Finally! A proper toilet and a trip to the barber

January 12, 2016. Shortly after 1:00 A.M., Dad’s incessant itching woke him and he told Dianne that he wanted to take a shower, which was not permitted without the assistance of a physical therapy aide. Instead, Dianne applied more anti-itch lotion, which enabled him to fall asleep again. By 4:00 A.M., the Kangaroo alarm had sounded and woke Dianne, who then woke Dad.

img_1421By 4:30 A.M., with some assistance from Dianne, Dad had washed his face, brushed his longish hair, and was dressed for the day. Keeping with his normal routine, he wheeled himself to the kitchen and read some of the newspaper while Mom prepared his breakfast of Cream of Wheat with honey and a small bowl of peaches and pears. He was finished with breakfast and ready to go long before the HOP arrived at 6:00 A.M.

His secretions had decreased significantly. The reservoir on the suction machine had measurement markings, and it might sound a little disgusting, but Dad’s secretions now measured less than 1/2 cup per day, which was a fraction of earlier quantities.

shave1Now that Dad could transfer in and out of the SUV, Mom scheduled appointments with the hearing aid center and the dermatologist. She told me that Dad also wanted to see the barber on Thursday. He was usually a little weak on Thursdays because of dialysis, so strength-wise, Wednesday would have been a better day, but his Wednesday dance card was already filled with nurse and therapist appointments.

Dad and Dianne returned home from dialysis shortly before noon. Dianne told me that his check-in weight had been 64 kg and 62.8 kg when he left. After pulling out my calculator and converting kilograms to pounds, it appeared that he had gained a couple of dry-weight pounds. I didn’t want to tell Dad about his weight gain for fear that he’d quit eating so that he wouldn’t get fat.

Mom had prepared grilled cheese sandwiches, a comfort-food favorite, and V-8 Juice for him for lunch, and he ate it without a thought about his weight. He had had 1,500 ml of fluid removed during dialysis, and he was tired. Whenever Dad napped, Dianne took advantage of his downtime and also took a nap, and they both slept for a couple of hours.

During dinner, Dad’s appetite didn’t disappoint. He ate hot dogs, beans, and a couple of crescent rolls for dinner.

shave2After our nightly game of cards, Dianne and I were finished with Dad’s nightly meds and trach care by 8:15 P.M., and by 8:30 P.M., he was sleeping. An hour later, he started coughing, but Dianne was able to get him to suction himself, and he was soon sleeping again.

January 13. When I woke up at 3:30 A.M., I heard Dad tell Dianne that he wanted to go to the little room, which was how he referred to the room that housed the proper toilet in my parents’ master bathroom. During his last visit, Stan had installed grab bars in the little room, enabling Dad to finally use the proper toilet in that bathroom. Dianne responded to Dad’s request by asking why he wanted to go to the living room. He wasn’t wearing his hearing aids, and she couldn’t understand him, so this insane exchange about the little room and living room lasted until I came downstairs and interpreted for them. They both laughed and agreed to refer to this room as the small room. After Dianne helped him back to bed, they both went back to sleep.

Mom had been successful at scheduling an early appointment today with the dermatologist and had to wake Dad and Dianne at 6:00 A.M. This trip to the dermatologist would be his first excursion in the car since May 6, 2015.

shave3While getting dressed, Dad’s dialysis catheter dressing fell off. Unbelievably, Dianne picked it up off of the floor and put it back over his dialysis ports. When I heard what had happened, I had her remove the soiled dressing, and I called the dialysis lab and spoke with Dad’s nurse. The nurse told me that he could stop by the dialysis lab at any time today to have the dressing replaced.

