis center, he decided to take advantage of his VA benefits. Temple is near Fort Hood and has a large VA facility not far from my parents’ home. During Dad’s first visit to the VA’s nephrologist, that doctor allegedly told Dad that he didn’t think that Dad needed dialysis, which alarmed me. Dr. Issac had been treating Dad for two years, and this VA doctor had seen Dad for 15 minutes.

Now that Dad was convinced that the local dialysis center was less than stellar, he despised it more than ever and embraced the comments of the VA doctor. Armed with these convenient comments from the VA doctor, Dad was able to convince Dr. Issac to run another series of tests to check Dad’s need for dialysis. When reviewing the test results with Dad, Dr. Isaac said that Dad’s condition was borderline, and suggested that nephrology personnel closely follow Dad while he took diuretics. If the trial of diuretics worked, Dr. Issac would remove Dad from dialysis.

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For all intents and purposes, Dad had approximately three liters of fluid removed each week, which would still need to be removed. With my parents’ blessing, Dr. Issac called me to ensure that I understood his plan so that I would be knowledgeable enough to discuss the process with my parents. In short, the doctor wanted Dad to go to the dialysis center once a week for blood work, weigh-in, and blood pressure check to see how well the diuretics handled Dad’s excess fluid. Dr. Issac prescribed that Dad take three tablets daily. I don’t know what Dad expected, but the diuretic had an immediate effect. Dad said that there was no way that he would take three pills a day. As a matter of fact, he said that he might take only one pill a week.

tappingCross1Dad went to the dialysis center on December 11 for his first weekly checkup, and according to my parents, the results were fine. When the nurse tried to schedule another appointment for December 20, Dad said that he would not see any doctors during the Christmas holiday. I was disappointed because I had wanted to accompany him (and the doctor wanted me to accompany Dad) on this appointment. While I was visiting my parents during the Christmas holiday, someone from the Scott & White dialysis center called the house and scheduled a follow-up appointment for Dad on January 26, 2018. I was concerned about the significant interval between visits and the lack of supervision during this test, especially now that Dad was taking the diuretics on a haphazard basis.

On January 21, 2018, I emailed Dr. Issac and updated him on what my father had and had not been doing. I asked if he could revisit Dad’s prescription during Dad’s January 26 appointment so that Dad might be more inclined to take the pills. I wasn’t expecting a response from Dr. Issac, so I didn’t log on to Dad’s MyChart account to see if the doctor had replied.

tappingCross2Unfortunately, the doctor did reply to my email the next day stating that Dad did not have any appointments scheduled with physicians at Scott & White, and then he asked me who Dad was seeing. My parents learned about the non-existent appointment when they showed up at the dialysis center on January 26. They were so mad that they vowed never to return to the dialysis center or see Dr. Issac. I was also very upset, but for different reasons. Not only did I respect and like Dr. Issac, but it had also now been more than a month since Dad had started self-medicating without the knowledge of a physician. Worse still, the more that I encouraged him to take the pills, the more that he dug in his heels to do as he pleased. The more that he resisted taking the prescribed drugs, the more I worried that he was dancing too close to the edge.

Birthdays, emergency room miracles, and healthcare milestones

June 18, 2016. Stan and I were in Temple to celebrate my birthday, which had been on June 9 and Father’s Day, which was this Sunday. This weekend marked the return to our tradition of celebrating Father’s Day and my birthday at the same time. On my last birthday, Dad had been unable to swallow, let alone eat cake. His condition had remained unchanged for Stan’s birthday in July, Mom’s birthday in August, and his birthday in October. During that time, I had become resolute that when Dad could eat cake again, I would bake a cake that represented all of the missed birthdays. I envisioned a cake of four layers: a layer for each of us.

I’m partial to rum cake, Mom likes carrot cake, Dad likes chocolate, and Stan likes apple pie, so he would have to be happy with a reasonable cake alternative. To help expedite the process, I purchased four boxes of cake mix and pulled out the cake pans.

IMG_1878The finished cake sported numeral-shaped candles, each candle representing the second digit of our ages: 1, 2, 8, and 9. I had not considered the weights of the layers, and when I was finished, the cake resembled something that you might see in a Dr. Seuss book. I also hadn’t anticipated how much extra cake we’d have. Needless to say, we would not run out of dessert for quite some time. We all were able to enjoy our favorite day, and I was thankful that all four of us could eat cake.

July 1. Today was a big day for Dad. Dr. Jaffers had decided that the fistula was sufficiently cured and could now be used for hemodialysis. After more than 13 months of receiving dialysis via a tunneled hemodialysis catheter, today the catheter would be removed. He had had this catheter since September 29, 2016, just over nine months.

birthdayCross1Like many of the other procedures that Dad had had, this one would be simple and would be performed in the interventional radiology (IR) department by Dr. Dollar, the same interventional radiologist who placed the catheter in September.

The three of us arrived at the Interventional Radiology department at 12:30 P.M., and Dad was wheeled away in a gurney approximately 20 minutes later.

