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.


Transitioning from sick room back to bedroom

February 22, 2016. After all the excitement of going to church yesterday, today seemed almost boring, but in a good way. Dad didn’t seem to have much of a cough this morning, and for a while, I thought that we had vanquished his congestion. His cough came back sporadically during the day, but it seemed like we had turned a corner.

sickroomCross2Another normal activity returned today when Mom attended her book club with her good friend Marilyn. I was thrilled that she was able to get out of the house and visit with her friends. When you’re in caregiver mode, your new normal world becomes very small, and it seems almost strange to return to your former normal life.

While Mom was away, I acted as Dad’s spotter while he made three trips up and down the front steps with his walker. He appeared fearless, but my heart was firmly planted in my throat. It was all I could do to keep my hands off of his shirt, although I’m pretty sure that I did grab the back of his shirt a couple of times. It probably didn’t do much for him, but it made me feel like I could save him from a fall. Fortunately, I didn’t have to test that theory.

Brenda had been working with him to be independent with a cane. Up until now, he had used his cane and walker when he was away from the house but relied on the wheelchair when he was at home, saying that he could move faster with it, which was true. He practically zipped through the halls in that wheelchair. The aides had commented on how well he handled the contraption. Michell had marveled at how the walls held no telltale signs of a wheelchair in residence. Kathleen, the physical therapist, had commented that Dad was the opposite of most of her patients, who used wheelchairs away from home and canes and walkers when they were at home. We were expecting weekend guests within the next couple of weeks, which might have inspired Dad today to get out of his wheelchair and spend more time walking with his walker and cane when he was at home.

sickroomCross3While Dad was feeling adventurous, he wandered into the pantry to get a can of fruit. He stooped just a bit too low and struggled mightily to get up. I wasn’t in the best place to help him, and he was pretty winded when we finally got him up and out of the pantry. We agreed that he was not quite ready for knee bends.

After I logged off from work, I prepared a casserole for our dinner. While waiting for dinner, we enjoyed our happy hour together and watched the news.

We played a three-handed game of Oh Hell, and Dad won. Mom was a little shaky on threading the tubing in the Kangaroo pump, but she handled the meds like a pro.

sickroomCross1February 23. Today marked the 148th day that Dad had been home from the hospital. He had now been home as many days as he had been hospitalized. A month or so after Dad returned home, I had had a conversation with our friend Adan about what to expect regarding Dad’s recovery time. I had asked if Dad would require one day of recovery for each day of hospitalization, and Adan had said that he thought we might be looking at a 2:1 ratio. Dad wasn’t close to where he was when he entered the hospital some 236 days ago, but I suspected that Adan was correct in his assessment. Because I didn’t want to discourage him, I didn’t want to tell Dad that he was merely at his halfway point to being recovered. He seemed to be pushing himself to resume his former life.

We were all up early—some of us (Dad) earlier than others. Usually, because of the baby monitor resident in the master bedroom, whenever Dad woke up, I also woke up. Last night, after a relatively early night for all of us, I had slept soundly, even through a hard rain and a thunderstorm.

sickroomCross2Mom fixed Dad his typical breakfast of Cream of Wheat and then drove him to dialysis. Fortunately, the rain had stopped before they left. During dialysis, Dad had 1,900 ml of fluid removed. Our routine had started to settle down, which enabled me to put in a full and uninterrupted day of work. During my lunch break, I was able to get out of the house for a walk, which turned out to be a short one because of the cold and windy weather. I’m more of a fair-weather walker.

Mom and Dad were able to take a nap after lunch. When we finished playing cards at 7:30 P.M., the three of us were tired and ready to call it a day. By 8:00 P.M., Mom had administered Dad’s meds, and I was on my way to my room for my nightly call to Stan.

February 24. Dad woke up around 3:00 A.M. and asked if he was still tied up. Mom disconnected him from the Kangaroo pump so that he could use the bathroom. She then told him to go back to sleep, which he did, sleeping until 6:00 A.M.

sickroomCross3Kathleen, the physical therapist, called and said that she would arrive to assess Dad’s progress sometime between 11:00-11:30 A.M. I was looking forward to her approving Dad for another 30 days of physical therapy. When she arrived at 11:15 A.M., she watched Dad walk with his cane and told us that Dad was doing great, so great that she was discharging him from physical therapy. With this announcement, Dad had now been discharged from home care, occupational therapy, swallow therapy, and now physical therapy. For better or worse, we were now truly on our own. Yay?

After lunch, Dad and I went grocery shopping at Wal-Mart, and by the time that we returned home, we walked over 15,000 steps for the day. He had his walker with him, but I had him push the cart, which gave him some stability. After we got home and brought in the groceries, he and Mom went back out for more groceries, this time to Sam’s.

Dad did a lot of walking today, probably more than most people, but he still needed to exercise to build his strength and improve his balance, but he would shut down the conversation when I tried to broach the subject with him.

When we were getting Dad ready for bed, I checked his pill box and discovered that he had not received any meds since last night. Until the dispense of meds became second nature for Mom, I would have to keep a more watchful eye on Dad’s meds.

February 25. Today I was more worried about Mom than Dad. With the aides gone, she had more responsibility. I didn’t want to assume all of the work of the aides because I wanted to ensure that Mom could tend to Dad during my periodic trips to Houston. But now, it seemed that the extra work was beginning to take its toll on her, and for the first time, I thought that she looked frail.

sickroomCross1After breakfast, she insisted on going to Penny’s to buy linens for the new bed. While she was gone, Dad and I talked about him assuming more responsibility for his care. So that Mom would not need the extra burden of administering his medications, I proposed that Dad prepare his medications and then he and Mom could administer the crushed and diluted cocktail in his G-tube, and he agreed. I also got him to agree to drink one Ensure and one Nepro a day, which would provide him with 775 calories. This base of calories would help to ensure that he consumed the calories he needed to add some much-needed meat to his bony frame.

