September 24, 2015. I contacted One On One Personal Homecare Services and provided Rebecca Crabtree, the owner, with a brief story about my father. In inquiring about her services, I wanted her to understand a little about the circumstances that put us in this terrible situation. Her company provided aides who worked seven on and seven off. Ideally, a couple of aides would be assigned to you and they would trade off on Tuesdays. This 24×7 service was provided at the bargain-basement price of $1,106/week. Based on my research, the going rate for aides was about $30/hour. If you could get someone to spend nights with you, you’d likely pay more than $5,000/week. Following a couple of email exchanges, I signed a contract for her services to begin on September 29.
After contracting One On One, I contacted Sheila Rogers at Interim Hospice and told her that we had arranged for aides to assist us with Dad’s care. The aides would provide personal care services, but I would provide the trach care.
Dad’s day started off a little rough when he insisted that he would get out of bed. He was very agitated and combative when his nurse, Alyssa, told him that he had to stay in bed. She finally administered some medication to calm him.
Susan, the physical therapist, arrived at 9:00 A.M. for Dad’s therapy session. She was not in favor of our desire to have Dad transfer into a wheelchair when he was at home, and she provided a demonstration of the Hoyer sling. At the end of his therapy session, Dad was able to use the walker to stand up from the bed and back up into a traditional wheelchair. He piloted the wheelchair as he and Mom went outdoors and visited for almost 45 minutes. Alyssa caught sight of them a couple of times during their meandering visit through the CCH facility and noticed that they seemed to be having a pleasant visit.
Shortly after lunch, Mom had another confrontation with Marty — this time she was insisting that Mom needed to learn how to take care of Dad. Considering how Marty had told me earlier that the nurses didn’t think that Mom could take care of Dad, I found it interesting that she was now pressuring Mom to learn. I was just a little miffed about this confrontation. I thought that we had agreed that I would be trained. I couldn’t help but think that the confrontation had more to do with trying to dissuade us from taking Dad home than training Mom.
Marty called me after this confrontation with Mom and told me that my mother was being very defensive. Mom had already told me about their encounter, so Marty’s call wasn’t a big surprise. I told her that my parents had been married for more than 65 years and that my mother was going through the worst time in her life. I thought that the least that she could do was give my mother a little slack as she tried to prepare herself to be a widow. I had once asked the nurses if they had any humanity and it seemed like a lacking commodity at this place. The thing that my mother needed most was a hug, not the endless grief that she seemed to receive from some of the providers at this facility.
According to my mother, Marty took my comments to heart and she and my mother shared a tearful moment back in Dad’s room.
Shortly before 3:00 P.M., to prepare for his haircut, Alyssa and another nurse helped Dad get back into his wheelchair. Mom’s stylist, Gina, arrived at the appointed time and gave Dad his much-needed haircut. When she was finished, Mom thought that Dad looked a lot more like his old self. Dad thought that the haircut was “OK,” and said that he looked forward to getting a better haircut from his barber. The haircut was timely, as Pastor Don, Jack, and Sandra, all from the church, stopped by to visit with Dad.
Mom left for the day around 5:00 P.M., thinking that Dad had had a pretty good day, all things considered.
At 11:30 P.M., Andrea, Dad’s night nurse, offered Dad the opportunity to administer his own oral care. Unfortunately, he was very confused and tried to use the mouth swab to suction himself. Andrea finally offered to assist him, and he sorta graciously accepted.
Dad and Andrea had another confrontation four hours later when he insisted that he had to get out of bed to use the bathroom. They argued about the bed pan and she left to retrieve Haldol to calm him. By the time that she returned, Dad had calmed down, so she didn’t administer the med.
September 25. I left Houston at 6:10 A.M. and arrived at my parents’ house in Temple at 10:30 A.M. Shortly after I arrived, GoodWill arrived and picked up my parents’ king size bed.
Mom and I arrived at the CCH at 12:45 P.M. Dad was still in dialysis, which allowed Mom and me a few minutes to visit with Dr. Smith. He told us that Dad would not need the dialysis lines when he went home. He didn’t know if the hospice care nurses would need the central line to administer morphine or other drugs, and asked me to contact them. I texted Sheila at Interim, and she said that they wouldn’t need the central line. Dr. Smith said that he would write orders to have the dialysis catheter and PICC lines removed before we took him home.
Dad returned from dialysis around 1:15 P.M. While he and I were talking, he mentioned how much he hated dialysis. When I told him that he would need to endure it just one more time, he said, “No! Without dialysis, you’re dead.” Something about the intensity of his response made me get up and look for Dr. Smith, and I found him in the hall outside of the administration offices. I told him that Dad just didn’t seem like someone who was dying, not that I possessed any real insight. I didn’t really have any goals and I didn’t know where I was going with this comment, but Dr. Smith and I discussed Dad’s state of mind, and he agreed that Dad seemed pretty lucid and that we shouldn’t withdraw care. He went on to say that the fungus had not been noticeable in Dad’s lab results for the last three tests. He thought that we might have to deal with a fungus at some time down the road, but that he would tell Marty to change Dad’s discharge plan from Hospice Care to Home Care if that’s what we wanted. I wasn’t familiar with Home Care and its implications, but it sounded a darn sight better than Hospice Care, and I quickly agreed.
I practically ran back to Dad’s room to tell Mom the good news. Marty stopped by a few minutes later at 2:00 P.M. and asked if we wanted to review some brochures for Home Care providers. We knew that Adan worked for Scott & White Home Care and worked with the physical and occupational therapists that would care for Dad. Ironically, our decision to go with Scott & White Home Care was practically instantaneous. I had been critical of Marty over the past month, but she really earned her pay today. She quickly shifted gears and told us about all of the equipment that we would need and everything that we’d have to do, but we told her that we had made up our mind to take Dad home. She explained that she would do everything possible for a Tuesday discharge, but we were at the mercy of American Home Patient and their providers to deliver everything we needed.
