The power outage, the EMS, and other things

October 23, 2015. I was able to get in a couple of hours of work before Dad and Michell woke up at 6:00 A.M. I took a short break from work to administer Dad’s morning meds and trach care. Shortly after 8:00 A.M., I was meeting with Manisha, one of my Indian co-workers, when we lost power. It took several seconds for the seriousness of the situation to occur to me. Until a few weeks ago, a power outage was an inconvenience worthy of a fine whine, but now with our dependency on the concentrator and nebulizer for oxygen, electricity was critical for Dad. I called Oncor Energy, and they predicted that power to the area would be restored by 9:30 A.M. I checked our supply of oxygen tanks and called American HomePatient to request an emergency shipment of oxygen tanks. I called Oncor Energy again at 9:00 A.M., and according to the helpful recording, they could not predict when power would be restored; however, crews were assessing the problem. Power to the neighborhood was finally restored around 10:30 A.M. The emergency order of oxygen proved to be unnecessary, but I decided that I would prefer to have an ample supply of tanks on hand rather than risk running out. Dad seemed pretty unaffected by the outage and napped through most of it. During the outage, Michell checked his oxygen saturation level a few times, and it stayed between 97-99%, which was great. The only deficiency caused by the outage was the lack of moisture from the nebulizer to Dad’s lungs.

Tracy, the home care nurse, stopped by around 11:30 A.M. She said that other than his bedsore, he seemed to be doing fine. However, she thought that if anything, Dad’s bedsore was getting worse. I told her that we had an appointment with a wound care specialist in four days. About 90 minutes after Tracy left, Janet arrived for Dad’s occupational therapy session. As usual, Janet and Dad talked nonstop during their session. As she left, she told me that she thought that Dad was making some progress.

Dad complained about all of his tubes and wanted to know when he could get rid of them. I explained to him that it took him five months to get into this condition and it would probably take another five months for him to get better. Evidently, his expectations were significantly different from mine, and he gave me a look that broke my heart. I explained that we were doing everything that we could to ensure success on all fronts, which was why we had the two therapists working with him.

I later texted Adan to see if I had given Dad the correct information. Adan called me, and we had a long talk about Dad’s progress. During our discussion, he said that he thought that my estimate was far too optimistic and that Dad was probably looking at something along the lines of a 10-month recovery. He also said that the trach might be one of the last things to go. Adan also said that we could start the swallow therapy now if he had an order from a pulmonary specialist.

The news that Adan thought that we were ready to start swallow therapy was huge. Less than a month ago, he had told me that because of his chronic aspiration, Dad would not receive swallow therapy. I had implored him to give Dad a chance to fail and not just write him off as a lost cause. After much discussion, Adan had finally agreed to try swallow therapy after Dad regained some of his strength.

We swallow all day long. It seemed like such a simple thing that I had not realized what an intricate process it is. I would later learn that this seemingly simple process is achieved through the careful orchestration of some 80 muscles. According to Adan, simply regaining some of his strength would improve Dad’s chances of success. I felt better after our talk and thanked our lucky stars that Adan had moved from his position as a speech pathologist at the CCH to his current position as the supervisor of rehab services at Scott & White Home Care.

Around 3:00 P.M., I received a call from Brian at Scott &White EMS. He informed me that according to the notes provided to him by his EMTs, Dad could be transported to dialysis on a wheelchair and not a stretcher; therefore, they would start charging us $80 round trip. I explained that it was his EMTs who asked us to wheel Dad outside so that they wouldn’t have to bring the gurney into the house. Furthermore, I told him that although Dad might be able to make the trip there, he was not strong enough for the return trip. Brian said that he would contact the dialysis center to verify my assessment. He called back a little later and said that Scott & White EMS would provide wheelchair transport to dialysis and gurney transport for the return trip, which meant that we would be charged only $40 for each transport. Gurney transport was covered by Medicare, but wheelchair transport was not. Every day it was another nickel, dime, or $40 that we had to shell out to someone.