The three of us watched the Republican debate. My parents hung in until 9:00 P.M. It ended at 10:00 P.M., so this was a late night for me. When they were getting ready for bed, Dad gave himself his nighttime meds. Mom had had a bad cough during the evening and while we played cards. Before she went to bed, I gave her a breathing treatment. Thank goodness that Dad’s prescription provided us with more saline and albuterol than one person could use.

February 26. I was up early and worked until Dad came into the office. Mom had not seemed well yesterday, and he was worried about her. While we were talking about her, she walked into the kitchen all perky, looking like she was ready to take on the world. She was like a walking testimonial for the benefits of a good night’s sleep. Although I had worked for a bit while my parents were still sleeping, I had actually taken the day off from work. We had a busy day planned, and Mom was ready to get started.

sickroomCross2Right after breakfast, we hit the chores like field hands. I quickly deflated the inflatable bed, and at 8:15 A.M., a guy from American HomePatient arrived and picked up the hospital bed. Unfortunately, he did not take the mattress, so I moved it to a back room in the house. Evidently, they can’t reuse mattresses and they won’t pick up anything that they can’t give to another patient. We were hopeful that we could find someone who would take a mattress off our hands.

Now that the master bedroom was bed-free, we cleaned, vacuumed, and shampooed the carpeting. Once again, I said a silent thank you to my husband for purchasing the floor mats to cover the bedroom floor. I’m positive that the carpeting would have been ruined otherwise.

While we were waiting for the carpeting to dry, Dad and I made another trip to Wal-Mart. After lunch, the three of us decided to take advantage of some free time, and we napped for about an hour. After we woke up, we did a bit more cleaning before the Ashley Furniture truck arrived at 4:00 P.M. After they assembled the bed, they were gone in a flash. We then spent 45 minutes struggling to put the mattresses inside of the mattress covers. We eventually triumphed, but the experience was aggravating, and I’ll never buy one of these beds for myself. We were finally finished manhandling the mattresses at 5:15 P.M., and I was good and ready for happy hour.

During the day, Dad drank all but about 2 oz of the Nepro/Ensure mix, and he gave himself his meds.

sickroomCross3After making the bed, Mom rearranged some of the medical accessories in the bedroom so that it looked more like a bedroom and less like a hospital room. Among other things, the baby monitor was removed from their room, which was a huge milestone for me. For the past 151 days, I had barely slept while I monitored Dad’s sleep and nighttime emergencies and needs. With the monitor gone, I felt like I was experiencing some separation anxiety.

February 27. After a day of physical activity, we all slept well, and we all slept for at least seven hours. The morning was uneventful and smooth, but I forgot to weigh Dad before he and Mom left home for the dialysis center.

During dialysis, Dad had 1,600 ml of fluid removed, but he probably should have had more removed. It was ironic that for so many months I had been critical that the nurses were removing too much, yet now I had the opposite concern.

A couple of days ago, Dad said that he would drink Ensure for lunch and the Nepro throughout the day. Today he back-pedaled on our agreement and drank the Ensure but not the Nepro.

sickroomCross2Mom and I fixed up their bedroom and spent some time putting together some other rooms of the house. The entire house was looking more like a home and less like a hospital. Their bedroom had had the most significant transformation, and only a set of shelves with some medical supplies gave any indication of how the room had been used for the last 21 weeks.

Stan arrived shortly after Mom and Dad returned from dialysis. Dad took a nap after lunch and then he and Stan started up the grill for dinner.

With all of the transformational activities during the past few days, it seemed like we needed a family photo to make the milestone. Happily, everyone was receptive to the idea.

Dad won at Oh Hell. I was able to get 1,400 calories in him today, so I felt like a winner too.


More milestones and fewer nets

February 18, 2016.  I knew that Dad had had a very restless night. Because his bed constantly creaked while he fidgeted, I hadn’t had much sleep either. When he woke up at 4:00 A.M., he said that he hadn’t slept much, and I had a pretty good idea why. Today’s trip to dialysis would be different from any other trip because not only would he not have an aide to accompany him, he wouldn’t have an aide stay with him. In addition, Mom would drive him to and from dialysis. I had also spent a few worried minutes awake because I was concerned that he would try to get out of bed. I didn’t realize it at the time, but at 3:15 A.M., he did get out of bed by himself and got into the wheelchair.

net2BirdShortly after hearing the wheelchair, I got up, dressed in my scrubs, and logged on to work. It was then that I noticed that Mom was still sleeping and had not helped Dad out of bed. Mom woke up shortly before 4:00 A.M. It was a semi-hectic morning on our first dialysis day without an aide, but Mom and Dad were on their way to the dialysis center in plenty of time for Dad’s 7:00 A.M. appointment.

After Mom returned home, she and I ate breakfast and then she started baking a batch of English muffins. Unfortunately for her, she miscalculated how long the baking would take, and she realized too late that she would not get to the dialysis center at my parents’ agreed-upon time. As she feared, she arrived a few minutes late.  Dad was royally annoyed, and he complained ad nauseam about her tardiness. He finally dropped the subject and said that they would have to adjust their schedule. During dialysis, only 1,400 ml of fluid was removed, which seemed low to me. Dad still had a bad congestion, which made me nervous about his fluid levels. I told him that I planned to take him to dialysis this coming Saturday.

net2NetDuring lunch, Dad started backpedaling on his agreement to drink Nepro with his lunch. If he didn’t consume enough calories during the day, he’d have to consume them during the night while he slept. His excuse for not drinking the Nepro today was an upset stomach. After lunch, he took a nap and slept for about 90 minutes. Mom was also tired and fell asleep while sitting in a glider chair in front of the television. I think that they both got some of their best sleep while sitting in front of the television.

When she woke from her nap, Mom called the furniture store and ordered their new bed and scheduled it to be delivered next Friday, eight days from today. My parents had shopped at three stores and had finally settled on a split king-sized bed from Ashley Furniture. Because Dad was supposed to sleep at a 30% incline, they needed a bed that enabled him to sleep on an incline while she slept flat. Before the bed arrived, we’d have to get rid of the hospital bed and move her twin bed back to the guest room.

