Another fall! A caregiver’s nightmare.

March 5, 2016. I drove Dad to dialysis this morning. He weighed in at 69.0 kg (151.8 lb), and the nurse told me that he would have 1,900 ml of fluid removed. From what I surmised, the doctor had established 68 kg (149.6 lb) as Dad’s dry weight. Dad took his walker with him to dialysis, but before leaving the house, Dad had breezed around the house in the wheelchair. When Mom picked him up, he weighed 67.6 kg (148.7 lb). After returning home, he walked for the rest of the day, using only his cane, and he did extremely well.

2016_mar_12While Dad was at dialysis, Mom baked a cake and I prepared Locke’s Lasagna, Dad’s fabulous recipe for spinach lasagna. When I was finished, I spent a bit of time outside, taking photos of the backyard. My parents’ fruit trees were in bloom, and the white and pink flowers made the trees appear very delicate. When I moved in for close-ups, I noticed that the bees were also enjoying the blossoms.

Shortly after Mom left to pick up Dad, my friend Rhoda called and said that she and her husband Mike had not yet left Houston. After all the brouhaha last night about our expected guests arriving for lunch and how that was upsetting to Mom, it turned out that she wouldn’t have to worry about serving lunch after all.

anotherFallCross3A few minutes after Mom and Dad returned home, Stan arrived from Houston. The four of us ate lunch and then Stan and Dad played cribbage. The weather was nice, so while I waited for our friends to arrive, I took a walk around the neighborhood. My parents were very fond of Rhoda and Mike and looked forward to seeing them again. Rhoda and Mike arrived mid-afternoon, and after we finished all of the greetings, I commandeered Rhoda for some software assistance, leaving Mike, Stan, Dad, and Mom in the sunroom to visit.

While the lasagna baked, we enjoyed an extended happy hour and tried to catch up on the past few months. I was pleased to see that Dad ate a large portion of lasagna and a pretty large piece of cake for dessert. After dinner, the six of us played Oh Hell.

When we finished our game, Dad prepared his concoction of meds and applesauce. My parents said goodnight to us shortly after 9:00 P.M., and Rhoda and Mike left a few minutes later. My parents’ house could accommodate several guests, but because our house was still transitioning from a homecare environment, our friends opted to stay at a local hotel.  Stan and I cleaned up the kitchen and went to bed around 10:00 P.M.

March 6. The four of us were up and at ’em by 6:30 A.M. Stan and my father went to Lowe’s around 8:00 A.M. to buy light bulbs, which provided Dad with a good walk. Stan let him out at the door, but Dad walked around the store and then back to the car with the assistance of only his cane.

MOULTRIE DIGITAL GAME CAMERARhoda and Mike arrived for breakfast around 8:45 A.M. Mom and I prepared waffle batter and link sausage, and Dad ran the waffle iron. It was another nice meal, and Dad ate his fair share of waffles, and I restrained myself from reminding him to eat without talking. My parents liked to leave leftover waffles outside for woodland creatures, like foxes and possums, but the six of us didn’t leave enough for a mouse.

I had hoped that Rhoda and I could escape for a photo safari in a neighboring town, but the weather was too dreary for black and white film photography. At 10:30 A.M., I was itching to get away for a visit with Rhoda, so we decided to hit the road and hope for some sun. About 30 minutes later we arrived at the neighboring town of Cameron, and the clouds thinned out and delivered a sunny day and nice clouds. We found some abandoned and storm-damaged homes and spent some time getting close to the structures, most likely bordering on trespassing. We had such a great time that we got a little carried away and lost track of time.

anotherFallCross2While we were gone, the guys and Mom watched part of a golf tournament on television. After eating such a large breakfast, Stan ordered salad takeout from Olive Garden for our light lunch. He ordered five servings and we still had tons of leftovers. Stan had to get back to Houston to care for our cats, so he left shortly before 3:00 P.M. The remaining five of us spent the rest of the afternoon visiting until happy hour. During happy hour, we shared some of our stories about the trials and tribulations that we had faced during the past few months. Unfortunately, Dad’s stories weren’t unique. Rhoda also relayed some disturbing stories about her father’s time in the hospital during the past year. We had a late dinner of tacos, which didn’t leave us any time for cards this evening.

Our friends left shortly after 8:30 P.M., after what seemed like a very short visit. I think that having our friends visit for the weekend was the perfect tonic for my parents, and for me. Happily, I would be back in Houston during the next weekend, and Stan and I would get to visit with our friends for two weekends in a row.