While Brian and I were discussing the logistics of this arrangement, I texted Sue, the nurse practitioner at the Scott & White dialysis center, and asked if I could call her.

hoyerLift
Hoyer lift and sling

When we spoke a few minutes later, she became annoyed and said that this decision was not for EMS to make and that the dialysis center would not accept Dad without a Hoyer sling. As I had learned earlier this week, Medicare won’t pay for the very inexpensive Hoyer sling unless you also get the more expensive Hoyer lift. Dr. Issac wrote an order for the Hoyer lift, but depending on when American HomePatient received the order and their inventory, we wouldn’t receive it until sometime next week.

I logged off from work at 5:30 P.M. and was good and ready for happy hour. Dad joined us until dinner was ready, at which time he returned to his room. The dishes were clear at 7:15 P.M. and we were ready for the nightly game of Oh Hell. I don’t remember who won, but we played a long game that didn’t end until 9:00 P.M.

October 24. It was dialysis day, and Michell, Dad, and I were up at 4:00 A.M. It was raining like a son-of-a-gun this morning. To enable Dad to be picked up by the EMTs, I had to clear a place in the garage where we could transfer Dad from the wheelchair to the gurney. We hadn’t needed this accommodation before because we had had good weather on dialysis days since he had been home. Dad resumed his normal routine for dialysis day and was ready to go at 5:45 A.M.  Because of the inclement weather, the ambulance was about 15 minutes late.

While Michell and Dad were at dialysis, Mom and I did some chores around the house. I also took this time to wade through some of Dad’s medical paperwork. When I sat down in the kitchen with a cup of coffee and Dad’s home care admittance book, I found a document that stated that his Medicare coverage for home health care might end this coming week. I called the on-call nurse to verify this information, and she said that according to her records, Dad was covered through the end of the year, but she advised me to call the office on Monday. I felt mildly relieved but would feel better after I contacted the office on Monday.

Mom and I went to the bank around 10:15 A.M. As we approached the front door of the bank, a HOP Paratransit bus dropped off a passenger. We asked the rider about the HOP service, and she gushed about the paratransit service and the HOP organization. In addition to the convenience and responsiveness of the service, its cost was very reasonable: just $2 per trip. We told her about Dad’s situation, and she encouraged us to apply for the paratransit service.

Mom and I had other errands to run, but the trip to the bank took longer than we had anticipated. We thought that we should go home now to ensure that we were there when Dad arrived home from dialysis. Shortly after we arrived home, Stan arrived from Houston. When we hadn’t heard from Michell and Dad by 12:30 P.M., I texted Michell, and she replied that they were still waiting for the ambulance. Rainy weather often results in car accidents, and accidents take precedence over transport services. There was nothing that I could do for Dad, but I had Stan drive me to the dialysis center so that we could bring Michell home. I planned to stay with Dad until the ambulance arrived, but as Stan and I arrived at the dialysis center, Dad’s ambulance also arrived. Michell said that she would stay with Dad, so Stan and I returned home. Michell and Dad eventually arrived home at 1:30 P.M.

After his seven-hour trip to dialysis, Dad was exhausted, and from the sound of his breathing, it seemed that his trach needed changing. I spent the next few minutes suctioning him and then left him to sleep for a few hours. He started coughing badly later in the afternoon, and I decided that I couldn’t postpone his trach change any longer. Dad seemed to breathe a little better after the trach change, but he still had a lot of secretions, and he didn’t want to suction himself, so I had to suction him again.

We played a game of Oh Hell after dinner, and we started to put Dad to bed around 9:00 P.M. His oxygen saturation was 98%, which relieved me a little, and he fell asleep almost immediately.

Around midnight, Dad’s coughing woke me and I decided to go downstairs to see if I could encourage him to suction himself. He steadfastly refused to hold the Yankauer wand, and his oxygen saturation readings were erratic. I suctioned him for a few minutes and went back to bed when his coughing seemed to subside.