I stopped work in time for our happy hour and gave Dad some Tussin to help ease his congestion. Although his congestion sounded bad, his temperature, oxygen saturation, and heart rate were all good. We had a relatively light dinner of leftovers and sorbet. Although three-handed Oh Hell isn’t as much fun as when we have more players, Dad wanted to play, and I won.

net2KnotAfter the card game, we headed to the bedroom. While Mom prepared Dad’s night time meds, I gave Dad another breathing treatment. We finally got our first aide-less day under our belts by 8:30 P.M. Whew!

February 19. The day started with a knock-down drag-out argument between Dad and me. We argued over his nutritional needs, Nepro, and the amount of fluid to be removed during dialysis. When Mom left the house in tears, Dad and I sat down and had a rational discussion. He didn’t understand dialysis or his body and only partially heard what was said around him. We finally agreed that when I took him to dialysis tomorrow, I would talk to the nurse about how much fluid to remove.

net2BirdBrenda arrived at 9:30 A.M. for Dad’s physical therapy session.  She put him through the paces but commented to me that she was frustrated that he didn’t practice any of the exercises between their sessions. She and I both hoped that Kathleen would extend his time in physical therapy during his upcoming evaluation. Although his strength was improving, we felt that he needed more therapy.

At 11:30 P.M., Janet stopped by for Dad’s final occupational therapy session. Unlike the physical therapy exercises, Dad did practice some of these exercises between sessions because Mom liked to do them with him.

After eating lunch, Dad took a short nap before Kristen arrived for her final swallow therapy session with him. He presented her with a list of foods that he wanted to eat and asked her if he could eat them. Most of the items were planted firmly in the NO column, but he kept trying to get her to agree to rice and nuts.

net2NetNow that I knew when my parents’ new bed would arrive, I needed to ensure that we’d be rid of the hospital bed slightly before the arrival of the new bed. I called American HomePatient and left a message with Holly, the branch manager, and told her that we needed to have the bed picked up first thing in the morning on February 26.

During Dad’s plan of care meeting, Dr. Issac said that he would order a referral for Dad to see Dr. Greg Jaffers about fistula surgery. I wanted to get an appointment with the surgeon as soon as possible and texted Sue, the dialysis nurse practitioner, to check on the status of the referral. She replied that Dr. Jaffers’ office would contact us when they received the referral.

net2KnotAfter the therapists left, Mom did some shopping and Dad wrote up an article about the Locke Academic Foundation. My father funds a scholarship for political science students at Colorado Mesa University, and he sent some additional information about the scholarship to Shell, his former employer who matches his funding. While the house seemed to be running with a steady rhythm, I worked until 5:00 P.M., which was when I stopped for our happy hour. Dad was still intent on eating peanuts, so I reminded him that for the time being, to reduce the risk of aspiration, he had to avoid eating nuts. When he said that he didn’t know what aspiration was, I was a little alarmed. I couldn’t understand how we could have come this far without him understanding what aspiration was, that it was a bad thing, and how it had nearly killed him.

We didn’t play cards tonight, and I’d be glad when Stan arrived tomorrow.

February 20. I took Dad to dialysis today. The nurse had suggested that they remove 1,600 ml of fluid, but I told her that I thought that his target dry weight was a bit high. His ankles seemed swollen, and I suggested that 1,800 ml might be a better goal, and she agreed.

net2BirdAfter Dad was settled, I left the dialysis center and promised to return at least 20 minutes before the end of his session. He did fine during dialysis and didn’t cough until I came to pick him up. Stan arrived from Houston about 20 minutes after Dad and I returned home.

To begin preparing for the new bed, Stan and I moved the twin bed that Mom had been sleeping on from the master suite to the guest room. We then moved the inflatable bed from the guest room to the master suite for Mom to use until the new bed arrived. The bed wasn’t comfortable for long periods, but Stan wouldn’t be here next Friday when we had to clear out the master bedroom, and I wanted to take advantage of his brawn while he was here. Moving the beds now would enable Mom and me to more easily clean up the room in advance of the delivery of the new bed. I hoped that the inflatable bed wouldn’t be uncomfortable for Mom and that she would be able to get some sleep during the coming week.

I helped Mom set up Dad’s meds for the next two weeks, and the guys played a few hands of cribbage. As long as Stan was here, Dad seemed a bit more laid back.

net2BirdAfter dinner, we played some more cards and monitored the primary election results on the television. In Nevada, Hillary Clinton won the Democratic caucuses and Donald Trump won the South Carolina Republican primary.

When Dad finally went to bed at 9:45 P.M., he said that he was feeling queasy and he was still pretty congested. I was worried that he might not feel well enough to attend church tomorrow.

February 21. I had high expectations for the day. Although we had stayed up a little later than usual, I had been able to sleep for more than seven hours, which was very unusual for me. However, the day seemed to take a turn for the worse when I entered my parents’ bedroom. Dad had a bit of congestion and he seemed to be in a crummy mood. His attitude was such that I fully expected him to back out of attending church again today.

net2NetI was relieved when the four of us got inside the car. I drove to the church and let everyone out close to the church entrance. The accessible parking spots were occupied and the parking lot was surprisingly full, so I had to park quite a distance from the church entrance. I joined my parents and Stan at our regular pew in the church. Soon after we arrived, our church friends who sat in the pew behind us arrived. When I saw Pastor Tom in the sanctuary before the service, I told him that Dad was with us. He stopped by our pew and welcomed Dad in true Tom style. He started the service with a big JOY and announced that after being deathly ill since May, Neal Locke was back. The congregation gave Dad a huge round of applause, and then Tom (jokingly) asked if Dad had brought his offering with him. After the service, many people approached Dad to welcome him back. Before we had left the house for church, Dad had said that he wouldn’t attend church again until he was better. After his warm reception from the congregation, he seemed willing to attend more often. My parents were very fond of this pastor, and before Dad’s hospitalization, my parents had rarely missed a Sunday in church. Getting Dad back to church seemed like another major milestone in his recovery.

net2KnotWhen we got home from church, we spent a lot of time working out the arrangement of my parents’ bedroom. After Stan left, we watched the golf tournament, and I tried to get some work done. We spent most of the evening just talking. Dad’s congestion was practically gone, but he let me give him a breathing treatment before bed. Mom was getting better at administering the meds and tube feeds.