March 7. I was up early for work, but after having stayed up past my bedtime last night, I felt like I could have slept for another hour. Mom finally woke Dad after 6:00 A.M. After all of his physical activity during the weekend, he was pretty tired.  I knew how much he preferred zipping through the house in the wheelchair and was pleased that was starting out the day with the cane and not the wheelchair.

anotherFallCross3Although I was pleased with his physical activity, I noticed that he seemed breathless when he ate, and he often had a runny nose after meals. If I remembered correctly, Kristen, Dad’s swallow therapist, had mentioned that a runny nose was a sign of aspiration. After watching him like a hawk, I decided that he seemed OK, so maybe I was worrying unnecessarily, which seemed to be my modus operandi.

Mom baked some pineapple banana bread today, and during lunch, we watched Peyton Manning tearfully retire from football. I put in another full day of work and was able to take a walk before lunch today. I stopped working early so that I could move a couple of our many floor mats to our office for Dad. As long as we had a supply of them on hand, we might as well use them to protect the carpeting in the office.

We had Sloppy Joes for dinner, but Dad ate only ½ of his sandwich. He had been doing pretty well with his intake the past few days and was drinking the Ensure and Nepro, so I didn’t pester him to eat more. After dinner, we played Oh Hell again, and I was tonight’s big winner.

By 8:30 P.M., Dad had crushed and consumed his meds with applesauce, and I was ready to call Stan five minutes later.

March 8. It was dialysis day for Dad and we were all up early today. The weather forecast didn’t bode well for today. Although stormy weather was in the forecast, Mom and Dad left for dialysis before the rain started. Shortly after Mom returned home, the weather turned bad with tornadoes in nearby Lampasas and San Saba.

anotherFallCross2When it was time to pick up Dad from dialysis, the weather was terrible, and I decided that I should make the trip to the dialysis center. The roads had terrible ponding and mild flooding the entire way. About a block from the dialysis center, the police had blocked the road and I had to go around deep water by traversing a parking lot. When I arrived, Dad said that he was relieved and glad to see me. By the time that Dad was ready to leave, approximately 30 minutes had elapsed. When we walked outside, I was amazed to see that the rain had stopped and the sky had cleared. As I drove back to the house, I could not believe how much the water had receded. I could only describe how flooded the streets had been because there was no evidence of the terrible conditions that I had countered during my trip to pick up Dad.

When Dad had arrived at the dialysis center, he weighed 69.1 kg (152 lb). After 1,400 ml of fluid was removed, he weighed 67.7 kg (149 lb). He had eaten quite well during the weekend, and I was relieved that he had not retained more than the usual amount of fluid.

I worked until 4:30 P.M. and then picked up my film camera and walked about a ½ mile down my parents’ street. When I returned, Dad was at the bar, preparing a drink for my mother. He then took his soft drink and walked into the sunroom where Mom and I would join him in a matter of moments.

anotherFallCross1It was then that we heard the sound of trouble. Neither Mom nor I witnessed what happened, but we think that Dad fell while stepping into the sunken sunroom. He hit his mouth on the wicker furniture that held Mom’s collection of African violets. He and a few violets were damaged, but nothing too serious on either front. His lip was pretty bloody, and we fetched a cold compress for him to help control the bleeding and swelling. It was then that we noticed the dandy skin tear on his leg. Fortunately, we still had ample first aid supplies. I bandaged up his leg and cleaned up his lip. For a few days, he would look like he had been in a fistfight.

After dinner, I showed Mom and Dad how I dispensed the pills in the two-week pill organizer. It was 8:00 P.M. when we were finished with that activity, but Dad wasn’t ready to go to bed until we played a game of Oh Hell.

March 9. The weather was pretty bad overnight. My bedroom had windows on three sides and the thunder and lightning woke me up and interrupted my sleep during most of the night. I might have fallen back to sleep had the pill alarm not gone off in the kitchen at 12:52 A.M. I had purchased the reminder clock to help Dad remember when to take his pills. My parents didn’t like the clock, and I’m pretty sure that I’m the only one who was disturbed by it. I had set the alarm time correctly, but the clock time was off by 12 hours.

Dad’s leg bled some overnight, so I had to bandage it again this morning. I worked until it was time for us to go to the clinic at S&W to meet with the fistula surgeon, Dr. Jaffers.

anotherFallCross1During Dad’s last plan of care meeting, we had all decided that Dad would have the graft procedure, which uses artificial tubing and not the patient’s vein. However, Dr. Jaffers convinced us that we should take the fistula route. If he decided during surgery that the graft would be the better option, he would fall back to that choice. His assistant offered us two dates for the surgery: March 25th or April 1st. Because the available time on the March date was in the afternoon, we thought that we should go with the April 1 option. Besides the fact that I don’t believe in scheduling surgery for the afternoon, Dad didn’t recover well from anesthesia. I wanted to ensure that he could spend a few hours at the hospital if he experienced delirium or hallucinations. March 25 was also Good Friday. If Dad experienced side effects from the anesthesia or didn’t feel well two days after surgery, he would not be able to attend church on Easter.