October 25. I woke up at 6:09 A.M. and I didn’t hear any noise from Dad coming through the baby monitor. Convinced that something bad had happened to him, I bolted up out of bed and ran downstairs to his room to see if he was all right. Thankfully, he was just sleeping, albeit quietly. I returned to my room and changed into my scrubs.

I returned to Dad’s room 45 minutes later and found that he was up and washing his face, but he seemed a bit disoriented. I administered his morning meds and trach care and Michell took over for the remainder of his morning ritual.

I left Dad’s room and went to the kitchen. Mom had started the coffee maker a short time earlier, and I was ready for a cup of coffee. Michell wandered into the kitchen and mentioned that Dad had told her that he wanted to stop dialysis. I knew that he understood the implications of stopping dialysis. I hoped that Dad was experiencing a temporary funk, but I needed to watch him and be supportive. While Michell was with Dad in the bedroom, Stan, Mom, and I had breakfast. Dad finally appeared dressed for the day at 9:15 A.M.

While Mom and I attended church, Stan and Dad tried to fix the VCR. When we returned from church, Dad was napping. Michell told us that at 11:30 A.M. he had wanted to lie down for a few minutes, and he fell asleep as soon as his head hit the pillow. Stan told me that he needed to leave early today, but he wasn’t ready to leave until 2:00 P.M. Before he left, I woke Dad so that he could say goodbye to Stan. Dad was constantly surrounded by female caregivers. Stan was the welcome break from all of the female hovering, and Dad enjoyed their time together on weekends. Shortly after Stan left, Michell was able to convince Dad to do some of his physical therapy exercises.

After dinner, Michell and I asked Dad if he wanted to play cards. He said no, that he was just a “hindrance.” I told him that I was really asking if we were going to play cards this evening because we wouldn’t be playing cards without him. We played a long game tonight, and while he was pretty much exhausted by the end of the game, he wasn’t too tired to beat us again.

We started on our bedtime routine at 8:30 P.M., and I was able to call Stan shortly after 9:00 P.M. I was distressed about Dad’s apparent depressed mood, which was uncharacteristic of him. Stan said that he could understand how Dad’s cup could look a bit less than half full from his perspective. Perhaps Stan was correct.

If I thought that I had been unprepared to be a caregiver for Dad’s physical health, I was totally unprepared to handle depression.

 

Our homecare dance was three steps forward and two steps backward

October 14, 2015. Dad’s trach was pretty clogged up with thick secretions this morning and I had to break down the secretions with saline to clear his trach. When I was finished suctioning him, Gale and I got him into the wheelchair and he wheeled himself into the bathroom, where he proceeded to cough up quite a bit of mucus into the sink.

At 9:15 A.M., the nurse arrived with a young woman in tow, whom she introduced as a nursing student. Before proceeding with Dad’s exam, she asked if we minded having another person in the room. We had become accustomed to nursing students during Dad’s stay at the CCH, so we told her that we didn’t mind. His vitals were good, including his oxygen saturation, but his poor bedsores hadn’t improved during the past week.

familyTreeAfter lunch, Dad had Mom and Gale take him outside to check on the hoses in the backyard. My parents’ acre lot had quite a few young trees. Dad had set up permanent irrigation to some of the trees, but his system required that some hoses be moved among the trees. Diane had been his ready assistant a few days ago, and now it was Gale’s turn. Fortunately, Gale loved being outdoors.

Later, Dad announced that he wanted to go to the garage to see if he could get into the car. I told him that this was a difficult transfer and that he wasn’t ready for it. His problem, or maybe it was my problem, was that everyone kept telling him how good he looked and how well he was doing, and he took their comments just a bit too much to heart. We both stood our ground and argued about it for a few minutes. I finally told him that we would speak with the physical therapist when she arrived later today to see what she said, and he grudgingly relented.

wheelchairIn addition to being concerned about all of the time that Dad was off of the humidified air, I was also concerned about the considerable amount of time he spent disconnected from his tube feed. The tube feed was available to him only in his room because his wheelchair had no IV pole to which to attach the Kangaroo pump that operated the feed. I suspected that he was receiving less than half of the protein and other nutrients that he needed. If I could attach the Kangaroo pump to the wheelchair, then he could receive nutrition all the time as he moved around the house, property, and elsewhere, except during dialysis. When I had called American HomePatient earlier this morning to see if I could get an IV pole for the wheelchair, the person who took my call said that she would have someone get back to me. Timothy from American HomePatient called this afternoon to see if we would be at home to receive our order of oxygen tanks and the IV pole. When he delivered our order, he also connected the IV pole to the chair.