I finally got to bed at 9:10 P.M. After four days without an aide, we seemed to be easing into a routine.


Net photo by Tina Hartung on Unsplash


More milestones on the road to recovery

milestoneCross2February 15, 2016. Around 1:00 A.M., the sound of the Yankauer pump woke me, and then I heard Mom and Dad talking, so I got out of bed and went downstairs to their room to see if they needed any assistance. The tube feed bag wasn’t empty, but it was off, which initially annoyed me. Then I noticed that Dad’s congestion sounded bad, so I told him that I wanted him to have another breathing treatment. While I was getting the nebulizer ready, Dad complained about the Kangaroo feeding pump and how it was preventing Mom from getting her much-needed sleep, which also annoyed me. He resisted drinking the Nepro during the day and now he was coming up with reasons to not consume it at night. They had insisted that they could take care of themselves, but Dad seemed to be coming up with excuses to ignore the doctor’s instructions. After Dad finished the four-minute breathing treatment, I restarted the Kangaroo pump and returned to my bedroom.

When I got up at 6:00 A.M., I found Mom struggling with the tubing that connected the G-tube to the tube feed. Dad needed to get out of bed to use the bathroom, and Mom was having a difficult time getting him unhooked. Dad waited patiently as I helped Mom to set him free.

milestoneCross1While Dad was brushing his teeth, he vomited some mucus and Nepro. My first thought was that he might be accumulating fluid in his lungs. I grabbed the oximeter and saw that his oxygen saturation was down to 96%. In the past, there were times when I would have been thankful for 96% oxygen saturation, but not since he had been red capped. From the time that he was red-capped and then decannulated, his oxygen numbers had hovered between 99-100%.

I gave him another breathing treatment at 7:20 A.M., but it didn’t seem to help him much. We had a doctor’s appointment today with Dr. Sarla Patil, Dad’s PCP. She had wanted a consult appointment with us to catch up on everything that had happened to him since May 6, 2015. After waiting 45 minutes to see her at his appointment on February 4, Dad cut that visit short because he was eager to get his first haircut after coming home.

We left home for Dr. Patil’s office at 10:15 A.M. The drive to her office might have taken us 15 minutes, and we finally saw the good doctor 11:15 A.M. She’s not part of the Scott & White network, but she had been given access to Dad’s medical records and had reviewed them prior to our visit. She spent an hour with us, going over all of the details of his ordeal. She, like many others, was amazed that he had survived. I wished that Dad could have appreciated how lucky he was and how fragile his condition was. He just seemed to take it all for granted.

We had taken two cars to the doctor’s office. On my way home, I stopped by the pharmacy to pick up a refilled prescription and some Tussin for Dad’s congestion. Sue, our friend and nephrology nurse practitioner, had advised me to buy only Tussin. It has only one active ingredient (guaifenesin), and would not adversely interact with his other medications.

milestoneCross3When Dad, Mom, and Michell returned home, we all ate lunch. Dad agreed to drink some Nepro at lunch with his ham sandwich. Dad had time for a short nap before his swallow therapy session with Kristen. During this session, she had Dad eat some potato chips and two types of cookies. From what I could tell, he handled them pretty well. Bit by bit (or bite by bite), he was being cleared to eat a normal diet.

Shortly after Kristen left at 3:00 P.M., Dad took another short nap, waking up at 4:00 P.M. During happy hour, he drank some ginger ale. For dinner, Mom prepared one of Dad’s favorite meals—salmon and green beans, followed by pineapple sherbet.

After dinner, we played a spirited game of Oh Hell, and Michell won. By 8:00 P.M., the four of us were heading towards my parents’ bedroom. I set up the nebulizer and administered another breathing treatment. When Mom administered Dad’s meds, I had her also add some Tussin in Dad’s G-tube. Michell assisted Mom in setting up the Kangaroo pump. The tubing had to be threaded in a specific path through the pump, and the daily setup process still confounded Mom. By 8:30 P.M., Dad was drifting off to sleep, and Michell and I were heading to our respective rooms.

February 16. Dad was still congested today, but regardless of how he felt, today was a dialysis day, which meant that he, Mom, and Michell were up at 4:00 A.M. Dad was dressed by 4:30 A.M., and I stopped work for a few minutes to give him a breathing treatment. Once again, the HOP bus arrived at 5:45 A.M., 15 minutes early. Dad had gained more than five pounds over the weekend and had 2,600 ml of fluid removed during dialysis. He and Michell arrived home at 11:45 A.M., and I was able to take a break from work at 12:30 P.M. to join them for lunch. I was able to get Dad to drink a glass of Nepro with his ham and cheese sandwich. He needed to consume three cans of Nepro per day, so any amount that I could get him to consume during the day was that much less that he needed to consume at night.

milestoneCross2About an hour after lunch, Dad was ready for a nap. With some oversight from Michell, Mom administered Dad’s midday meds. After resting for less than 30 minutes, Dad woke from his nap at 2:15 P.M., but wanted to lie down again at 4:00 P.M. Less than an hour later, he was up and ready for happy hour. In keeping with his drinks of thickened liquids, he enjoyed a nectar drink.

Mom made a pizza for dinner, and Dad downed two slices and chased them with some sherbet. We started playing cards at 7:25 P.M., and by 8:15 P.M., Mom had won our nightly game of Oh Hell. After Mom finished administering Dad’s meds and prepared the Kangaroo pump and tube feed, Michell and I left for our respective bedrooms.