This surgery was a big deal, or at least it was for me. Dr. Jaffers would surgically connect an artery to a vein in Dad’s left arm, which would then be used to remove and return blood during dialysis. When the fistula was cured, Dad would have the dialysis port removed, enabling him to shower and swim without protection. Dad wasn’t thrilled that he would be stuck with two needles three times a week or the fact that this procedure implied that he would need dialysis for the rest of his life. However, the fact that he could have the surgery was a sign that he was getting stronger.

anotherFallCross1By the time that we got home, it was well after 1:00 P.M. By the time that I finished packing for my trip home, ate a quick lunch, and reviewed some of the medical tasks with Mom, it was after 3:00 P.M. I finally left for home at 3:20 P.M. The weather between Temple and Houston was miserable, but the traffic wasn’t bad until I got about 10 miles from home. By the time that I finally arrived home at 7:00 P.M., I was good and tired and very glad to see Stan and my kitties.

 

The second fall, and this time without a safety net!

January 26, 2016. Because it was Tuesday and a dialysis day, everyone in the house was awake and up by 4:00 A.M. Dad and Dianne zipped through their morning routine, and they were ready and waiting for the HOP bus when it arrived at 5:45 A.M. Dad’s dialysis session started at 6:00 A.M. and was finished by 10:15 A.M. When he checked in, he weighed 66.6 kg, and when he left, his weight was down to 65.4 kg, so they removed only a minimal amount of fluid.

netCross1Unfortunately, finishing dialysis early doesn’t necessarily mean that you can leave early. Dianne and Dad had a bit of a wait for a bus that would take them back home. When they arrived home at 11:30 A.M., Dad wasn’t feeling very well and wanted to take a nap. We had a quick lunch so that he could start his nap at 12:15 P.M.

At 1:20 P.M., he started to get out of bed because he needed to vomit. We quickly unhooked him from the tube feed so that we could help him get out of the bed. He vomited a couple of times, but only mucus. He still wasn’t feeling too perky and wanted to lie down for a few more minutes. Because of his nausea, we did not restart the tube feed.

netCross2We had been anticipating the arrival of a nurse to reevaluate Dad for another 60 days of skilled nursing. A nurse that we had not met before arrived at 2:00 P.M. for the recertification visit. Instead of being approved for the additional time, she said that Dad was too healthy and that she would not recommend further skilled nursing support. Instead, we would be permitted three calls to the Home Care office during the next 60 days. I suddenly felt like I was dancing on a tightrope and my safety net had just been removed.

After the nurse left, Dad got up for a few minutes to have some shaved ice, but soon wanted to lie down again. He got back up again a few minutes before 5:00 P.M. to join us in the sunroom for happy hour. After chatting for a few minutes, he wheeled himself to the hall closet. Moments later, we heard a loud crash, and Dad was on the floor and on his back. We all ran to him to see what had happened. Apparently, while standing in front of the unlocked wheelchair, he got his feet tangled up in the small front wheels and lost his footing. Fortunately, his fall to the floor was somewhat akin to a bouncing pinball, so he didn’t fall straight to the floor. He did land on his head, however, and it was bleeding. After helping him back into his wheelchair, we gave him a cold compress for the goose egg that was quickly developing on the back of his head. The bleeding seemed to stop, and he wanted to return to the sunroom to watch the news.

IMG_1456When the news was over, Mom noticed that the bleeding had restarted. After careful examination, it seemed that additional swelling had caused little cuts to open and bleed. I used one of my three lifeline calls to Leo, the after-hours nurse. He encouraged us to take Dad to the emergency room to ensure that he was OK. I had often said that I would never take Dad back to the Scott & White emergency room unless he was bleeding profusely, so I guess that this situation qualified as ER-worthy.

Mom, Dad, and I left home for the emergency room at 6:30 P.M. After three hours, a CT scan, four staples in his head, and a tetanus shot, we were on the way back home. The arrival home was pretty exciting when he practically fell on the garage floor as he transferred out of the car.

Dianne ate dinner while we were gone, but when we got home at 10:00 P.M., we ate beans and franks and pumpkin cookies. Dad’s dinner didn’t stay with him very long. Within a few minutes, he had vomited his dinner and cookies. I wished that someone could shed some light as to why Dad kept being nauseated.

We finally got him to bed at 10:30 P.M. We decided to restart the tube feed but restricted the flow to 25 ml/hour. Shortly before 11:00 P.M., the lights were out downstairs, and I was heading to bed.

netCross3January 27.  Dad had a restless night’s sleep, but he and Dianne slept in until almost 7:00 A.M. I didn’t have any early morning meetings and was able to sleep in until 4:45 A.M. It wasn’t close to a full night’s sleep, but after our late night at the ER, it was better than getting up at my usual 3:30 A.M.