Brenda, the physical therapist aide, arrived at 11:15 A.M. When we asked her if she thought that Dad could negotiate a wheelchair-to-car transfer, she said that she would have to speak with Kathleen, the physical therapist, to see if we could make that transfer one of his goals. In the meantime, he should not attempt it. She added that until Dad was proficient at this type of transfer, he could have a real problem if he could make the transfer at home when he was rested, but then not be able to handle the transfer when he wanted to come home. He wasn’t thrilled with her response, but he agreed to see what Kathleen had to say. He later claimed that the therapists were trying to hold him back. I explained that they had a plan for his recovery and that he had to be a bit more patient. Dad and I weren’t famous for our patience, so this was a big request.

noPCPDuring the past few days, I had been discovering some of the flaws in the homecare system and Medicare. When the nurse encouraged us to take Dad to a wound care specialist, I called the nurse practitioner at the CCH for the referral and was told that Dad was no longer their patient and that we would have to get all of our referrals from his primary care physician (PCP). Dad had been hospitalized since May and hadn’t seen his PCP in almost two years. As a matter of fact, we had to cancel an appointment with her during his hospitalization. When I called the office of Dr. Sarla Patil, his PCP, and explained our predicament to her nurse, she said that the doctor could not provide any referrals or refill his prescriptions unless he came to her office. She went on to say that had Dr. Patil been the referring physician for homecare, then they could help, which was a nonhelpful and ridiculous comment. When I explained that he wasn’t ambulatory, she apologized and said that there was nothing that she could do. In desperation, I called the office of the doctor who had saved his life, Dr. Randall Smith. I spoke with his nurse, Christine, and explained Dad’s relationship to the doctor and that we needed to see a wound care specialist. A couple of hours later, a clerk at the wound care center called to schedule an appointment for Dad at 2:30 P.M. on October 27, almost two weeks from now. Dr. Smith wasn’t Dad’s physician—just a compassionate health provider. Thank goodness for Dr. Smith.

I finished work around 5:00 P.M. and thought that I should suction Dad before our happy hour. Once again, I had to use saline to loosen the thickened secretions at the bottom of his trach. As much as I hated to do this at night when I was tired, I decided that I should change his trach after dinner.

October is a delightful month in central Texas, and we decided to enjoy the wonderful weather by taking happy hour to the patio. We shared some family stories with Gale and she told us stories about her family and grandchildren.

After dinner, Dad was ready to play cards, but I wanted to change his trach before I became too tired. After I set up my two TV trays and trach-changing kit, Gale and Dad returned to the bedroom, and I changed out the trach. Very much like the last time, the interior of this trach tube was lined with hardened secretions and I had to leave it soaking in saline while we played cards. The more time that he was away from the humidified air, the more likely it was that he would narrow his airway with hardened secretions. I showed him the buildup in the trach, but I don’t think that he connected the cause and effect. I don’t know if it was because of the extra air that he received from his new trach, but Dad won at Oh Hell again tonight.

When the game was over, I finished cleaning up the trach while Gale helped Dad get ready for bed. Because I had just changed the trach, I skipped the nightly trach care and just administered his meds while Gale got ready for bed.

I was finally able to call Stan shortly before 9:15 P.M. to give him an update on the day. He then told me that he had decided to stay home this coming weekend and take his on-call rotation for this week, which required that he stay close to home. I was very disappointed, but he assured me that if he took on this responsibility now, he wouldn’t have to miss any more weekends with us for the remainder of the year.