February 17. Today was a milestone day. Michell would be leaving us, and Dad would attend his plan of care meeting at the dialysis center. I started work at 3:45 A.M. and about an hour later, I heard Dad calling me. He wanted to get up. I had turned off his tube feed at 3:00 A.M. when the alarm on the Kangaroo pump indicated that the tube feed bag was empty. He had consumed this three cans of Nepro during the past 24 hours, so I turned off the pump and disconnected him from it.

milestoneCross1I spotted him as he transferred from the bed to the wheelchair. He quickly wheeled himself to the kitchen and read the newspaper while he waited for Mom to get up. After he ate breakfast, I took a short break to apply shower shields to his dialysis port so that Michell could help him shower. When he was finished showering and shaving, Mom administered his morning meds.

I had a morning of meetings to attend, but I stopped for a few minutes at 9:45 A.M. to chat with Brenda when she arrived for Dad’s physical therapy session. She would have one more session with Dad before Kathleen, her supervisor, assessed Dad’s progress. Her assessment would determine whether Dad could receive additional physical therapy, and if he could, she would set his goals.

At 10:30 A.M. we said teary goodbyes as Michell left us for the last time. She had joined One on One Personal Homecare after Dad returned home, and Dad had been her first patient with the company. She had been invested in his care and very protective of him. When she left, I gave her a card from Stan and me that contained a $300 gift card. Fortunately, she did not open the envelope until she was gone because I don’t think that my parents would have been thrilled that I gave her the extra money. On her way home, she stopped by a fast-food restaurant and opened the card and called me and tearfully thanked me. The house seemed unusually quiet after she left. I don’t think that my parents and I had been alone in the house since last May. Once again, I felt like I had lost another safety net. I didn’t know if Mom yet realized how much support we received from the aides, but within a few minutes after Michell left, Mom called me when Dad started vomiting a lot of mucus.

milestoneCross3I worked a little longer, and then we ate lunch. During lunch, Mom and I tried to convince Dad to drink his three cans of Nepro during the day. If he would do that, we could discontinue the tube feed. The idea received only a lukewarm reception from him. He was all in favor of discontinuing the Nepro during the night, but he didn’t want to drink the three 8-oz cans of it during the day.

After lunch, we headed to the dialysis center for Dad’s second plan of care meeting. In October, I had attended the first meeting by myself, so this would be the first meeting for Mom and Dad. After he walked down a very long hallway with his walker, the group of caregivers all but gave him a standing ovation. The dietitians, nurses, case workers, and doctor in attendance were very impressed with his current condition and that he had made the long walk. Everyone also validated the things that we had been doing to care for Dad, which relieved me. We had a great session. Last month, Dad had resisted the idea of surgery to remove his dialysis port. During this meeting, I think that we convinced him to have the fistula surgery, and he agreed that the graft would be his best option. In addition to reduced risk of infection, the fistula would enable him to shower without shower shields. Most dialysis patients have fistula surgery for dialysis, which enables the dialysis center personnel to use his arm for dialysis. The dialysis ports that Dad had were considered temporary. Dr. Issac said that he would give us a referral for the surgeon who performs the surgery. Because Dad had been so weak, Dr. Issac had not wanted Dad to have the surgery before now. However, he now felt that Dad was almost strong enough to withstand more surgery.

milestoneCross1Instead of playing cards after dinner, we spent quite a bit of time going over meds, how to dispense them, and how to set up the tube feed and Kangaroo pump. While we were at it, I also figured out how to turn off that damn alarm on the Kangaroo pump. The pitch of the alarm was too high for Dad to hear, but Mom and I heard it loud and clear. Now she and I would sleep better. Before I went up to my room, I showed Dad how to disconnect his G-tube from the Kangaroo pump tubing. I had hoped that showing Dad how to free himself from the pump wasn’t a mistake. I crossed my fingers that he would not try to get up and out of bed without assistance. He had been terrible about not wanting to bother the aides. I feared that he would not want to bother Mom.

Getting better doesn’t feel like progress

Intentional decannulation!

February 8, 2016. When I woke up this morning, I thought I heard Dad and Mom talking, but when I went downstairs to check on them, she was sleeping, and he was rolling over in bed. I donned my scrubs and headed to my parents’ office to work. Shortly after 4:30 A.M., I heard Dad calling out my name. When I entered the master bedroom, he told me that he was ready to get up. He had not yet consumed three cans of Nepro overnight. I persuaded him to try to sleep for a bit longer. In the end, he stayed in bed until 6:15 A.M. Dianne came in and unhooked Dad from the now-empty tube feed and helped him into the wheelchair. Dad shaved, got dressed, and headed into the kitchen to prepare his hot water while Mom got dressed. While Dad read the paper, Mom prepared pancakes for their breakfast.

decan_cross2At 7:40 A.M., Dad said that he wanted to lie down. When he returned to the bedroom, I prepared his meds and watched as Mom administered them. While Dad took a short nap, Dianne called Becky to see if Michell would be returning tomorrow. Michell’s mother had undergone gallbladder surgery last week, and I didn’t know if her mother’s recuperation would affect her ability to return. I had tried to text her, but it seemed that her phone number was no longer valid. Becky told Dianne that Michell had a new phone number and planned to return two days from now on Wednesday.

Brenda stopped by at 9:20 A.M. for Dad’s physical therapy session and gave him a good workout. When I told her that our skilled nursing services had ended and that we were ending our aide service in less than two weeks, she was very concerned. The aides had been a godsend. I could not have kept working, and I’m not sure that Dad would have survived without their assistance. However, although Dad had not fully recovered, my parents felt that they had reached a point where they could get by without them. My mother was weary of having the extra people in the house, and they cost more than $1,000/week, and to date, they had been with us for 16 weeks. Before she left, I told Brenda that I would contact Adan to talk with him about our remaining therapy home care. She said that she would tell Adan to expect a call from me. When Brenda left, I sent a text message to Adan, asking him to call me.

decan_cross3Shortly after Brenda left, Mom, Dad, and I drove to the automotive repair shop to retrieve Dad’s SUV. We had left it there on Friday, and it was now ready. We returned shortly before noon. After lunch, Dad wanted to take a nap before his 2:00 P.M. swallow therapy session with Kristen.