When Brenda stopped in for Dad’s physical therapy session, she was relieved to learn that Dad’s fall wasn’t caused by balance issues and that it was no worse than it was. Dad said that he felt fine and didn’t have any pain, so she concentrated on exercises that would improve his balance.

Shortly after Michell arrived at 10:30 A.M., I emailed Becky, the owner of One On One Personal Home Care Services, and informed her that we would be ending our services with her company on February 17. I also asked her to let us tell Michell. We had become fond of her and we wanted her to hear the news from us.

netCross2While Dad was in the hospital, the lock on our front door had quit working. With a little assistance from Michell, Dad switched the front-door lock with one that was never used. After six months of not having access to the house from the front door when it was locked, it was nice to have it working again.

When Kristen arrived today for Dad’s swallow therapy session, we had a tea party of pumpkin cookies and tea. She wanted to see how Dad handled thin liquids and food. He did pretty well, and Kristen presented us with a lesson in anatomy. I still marvel at how any of us can swallow food without choking.

pushmepullyouIn response to an email message that I had sent to Dr. Pfanner’s office about Dad’s frequent vomiting, I received a phone call from Julie, Dr. Pfanner’s dietitian. She didn’t provide any insight as to why Dad kept vomiting, but she said that we should increase Dad’s fluid intake. She thought that he should drink at least a liter each day, which was in direct conflict with the guidance from the nephrologist’s dietitian, who said that he needed to restrict his fluid intake. Sometimes I felt like the pushmi-pullyu.

Shortly before happy hour, I changed Dad’s trach. I was a little alarmed at the sight of it. I couldn’t tell if it was coated with mucus and food or mucus and blood. I took a photo of the nasty mess and texted it to Kristen. Kristen responded right away and said that she thought that it looked more like blood than food. I hadn’t stopped to think about how shocking it might have been to receive such a yucky image on her phone. I quickly sent the photo in an email message to Svenja, the trach nurse at Scott & White, but I suspected that I wouldn’t hear back from her today.

netCross1We were able to enjoy dinner and a game of cards tonight without any interruptions from vomiting. Dad was on his game tonight and beat us at cards. By 7:30 P.M., we had finished our card game and were starting our nighttime routine.

January 28. Dad and Michell had a good night’s sleep and were up at 4:00 A.M. I had started work earlier than usual today so that I could head back to Houston for a couple of days. Fortunately, Dad and Michell were ready a bit earlier than usual, because the HOP bus pulled in our driveway at 5:30 A.M. to take them to dialysis. I appreciated the fact that they tried to ensure that Dad was not late to dialysis, but 5:30 A.M. seemed a bit early for a 7:00 A.M. appointment.

As I was packing up my computer at 11:45 A.M., Dad and Michell returned home. Because they had returned home when they did, the four of us were able to eat lunch together before I left at 12:30 P.M.  These drives to Houston were exhausting, and I usually battled drowsiness about 20 miles from home. Stan had told me that he had often stayed awake by eating M&Ms, so I starting chasing them with coffee somewhere around Brenham, Texas. As soon as I arrived home, I napped for about 30 minutes and then drove to my night class at Glassell School of Art.

netCross2While I was driving home to Houston today, Dad took a nap to recover from his dialysis session. After he woke up, he and Michell went to the garage with Mom to check out a problem that she was having with her car.

During happy hour, Dad had a Sprite, which is considered a thickened liquid, but within a few minutes, he was sick to his stomach again. He wanted to lie down and skip dinner. He had planned to watch a presidential debate with Mom, but he wasn’t feeling well enough to get out of bed to join her. Michell helped him to get ready for bed, and he was asleep by 8:00 P.M.

January 29. I had not been to my Houston office in many weeks, but one of the reasons why I had to come home this weekend was so that I could clean out my cubicle to prepare for an office move. After filling up the trash and recycling receptacles in my cube, I started swiping them from all of the surrounding cubicles. When I left for the day, my cube was ready for the move, and my car was full of personal items that would not fit within the new space.

netCross3Back in Temple, Dad was having a mixed day. Shortly after he woke up at 5:00 A.M., he started vomiting again. He rested a bit and took his time getting dressed. By 6:30 A.M., he was feeling up to eating his usual breakfast of Cream of Wheat and peaches. Michell had waited until after he ate breakfast to administer his morning meds and trach care. When she was finished with his morning routine, she resumed the tube feed at the slower 50 ml/hour rate.

Shortly before 10:00 A.M., Dad had about ½ cup of yogurt and then told Michell that he wanted to go back to bed. As they were discussing his early nap, they decided to play a game of cribbage instead. Dad had taught Michell how to play a few weeks earlier. She was no substitute for Stan, but I was glad that she was able to distract him from taking another nap.