YankerFamilyOctober 15. At 1:30 A.M., I was awakened by the sound of coughing coming through the baby monitor. I kept hoping that Dad would use the Yankauer wand, but at 2:00 A.M., I went downstairs to suction him. When I was finished, he was ready to get up and start preparing for dialysis. I told him that I needed to get some more sleep before I started work. Even when he was in his most delirious state, I could reason with him when I played the work card. He didn’t want to do anything that would jeopardize my career or my ability to work. He agreed to stay in bed and I went back upstairs and collapsed on the bed. My iPhone alarm woke me at 3:30 A.M., but I couldn’t get myself out of the bed for another 15 minutes. I donned my scrubs (I now had four sets.) and went back downstairs to work until I had to wake up the residents of the master bedroom. At 4:15 A.M., I woke Dad and Gale and grabbed another cup of coffee for myself.

Dad seemed to lack the energy that he had possessed a couple of hours earlier and was moving a little slow. Even with his lower energy level, he required only a little assistance from Gale to transfer from the bed to the wheelchair, although he still was not strong enough to stand and walk. After Dad was dressed for dialysis, I suctioned him and administered his Midodrine, which was the only drug that he took before dialysis. Midodrine elevated his blood pressure, and the aide always took a diluted dosage that she administered in his G-tube after two hours of dialysis. If his blood pressure dropped too much during dialysis, he might need to go to the emergency room, a trip that we wanted to avoid at all costs.

At 5:45 A.M., Dad and Gale were ready to go, and the ambulance from Scott & White arrived on time 25 minutes later. A couple of hours after Dad’s dialysis session started, I received a call on my mobile phone. My heart stopped when I saw that the caller was Gale. I was relieved when she said that the nurses were administering flu shots today and she wanted to check with me before he received one. I told her that he should get the flu shot, and then I sat for a couple of moments while I waited for my heart rate to return to normal. Although Dad had been doing well while he was at home, he was still very ill and faced numerous challenges. I felt like I was holding my breath whenever he wasn’t within my sight, and these phone calls from the dialysis center were almost as bad as the nighttime calls had been when Dad was in the hospital.

Dad’s dialysis session went well and he and Gale were back home by noon. I stopped work to take the wheelchair outside for Dad’s transfer from the gurney, but after we came indoors, Gale took over and got Dad on the bed and hooked up to his humidified air and tube feed. When Dad drifted off to sleep, Gale, Mom, and I took a short lunch break. When Gale saw that Dad was still sleeping, she seized the opportunity to rest on her bed for what she called a long minute. By 2:00 P.M., Dad was awake and ready to go outside. Gale removed the Kangaroo pump from the IV pole in the bedroom and attached it to the IV pole that was now installed on the wheelchair. Although we still had to rely on the trachBib2trach bib moistened with sterile water to provide some moisture to his lungs, he no longer was deprived of tube feed when he left the bedroom. Dad had to be more careful as he navigated the hallways to ensure that the pump didn’t hit the wall or knock photographs off of the wall.

Shortly before dinner at 6:30 P.M., I suctioned Dad again and let him get a bit more rest until it was time to play a cutthroat game of Oh Hell. After he won again tonight, the second night in a row, we were suspecting that these naps were giving him an unfair advantage over the weary.

October 16. At 2:00 A.M., I could hear some talking through the baby monitor, but I couldn’t make out what they were saying. When I got out of bed and moved down the stairs, I could hear that Gale was assisting Dad to the bedside commode in the bathroom. They didn’t need me, so I retreated to my bedroom. When I got up at 3:30 A.M. to work, both Gale and Dad were sleeping soundly. At 4:30 A.M., I was walking with a cup of coffee from the kitchen and I heard Dad coughing. I woke the two sleeping beauties and suctioned Dad. They were back to sleep before I sat down in front of my computer with another cup of coffee.