Like many of his sessions with Kristen, she spent quite a bit of time reminding Dad about what he could eat. We also spent some time talking about sodium.

decannulationAt 3:25 P.M., the four of us piled into Dad’s SUV and drove to the pulmonary clinic. I had been crossing my fingers and toes for days that this appointment would turn out well. After taking Dad’s vitals, the office staff ushered us into the exam room at 4:00 P.M.  Dr. Giri and Svenja (the trach goddess of Scott & White) were pleased that the diameter of Dad’s stoma had decreased and agreed that it was time to decannulate Dad. I could barely contain my excitement. Within moments, Svenja removed the trach and showed me how to clean and dress the stoma. Before we left, she also gave me some supplies to dress the stoma until it closed. During Dad’s hospitalization and recovery, medical professionals reminded me that it takes longer for an elderly person to heal. I hoped that Svenja provided me with adequate free supplies. As we were leaving the pulmonary department, I said what I hoped would be my final goodbyes to some of the pulmonary staff that I had come to know during the past year—including Dr. Stewart, who had told us that Dad would probably never be able to eat carrots and peas. Score!

decan_cross1We arrived home at 5:00 P.M., just in time for a very happy happy hour. We watched the news, and an hour later Mom served us Swedish meatballs for dinner. By 7:45 P.M., we had finished playing cards and Dianne beat me at Oh Hell by one point.

After Dianne helped Dad get ready for bed, I walked Mom through the process of getting Dad hooked up to the Kangaroo pump and administering his nighttime meds. Fortunately, trach care was now a thing of the past. I would change his stoma dressing in the morning.

When I called Stan to tell him about the events of the day, he told me that Dianne had told him on Sunday that she had not ever worked for a client that had gotten better. Wow.

decan_cross3February 9. I woke up a little before 3:45 A.M. and woke Mom and Dad at 4:00 A.M. Mom had added the third can of Nepro only a couple of hours earlier, and about a cup remained, which meant that Dad would have to finish the remaining Nepro when he returned from dialysis. After getting dressed, he wheeled himself to the kitchen and prepared his hot water while Mom prepared his Cream of Wheat and figs. While Dad was eating, I worked with Mom to prepare Dad’s bag for dialysis and to administer his morning meds.

While Dad was in dialysis, our neighbor, Barbara, stopped by with some beautiful roses. She stayed for about an hour and got an earful from Mom and me about some bothersome things that happened to Dad during his stay in the Scott & White hospitals.

During dialysis, 1800 ml of fluid was removed, and Dad’s weight changed from 68.4 kg to 66.8 kg. After he returned home, we ate lunch and then Dad took a nap. While he slept, we connected him to the Kangaroo pump. During the two hours that he slept, he consumed the remainder of the Nepro.

decan_cross3After he got up, I knew that I had to change his stoma dressing. I was a little squeamish about this chore. I had this visual image of seeing the inside of his trachea. When I removed the old dressing, I was surprised at how much the stoma had closed. Although the skin on his neck had not closed, the trachea was practically healed. Svenja had told me that for a few days, when the dressing was removed, Dad would not be able to talk without covering the stoma. For all intents and purposes, the trachea had closed in 24 hours. I had no idea that the body could heal itself so fast. I’ve had paper cuts that took longer to heal.

During happy hour, we watched the news and were anxious to hear the results of the New Hampshire primary election. Mom beat the pants off everyone in Oh Hell, and by 7:45 P.M. I was helping Mom get Dad ready for bed. I don’t think that she realized how much work it was to care for Dad. Before heading up to my room, I checked my phone and learned that Trump and Sanders had placed first in the New Hampshire elections. Go figure.

After falling asleep, I was awakened by a text message. It seemed that the father of a Glassell classmate had died earlier in the evening. I had only seen photographs of David’s father, but after having worked so hard to keep my father alive, this death hit me hard.

decan_cross2February 10. Everyone was still sleeping when I started working, but at 5:00 A.M., I heard Dad insisting to Mom that he wanted to get up. We had moved one of the baby-monitor stations to the aide’s bedroom, so Dianne appeared a couple of minutes later to help Dad get up. Mom had already disconnected him from the Kangaroo pump. Because he got up early, at least one cup of Nepro remained in the tube-feed bag, and he would need to finish it later in the day.

Brenda arrived at 9:00 A.M. for Dad’s physical therapy session. Dad’s goal for this period was to be able to walk with a cane, and Brenda was doing her part to ensure that Dad’s balance would support that goal.

Minutes after Brenda left, Michell arrived. We said our final good-byes to Dianne. This last week with Michell would be our final week of aides. Stan had purchased some angel pins, and I gave one to Dianne as she left. Dianne’s loud non-stop talking sometimes grated on Mom’s nerves, but she was a good aide, and I had appreciated the way in which she cared for and watched out for Dad.

decan_cross3After lunch, Dad started giving me static about eating, saying he would not consume more food as long as he was receiving three cans of Nepro. I told him that I would not reduce the amount of Nepro by a can until he ate more. I had been monitoring his caloric intake since he started eating meals with us and he had never consumed more than 675 calories each day, which was not enough for him to maintain his weight, let alone gain weight and keep up his strength. We had both dug in our heels and I eventually left the room.

When he got on his bed for a nap after lunch, he pitched a fit when Michell hooked up the pump to his G-tube so that he could consume the remainder of the Nepro. He was starting to get on my last nerve with his constant refusals to exercise or eat. I took a break and went outside for a long walk. As I returned from my walk, I met Kristen in the driveway. It was 2:00 P.M. and time for Dad’s swallow therapy session.

decan_cross3When Mom and Michell got Dad up from his nap, he was still in a snitty mood and was a little rude to Kristen. Kristen had been in the house only a few minutes when we heard a knock at the door. Mom and I were thrilled to see Adan on our doorstep. Dad didn’t remember him, but Mom and I were very grateful to him for his support and all that he had done to enable us to get Dad eating again. Unfortunately, Dad’s icy demeanor didn’t thaw when he met Adan, and I was embarrassed beyond words. Kristen had told Adan about Dad’s great progress and had conspired with Adan to surprise us. While Adan was here, he mentioned that he had spoken with Dr. Randall Smith about Dad’s progress. Dr. Smith had saved Dad’s life by switching Dad’s discharge orders from hospice to home care and would always hold a special place in my heart.