After Mom, Dad, and Dianne returned home from the doctor and the dialysis lab, I told Dad that he needed to eat something. He had been off of the tube feed since 4:00 A.M., and had only eaten 85 calories worth of food. He finally agreed to eat 1/4 cup each of cottage cheese and applesauce. This paltry amount wouldn’t make much difference, but at least he agreed to eat something. When he ate only a portion of each, I told him that he needed to eat more, which prompted an argument. After exchanging a few harsh words, he said: “Melody doesn’t really care if I’m around or not.” Dianne, who had been present during our little exchange, had the good sense to hightail it out of the kitchen before my anger exploded. I grabbed the arms of his wheelchair, and I shook it hard and long while shouting, “How dare you say that to me!” The shouting brought my mother to the kitchen to see what we were arguing about now. I gave her the condensed version and stormed out of the kitchen to the office.

I stayed mad at him all day and was glad that I could stay in the office and work. When Brenda arrived at 10:30 A.M. for Dad’s physical therapy session, she informed us that Pam, the shower aide, would be arriving in a few minutes to help Dad with his shower. This shower session had been scheduled to train Michell how to help Dad with a shower but Michell had had car trouble and had not yet arrived, which annoyed Brenda. This shower session was somewhat less of a fire drill than his first shower, and I think that soap might have been involved this time. After lunch, Janet stopped by for Dad’s occupational therapy session, and Kristen stopped by at 2:00 P.M. for the swallow therapy session.

shave1After dinner, I told Mom that I needed to prepare either tonight or tomorrow for my trip home on Friday. She said that I should make my preparations tonight, which meant that she was canceling tonight’s card game. My parents have a high-efficiency washing machine, and like most of these machines, they’re prone to mold. After using it, I mentioned to her that I had noticed some mold on the seals. In response, she told me that she didn’t like my attitude. I was becoming more eager to leave here with every passing hour.

After Dad got into bed, he started coughing hard and then started vomiting. The vomiting didn’t last very long and he seemed fine. He fell asleep until 10:00 P.M., when his coughing woke me, and I went downstairs to his room. I notice that his red cap was missing. Once again, he had blown off his red cap while coughing. Luckily, I had a few clean ones on hand. I suctioned him again, and I became worried when I noticed the pink color of the secretions in the suction tank. During dinner, Dad had eaten some strawberry ice cream and I feared that he had aspirated some of it. When I tried to take his hand to check his oxygen saturation, he grabbed my hand and held on to it, and I melted. I guess only the ones who you love the most can provoke such opposing emotions in the span of a few hours.

While he had been vomiting, his heart rate had reached 141, but his oxygen saturation stayed about 95% and his temperature remained normal. After his coughing subsided and his vitals were normal, he was ready to go back to sleep, and so was I.

January 14. Dad woke up before 3:30 A.M. and was ready to get up and get the day started, not seeming to have suffered any ill effects from last night. He ate a little breakfast and was ready and waiting for the HOP bus to take him to dialysis.

shave2I had logged on to work around the time that Dad woke up, and my morning was full of scheduled meetings. Michell and Dad arrived home from dialysis around 11:30 A.M. and had already eaten lunch by the time that I was free for lunch.

Although Dad seemed to be in a good mood, he was coughing a lot more today. He was tired from dialysis and wanted to take a little nap, but he insisted that he be awakened by 2:00 P.M.

barberPoleAs instructed, we woke him at the appointed time, and he prepared himself for his second excursion in the family SUV, this time to the barber shop. His barber said that he had wondered what had happened to him. The last time that Dad had seen the barber, Dad told him that he was going to the hospital for some surgery. The barber did a great job on Dad, transforming him into his former well-groomed self.

Shortly after returning home from the barber, Dad said that he wasn’t feeling well and wanted to lie down again. He slept for another hour and Michell woke him just before 5:30 P.M.

shave3Because of his coughing spells today, I decided to resume the saline breathing treatments for at least for a day or two.  His secretions seemed to contain some “solids,” which was somewhat disturbing. After the breathing treatment, he started coughing hard again, blowing off the red cap. The way that that red cap flew off of the trach reminded me of a cork flying off of a champagne bottle. After his coughing spell, his oxygen saturation level was 99%, higher than it had been since the day that he was red-capped, so it seemed that his cough had been productive.