The nurse brought him back to the recovery area at 1:40 P.M. It seemed that the procedure had not been as simple as anticipated. Because the catheter had been in place for nine months, his body had sort of glommed on to it. As we left, the nurse told us that Dad would need to wear his dressing until Sunday afternoon, two days from now. If he showered before that time, he would need to protect the dressing with a shower shield. Once the dressing was removed, he could shower like a regular person. This news had been a long time coming and was like music to our ears, especially Dad’s.

IMG_1947After dinner, I asked Dad if he or Mom had checked his dressing since he had come home. Mom said that she hadn’t checked it, so we asked Dad to unbutton his shirt for us. The dressing was very bloody, and even Dad was concerned about the pool of blood that had collected. It was now after 7:00 P.M. on a Friday and holiday weekend. This was the second time that we had scheduled a simple procedure on a holiday weekend, which made me question our sanity.

We located the papers that the nurse gave Dad when he was discharged. I called the after-hours phone number and asked to speak with the on-call IR resident. After being connected to Dr. Jeffrey Rhea, he asked me a series of questions to help him decide our best course of action. I asked him if I could text him a photo of the dressing area. He liked that idea and at 7:30 P.M., I sent him the first photo. He called me and asked for another photo that included more of the clavicle area, which was the region of his primary concern.

birthdayCross4After reviewing both photos, he said that he didn’t see anything emergent and suggested that we stop by the IR clinic on Saturday after dialysis. As much as Dad hates the Scott & White emergency department, he, Mom, and I decided that he should get rid of the oversaturated dressing before tomorrow afternoon. I texted the doctor and told him that we were going to the emergency room. While en route to the hospital, he texted me as asked for our ETA. When we stopped at a signal, I responded that we were less than five minutes from the hospital.

At the hospital, I was thankful for Dad’s accessible parking placard because, except for the accessible parking spots, the parking lot was full. With me nervously holding on to the back of Dad’s shirt, he walked into the hospital on his own. As I had expected, the waiting room was packed. In the intake line, one person was ahead of us and speaking with the clerk. Off to the side, I noticed a woman telling a hospital employee that her daughter had arrived earlier in an ambulance and was in triage. She was late getting inside because it took her several minutes to find a parking space. When the person in front of us left, I held Dad back and told him that we would let the concerned mother go ahead of us. The slight delay would serve us well.

birthdayCross4When it was Dad’s turn, he explained to the clerk why he was there. When she finished questioning him and completing her paperwork, she told Dad to raise his arm so that she could fasten his ID tag around his wrist. At that moment, Dr. Rhea seemed to appear out of thin air, grabbed the ID bracelet, and said that he’d take care of us. He then told me and Dad, who was now in a wheelchair, to follow him to the end of the waiting room. We waited there while he gathered supplies from a couple of cabinets. As he was about to remove Dad’s dressing in the middle of the hallway, I reminded him that we were sitting in the middle of the main thoroughfare between the waiting room and the examination rooms. He acknowledged that the location might be problematic and had us move out of the waiting room, although we were still in a hallway. One of the ER nurses gave us a questioning look when she saw my father and all the blood from his dressing. I laughed and said, “Is this the OR?” She replied, “No, this is the ER.” Dr. Rhea quickly explained that he was just changing a dressing and would be out of the way in a few minutes.

When Dr. Rhea was finished, he wheeled Dad back to the waiting area and toward the entrance of the hospital. As we wheeled Dad to the parking lot, we thanked the resident doctor profusely. I’m fairly certain that our resident violated hospital protocol, but we appreciated his “git ‘er done” attitude. This trip to the hospital was truly an emergency room miracle: we completed the trip from home, to the hospital, and home again in less than an hour. When we got home, Dad was wide awake and was in the mood for a long game of Oh Hell, which he won. After a day like today, he deserved to win.

birthdayCross3For all intents and purposes, this surgery marked the official end to Dad’s health care odyssey—a mere 420 days after he entered the hospital for elective heart surgery. He would still need to gain some weight and strength, but he was now driving, attending church, and getting around my parents’ acre lot with little to no assistance from his cane, and he used his walker only when he went to dialysis. He had beaten the incredible odds against him and was a walking miracle.

As we looked back on the events of the past year, we acknowledged that there were a lot of couldas, wouldas, and shouldas, but we can’t change the past. We’d have to chalk up our experiences as lessons learned that we could share with others. As I had learned from my own experience with the hospital, it was easy to get sucked into the medical system and lose control of the situation and maybe even lose money. Having advocates and second opinions are vital for negotiating the healthcare industry.

 

The patients are doing better, but now the caregiver is down

June 1, 2016.  The headache that I woke up with yesterday had not subsided and woke me up at 12:51 A.M. I took more of Dad’s Extra Strength Tylenol and then vomited about 30 minutes later. The pain made it impossible to sleep and made me less than productive when I started working at 4:00 A.M. I attended one of my meetings but had to cancel the remainder of my meetings. At 7:00 A.M., I went back to bed.

fastCross1My husband suffers from migraines, but I very seldom get headaches, so Mom was very concerned. She called her doctor’s office to see if I could see the doctor today, but they didn’t have any openings. We didn’t want to go to the emergency department, so his nurse suggested that Mom take me to an urgent care center. The one closest to the house opened at 9:00 A.M., and we were waiting in the car when they unlocked the doors.