Shortly after Kristin and Adan left, the doorbell rang again. Gale had arrived! We had arranged to have a dinner for both Michell and Gale. Although Gale hadn’t been our aide since Thanksgiving, she had been the perfect aide for Dad during his first week at home. She had implemented some of our home care standards and had taught me a lot. I don’t know how we would have coped without her.

decan_cross1Now that Gale was in the house, Dad was in a much better mood. The five of us enjoyed a nice happy hour, followed by a scrumptious meal. I had forgotten how much Gale liked playing Oh Hell, and she hollered with delight when she won. By 8:00 P.M., she had to leave to drive a couple of hours to her home. As she left, I hugged her goodbye and gave her an angel pin in the hope that she would remember us and how grateful we were for having known her.

Tomorrow was a dialysis day, so as soon as Gale left, Dad started getting ready for bed. Mom and I set up the Kangaroo pump and administered his nighttime meds.

The first part of the day was a little rocky, but I loved seeing Adan and Gale today. It felt like a day of transition, but the real transition was still a week away, when we would no longer have any aides.

Baby steps toward normalcy

redcap21_smallFebruary 4, 2016. At 2:00 A.M., Dad was awake and was making noises that Dianne couldn’t understand. It took her only a couple of moments to realize that his red cap was missing, which prevented him from being able to talk. Dianne spent a couple of minutes looking for it and found it on the floor. He must have blown it off when he coughed during the night. We had a spare red cap in a saline container, which Dianne placed on Dad’s trach. She then placed the soiled red cap in the saline and refilled the tube-feed bag with Nepro, and then she and Dad went back to sleep for a couple of hours.

When Dad woke up at 4:00 A.M., the tube-feed bag was not empty, but Dad could not remain in bed on a dialysis day. By 5:45 A.M., Dad and Dianne were on the HOP bus and on their way to dialysis. While he was there, 1500 ml of fluid was removed. When Dad left this morning, his ankles seemed a tad swollen, so I hoped 1500 ml of fluid was adequate.

normalcyCross1Dad and Dianne were back home by 11:30 A.M. I had been in meetings all morning and hadn’t seen them leave or return. I was able to break from working at noon, and the four of us had lunch together. To accommodate an appointment with his primary care physician (PCP) and a haircut this afternoon, Dad wanted to take his nap right after lunch.

The four of us arrived at his PCP’s clinic at 2:45 P.M., and then sat for 15 minutes in the waiting room and an additional 30 minutes in the examination room before Dr. Sarla Patil arrived. Dr. Patil had become Dad’s PCP a few months before he entered the hospital, and Dad had seen her a couple of times before his surgery in May 2015. During Dad’s hospitalization, she had not received as much as an email from the physicians at Scott & White, which seemed like a strange way of maintaining doctor/patient relationships. We had made this appointment to have Dad’s staples removed from his head wound, but Dr. Patil wanted to talk about the events of the past nine months. However, Dad was determined to get a haircut today, and he cut the conversation very short. On the way out, we made an appointment to see her for a consultation, which would enable us to have a longer conversation.

We had arrived in separate cars, so when we left, I drove to HEB to pick up some groceries and then went home so that I could go back to work. Mom, Dianne, and the newly-trimmed Dad returned home about 30 minutes after me, and they were ready for happy hour.

normalcyCross3We had planned to tell Dianne that this would be her last shift with us, but after dinner and our game of cards (in which Dad beat me by 1 point), she dropped Dad’s hearing aids behind his dresser. The dresser was tall and heavy as lead, so retrieving them would be challenging and I didn’t plan to attempt to retrieve them until tomorrow. When Dianne was out of the room, Dad told me that he was concerned that she might think that the mishap with the hearing aids had something to do with the end of her service and asked me to wait and tell her tomorrow.

By 8:00 P.M., Dad was in bed and falling asleep.

February 5. I had a busy day at work, which started just before 4:00 A.M. Mom stopped by to see me just before 6:00 A.M. to say hello and to refill my coffee. I asked her how Dad was today and was surprised to learn that he and Dianne were still sleeping. About 30 minutes later, I heard them talking, and then at 7:45 A.M. I heard the sound of Dad’s wheelchair passing by the office en route to the kitchen. After having a cup of hot water, which he referred to as weak coffee, he ate his usual Cream of Wheat and figs with peaches on the side. After so many months without eating, Dad’s taste for coffee had not yet returned. I tried to get him to try drinking it with cream, but he would drink only black coffee or water.

normalcyCross2At 9:00 A.M., Dad told Dianne that he didn’t feel well, and wheeled himself back to the bedroom and napped until 10:00 A.M., waking once to use the suction wand. After waking, with some assistance from Dianne, Dad got into Mom’s Chrysler LeBaron so that he could identify a sound that she had been hearing. I can only imagine how difficult it was for him to get out of that car. Like many sports cars, the LeBaron is low to the ground, which makes exiting it difficult.