January 15. Dad slept most of the night and started coughing around the same time that my alarm sounded. By the time that I got downstairs to his room, he was sleeping again. After working a little over two hours, I heard Michell and Dad talking in the other room, and I stopped for a few minutes to see how he was doing.

As soon as he was up and moving around, he started coughing a lot, and his secretions still looked like they contained solid material. Concerned that he might have aspirated some of last night’s dinner, I texted Kristen. (I don’t know what I would have done without text messaging. It saved so much time so many times and alleviated so much worry.) She replied, saying that some of the solid material in the tank could have come dislodged from pockets in his mouth, and that she didn’t think that he exhibited any of the symptoms of silent aspiration.

shave1Mom and I talked about finding another primary care physician for Dad—one that was part of the Scott & White network. We spent some time online looking for physicians and called the office of our neighbor and doctor, Barbara, to see if she was still taking new patients, but we had to leave a message. We had not received a return call or email by the time that I left for Houston.

Mom and Michell took Dad to the hearing aid center to see the audiologist. She adjusted the volume of Dad’s hearing aids and cleaned them. They returned from their excursion in time for lunch. Dad ate another good meal of a ground roast beef sandwich, tomato juice, and fruit for lunch. Because of its consistency, tomato juice is considered a thick liquid, so Dad was permitted to drink as much of it as he wanted without having to thicken it.

Shortly after I left Temple for Houston, Stephanie, the nurse, arrived. She told Mom and Michell that Dad’s lungs sounded like they were clear, and that he seemed to be doing fine. When she left, Michell coached Dad through his occupational and physical therapy exercises, and then he walked a little on the front porch of the house.

A little after 2:45 P.M., Dad started coughing hard and then started vomiting. Fortunately, I guess, he vomited only tube feed and did not lose his lunch.  After a few minutes, he said that he felt better and that he wanted to take a nap.

shave2I arrived home shortly before 4:30 P.M. When I called my mother to tell her that I had arrived, she told me about the events of the afternoon. I spoke briefly with Michell and had her give Dad a Zofran pill for his nausea and cut back on the rate of his tube feed. We had increased the rate from 55 ml/hour to 130 ml/hour. The dietitian at the gastroenterologist’s office had assured me that this rate shouldn’t cause a problem, but all evidence pointed to the contrary. He needed the Nepro to supplement his dietary intake, but he wouldn’t get it if he kept vomiting.

It was good to get home to what seemed like a parallel universe. I don’t know how I would have survived without these periodic respites to Houston and I wondered how so many caregivers—primarily women—did.

 

 

 

Checking off another milestone: successful car transfer

January 9, 2016. Dad woke up this morning at 4:00 A.M., and from my office, I could hear him coughing. When I changed his trach dressing, I noticed that it was coated with secretions. I was a little concerned that he was having a relapse, but his oxygen saturation was 98%, and his temperature was normal. By 5:45 A.M., he had finished his breakfast of Cream of Wheat and a fig, and was waiting for the HOP bus. By 6:30 A.M., Dad and Dianne were at the dialysis center, and Dad was hooked up to the dialysis machine.

carCross3While Dad was on dialysis, Mom and I attended a Methodist Women’s Epiphany luncheon at the church. I had been attending this church for about a year now and knew many of the women. When Mom and I returned home after the luncheon, Dad was finishing a lunch of a turkey sandwich and ¼ cup of applesauce for dessert. He was like a transformer, transforming from someone who proclaimed that he would only nibble, to our eating machine.

Shortly after lunch, Stan arrived from Houston. He and Dad then spent most of the afternoon together, sorting through my parents’ 78 RPM records and playing selected songs. While the guys were sifting through classic tunes, Mom and I were finalizing our notes for tomorrow morning. The pastors at my parents’ church had asked us to address their three services about pastoral care, how it had helped us, and how to request it. I was addressing the 8:30 A.M. traditional service and the 10:50 A.M. contemporary service. Mom would address the 11:00 A.M. traditional service.

