July 3, 2018: Independence Day fell on a Wednesday this year, but for Stan and me to celebrate the holiday with my parents in Temple, we had to have our celebration on the preceding weekend. Afterward, I had left their home with some concerns that I hoped Dad would address. However, when I called Mom today and asked her if Dad had taken a pill today, she said that he had not, and he was through taking them. When I asked her why, she said that Dad felt that he was making enough urine without the aid of the diuretics. I couldn’t believe that he was reneging on our agreement to take one pill every day. I understood that it was his life, but what he did also affected the rest of the family, especially Mom. I also wasn’t sure that he understood the possible consequences of his decision.
In desperation, or maybe out of frustration, I called my friend Sue, the dialysis nurse practitioner, to sanity-check my assumptions and fears. Unfortunately, all of my fears about what Dad was doing to his body were well founded. After sharing the highlights of my 30-minute conversation with Stan, he encouraged me to write a letter to Dad, outlining my concerns, describing Dad’s symptoms, and listing the probable consequences of his decision to quit taking the pills. I agreed, but because I felt that time was of the essence, I decided to email the letter to my parents and then tell them to read the message. In my perfect world, they would print it and refer to it often.
July 4: It was raining in Houston, and it rained most of the day. The media dubbed the rain event the Fourth of July flood.
I called Mom to see how they were faring and to tell them about our weather, but there was no answer. I waited a few minutes and then called again. This time my mother answered, but she seemed out of breath. It seemed that while Dad had been showering, he had fallen off of the shower chair. It’s not easy to fall off of a shower chair, but because of his fluid overload, his center of gravity was out of whack. He didn’t break any bones, but he dislodged a large scab on his elbow, causing his elbow to bleed profusely. I didn’t want to keep Mom too long from her cleanup activities, so I quickly told her that I had emailed her a letter for Dad. She said that she would be having a “talk” with Dad later today and she would print my letter and have it handy during their discussion.
When I called my parents again later in the day, it seemed that my parents had had a come-to-Jesus meeting. According to Mom, following their little talk, Dad took his pill and said that he would continue taking them. From her lips to God’s ear.
July 9. Dad saw the orthopedic surgeon today. He said that although Dad’s hip was healing, it was not completely healed. Considering that Dad had severe osteoporosis, I was thrilled that the doctor expected the hip to heal. Mom added that the doctor said that he thought that Dad’s leg seemed thinner; however, I had a hard time believing that he could recall the size of a patient’s leg that he saw a month earlier.
July 10. According to Mom, Dad was still taking his pills. Stan and I had been spending every other weekend at my parents’ place, but because of a work conflict, Stan would not be able to accompany me to Temple this coming weekend. When I relayed this information to Mom, she was very disappointed. I suspected that Dad was also disappointed. My father cared for Stan and always looked forward to seeing him. Stan also seemed to have a calming effect on my parents.
July 15. Mom and I usually attended church when Stan and I were in Temple. Because Stan wasn’t here, Mom thought long and hard about whether she should attend church and leave Dad home alone. She finally decided that we would go when Dad insisted that she and I attend church. Unfortunately, while we were gone, Dad tripped on one of the front wheels on the wheelchair when he tried to stand. He wasn’t badly hurt, but his fragile skin was quick to tear and bleed. When we returned home, Dad had a bloody leg and sock. Feeling guilty for having left him alone, Mom dug into her stash of bandages and tended to his leg.
When I asked him if he had taken his pill today, he became a bit miffed at me, telling me that he had a lot of things to do today and he didn’t want to take the pill. After telling him that I couldn’t think of anyplace that he needed to be, he eventually took a pill. My health discussion with Dad seemed to deflate his mood, and getting him to take his pills felt like a hollow victory.
Fortunately, he didn’t stay mad at me for long, and we spent quite a bit of time planning for his 90th birthday celebration on October 6. We were expecting one of my cousins and her family, and we needed menus for three days. Dad and I were partial to many of the same foods, and we developed menus that contained some of my favorite foods as well as his. Dad also wanted to play a few hands of Oh Hell during the festivities, and he drew a seating chart of how we would seat seven people around a table that accommodated six.