Janet arrived just before 11:30 A.M. for Dad’s occupational therapy session. Regardless of how bad Dad felt, he always seemed to perk up somewhat during their verbal sparring. I was pretty sure that their banter also distracted him from the exercises.

netCross3After Janet left, Dad had a light lunch of ham and cheese and a cup of nectar. Michell was able to get him to practice some of his balance exercises at the sink, and then they walked outside for a few minutes. He then spent the remainder of the afternoon napping.

During happy hour, Dad had some shaved ice. Somehow, Dad had convinced Mom to prepare flounder and beets for him for dinner—a less-than-favorite combination for her. The thought of this missed meal made me want to reach for a Zofran. While Stan and I enjoyed an evening at TUTS watching The Bridges of Madison County, Dad, Michell, and Mom ate ice cream and played Oh Hell, and Mom won.

 

After the fall

November 15, 2015. Dad had a restless night, waking up a few times during the night. At 8:45 A.M., he was ready to get up. Before Gale helped him transfer from the bed to the wheelchair, I administered his morning meds and trach care. Gale had done a great job of taking care of Dad while I was in Houston, but she was glad to have me back in Temple to resume the trach care. After I left the room, Dad wheeled himself into the bathroom and proceeded to shave and wash up. He seemed to have an upset stomach and didn’t get out of his room and into the kitchen to visit with us until 10:00 A.M.

blogaug1-1As Mom and I were driving to church, I told her that I had read the log book that the aides kept about Dad, so I knew about Dad’s fall yesterday. I was pretty irritated that she had decided to withhold this information from me. I was very invested in his care and recovery, and it disturbed me that my parents would choose to keep this information from me. She agreed that they would not withhold this type of information from me again and said that she would talk with Dad after lunch. However, we both hoped that there would be no next time.

bellsWhile we were at church, Dad told Gale that he was tired and that he wanted to lie down. He also complained about some tightness and soreness in his back. Gale thought that he also seemed a little depressed about yesterday’s fall in the bedroom. The home-patient hospital beds had only two side rails, which did nothing to keep Dad in bed. At one point, I had used pipe cleaners to attach a couple dozen little bells to four chairs that we pushed up against the sides of Dad’s bed. He still might have been able to escape from the bed, but we hoped that the bells would wake at least one of us during an attempted escape. The chairs and bells had worked for about a week but were less effective as Dad got stronger. One side of the bed was partially obstructed because of the oxygen concentrator and nebulizer. While Dad napped, Gale moved the wheelchair to the other side of the bed and locked it in place, which made that bad boy practically impossible to move.

After Mom and I returned home from church, Gale told us that Dad had diarrhea. According to her, it had started last night and had become progressively worse during the day. I decided to call the Home Care office and request a visit from the on-call nurse.

blogaug1-leftAfter lunch, Dad read the newspaper in his room and rested until the nurse arrived at 4:20 P.M. She said that Dad’s vitals were great and said that he didn’t have a fever. When she learned about the fall (During every visit, providers ask if you’ve had any falls.) and the difficulty that Gale and Mom had had getting him up off of the floor, she said that we could always call for a nurse for assistance. Regarding the reasons why we had called for a nurse, she could only speculate about the cause of his diarrhea and back pain.

Now that the fall was common knowledge, Mom and I spoke with Dad for a few minutes, and I implored him to ask for help when he needed to get up. He restated that he didn’t want to be a bother, and I told him that we had hired someone whose sole purpose was to be bothered by him. He agreed to ask for help going forward.

He seemed to feel a bit better and joined us for happy hour.

Mom was the big winner at cards this evening. It had been a long day, and we were all tired. We started our nighttime routine at 7:45 P.M. and by 8:30 P.M. we were all in bed.

November 16. Dad had a tough night, starting at 1:00 A.M. This bout of diarrhea had a firm grip on him that was becoming progressively worse. He eventually got out of bed and ready for the day around 8:00 A.M. Gale was able to convince him to exercise with the core weight, but by 10:00 A.M., he wanted to return to his room to lie down.

blogaug1-upShortly after noon, Tracy, the nurse, stopped by for Dad’s routine Monday checkup. Similar to yesterday, Dad’s vitals were good. I asked her if we could give Dad some Imodium, but she said that she could not give advice about medications. I finally asked her what she would do if she was in my position, and she said that she’d give her father half of a pill.

I went to Walgreens and purchased a box of Imodium. A standard dosage was two pills, so I wasn’t concerned about crushing a half of a pill and administering it into his G-tube. I wouldn’t have thought that such a small dosage would have helped much, but he seemed a little better for the next five hours.