Dad and Stan transitioned from sorting through records to watching the NFL wildcard playoff game. Around 4:30 P.M., Dad started feeling “funny.” He hadn’t had his nap, and I thought that he might be feeling the effects of the dialysis. He stayed in bed during happy hour and didn’t want to get up for dinner. I was able to tempt him out of bed after dinner with a slice of pumpkin pie. He joined us for a couple of games of Oh Hell, and he won both games. We were finished playing cards before 8:00 P.M. Following his normal nighttime routine, plus the new chore of applying the anti-itch lotion, he was nodding off by 9:00 P.M., and so was I.

carCross2Other than a couple of hours during the late afternoon and early evening, today was a good day for Dad. He coughed very little, and I had started his first bolus feed. Bolus feeding would mimic regular meals. To get started with the bolus feeds, we had tried only one can at the rate of 100 ml/hour. He had balked at the thought of doubling his tube-feed rate, but it amounted to only eight ounces over a 2-1/2 hour period. Unless the couple of hours of discomfort this afternoon were due to the bolus feed, he had suffered no adverse effects from it.

Dad’s itching woke him again at 11:30 P.M., and he asked Dianne to apply more of the anti-itch lotion. The lotion seemed to soothe the itching, and he went back to sleep.

January 10. The lotion relieved the itching for a limited amount of time, and Dad was awake again at 2:00 A.M. He called out for help, which woke me, but not Dianne. When I entered his room, he told me that he needed more lotion. Dianne woke up while I was talking to Dad, and she took over. I left him in her capable hands and went back upstairs to bed.

When I woke up at 6:00 A.M., Dad was still sleeping. He eventually woke up about 30 minutes before I left for church. After attending the 8:30 A.M. church service, I drove back home to pick up Mom, and then the two of us returned to church. Mom attended the traditional service in the sanctuary, and I attended the contemporary service in the Family Life and Worship Center. It was interesting to attend two dramatically different services that had the same sermon.

While Mom and I attended church, the guys collapsed and tore down shipping boxes and played three games of cribbage.

carCross3Mom and I arrived back home at 12:30 P.M., just in time for lunch. Dad had a blue-tinted tuna-salad sandwich, a bowl of pear slices, and a can of Nepro. After meeting with Susan the other day, I had downloaded a calorie-counting app for my iPhone and was now tracking his calorie intake. Unlike most people, he needed to gain weight, so I kept track of his intake and continually encouraged him to eat more.

Immediately after lunch, Stan returned to Houston. With Dad’s partner-in-crime gone, Dad wanted to take a nap. He had just eaten a fairly substantial meal, so we didn’t want him to lie down. Instead, he slept for two hours while sitting on the couch.

A few minutes after he woke up, he started vomiting in the bathroom sink. The nausea hit him fast but passed in about 20 minutes. When he felt a little better, he wanted to lie down on the bed. About an hour later he vomited again. Dad might have had the upset stomach, but I was rattled. We had given him a couple of bolus feeds today, but even at the faster rate, it still took more than an hour for the pump to deliver one cup of the Nepro. I called my lifeline, the Home Care on-call nurse, and told her about Dad’s vomiting. I also sent email to the nurse at Dr. Pfanner’s office to let her know about Dad’s vomiting. I knew that I wouldn’t hear from the gastroenterologist’s nurse on a Sunday, but I hoped that I would hear from her early on Monday. The on-call nurse returned my call, but she wasn’t helpful and did not stop by to see Dad.

carCross2Still feeling a little unsettled, Dad stayed on the bed until almost 5:00 P.M., and then he joined us in the living room during happy hour. Unsure about what we should feed him, we gave him a cup of shaved ice to see how he could handle it.

At 5:30 P.M., we ate dinner and Dad had cottage cheese and some sliced peaches, which we hoped would be easy for him to digest. After dinner, we played cards until 7:45 P.M. when I was declared the winner.