Mom told me that Dad had an appointment this coming Tuesday with his cardiologist, Dr. Elizabeth Ebert. I had met Dr. Ebert on several occasions, and I hoped that she would not mind if I contacted her about my father in advance of his appointment. I assumed that my parents would not tell her about his reluctance to take his pills, so I planned to send her a message via MyChart, Scott & White Hospital’s patient portal. I had been using this website to communicate with Dad’s physicians when he was at home on home care. His credentials were cached in my browser, which enabled me to periodically monitor his test results and correspond with his doctors.
July 16. I wrote the following email to Dr. Ebert and hoped that she would read it before Dad’s appointment the next day:
“Hi, Dr. Ebert.
I’ve been encouraging my father to see you. Dr. Issac (his nephrologist), said that he could try getting off of dialysis if he would take diuretics. My father has been taking them on a less-than-regular basis, and I am concerned about fluid overload and how it might be affecting his heart and lungs. He views the diuretics as an imposition that affects the quality of his life. He hasn’t seen any nephrologist since November 2017. My parents trust you, and I hope that you can have a frank discussion with them.
July 17. When I spoke with Mom this evening, she said that Dad’s appointment with Dr. Ebert had gone well. While they were in the doctor’s office, she referred Dad to Dr. Concepcion, a senior nephrologist with Scott & White. I knew and liked Dr. Concepcion, but he spoke with a heavy accent, and I feared that my parents would have a difficult time understanding him. After our call, I told Stan about the upcoming appointment with the nephrologist, and he told me that I needed to go with them, and I agreed. When I logged on to Dad’s MyChart account, I was dismayed to learn that the appointment was scheduled for November 20, more than four months from now, and a year since his last appointment.
July 22. Today was Stan’s birthday. We had arrived in Temple yesterday and celebrated the previous evening with some of his favorite Midwestern foods. He and Dad also spent some time playing cribbage. While Mom and I attended church today, the guys played more cribbage and took time out to build a mini step that Dad could use to exercise his legs while he was sitting. I was able to get Dad to walk twice this weekend. We now sing She’ll be “Comin’ Round the Mountain” when he walks. We could usually sing four verses before he had to stop and rest.
Dad said that he needed a haircut and would see the barber either this coming Wednesday or Thursday. Recalling the difficult time that Mom and I had getting him into the barbershop during a previous visit, I implored her to wait for a weekend when Stan and I could help get him into and out of the building. I didn’t get much of a response, but I hoped that Mom would recall the harrowing experience.
July 24. I logged on to Dad’s MyChart again today to see if Dr. Ebert had left any notes about Dad’s last appointment. I was pleased when I read the following message:
“RE: Visit Follow-Up Question
I spent a good bit of time last week with your father (and mother) in the clinic. I expressed how important it was to take his diuretic every single day. He did complain that it was an inconvenience and he did not feel that he should have to take it daily. I explained that with his kidneys, he needed to take the diuretics if he wished to stay off of dialysis. I told him that as long as he had 6 to max 8 hours, then the diuretics would have worn off. I told him that if his appointment was at 2 in the afternoon, then he should take his diuretic at 6 am; or if he had a 10 am appointment, to take his diuretic as soon as he got home. I also encouraged him to follow up with Nephrology. He informed me that he did not wish to go back to Dr. Issac, so I instructed him that he should see another Nephrologist. He requested a recommendation. While I do not know all of the Nephrology department, I reported that Dr. Concepcion is very good. Unfortunately, it appears that an appointment was not scheduled until November. Because of the delay, my office will be contacting him requesting that he do some lab work so we can see where everything is now (electrolytes, renal function, etc.). We are also going to get him an appointment with a nutritionist to discuss an appropriate diet (requested by your mom). If he continues to have some difficulty, then I will also request that he be seen by one of our Heart Failure nurse practitioners so that they can continue to monitor him and reinforce the need to take his medications.
I hoped that Dad would heed her recommendations. I felt that with Dr. Ebert as an ally, Dad might start taking his pills on a regular basis and reduce some of the fluid in his extremities, which would improve his center of gravity and reduce the weight in his legs.