After a short wait, Mom accompanied me to the examination room. After the doctor asked me a few questions and had me walk across the room, he told me that he suspected that I was having a stroke. After the events of the past year, this diagnosis seemed like a bad dream, and I hated that my mother had to hear it. The doctor said that the only way to conclusively diagnose a stroke would be to go to Scott & White, the very place that I had been trying to avoid. Before I left, the doctor handed me a couple of prescriptions for back pain and the headache. Because I was headed for the hospital, I didn’t want to take the prescriptions, but after the doctor all but insisted that I take them, I put them in my purse. After having spent $125 at the urgent care center, we drove a couple of miles to the Scott & White Emergency Department (ED). Dad had a doctor’s appointment this morning, so I told Mom to drop me off at the door and then go home and take care of Dad. If I had learned nothing else this past year, it was that once you walk through the door of the emergency department, you’re there for a few hours.

ouchCross4Unbelievably, the waiting room was empty. Two nurses triaged me and took me right to an examination room. Although this might seem like standard operating procedure (SOP), in my experience with this ED, triage was followed by a lengthy wait in the waiting room. Business must be slow on Wednesday mornings. What was SOP was the blood draw and urinalysis, followed by an hour wait for the test results. While I was waiting, my mother was escorted to the examination room. She and Dad had decided to reschedule his appointment so that she could be with me.

During our wait, the primary ED physician stopped by to tell me that I was in good hands because the ED resident was a neurologist. To my horror, the resident then told me that she was going to order a spinal tap. At that point, I told her that when I had been at the urgent care center, the doctor suspected that I was having a stroke. She was confused by that diagnosis and asked me if I knew how he reached that diagnosis. I told her that I wasn’t sure, but he had been concerned that my walk had been a little disjointed and unsteady. After watching me walk, she was a little skeptical, but she ordered a chest x-ray and a CT scan of my head. After another wait, she ordered a CT scan of my lungs and an x-ray of my head. I could practically hear the bill growing.

fastStroke

May is Stroke Awareness Month. If I had had my wits about me, I would have challenged the diagnosis of the urgent-care doctor. I had no facial drooping or difficulty with speech, and he didn’t check the strength of my arms. Mom had had a stroke on May 15, 2015, so I should have known better.

fastDollarsAnd then the woman with the traveling laptop entered the room to resolve my bill. After handing her my insurance card, she told me that I had a very good insurance plan for emergency care. My bill had come to $6,000.00 (approximately $1,000/hour), but my out-of-pocket portion was only $2,000.00 (gag). She started to say that if I were to be admitted, there would be some other process, but stopped midsentence and said that I would be admitted. When I asked why, she said that the doctor would return soon and she would tell me. After all of these tests and the pending admittance to the hospital, I wondered what the heck was wrong with me. When the doctor returned, she said that she was admitting me because I had pneumonia. I had spent a lot of time with someone who had had pneumonia twice during the past year, and I was pretty certain that I didn’t have a single symptom that would warrant that diagnosis.

Although I had dodged the spinal tap by bringing up the urgent care diagnosis, I cringed when she said that they needed to draw more blood for a blood culture—one draw from each arm, and they could not use the IV as a source. The worst thing that I inherited from Dad was his veins: we’re both terrible sticks. I told the nurse that she would have a difficult time getting more blood from me. After poohpoohing me, she tried unsuccessfully to hit a vein in my right arm. She was about to try again when the resident returned, saying that they were not going to admit me. It seemed that I didn’t have pneumonia after all. She said that what they had thought was fluid in my lungs was my diaphragm. They realized their mistake when someone checked the CT scan of my chest.

fastCocktailThe good news was that they were going to give me a nice IV cocktail of concoctions that would make my headache go away. Although I was grateful to get rid of the pain, I was not convinced that it wouldn’t return after all of the good drugs wore off. When I asked her if she had any idea what caused the pain, all she said that she doubted my assertion that I didn’t get headaches, which was hugely annoying.

After an hour, the liter of fluid and the good stuff that it contained had drained into my veins.  I felt better and Mom took me home. Unfortunately, the good feeling wore off in about four hours.

I was the designated driver for our family-reunion trip to Midland on Friday, but Mom was now having second thoughts about the five-hour drive, and she suggested that we cancel our trip. I reluctantly canceled our hotel reservation and contacted one of my cousins to apprise her of our situation.

fastCross2June 2. Fortunately, I had the prescriptions from the urgent care center, which we filled after breakfast. Because my pain had started in my head and extended down my back, the urgent care doctor had prescribed one medication to address the backache and another for the headache.

The prescribed pills seemed to do the trick, but they left me feeling stupid and sleepy, which made working almost impossible. I spent most of the day napping.