Shortly after 8:00 P.M., Dad had received his nighttime meds, a breathing treatment, and a bit of anti-itch lotion, and he was ready for bed. We all hoped that the lotion would remedy the itching for the entire night so that he, and we, could sleep.

January 11. The Kangaroo pump alarm sounded at 3:15 A.M., and woke Dianne. After she refilled the tube-feed bag, she noticed that Dad was awake, and scratching his back. She got up again and applied more of the anti-itch lotion to his back.

Around the time that Dad fell asleep, I got up, donned my scrubs, and headed downstairs to the office. Around 5:50 A.M., I heard him coughing. I stopped what I was doing to visit with him for a few minutes, and I encouraged him to suction himself. After he used the Yankauer suction wand for a few minutes, I administered his morning meds and trach care. When I returned to work, he finished his morning routine with Dianne and got dressed. Before he ate breakfast, Dianne administered his breathing treatment.

After Dad enjoyed another breakfast of Cream of Wheat and pears, Dianne hooked him up to the tube feed.  She then coached him through all of his exercises, except for his physical therapy exercises. Brenda was scheduled to stop by later this morning, and Dianne didn’t want Dad to tire before she arrived.

We had a full schedule of therapists and nurses today, starting at 10:00 A.M. Dad needed to have his trach changed today, so I corralled him at 9:00 A.M. and took care of the change before Brenda arrived. The diameter of the new trach tube was smaller than the old ones, and it slid into the stoma easily, but there seemed to be a bit of a gap around the trach. Fortunately, the trach dressing completely covered the stoma. I wondered how long it would take the diameter of the stoma to decrease for a person who was 87.

carCross1Brenda arrived at 10:45 A.M. for Dad’s physical therapy session and was very pleased with Dad’s progress. She agreed that Dad could try transferring in and out of the car. Getting in and out of a car might seem simple, but this type of transfer is difficult. With an SUV, the transfer into the vehicle is difficult because you have to lift yourself into the vehicle. With a car, the transfer out of the vehicle is difficult because it requires some strength in your legs and core. Everyone was thrilled when Dad successfully transferred in and out of the SUV. Being able to negotiate a car transfer successfully was the first step to freedom from our dependency on public transportation. Because none of us had the strength to manhandle the wheelchair, Dad’s reliance on the HOP’s wheelchair lift would continue as long as he might need a wheelchair on either end of an excursion. Giving up public transportation for the trip to dialysis would require that he was consistently strong enough after dialysis to transfer in and out of cars. Although Dad was not strong enough to start riding in the family car to dialysis and the doctors’ offices, he would soon be able to visit his barber.

Brenda said that she was also very pleased with Dad’s balance. I shared my personal goal with her, which was to get Dad to church on February 14, Valentine’s Day. Brenda said that based on his current progress, she couldn’t see any reason why he wouldn’t be ready for this type of an outing. After all of the fun in the garage, Brenda ushered Dad back into the house for a rigorous workout.

carCross1Moments after Brenda’s departure, Stephanie, the nurse, stopped by with some much-needed supplies, including covers for Dad’s dialysis catheters and 4×4 gauze sponges. The dialysis covers that I had purchased were too large. We asked her about Dad’s itching and the little bumps on his back. She encouraged us to keep on doing what we were doing, but if the itching and bumps didn’t clear up within a week, she said that we should make an appointment for him to see a dermatologist.

everflo-oxygen-concentrator-5-liter-b73
Condenser

It had now been one week since Dad’s trach was red capped. The bedroom was quiet without the condenser, 50 PSI system, and nebulizer that heated the room, and Mom wanted them removed. I finally got in touch with American HomePatient and asked them to remove these noisy, heat-generating, and large items.