By 7:45 A.M., Dad was in his wheelchair in front of the bathroom sink. All Gale had to do was open the doors under the sink and place the towel so that he didn’t injure his shins. She was now able to straighten up the room and make the bed while he shaved and brushed his teeth. I took a break from work around 9:00 A.M. to administer trach care and morning meds. As usual, he was all dressed and looking spiffy.

When I was finished with him, he rolled himself into the kitchen and said, “Mary, could you fix me a soft-boiled egg?” Mom and I didn’t say anything for a moment, and it was all that I could do to hold myself together. When I explained to him that he couldn’t eat anything, he couldn’t believe that he couldn’t have just an egg. I explained that at some point he would receive swallow therapy, and then hoped to God that he would.

About an hour later, the nurse arrived to check his vitals and see how his bedsore was healing. She thought that it was healing nicely. Doesn’t that just figure? As soon as you get an appointment with a specialist, you start getting better. Shortly after the nurse left, Janet, the occupational therapist, arrived. I had always thought that occupational therapists worked with patients to help them learn how to take care of themselves. Janet spent most of her time working on Dad’s core muscles. Like Kathleen, the physical therapist, Janet was also a New Yorker, and she and Dad could banter like nobody’s business. I don’t know who enjoyed it more, Janet or my father. I could hear them from my parents’ office, and sometimes I had to just shake my head and laugh.

After Janet left, Dad was a little tired and needed a rest. He retired to his room for a nap at 12:30 P.M. and slept for a little over an hour. At 5:00 P.M., our good friends from across the street stopped by for happy hour. Once again, the weather was wonderful, so we all sat out on the patio. This hour with Jim and Sharon was the closest to normal that I had felt in a long time.

When the neighbors left, Dad rested while Mom, Gale, and I ate dinner. After dinner was cleared and the kitchen was cleaned, Dad came back and beat us again at cards. The three losers were seriously considering putting a stop to his evening naps if he kept whupping us at cards. Shortly after 8:30 P.M., Dad, Gale, and I started our nightly ritual and Mom prepared the coffee for the following morning—probably the most important nightly task.

It had been a long day, and by the time that Dad and Gale were in bed and I called Stan, I felt as if I had been awake forever. Although tomorrow was Saturday, it was dialysis day, which meant an early start for our household. I hoped that Dad would sleep until 4:30 A.M.

Another trip to the emergency room

October 5, 2015. At 4:00 A.M., Dad was ready to get up. In the past five days, he had progressed to handling most of his personal care. To protect the fragile skin on his shins, Gale would open the cabinet doors under the bathroom sink and place a towel over the sharp edge. Dad would then wheel himself up to the sink to wash his face and brush his teeth. He didn’t like the electric shaver much, but every couple of days he used it to shave. He hadn’t regained all of his manual dexterity, so that discouraged him from using a razor. When he finished cleaning up, he returned to the bedroom, got hooked up to the tube feed and humidified air, and read the newspaper. At the start of Dad’s sixth day home, we felt that we were on the verge of a repeatable routine.

Dad told me that he was having strange dreams. For me, hearing him talk about strange dreams seemed like a major milestone. While he was in the CCH and receiving daily cocktails of antipsychotics, he had had many wild dreams. Unfortunately, he had believed that his dreams were his reality. Now, we were ridding his body of those drugs and he was realizing that his dreams were dreams—it seemed like a turning point.

Two hours later, Dad was ready to lie down and take a nap, which meant that Gale could nap too. I guess being awake all night was starting to take its toll on him. I know that it was taking a toll on me. Shortly before 9:00 A.M., I took a short break from work and administered his morning meds and trach care. In the past few days, my time had improved from 45 minutes to 15 minutes.

For all intents and purposes, Dad’s vital signs were pretty good, but his oxygen saturation had been hovering in the low 90s. I would have preferred something over 95%. In the hospital, the monitors alarmed when his oxygen saturation dropped below 90%. The nurse was due to return today, so I made a note on my iPhone to ask her about it. The nurses weren’t here more than a few minutes during each visit, but they were a lifeline that I had quickly come to rely on.