2014_ 09cats_014
Peanut

June 3. Peanut, our female cat, had been ill and Stan had dropped her off at the vet’s office for some tests. I called the vet this morning to get the results. Unfortunately, the news was not good. Peanut’s WBC count was elevated 10x above normal for cats. He said that he was pretty certain that she had bone marrow cancer, and she might also have cancer in her liver. He said that he’d call me Sunday morning before church with another update. During all the terrible times during Dad’s hospitalization, I had cried only once, and then it was for another patient. Maybe it was because of how I was feeling, but this news about our sweet cat was the tipping point for me, and I could not suppress my tears.

fastCross2I quit taking the medication for my back, but I dipped into the headache meds as often as I could. I don’t know what prompted me to do it, but I pulled out Mom’s yoga mat and ran through some Pilates moves that have helped me in the past with back pain.  Before the day was over, I had run through the routine two more times.

Because I had originally planned to be in Midland today, Stan had arrived last night so that he could spend the weekend with Dad. Although our family reunion plans were canceled for Mom and me, I was glad that Stan was here for me.

June 4. Stan relieved Mom today and took Dad to dialysis. He also picked him up at the end of his session, and the two guys ran some errands and retrieved Dad’s lawn mower from the repair shop.

annivCross1While Stan and Dad spent the day on outdoor activities, I kept running through my Pilates routines and noticed that my headache and back pain had diminished significantly.

June 5. Note to self: the next time that I get a screaming headache and backache, try Pilates before seeking medical assistance. I had had some back problems in the past, but they had never started with a headache. Exercise and stretching were now my first option. When Mom and I went to church this morning, both my back and head were pain-free.

Now Mom, Dad, and I had all experienced the Scott & White Emergency Department. When I went to see my doctor in Houston a week later (as advised by the ED resident), she shook her head, rolled her eyes, and asked: “what kind of medicine are they practicing up there?” I had had the same thought.

 

Transitioning from home-care patient to normalcy

May 15, 2016. Because Dad had told me that he wanted more access to his computer, I rearranged his computer station so that he could use his computer when I was at my home in Houston. Shortly before he was admitted to the hospital last May, he had purchased a new computer, which ran the Windows 8 operating system. Like most long-time Windows users, he had bonded with the Windows XP operating system and wasn’t enamored with the new operating system.  During my return trip to my parents’ home, Dad complained that he could not remember how to use his new computer.

sudokoBefore Dad’s extensive hospitalization, my parents worked Sudoku and crossword puzzles every evening after dinner. In addition to the hospitalization stay, having the home-care aides and me in the house had disrupted their daily routine. When I asked them if they’d like to resume their former evening activities, both of my parents said that they could not remember how to play Sudoku. I suggested that they start with crossword puzzles and that Stan might be able to get them started on Sudoku during his next visit.

Dad started saying that growing older was terrible. I wished that I could convince him that he was doing well, in spite of his setbacks.

May 17. Per Dad’s request, I was spending less time at my parents’ house. They seemed to be doing pretty well, so I felt more comfortable about limiting my time with them to long weekends, versus the week- or month-long stays. Truth be told, I was probably as eager to resume my normal life as they were to resume theirs.

Following the discussion with my parents about Dad taking pectin instead of a statin to control his cholesterol, I contacted Dr. Elizabeth Ebert, my parents’ cardiologist. According to Jennifer, Dr. Ebert’s nurse, Dad had told the doctor that he wanted to stop taking statins, so she removed them from his list of medications. When I relayed this information to my parents, they said that they had no recollection of this conversation, but now it seemed that we didn’t need to explore the issue of replacing the statin with pectin. Although the nurses were often our best source of information (or alternative viewpoints), I would have preferred that my parents confer with their doctors before adopting the suggestions of a visiting nurse.

Rain had been forecast for the central Texas area, but we received only a slight mist during the morning. Shortly after Dad returned home from dialysis, I packed up my computer and started my return trip to the BMC office in Houston. I arrived at the office shortly before 3:30 P.M. and worked until 5:00 P.M. so that I could meet my former manager for dinner. With my crazy caregiver schedule, I had had only rare interactions with my friends during the past year, and it was nice to visit with a good friend.

May 18. I was in Houston for the remainder of the week and would return to Temple on Saturday. When I worked from the office in Houston, my commute home from work wasn’t terrible, but it wasn’t always predictable, and I missed seeing Stan by a couple of minutes. Once a month, he had to work an all-nighter, and he would not be home again until sometime after 3:30 A.M. tomorrow.

2016_may_05A dove had built a nest of sorts (Doves are inept at building nests.) on our front porch. Whenever I walked up the porch stairs, I would stop and check on the status of the (ugly) baby dove and its mother. Today when I got home, the mother dove was gone, and it looked like a dead baby bird was in the nest.  I checked before going to bed, and the mother dove had returned. I assumed that I was wrong about the baby dove, but marvel at how still baby doves could lie. We had also had a dove nesting in a crepe myrtle tree in our backyard, but that nest now seemed to be empty. During the past couple of years, the porch had become a favorite nesting location for doves. Stan said that he didn’t like the messy doves nesting on the porch, but I enjoyed having this bird’s-eye view of spring.