Before Kristen arrived for Dad’s 2:00 P.M. swallow therapy session, he ate another meal of cottage cheese and peaches. In addition to Kristen’s delightful personality, Mom and Dad loved her punctuality. Dad asked Kristen if he could drink milk, but she said that it was a thin liquid and must be thickened. He wanted milk and said that he would try it; however, it took only one sip of the thicken milk for Dad to decide that he would hold out for the real thing. Kristen and I spent most of the remaining time of this session trying to convince him to resume eating. Since his vomiting episodes yesterday, he had subsisted on a diet of cottage cheese, Cream of Wheat, and fruit slices.

Julie, the dietitian from Dr. Pfanner’s office, called me today about the message that I emailed her yesterday. I told her about Dad’s vomiting, and she couldn’t think of any reason for it, not based on anything that we were doing. She said that we could maintain the 75 ml/hour bolus rate today for the tube feed, and then increase it to 100 ml/hour tomorrow.

Between Kristin’s advice to Dad about eating and Julie’s assertion that we seemed to be taking good care of him, Dad ate pizza and pumpkin pie for dinner. He seemed to be fine for now, but I wanted to know what caused the vomiting.

After our game of Oh Hell, which I won, we started ushering Dad to bed at 7:40 P.M. He was still very itchy and required the anti-itch lotion, but at least tonight marked the final night of his breathing treatments. Tomorrow was another dialysis day, and I hoped that he would get a good night’s sleep.

 

Today, a shower. Tomorrow, a proper toilet?

January 5, 2016.  I had stayed up too late the night before and Dad had interrupted Michell’s sleep, so she and I were both moving slowly this morning. I took a short break from work, and Michell and I woke Dad at 4:10 A.M. With a little assistance from Michell, Dad was up, dressed, and ready for his Cream of Wheat and peach slices by 5:00 A.M. It was fortunate that he was ready early because the HOP bus arrived at 5:45 A.M., which was on the early side of their pickup time window. It was a danged cold day winter day in central Texas, and I was glad that I had to attend a meeting and could not escort Dad and Michell out to the bus.

shower3During Dad’s dialysis session, 1,200 ml of fluid was removed, which was much less than most sessions. When Dad and Michell arrived home at 12:15 P.M., he announced that he was going to walk after lunch. The four of us ate a light lunch and I served Dad a small amount of mac-and-cheese and fig jam. Dad said that he would like to take a short nap and get up at 1:30 P.M. As soon as he transferred from his wheelchair to the bed, I administered his final dose of antibiotic for his second bout of CDiff.  Unfortunately, within a few minutes he started vomiting. I had assumed that because I had given him the pill on a full stomach I didn’t need to also give him a Zofran pill, but I was wrong. At least we were finally finished with this course of medicine. Because of this little interruption in his plan, Dad decided to postpone his walk until 2:00 P.M.

When Dad woke from his nap, Michell got Dad’s walker, but as soon as he started to walk, he stumbled. After walking tentatively for about 10 minutes, Dad decided that he was too tired to continue. He was very upset that he felt so weak and winded after just a few minutes, and he asked to lie down on the bed for a few minutes.

When Dad woke up at 3:45 P.M., he complained about itchiness, so Michell gave him a sponge bath and changed his bed linens. After Michell encouraged him to exercise more, he agreed and said that he was now ready for some walking.

shower2We had a very nice happy hour, and then we had leftovers for dinner. I still tucked my chin when he swallowed, as if I could will him to practice the correct swallowing techniques. We got a late start on cards, and Mom eventually won. By 8:00 P.M., Michell and I accompanied Dad to his bedroom, and I administered another breathing treatment before he went to bed. I could not believe how much his oxygen saturation had improved since his trach was red capped. When I checked his oxygen saturation tonight, it was 99%, which was higher than it had been since he had come home. After administering his trach care, I must not have replaced the red cap securely. Before I left his room, he coughed, which propelled the red cap across the room. Fortunately, I had a spare that I could use.

At 11:00 P.M., I heard Dad calling for Melissa, which is what he usually called Michell. He had been stumbling over the aides’ names since he’d been home, and they had gotten to the point that they responded to their aliases. I ran downstairs to see what he needed, and he said that he wanted to know if it was time to get up. Sheesh.