At 2:00 P.M., Dad had his first physical therapy session. The therapist aide had Dad wheel himself into the bathroom and lock his wheelchair in front of the sink. She then told him to hold onto the sink and stand, which he did, but with assistance. She then had him get back on the bed for some other exercises. To the lay people in the house, it seemed that he had a great session. I hoped that when he harbored thoughts of getting out of bed in the middle of the night, he might remember how difficult it was for him to stand. I could dream.

He was a little tired after his physical therapy session, but he had barely put his head on the pillow for a nap when the doorbell rang. Paula, the home care nurse, stopped by to check his vitals and bed sores and said that he looked great. She didn’t have any concerns about his oxygenation.

trachCareKitAfter Paula left, Dad napped for about 2-1/2 hours. By the time that he woke up, Mom, Gale, and I had eaten dinner. It had now been a week since I had changed Dad’s trach. I wanted to change it again before bedtime and before Gale ended her week with us. During normal trach care, I’d set up a TV tray next to the bed and lay out the contents of the kit. For the trach change, I grabbed another TV tray and set up the changing kit. I mentally ran through the changing routine a couple of times, took a breath, and got started. After donning the gloves, I attached the trach collar to the new trach, applied the lubricant to the trach, loosened the obturator and told Gale to make sure that I pulled it out after I inserted the trach. Trach tubes are very flexible, and the obturator provides the stiffness necessary to insert the trach. If I didn’t remove the obturator, then Dad couldn’t breathe. Now that the new trachTubetrach tube was ready, I removed the ties on his trach collar and then removed the trach from his throat, placed it on one of the TV trays, picked up the sterile trach tube, and inserted it. Because I was holding my breath and counting in my head, I knew that I had made the change in less than 8 seconds. Gale reminded me to remove the obturator, and Dad coughed up a huge wad of secretion, which I had been told was a good thing because it meant that the trach tube was properly placed.

Now that the nail-biting part of the process was over, I attached his trach collar, replaced his stoma dressing, and replaced his beloved speaking valve. I wasn’t finished until I had cleaned and repackaged the trach that I had just removed. The cleaning process took me longer here than it had at the CCH. Because Dad had spent so much time off of the humidified air, some of his secretions had accumulated and hardened in his trach, narrowing its diameter, and therefore the diameter of his airway. Besides that, some dry air was getting into his lungs. I had to soak the trach with the dried secretions in saline for 30 minutes before I could easily clean it. In any case, my first solo trach change was history.

Our family has a favorite card game known as Oh Hell, and now that he had his new trach, Dad was ready to play. He hadn’t regained enough dexterity to shuffle or deal the cards, but that didn’t keep him from winning. Maybe it was a coincidence, but it seemed that winning at cards had a positive effect on him. He woke up only a couple of times during the night and tried to get out of bed only once.

tieredcakeOctober 6. Today was a special day because it was Dad’s 87th birthday. Just two weeks earlier, I had feared that he wouldn’t live to see the day. It was unfortunate that he would have to spend four hours of his birthday in dialysis. I had once envisioned a special cake on his birthday, but we wouldn’t have birthday cake until he could swallow. We had no rigid rules about celebrating birthdays and other events on the day on which they occurred; we could celebrate and have cake anytime.

Dad slept until 5:15 A.M., which seemed like a gift for me. He and Gale ran through their morning routine, and I administered his Midodrine and trach care. The morning seemed to be starting perfectly, and the EMS transport arrived at 6:10 A.M., exactly on time.

The day that Dad was discharged from the CCH, his dialysis catheter was changed out. When he returned to the CCH from the Interventional Radiology (IR) department at Memorial, the nurses and the doctor had had a difficult time stopping the bleeding, and Dr. Anderson eventually cauterized it. For fear of restarting the bleeding, the RNs at the dialysis center had put off changing his dressing. Because it had now been a week since his dressing was last changed, they wanted to change it today.