Mom spent a couple of hours at the hospital today with her friend Marilyn, whose husband was battling bladder cancer.  Marilyn had been Mom’s friend in need on numerous occasions during the past year, and Mom was glad to be able to return the favor, if only in a small way. Mom’s time at the hospital with Marilyn was one of the few times that Dad had been left alone since he had been at home. Leaving Dad alone might not have been a big step for Dad, but it seemed like a huge milestone for Mom (and me).

May 21. It rained over three inches in Temple this morning, but by noon the rain had stopped. The weather was a little dicey between Houston and Temple, and the drive took me a little longer than usual. Shortly after I arrived, Mom and Dad returned home from dialysis.

IMG_1833Although I had planned to limit my time in Temple to long weekends, the upcoming holiday weekend and family reunion scheduled for the next weekend caused me to extend this trip to two weeks. Unfortunately for Dad, I would be commandeering his computer workspace during this time. After my father had been unable to get up while adjusting the irrigation in my parents’ vegetable garden, Stan suggested that we get them a tractor scoot. It’s sort of like a cross between a wagon and a scooter. We knew that my parents wouldn’t buy it for themselves, so we purchased it for them as an early wedding anniversary gift. Some assembly was required, but they seemed to like it and might actually use it.

rainMay 30. Today was the observed holiday for Memorial Day, so I had the day off from work. Instead of sleeping in, I was rudely awakened at 3:00 A.M. by a thunderstorm. With the memory of last year’s Memorial Day flood (and this year’s Tax Day flood) still fresh in our minds, we hoped that the storm would pass quickly and provide only a limited amount of moisture. Fortunately, the thunderstorm had not also been a gully washer. Mom and I had planned to weed the garden this morning, but we would postpone those plans until the afternoon.

2014_ 09cats_012Because Stan planned to take off from work next Friday and spend a long weekend with Dad while Mom and I attended a family reunion, he had stayed home this weekend. In addition to some chores that he had to attend to around our house, Peanut, our female cat, was experiencing some health problems that seemed serious, and she needed some attention.

Shortly before noon, Christine, the home care nurse, stopped by to discharge Dad from Scott & White Home Care. However, when she learned that Dad had not yet transitioned from the dialysis catheter to the fistula for dialysis, she decided to keep Dad in the program for another few weeks. We all agreed that although we didn’t anticipate any problems, Dad had a history of encountering unanticipated problems.

IMG_0998Although the ground was a little soupy, the conditions were perfect for pulling out weeds, and I was prepared with my knee-high rain boots. Mom and I weeded the vegetable garden for about an hour and were pleased with our results. The sky had remained overcast, so we weren’t sweltering from heat.

After I had a chance to de-mud myself, my parents and I prepared a Memorial Day dinner. Dad and I barbequed hotdogs on the grill and mom fixed baked beans. A few years earlier, Mom and Stan witnessed Dad and me accidentally dropping a hot dog on the ground and placing it back on the grill. No such event happened this year and it seemed that Dad and I were in finer grilling form than before his surgery.

After dining on baked beans and hot dogs, we played Oh Hell and Mom won.

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Today was also one of my parents’ wedding anniversary.

May 31. When I woke up at 3:30 A.M., I had a headache. I took some Advil with my coffee and logged on to work at 4:00 A.M. A few hours later, I stopped work for a couple of hours so that Mom and I could accompany Dad to his appointment with the endocrinologist. We had never met this doctor and Dad’s new primary care physician had scheduled the appointment. I didn’t know what an endocrinologist did, and I wasn’t sure why we were meeting with her. I liked this doctor, but it was apparent during the introductions that this visit would be challenging for my parents. The doctor was Indian, had a rapid speech pattern, and was soft spoken. Neither of my parents could understand her, so I interpreted everything that she said.

In short, she said that Dad had severe osteoporosis, which he most likely got from lying in bed for six months. During that time, calcium had leeched from his bones and into his blood, which was why his calcium numbers had been so high.

transitionArrow1The doctor recommended that Dad take medication to strengthen his bones. Because of his renal failure, the only drug that he could take was Prolia, which is administered as an injection every six months. I told the doctor that I had known some women who sounded like they were dying after taking similar drugs. She told me that today was just a consultation and that we should go home, research the drug, and then make a decision. She said that if we had any questions, we could call her.

When we returned home from the doctor’s office, Dad told me that he was not going to take this drug. At first, Mom was concerned about his decision, but then we started googling for information about the drug’s side effects. Within 30 minutes, we all agreed that the adverse side effects could outweigh the benefits of taking this drug. I had mixed feelings about disagreeing with a doctor’s advice. Although it wouldn’t be the first time that we had gone against medical advice, I didn’t want us to default to that response.

Many of the doctors that we had encountered during Dad’s health-care event seemed happy to discuss his odds of living through the ordeal, but when it came to the drugs that they prescribed, they neglected to address benefits versus side effects, some of which had been severe. I know that thousands (maybe millions) of women take drugs to strengthen bones, but how long does it take for the drug to effect a change, and by what percentage? If you’re almost 90 years old, what benefit can you expect? If a doctor prescribes a drug to reduce fractures caused by falls, wouldn’t it be prudent to prescribe physical therapy that addresses building core muscles? I found it frustrating that the first option for doctors seemed to be the prescription pad.