January 6. The downside of having Dad’s trach red capped was that without the noisy oxygen concentrator, I could more clearly hear what was being said in his room and I could hear every squeak of his creaky bed. At 2:00 A.M., he woke up and announced that he was ready to get up. Fortunately, Michell convinced him to stay in bed for a couple of hours longer.

shower1By the time that Dad woke up again at 4:00 A.M., I was logged on to work in the office next to my Dad’s bedroom. While I worked, Michell was able to convince him to run through all of his exercises. Michell departed shortly before 10:30 A.M., just after Dianne arrived at 10:00 A.M. Michell had been gone for about five minutes when she reappeared back in the house because her car had a flat tire. I belonged to AAA-Texas and called for roadside assistance in our driveway.

While she waited for more than an hour for aid to arrive, Michell ate lunch with us. Dad ate ½ cup of bluish banana. I was pretty sure Dad couldn’t wait until I quit adding blue and green food coloring to his food. It really did make the food look disgusting.

After lunch, Dad took a short nap and woke up a few minutes before Kristen arrived for his swallow therapy session at 2:00 P.M. Today was another milestone and a fun day with Kristen. Once again, Dad wanted to review the list of foods that he could eat and see what he could add. When he asked about ice cream, Kristen said that ice cream was fine, and then she asked Mom if we had any ice cream in the house. We did, and Dad enjoyed a small bowl of vanilla ice cream for the remainder of their session.

shower2Moments after Kristen left, Kathleen, the physical therapist, arrived with a physical therapy aide who would help Dad with his shower. It had been almost eight months to the day since his last shower, and was he ever ready. We spent about 30 minutes covering his dialysis ports, using some shower shields and tape that we had purchased, based on recommendations from Sue, Dad’s dialysis nurse practitioner. Although my parents have a large bathroom and shower, both were a little crowded. Dad, Dianne, and the physical therapy aide were all in the shower. Kathleen orchestrated the process from outside the shower and Mom stood by with towels. After helping to cover his dialysis ports, I returned to work in the next room. It seemed like only a couple of minutes later that the physical therapy aide noticed some condensation buildup under the shower shield, and I heard her end the shower. Dad was far from squeaky clean, but I’m pretty sure that he lost at least a couple of layers of dead skin. When Dianne tried to apply some lotion, Dad balked at having anything put on his skin.

During dinner, we all ate meatloaf, green beans, and ice cream, including Dad. I worried over every bite that he took and I don’t know how I avoided heartburn. In addition to tucking his chin when swallowing, Kristen had insisted that Dad not talk while eating. As a kid, I remember hearing that we should not talk while eating, but most people are pretty bad at following this guideline. For Dad, it was especially important, and we were having a difficult time getting him to remember. I encouraged everyone at the table to eat in relative silence.

shower3We had an early game of cards and Dad was in bed before 8:00 P.M., and I hoped that he would stay in bed throughout the night. About 30 minutes later, Dad woke up, complaining of itching, and he let Dianne apply some lotion to his back.

January 7.  Now that the bedroom was quiet, Dianne was more sensitive to the annoying alarm on the Kangaroo pump when it ran out of Nepro. It woke her at 2:15 A.M., and Dad woke up while she was replenishing the empty bag, but only for a few moments.

When I woke up a little after 3:30 A.M., I couldn’t hear sound from the baby monitor. A couple of minutes later, I heard the bed creak and Dianne told Dad that he could not get up until 4:00 A.M. She was short, but she could be forceful.

After Dad got out of bed, his morning routine went like clockwork, and the bus left with him onboard at 6:00 A.M. I had meetings all morning and was on the phone when Dad and Dianne returned home at 11:25 A.M.

shower1During dialysis, they removed 2,100 ml of fluid, and Dad was a little tired and wanted to take a little nap before lunch. Mom had to leave for a haircut before Dad woke up at noon, but he ate lunch with Diane and me.