At 2:00 P.M., the doorbell rang, and we opened the door and met Kristen, the speech pathologist. When Dad wheeled out to meet her, she introduced herself to Dad as the speech therapist. He said that that was a shame because he hadn’t prepared one. To her credit, she laughed. The session might have been for Dad, but I learned a lot about our complex system of muscles that enables us to swallow. She had Dad work through a couple of throat exercises and left a sheet of exercises for him to practice between sessions. She also said that he could eat crushed ice anytime that he wanted.

After Kristen left, Gale helped Dad use the walker to walk from the kitchen to the laundry room, a distance of about 12 feet. He walked slowly, but his steps were steady and controlled. He stayed up for the remainder of the day, resting only while Mom, Gale, and I ate dinner.

blogaug1-rightAfter dinner, Dad felt like playing cards, which was our litmus test for how well he was feeling. By 7:30 P.M., I had won, and we were moving Dad toward his bedroom to start the nighttime routine.

My room was the only room on the second floor, with windows on three sides. On most nights, I could see the moon from my bed. We were expecting some storms through the area in about six hours, and the wind was already howling around my room when I turned out my light.

November 17. The storms that were predicted to start at 2:00 A.M. started two hours late, just around the time that I woke Gale and Dad. Dad had had a great night’s sleep, but he still had not recovered from the diarrhea. I hated to send him away for 4-5 for dialysis hours with these symptoms and hoped that another 1/2 Imodium would help him. Fortunately, the torrential rain that started at 4:00 A.M. had let up some when the wheelchair transit van arrived. The rain ushered in a cold front, and the temperature had dropped almost 20 degrees between the time that I woke up and when Dad and Gale were picked up.

blogaug1-2Fortunately, they didn’t have to wait too long after dialysis for a ride, and Dad and Gale were home by 12:15 P.M. He was pretty wiped out and wanted to take a nap. By 12:40 P.M., he was back on the bed, hooked up to the tube feed and moist air. I administered his trach care and a portion of his midday meds. I became distracted by some shiny object and forgot to administer his antibiotic. Less than five minutes after I left his room, he was sleeping. While he slept, I called Sue, our friend and nurse practitioner at the dialysis center, to see what else I could do for Dad. She said that I could safely give him two pills, the recommended dosage of Imodium.

By 4:00 P.M., Dad was awake but was still very sleepy. Before he joined us for happy hour, I crushed two Imodium tablets, mixed them with water, and inserted them into his G-tube.

While Mom, Gale, and I enjoyed assorted beverages, Dad ate some crushed ice. A little bit of crushed ice went a long way, but at least he was getting a chance to practice swallowing.

Dad took a short rest in his room while Gale, Mom, and I ate dinner. Although he wasn’t feeling his chipper self of a few days ago, he felt well enough to beat us at cards.

scorpion1While Gale and I were in Dad’s room running through his nighttime routine, Gale found a little scorpion on the floor near her bed. Gale was one of the most fearless women I knew, but she screamed like a little girl when she saw the critter. We had barely disposed of it when she encountered another one crawling on the bathroom floor toward the bedroom carpet. My parents had found scorpions in the house in the past, but I don’t recall ever seeing one, and tonight we saw two.

Although many things in our lives were uncertain, one thing was very certain: Gale would never walk barefoot in the bedroom again.

 

 

Just when I thought we were making some progress

hoyerLift
Hoyer lift and sling

November 10, 2015. Dad had another good night’s sleep. At 4:00 A.M., I took a short break from work and woke Dad and Michell. They progressed through their morning routine without any hitches, but Dad was a bit apprehensive about today’s trip to dialysis. Although today’s transit service to dialysis would be with the wheelchair transit and not the gurney service, he was probably nervous about being moved from the wheelchair with the Hoyer lift. It was supposed to be a safe way to move less ambulatory patients, but it was an unknown entity for us. Before the transit van arrived, we positioned the Hoyer sling under Dad so that the nurse could attach it to the lift when he reached the dialysis center.

When Michell and Dad arrived at the dialysis center, instead of using the Hoyer lift, the EMTs picked up Dad and placed him in the dialysis chair. We had hoped that the nurse at the dialysis center would weigh Dad in the wheelchair so that we could establish a dry weight for him, but the EMTs were too fast. When Dad’s session was finished, Michell encountered a couple of EMTs who had just dropped off a patient. She was able to convince them to transport them home, which enabled Michell and Dad to arrive home at  11:15 A.M., which tied our record time.

Between my working and Dad’s three hours’ worth of naps, I didn’t see him except for trach care until happy hour. He seemed well rested, and by 7:45 P.M., he had beat us at Oh Hell. He headed for bed, and we were finished with our nighttime routine by 8:15 P.M. Our mornings and nights were starting to run like well-oiled machines.

laZbonesNovember 11. Dad had another good night. I might have heard him cough twice. At 7:45 A.M., I was between meetings and wanted to administer trach care and meds, but Dad was still in bed and didn’t want to get up. I told him that he was a lazy bones and that we’d have to make “Lazy Bones” his theme song. He smiled, didn’t open his eyes, but started singing the song.