 

One-year anniversary: Aortic valve replacement surgery

May 6, 2016. It was hard to believe that one year ago, Mom and I had accompanied Dad to Baylor Scott & White hospital for his aortic valve replacement surgery, a 7-10 day hospital stay that became a 148-day hospital stay, followed by five months of home care. His surgery had been successful, but the recovery was a failure.

IMG_1760When I called my parents’ home from my home in Houston today, my mother told me that she had been informed that Dad’s second round of home care would be ending soon. Once again, I felt like I was losing a lifeline. Although I rarely needed them, just knowing that I could phone a nurse for assistance was comforting.

May 7.  It was Saturday morning and Stan and I were driving to my parents’ home in Temple in separate cars. He left home at 7:45 A.M. I had a couple of errands to attend to and followed Stan a couple of hours later.

When I arrived at my parents’ home shortly before 1:00 P.M., Dad was home from dialysis and Stan was mowing the lawn. After lunch, Dad and I went to HEB to purchase groceries and supplies that we would need for the dinner that we had planned for Mother’s Day tomorrow. While I was there, I found a beautiful bouquet that I purchased for Mom.

Dad told me that he wanted me to start reducing my number of trips and days with them. He said that he wanted to start using his computer again, and when I was there, he couldn’t access it because I used that space to work. He added that when I wasn’t there, they felt like their life had almost returned to normal again. I wasn’t sure how I felt about this announcement. I also wanted to reduce my time away from home, but I still felt that their situation was somewhat tenuous.

Very little can dissuade us from playing cards after dinner, and Dad won big time at Oh Hell.

May 8. For as long as I could remember, my parents had eaten waffles for breakfast on Saturday. During Dad’s seven months of hospitalization and home care, Mom had abandoned this tradition. After preparing countless batches of waffle batter, Mom had committed the recipe to memory. Between the months-long lapse in preparing the waffle batter and her having a stroke, Mom had forgotten her recipe. When preparing waffles last weekend, she searched in vain for her written recipe and resorted to one in a cookbook. During the past week, she had continued her search but without success and had to use the substitute. Although Mom prepared the batter, Dad had been the official waffle baker, a role that he now resumed.

IMG_1795After Mom and I returned home from church, the four of us enjoyed chocolate-dipped strawberries with our lunch.

During happy hour, Mom opened her Mother’s Day card and a little gift from me. My wonderful husband gave Mom a gift card to Chico’s. Because she had lost so much weight during the past year, most of her clothes no longer fit her. So that I could accompany her on her shopping trip, he also gave me a gift card.

IMG_1761For dinner, Dad and I fixed some of Mom’s favorites: baked potatoes and rib-eye steak. Dad also had me prepare one of his favorites: sautéed mushrooms. Everything was great—even the banana pudding ice cream that Dad had selected for dessert. Although the flavor didn’t sound very appealing to me, it was surprisingly good.

Stan left for our home in Houston at 4:30 P.M, but he didn’t get home until 8:00 P.M. One of the cats welcomed Stan home with the gift of a furball in the middle of the family room floor. Poor Stan.

Back in Temple, I won our game of Oh Hell, beating Mom by two points.

May 9.  I started working at 4:00 A.M. My father had an early post-op appointment today with Dr. Jaffers, the surgeon who performed Dad’s fistula surgery. My parents and I agreed that I would skip this appointment but would go with them to Dad’s later appointment to see Dr. Martin. We planned to take two cars so that I could drive to Houston from the doctor’s office.

annivCross1At 10:00 A.M., after a 6-hour workday, I stopped working and packed my car. When I turned the key, the engine hesitated before it started. When we arrived at the doctor’s office, I asked my parents to wait for me to start my car before leaving the parking lot. In case my car had a problem, I didn’t want to be stranded at the doctor’s office.

Dr. Martin repeated what we had already heard: Dad had several compression fractures. We talked with him about Dad’s three falls (May 2015, January 2016, and March 2016), and the likelihood that one of those falls had caused Dad’s current back problems. Because back injuries can be cumulative, the last fall or the standing up in church could have been the tipping point that caused Dad’s pain. The doctor wanted a blood test and a bone density scan to determine if the compression fractures were caused by osteoporosis. When my parents went to the lab for the blood work, I went home. I was relieved that the car seemed to start without any hesitation and assumed that I had imagined some problem with my car.

When I stopped for gas in Somerville, my car struggled to start. I called Stan to share my concerns and discuss my options. I had planned to go to the office and then meet a former coworker for dinner. I was afraid that if I went to the office or out to dinner that the car wouldn’t start and that I would be stranded. We agreed that it would be prudent for me to skip the office and reschedule my dinner plans.

annivCross3I drove home and called Stan when I approached the neighborhood. We met at the house, unloaded my car (with the engine running), and he followed me to the Honda dealership. Through the miracle of smartphones, I was able to attend a meeting during my drive to the dealership. The service department representative said that they could fix my car within an hour, which allowed Stan and me to grab dinner while we waited.