After lunch, Dad was ready for another nap. While she was sitting in the side chair in Dad’s room, Dianne also fell asleep. While they napped, I went to the pharmacy to pick up a prescription for Dad. After Dad and Dianne were up from their naps, Becky, the owner of One on One Personal Care, stopped by for a visit. Becky said that Gale still didn’t know what she wanted to do. She said that Dad looked great, and then she left. We had happy hour at 5:00 P.M., followed by sloppy joes and ice cream for dinner. Dad seemed to cough a bit more this evening, which concerned me, which wasn’t surprising.

I won at cards and by 8:15 P.M., I had administered his nighttime meds and breathing treatment, and I was turning out the lights. His breathing had seemed a bit labored, but his oxygen saturation still registered 96%.

He woke up a couple of times during the night to clear his secretions, but was able to return to sleep.

Today was the 100th day since Dad’s discharge from the CCH and on home care.

shower2January 8.  I had been working for almost two hours when Dad woke up at 5:30 A.M. Shortly after he got out of bed he proclaimed that he was finished with using the bedside commode. Instead, he would start using the “proper toilet,” which was located inside a toilet room. After 100 days at home with Dad, I decided that instead of stating the obvious, that he wasn’t strong enough to use the toilet, I said that we would let him see if he could maneuver himself on and off of it before he needed it. If nothing else, we could speak with the physical therapist about this new goal. I guess I shouldn’t have been too surprised that he was fed up with the bedside commode. During most of his 148 days in the hospitals, his primary goal had been to use the toilet in the bathroom. There were so many daily activities that we take for granted that he had not been able to do. He had made some great strides, but as he slowly regained his health and strength, he was becoming more impatient to resume his previous life.

In addition to the usual Friday visits, the observance of the holidays had caused some reswizzling of schedules, so Dad would see his nurse and all of his therapists today. The nurse came by first this morning, followed shortly by Brenda. While Brenda was here for Dad’s physical therapy session, I told her of Dad’s desire to use the toilet, and she agreed to be present while he tried. He was able to sit on the commode, but could not get up. Brenda repeated an earlier suggestion to install grab bars in the bathroom, and this time, Dad seemed to seriously consider her suggestion. Following the toilet practice session, Brenda put him through the paces.

shower3Shortly after Brenda left, Janet arrived for Dad’s occupational therapy session. During his therapy session, Mom and I ate lunch. I left shortly after 12:30 P.M. for the dialysis center to see Susan, the dietitian. She and I agreed that Dad needed to consume at least 2400 calories per day to gain the weight he needed and to meet his nutritional requirements. Shortly after I returned home at 2:00 P.M., Kristen arrived for Dad’s swallow therapy. During his session with Kristen, Dad asked if he could have bread. Instead of directly answering his question, she asked Mom if she would prepare him half of a turkey sandwich. He nibbled on the sandwich and had all but consumed it by the end of their session. Although she said that Dad could eat bread, Kristen did not want him to eat toast, because of crumbs that he might aspirate.

I enjoy making pizza from scratch, and during our happy hour, I prepared a pizza for dinner. To my surprise, the guy who just a few days earlier had refused to eat more than 1/8 cup of food at any meal, ate 1/8 pizza. And just three hours earlier, he had consumed a small turkey sandwich.

After our pizza dinner, we played cards and Dad won, beating Mom by one point. Dianne and I administered his nighttime meds and breathing treatment and had him ready for bed by 8:20 P.M.

After I went to bed, Dad had another night of itching. Through the baby monitor, I could hear him coughing, and shortly after 10:00 P.M. I went downstairs and convinced him to use his Yankauer suction wand to handle his own secretions. His swallowing and eating seemed to be improving, but I couldn’t help but worry that he might aspirate or might have already aspirated.

I wished Dad would adhere to a few of Kristen’s guidelines so that I wouldn’t worry so much. I feared that all this worrying would make my hair turn gray.