When Mom and I had interviewed Shiela at Interim, we were touched at how willing she was to accommodate us. She had planned to move that weekend and changed her plans. I now needed to contact her to give her the good news that we would not need her services. She was very gracious and was thrilled for us.
At 3:15 P.M., Dana showed me how to administer Dad’s meds in the PEG tube. She reiterated that I would need to spend the weekend learning how to administer meds and how to handle all of Dad’s trach care. I assured her that I would arrive early tomorrow to begin my training in earnest.
Mom and I were asked to leave Dad’s room for a few minutes, so we walked to the CCH lobby and helped ourselves to a cup of coffee. I didn’t usually drink caffeinated coffee after noon, and Mom didn’t drink caffeinated coffee at all, but we didn’t care. We were practically walking on air and felt like celebrating with a cup of nasty coffee.
When we returned to Dad’s room, I saw Jennifer, the physical therapy assistant, outside of the room next to Dad’s, and introduced myself to her. In the 36 days that Dad had been at the CCH, I had not met her. I told her that I had heard great things about her and that I was glad that I had finally had the opportunity to meet her. She was very pleased and gave me a hug.
Dad was a little tired after dialysis and didn’t feel up to much physical therapy. He didn’t get out of bed but did agree to some exercises in bed. Shortly after Jennifer left Dad’s room, Mom started feeling very lightheaded and faint. I got her a glass of water and I had Dana, the nurse, check her pulse. It was 82, which was fine, but Mom’s lightheadedness didn’t go away. While I watched this unbelievable mini-drama play out, I noticed Dad’s razor sharp focus on Mom that never wavered. I felt like an intruder on an intimate moment. I then asked Dana to take Mom’s blood pressure. Her blood pressure was very high, and the nurses strongly suggested that I take her to the emergency room at Memorial. I couldn’t believe it, and myriad emotions washed over me. Just minutes earlier we had been so elated about Dad, and now I was very worried about my mother. What was it with my parents and their dueling maladies? The nurse fetched a wheelchair while I pulled the car to the front entrance and we drove five miles to Memorial.
We arrived at the hospital at 4:15 P.M. and didn’t have to wait long before they triaged Mom. We were ushered into an examination room about 30 minutes later, and time seemed to stop. After the nurse repeated the same questions that we were asked 30 minutes earlier, she hooked up Mom to the monitors and we waited for the resident, who asked many of the same questions that we had now answered twice. A while later, we met Dr. Jones, who ordered some blood work, and then we waited an hour for the lab results.
There must have been a shift change, because a little over an hour later, a different resident entered the room and proceeded to tell us what was wrong with Mom. Evidently, Mom was dehydrated and needed an IV, which they would administer after they admitted her. Mom’s blood pressure had dropped and stabilized during the two hours that we had cooled our heels in the ER, but that announcement made her blood boil. Mom had big plans for the next couple of days and had no intention of being admitted. At Mom’s refusal to be admitted, I asked the resident if Mom could receive the IV in the ER and then go home. The resident agreed to that plan, and it seemed like my plan was a go until Mom learned that it would take more than an hour to administer the IV. It was 8:00 P.M. and we had now been here for more than four hours. Still searching for a solution, I asked if we could stop by HEB, the local grocery store, on the way home and pick up some Gatorade instead. The resident thought for a moment and said that this might be a viable solution, but she wanted to check first with Dr. Jones.
When the resident and the doctor returned a few minutes later, they explained that the original diagnosis had been incorrect. Instead of being dehydrated, Mom had the opposite problem and needed to restrict fluids. I’m not sure what they had in mind, but the two of them were pretty insistent that they must admit Mom for observation. Mom would have none of it and insisted that she was leaving. Frankly, we weren’t feeling too confident that these guys knew what they were doing. Had we not balked about the treatment, would they have administered the IV? The two doctors finally realized that they had more than met their match, and Mom signed an Against Medical Advice (AMA) waiver, stating that she was declining the recommended medical treatment. We waited for our paperwork and finally left the ER shortly after 9:00 P.M. In hindsight, a caffeinated cup of coffee on top of the shocking turn of events was probably a bad idea.
We drove home as fast as we could and celebrated the events of the day with a dinner of leftover Sloppy Joes. Mom poured herself a scotch and I poured myself a glass of wine—as far as we were concerned, this was just what the doctor ordered.
As we looked back on the day, we wondered when the heck the doctors were going to tell us that Dad didn’t have the Candidiasis fungus. We had spoken with Dr. Ciceri several times a day for several days and he looked us in the eye and told us that Dad had this fungus and never wavered in his prognosis that Dad would die in one-to-two months, even with care. And to top it off, we told this guy that he was one of the two doctors that we trusted. Because Drs. Smith and Ciceri were partners, I had assumed that Dr. Smith knew about Dr. Ciceri’s dire predictions, but now we weren’t so sure. We also wondered if Dr. Smith thought that we knew about Dad’s negative test results. The events of the day had unfolded so rapidly that we hadn’t had the opportunity to process everything we heard, let alone ask questions.
The list of doctors that we trusted with my father’s life was now down to one: Dr. Smith.
I don’t know what prompted me to approach Dr. Smith about Dad, but I do know that God works in mysterious ways. Thank God.
I just wished that God could make Dad stay in bed.
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