When we arrived home with two fully-functioning cars, I called Mom to see how Dad was doing. After they left the lab, they ran a couple of errands, and by the time that they reached home, Dad was in a lot of pain. His back was hurting him so much that he had to lie down. Mom was very concerned and told me that he had a difficult time finding a comfortable position.

Mom was a little confused and a bit frustrated by the doctor’s visit. She had thought that the doctor was going to start treating Dad, so she was surprised when the doctor said that he needed more tests.

May 10. When I called Mom at noon to see how she and Dad were doing, she told me that she had received bad news from the dermatologist: her biopsy was cancerous and she would need surgery. The cancer was slow moving, so the doctor said that she could schedule the surgery for after our family reunion in June.

annivCross1Dad was feeling somewhat better today. Mom had had him take some Extra Strength Tylenol last night and it seemed to lessen his pain. She told me that Dad returned to the x-ray department at the Scott & White clinic for a bone density scan this afternoon. The scans weren’t painful, but lying on the table was very painful.

May 14. After spending a few days at our home in Houston, Stan and I planned to return to Temple for the weekend. Like before, we would take separate cars, enabling me to stay a day or two longer. After handling a few chores around the house, Stan and I departed for Temple; Stan left about 10 minutes before me. As I was passing the Buc-ees in Waller, I passed Stan. He could seldom pass this mega rest stop without stopping for coffee or snacks. He stopped again in Rogers to pick up some doughnuts for my mother (so he said), so I arrived almost 15 minutes ahead of him.

I hadn’t been in the house for more than a few minutes before Dad started complaining about the doctor and the lack of information from Scott & White. I decided to log on to Dad’s MyChart account and discovered that Dr. Martin had sent my father a message, telling him that he had severe osteoporosis. The doctor added that he had requested a consultation with an endocrinologist. I emailed Dr. Martin to see if we needed to make the appointment or if we would be contacted by the specialist. I also noticed that Dad had an appointment for additional blood work, but I couldn’t tell which doctor had placed the order.

annivCross3We later got into a heated discussion about how my parents wanted Dad to replace his prescribed statin with pectin. Evidently, the home care nurse told my parents that statins were dangerous and that she had been giving her husband pectin instead. I could believe it because my sister-in-law’s father-in-law had had some severe side effects from prolonged statin use. However, I’d prefer if we clued in the cardiologist before we started self-medication.

When he saw Dr. Martin last week, Dad’s chart did not include the statin, but my parents did not recall any discussion with Dr. Ebert about stopping this medication. Because it was on the list of medications that I maintained for Dad, Dr. Martin had added it back to Dad’s chart. We decided that I would contact Dr. Ebert, tell her about the situation, and see what she advised. Who knows; if she thought that substituting pectin for a statin was a good idea, I might have Stan ask our doctor about it.

 

Eagerly anticipating 7 days in a row without a medical incident

April 26, 2016. I was slow to get up this morning. I finally dragged myself out of bed at 4:05 A.M., but I wasn’t the only one who was slow to get started. At 5:05 A.M. I had to wake my parents. Even with the late start, Dad and Mom got off to dialysis on time, and Mom was home by 7:15 A.M., which meant that Dad was hooked up well before his 7:00 A.M. chair time. The workmen arrived shortly after 9:00 A.M. and started hanging plastic to isolate their work area and to confine their dust to a small area of the house. They worked most of the day replacing the broken tiles.

ouchCross2Now that Dad seemed to be recovering nicely, he didn’t need my constant presence, which enabled me to spend more time at my home in Houston. I left my parents’ home at 12:30 P.M. and arrived at my home in Houston around 3:15 P.M. I logged on and worked until Stan got home from work at 5:00 P.M., armed with some barbecued ribs, one of my favorite meals.

While Stan and I were eating, Mom called because she had not heard from me. I always call them after the three-hour drive, but today, my call was picked up by voicemail. Evidently, my parents had decided to get out of the plastic maze that their house had become, and they had been relaxing on the patio when I called and had not heard the phone ring.

My mother said that Mike’s contractors did an excellent job and that the tile looked as good as new.

April 27. A different set of tradesmen arrived at my parents’ house today. This group concentrated on repairing the cracked walls and spent quite a bit of time patching the cracks and doing other prep work necessary for painting. Dad had also contracted with the crew to paint the exterior of the house. It had stormed during the night, and these guys added to the wet house by power washing it.

pegOutCross3While the house was being prepped for its beauty treatment, Mom drove Dad to his appointment with Dr. Elizabeth Ebert, his cardiologist. The doctor said that Dad’s heart and its new valve were fine and performing well. While they were in her office, she accessed Dad’s x-rays and confirmed that she also saw seven compression fractures in his spine. Mom didn’t say why the doctor accessed Dad’s x-rays, but I assumed that Dad had told her about his constant pain.

April 30. Even though Stan and I took the day off from work today, I still woke up at 4:30 A.M. I did some laundry, tidied up around the house, and went to the grocery store. By that time, it was raining (again). By 9:00 A.M., I had my car packed and was ready to drive to Temple. Stan left shortly after me.