With the assistance of Michell, he finally got out of bed and got himself shaved and washed up by 8:30 A.M. It was Wednesday—change out day for the aides. Michell was packed up and ready to leave, but she couldn’t go until Gale arrived. Gale was running about an hour late, and she eventually arrived around 11:00 A.M. The ladies exchanged information about Dad, and Michell was on her way.

Mom and Dad met about finances for a while this morning, and then Dad took a short nap before Stephanie, the nurse, arrived. She was also running late, but she finally arrived at 1:00 P.M. Stephanie said that Dad’s vitals were all good and that his lungs sounded clear. She also said that she saw some signs of his bedsore starting to heal. I asked her about the odds of Dad being released from Home Health Care on the 24th. She didn’t think that that would happen, and said that Dad’s home care would most likely be extended an additional 60 days. I wasn’t sure how the process worked, and I had been asking every caregiver for her opinion. The thought that we’d be discharged after our initial 60 day period unnerved me. I was almost out of the lubricant that I used for Dad’s trach. Before Stephanie left, I showed her the package and asked if she could find us some extra packets.

cross9Before Stephanie’s car left the driveway, Brenda pulled up behind her for Dad’s physical therapy session. I didn’t watch the session, but from what I could hear, it seemed like she was working with him on transfers. I once heard her say that Dad got an A on something that he did, but not an A+. At the end of the session, she said that he got a gold star for the day. I had to laugh to myself as I wondered about the type of psychology that they employed to get him to cooperate. On her way out, Brenda stopped by my office and asked me about the rubber mat for the shower that I had agreed to get during our discussion on November 6. I had forgotten to order one, but I promised that I would find one. I also asked her about the chances of us being discharged on the 24th, and she also didn’t think that it was likely. Gale asked her about the exercises that they should concentrate on until she returned on Friday. Whenever the providers left the house, they sat in their cars and updated their notes about their visits with Dad. Before Brenda had pulled out of the driveway, I had ordered Dad’s bath mat from Amazon.

Shortly after Brenda left, Mom and Gale helped Dad use the walker and he walked 48 feet. I logged off from work shortly after 4:30 P.M. and told Dad that I needed to change his trach, and that we’d all be happier if I took care of that chore before happy hour. I grabbed my two TV trays and my assistant, Gale, and we ushered Dad into the bedroom. I probably didn’t need an aide to help me, but I felt better having one of them there with me. Sometimes I forgot to bring something, or I needed an extra hand. For the first time in about six weeks, Dad’s trach was not crusty. The weather had been bad and he’d been forced to stay indoors and away from the dry air.

Dad won at cards again. Before he went to bed, I had Gale administer the meds and the trach care. Gale had said that she would handle Dad’s trach care while I was out of town for a couple of days this week. I was hoping that I could also convince Michell to do the same when I left for a couple of days in December. Gale did a great job, but to ease her mind some, I typed up some notes that detailed every step of the basic routine trach care and the med prep processes. I would be gone for about 48 hours, so she would not need to know how to change his trach.

blogNov10-02November 12. Shortly before 3:30 A.M., I heard Dad call for Gale to help him to find the urinal. I got up shortly after that and woke them. I watched as Gale handled all of the meds and routine trach care this morning—her last practice run before I left for Houston. Everything ran smoothly, and we were ready when the wheelchair van arrived at 5:50 A.M., some 20 minutes early.

While I was working, I heard the audio caller ID on my parents’ landline announce in a distorted voice that we were receiving a call from Watts Prison. For a moment I considered letting the call go to voicemail, but my curiosity got the better of me. I laughed out loud when the caller identified herself as Kristen Watts. So that she didn’t think that I was a nutcase, I quickly explained why I was laughing. After exchanging schedule information, we agreed on Monday and Wednesday sessions at 2:00 P.M. for Dad’s swallow therapy. Her first visit with us would be on Monday, four days from now. I practically ran out of the office to find Mom and share the good news!

I received a call from Gale at 12:20 P.M., stating that she and Dad were on their way home from dialysis. I waited until they got home, and then I left for Houston. The last time that I had been home was on September 22. During that three-day visit, I had come home to pack a few items that I would need during Dad’s final days in hospice.

blogNov10-01Gale had her first solo run with the meds and trach care right after I left. Dad took a nap until 3:00 P.M. and was up for the remainder of the day. The three of them played cards, and Mom won again.  Gale got Dad in bed by 8:00 P.M. and had no problem administering his night time meds and trach care.