Mom, Dad, and Dianne ate lunch at 12:30 P.M., but I was unable to break away from work to join them. I was able to stop work for a few minutes at 1:30 P.M. when Janet stopped by for Dad’s occupational therapy session. As soon as Janet left, I followed Mom and Dad in Dad’s car to a repair shop, where they left it. When we returned home, Mom and I used a collection of patches to cover Dad’s dialysis ports so that he could take a shower without exposing his dialysis catheter to moisture. We taped him up so well that I was concerned that the patches wouldn’t come off without pulling on the catheter. I’d be glad when he could have the catheter removed. The catheter provided an infection entrance ramp to his heart. When he was finished with his shower, Dianne replaced Dad’s g-tube stoma dressing and trimmed his toenails.

normalcyCross4While Dad got a pedicure and then took a nap, I worked, but he and I joined Mom and Dianne at 5:00 P.M. for happy hour. After an early dinner, we played Oh Hell, and Mom won. By 7:30 P.M., Dad was in bed and was waiting for Mom and me to administer his nighttime meds and set up the tube feed with two cans of Nepro. When Dad returned from the hospital this past September, I had insulated Mom from all of the caregiving activities. When my parents decided that they could get by without the aides, my mother had agreed to assume some of the caregiving activities. She now seemed to be a bit overwhelmed by the level of care that Dad still required.

February 6. At 2:30 A.M., the alarm on the Kangaroo pump woke Dianne, but the high-pitched alarm didn’t phase Dad, and he continued to sleep soundly. Although I was grateful for my dog-like hearing, there were times when I wished that I could sleep through these alarms. Dianne added the third can of Nepro to the tube-feed bag and returned to bed to sleep for 90 minutes.

I had to drive south to Houston today and then to north Conroe to celebrate a friend’s 60th birthday. I had forgotten to set my alarm but was awakened by the sound of Dad and Dianne talking. Dad got dressed and wheeled himself to the kitchen for his Cream of Wheat breakfast. By 6:00 A.M., Dianne and Dad were on the HOP bus. When they pulled out of the driveway, I ate breakfast and then left for Houston.

normalcyCross1A couple of hours later, I stopped at the Buc-ee’s near Waller and met Stan, who was en route to Temple. I arrived at my home in Houston at 10:00 A.M. I dropped off some clothes, gathered some others, and changed for the party in Conroe. The seasons were changing, and periodically I needed to swap out portions of my wardrobe.

Back in Temple, Dad had required the removal of only 1200 ml of fluid during dialysis, which is a minimal amount. Not only did Dad finish early but he and Dianne were also able to board a HOP bus as soon as they exited the clinic, enabling them to return home at 11:02 A.M.—an all-time record. On most dialysis days, Dad returned home just in time for lunch. Because they were home so early today, they decided to sit in the sunroom to rest and visit. Dad had barely sat down when Stan arrived. After visiting for a few minutes, Mom prepared them grilled cheese sandwiches for lunch.

Dad needed a nap, but because Stan was here, he was adamant that he wanted to wake up by 2:30 P.M. Shortly after he woke up, he and Stan drove to Lowe’s. Using his walker, Dad walked from the parking lot to the front door of the store where he was greeted by Lowe’s employees who showed him to a motorized wheelchair. I would have thought that Dad would have objected to using it, but he took to it like a duck to water. They guys purchased their supplies, and then Dad used his walker to return to the car.

pamCakeI had enjoyed seeing some of my dearest friends at the party in Conroe, but I had to leave the party at 3:15 P.M. and drive to Temple. I arrived at my parents’ home just in time for dinner. Mom fixed a nice dinner of roast beef and mashed potatoes, and we enjoyed King Cake for dessert.

After dinner, the five of us played Oh Hell, and I won by one point! At 8:00 P.M., Dad wheeled himself to the bedroom to start his nighttime routine. As Mom finished her new nighttime duties, Dad was drifting off to sleep at 9:00 P.M.

February 7. Dad had another great night’s sleep. Dianne woke up shortly before 3:00 A.M. to add a can of Nepro to the tube feed bag. Dad woke up at 6:00 A.M. and wanted to get up, but Dianne told him that he had to stay in bed until the Nepro was gone. She told him to sleep for another 30 minutes.  When Dad woke up again at 6:40 A.M., the Nepro was gone, and he was eager to get up. Dianne unplugged him from the pump and helped him out of bed. He then got dressed and wheeled himself to the kitchen for his daily cup of hot water.

normalcyCross4The five of us ate breakfast together. For the past 58 years, Mom has baked a special bread for Christmas. Because he could not swallow at Christmastime, Dad could not participate in our traditional breakfast. Believing that Dad would be able to eat again someday, Mom had frozen a loaf of the bread that she had baked this past Christmas, and today we toasted it for breakfast. To mimic our traditional breakfast, she served it with eggs and bacon, making the meal seem like a second Christmas breakfast.

While Mom and I were getting ready for church, Stan and Dad played a couple of games of cribbage. While we were gone, Dad and Stan went outside for a walk around the backyard. It was cool and windy, so they didn’t stay outside for more than a few minutes.

When Mom and I returned from church, the five of us ate lunch. After lunch, Stan and I moved the twin bed that Mom had been using into a guest room, swapping it for the inflatable bed that had been there. Starting tonight, Dianne would sleep in the guest room and Mom would sleep in the master bedroom. I feared that, like the aides, Mom would not enjoy too many restful nights, but we had to start transitioning to our new normal.

Shortly after Stan and I rearranged furniture, he had to return to Houston. Shortly after he left, Mom, Dad, and I drove to Bob Mills, a local furniture store, to look at beds. Mom had donated their king-size bed to charity a couple of days before Dad was discharged from the hospital. Now that the aide service would be ending soon, we planned to return the hospital bed to American HomePatient, and my parents needed a new bed. Because Dad was not supposed to lie down flat on the bed, my parents wanted a split king-size bed so that he could elevate his head. We looked at few beds and made notes of prices for more comparative shopping.

normalcyCross2We returned home shortly before happy hour, and after dinner, we watched the Super Bowl game while playing Oh Hell. At 7:30 P.M., Mom started working with Dad on his bedtime routine. She was a bit nervous, so I was glad that we started now while the aides were still here. I couldn’t blame her for being nervous; I was a nervous wreck for the first two weeks that Dad was home. Heck, I was still nervous. I was ready for bed at 8:30 P.M., but Mom and Dianne returned to the sunroom to watch the game, but neither of them could stay awake until the end. My parents are fans of the Broncos, who were winning when Mom and Dianne turned off the television.

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.