When I arrived at my folks’ house at 11:30 AM., the front door was unlocked, and when I went inside, it seemed as if no one was at home. On my third trip into the house while unloading my car, my mother came out of the master bedroom and told me that Dad was taking a shower. Until the dialysis catheter was removed, preparing Dad for a shower was an ordeal that involved securely shielding the dialysis ports and ensuring that we didn’t disrupt them in the process. By 12:30 P.M., Dad was dressed, and Stan was pulling into the driveway. Mom told me that before he left dialysis yesterday, the nurse measured his height, and he was 5’10”, three inches shorter than his height when he entered the hospital less than 12 months ago. Also as disturbing was the news that his weight was down to 143 lbs. During the past year, Mom had also lost 20 lbs—weight that she didn’t need to lose. After years of watching their weight, we were not concerned about too much weight loss.

ouchCross3When preparing the house for the repair work, the contractors had us remove vases, knick-knacks, and any other objects that they might damage. After lunch, I helped Mom return everything to its rightful place—sort of. I couldn’t believe how difficult it was for us to remember where everything had been for five years. I questioned both my power of observation and my memory.

The weather was beautiful in Temple, and Stan and Dad took advantage of the nice day by spending the afternoon outside doing yard work. Meanwhile, inside the house, Mom was baking a cake and I was preparing ham loaf for dinner.

After dinner, we played cards, and Dad beat Mom by one point.

May 1. I compensated for my lack of sleep on Thursday night by getting nine hours of sleep last night.  When I woke up at 6:45 A.M., I heard Mom in the kitchen. She had been up for almost an hour, and the coffee was ready.

IMG_1758Mom and I went to church, leaving the guys at home to play cards and perhaps do some chores. On the way out of the church, Pastor Tom hugged me and told me to say hello to my father. I told him that I’d been eager for Dad to get to the point where I could take him out to dinner. I then asked Tom if he could recommend any good sushi restaurants. He looked at me for a couple of moments and then said that I was still welcome to attend church. Mom hadn’t heard what I asked him, but the people behind us did, and they laughed. Tom loved beef and comfort food, but anyone who knew him also knew that he detested salad, vegetables, and sushi.

When we got home, Dad and Stan had taken a break from some outdoor chores and were playing cribbage, and Dad was winning. After lunch, Dad and Stan went back outdoors for more yard work until it was time for Stan to return to Houston. He left Temple at 4:30 P.M. and arrived at our home in Houston three hours later.

After dinner, we played Oh Hell, and I won.

May 3. I worked at my parents’ house until 11:15 A.M., and then started packing up for my return trip home. Dad had only 1,200 ml of fluid removed today. He still weighed 149 lbs, although he seemed to be eating as much as the rest of us.

I called Holly, the manager of American HomePatient to have them pick up everything except the wheelchair. Unfortunately, a lot of what they had sent us last September could not be used for other patients. We’d either need to sell or donate much of what we still had on hand.

ouchCross4As much grief as I gave Dad for not cooperating with his physical therapists, I had not completed my physical therapy sessions following my wrist surgery last year. I still had a couple of sessions left when Mom had a stroke last year, and I had not been able to see the therapist or surgeon. My wrist had been reminding me of these oversights for the past couple of days. Dad’s Extra Strength Tylenol seemed to help somewhat.

The leading news story of the day was that medical errors were the third leading cause of death in the USA for adults. The report went on to say that one in four people in the hospital would suffer from errors, and some of those errors would be fatal. After all that we had been through during the past year, this news story was not news to us, and not surprising. With all that Stan had witnessed with his parents’ final days, he also shared my sentiments.

Mom had been battling skin cancer during the past few years. Her younger years spent on California beaches and the Jersey shore, coupled with gardening and farming had finally caught up with her. During a trip to the dermatologist today, the doctor took a biopsy from her forehead. We were crossing our fingers that she didn’t require more surgery or radiation treatment.

I watch the election returns for the Indiana primary. I couldn’t understand what was happening. Trump was the big winner again, which surprised me, and Cruz dropped out of the race, which pleased and surprised me.

ouchCross1May 4. Mom woke up in the middle of the night, bleeding from the spot on her forehead where the doctor had taken the biopsy. She was able to stop the bleeding and did what she could to bandage it.

Kathleen stopped by today to assess Dad’s progress with his physical therapy. As she left, the homecare nurse arrived for Dad’s routine check-up. She said that Dad was fine, but she was concerned about Mom’s forehead. She told Mom that she must have the bleeding addressed today.

When Mom contacted the dermatologist, she was told to come to the office. While she was there, the wound was cauterized, which was very painful. The nurse also applied a tight compress to arrest the blood flow. By the time that I spoke with Mom on the phone, she told me that her forehead seemed to be doing fine.

incidentSignI kept hoping for a couple of weeks in a row where nothing happened to either of my parents. I sometimes felt like we should have one of those signs like the ones posted in factories: 7 days without a medical incident. Today the counter was reset to zero.

A clerk from American HomePatient stopped by to pick up medical equipment, but he didn’t have the wheelchair IV pole on the list, so the IV pole remained at the house. Although we still had some medical supplies in the house, having the larger equipment removed, coupled with getting the repair work done, was a huge milestone a step toward their life as they had known it.