That evening, I attended my photography class. The last time that I had seen my classmates, I told them that I had just finished making hospice arrangements for my father. We had had quite a change in fortune since late September. I had been attending class with some of these people for more than five years, and I had known the instructor since 2008. It felt good to be with them again, and they were very excited about Dad’s progress.

November 13. Dad had had another great night, and he slept until Gale woke him at 8:00 A.M. Shortly after Dad was out of bed and dressed, Gale noticed that the line from the nebulizer was dry, which meant that Dad wasn’t receiving any moisture with his oxygen. She called Jared from American HomePatient, and he came over immediately. It seemed that we were supposed to change the water bottle every two weeks. Gale added this missing tidbit of information to our list of chores, but it would have been nice to know this about six weeks earlier. Jared and the other representatives who set up Dad’s home care room probably did tell us everything that we needed to do, but this orientation occurred amid a whirlwind of activity with no written instructions left behind.

blogNov10Stephanie, the nurse, came by around noon to take Dad’s vitals and check his bedsore. She said that the bedsore was healing nicely and that it was looking great. Bless her heart; Stephanie also brought us enough trach lubricant to last for a couple of months. These home care nurses were wonderful. In hindsight, I don’t know if I ever told them how much I appreciated them.

When Brenda stopped by later for Dad’s physical therapy session, she had Dad practice a dry run (literally) getting in and out of the shower with the new mat. She didn’t have him walk today, but she had him run through a series of bed exercises.

My Mom’s dear friend, Marilyn, stopped by around 3:30 P.M. with a nice arrangement of mums and visited with my parents for about an hour. Mom hadn’t resumed her social life, and she benefited by having her friend visit.

Meanwhile, I was in Houston. While I had been in Temple with my parents, my employer had arranged for new office space on our campus. I would be moving from a cubicle to an open-space environment with less room for books and personal belongings. I spent most of the day in my cube, throwing out paper. I filled up three trash cans and three recycle bins, and was still not finished. Stan was thrilled when I brought home three boxes of personal items.

blogNov10-02November 14. Dad seemed to be on a roll. He had another great night’s sleep. He and Gale ran through their morning routine and arrived at the dialysis center shortly before 7:00 A.M. It was a slow day for the EMS transport service, so the wheelchair transport arrived shortly after Gale called them, and then she and Dad arrived home shortly before noon.

Dad was tired and was ready for a nap after Gale administered the midday meds and trach care. After Dad had drifted off to sleep, Gale left the room.

While I was in Houston, I ran several errands, stopped by the office to throw out more paper and prepare my belongings for the move, and got a haircut. I encountered several friends and happily told them about how well Dad was progressing. When I started my return trip to Temple at 2:00 P.M., I was feeling positive about how we were getting along.

blogNov10-01Shortly after I left Houston, Dad woke up from his nap and needed to use the bedside commode. Instead of calling for assistance, he decided that he could get out of bed and into the bathroom without assistance.  Not surprisingly, he fell as soon as he took one step from the bed. Gale heard the commotion through the baby monitor and ran to Dad’s room. She was unable to lift him off of the floor to get him back into the bed. She called for my mother for assistance. It took the two of them almost an hour to get him back into bed so that she could assess any damage caused by the fall. Not only had he been attached to the tube feed, but the oxygen was also attached to his trach collar, which was cupped over the trach tube. While on the floor, he had put a tremendous strain on his G-tube and he was lucky that he didn’t decannulate himself during the fall. After Gale had straightened out the mess caused by the mishap, she helped Dad transfer into the wheelchair.

An hour or so later, Dad wheeled himself into the kitchen and asked Mom not to tell me about his fall. She said that she wouldn’t tell me about the incident, as long as he promised not to try to get out of bed again without assistance.

When I arrived at my parents’ home shortly before 5:00 P.M., I was greeted by what seemed like a happy household. We had a nice happy hour, and after dinner, we played two games of Oh Hell. Gale was excited to win the first game, and Mom won the second game.

blogNov10-02When we finished playing cards, Gale told me that she wanted to take a shower. She said that I might want to read her log book to catch up on the activities that occurred while I was gone. I read her notes about today’s fiasco and was horrified, appalled, and furious. Such a stunt could have seriously hurt him. I spoke with Gale before I went to bed, and she was very upset. She said that she had never experienced such an incident before and was not sure that she wanted to return, which would be a tremendous loss for all of us. Not only would we lose a wonderful caregiver, but we also were very fond of her.

Fuming, I went upstairs and called Stan. The poor guy got an earful as I unloaded my frustrations of Dad’s day. He talked me down and told me to approach Dad and his resistance to following instructions in terms of my fears. He wasn’t kidding. Dad was his own worst enemy, and like Gale, I was afraid to let him out of my sight.