Dad and Gale returned home from dialysis at noon, which meant that they hadn’t had to wait very long for a ride. Within 15 minutes of their arrival home, I had administered hist trach care and midday meds.

The aides worked seven on and seven off, and we were expecting Gale’s replacement, Amanda. She arrived in the early afternoon, shortly before 2:00 P.M. While Gale oriented her to the house and Dad’s routine and requirements, I noticed that the front of Dad’s shirt was soaked with blood. I called my home care lifeline, and once again, was advised to call 911.

This was the second time in six days that S&W ambulances blared their sirens down our quiet street. The ambulance arrived at the S&W emergency department (ED) with Dad and me at 2:45 P.M. This trip to the ED was not very stressful because we understood the problem and I suspected that he would have his bleeding port repaired by someone in the IR department. I was pleased that during her assessment of Dad, the nurse noted that he was oriented to person, place, and time, an assessment that he had not achieved in more than 10 weeks. The nurse also thought that he appeared to be well nourished. I was so antsy about properly caring for him that I devoured any morsel of positive feedback. The ED doctor stopped by for a moment to introduce herself and quickly introduced us to Dr. Victoria Klovenski, the resident who would oversee Dad’s care.

As I had suspected, Dad had to have his dialysis port fixed in the IR department. This department doesn’t do a big walk-in business and the providers’ time is scheduled in advance, so Dad and I had to cool our jets for about an hour before they could squeeze him into their already-full schedule. Dr. Bradley Dollar, the doctor who changed Dad’s dialysis port just a week earlier, was working in the IR department when Dad arrived. When he had finished with the procedure to repair the port site, he gave me an accusatory look and some attitude when he asked me what had happened to Dad’s port. I assured him that it was Dr. Anderson, at the CCH, not I, who had botched his handiwork. After returning to the ED and Dr. Klovenski, we signed our paperwork, paid our bill, and waited for EMS transport home.

By the time that Dad and I had returned home, it was 7:20 P.M. As Amanda and I were putting Dad to bed, she asked if it was OK for her to take her shower now. I suspect that the look that I gave her perfectly reflected the way that I felt about her request. Hell’s bells, she had been sitting around doing nothing for over five hours. How dirty could a person get? She backed off and told me that just this once she would skip her nighttime shower. She added, “I’m a big girl and I need two showers a day.” Since Dad had returned home, daily showers had become a thing of the past. I looked forward to my Sunday shower and a shower while he was at dialysis. Anything more than that was pure decadence.

Mom, Amanda, and I ate dinner stylishly late and then Amanda watched me administer his nighttime meds and start his tube feed. He had been without any nutrition or liquid since 5:15 A.M. Fortunately, during most of his five hours at the hospital, I was able to get oxygen and an aerosol mist for his trach. I was finished with Dad’s bedtime routine by 8:30 P.M.

Dad didn’t play favorites with the aides and Amada was properly initiated into service. Dad was awake at 9:15 P.M. and 10:15 P.M., and at midnight, he tried to get out of bed. He finally fell asleep at 1:00 A.M., but he woke up at 4:00 A.M., ready to start the day. Amanda wasn’t alone in her fun. Every time he roused her or tried to escape the confines of his bed, he woke me too.

October 7. Amanda had been trying to get Dad cleaned up and ready for the day, but Dad was irritable and kept trying to get out of bed. She eventually prevailed, and I took a short break from work at 8:00 A.M. to administer his morning meds and trach care. Shortly after I was finished, he was resting comfortably in his wheelchair reading the newspaper. Around 10:00 A.M., Dad started getting sleepy, so Amanda helped him back into bed so that he could nap. Amanda took advantage of this respite and snagged herself a 90-minute nap.

I don’t know why, but Mom and I were not bonding with Amanda. We got off on the wrong foot, and couldn’t seem to find the right foot. We didn’t say anything to Amanda because it wasn’t about Mom and me; it was about Dad. Gale called me to see how Dad was doing. She happened to mention that in Amanda’s previous position, she pretty much ruled the house and the schedules. Gale suspected that Amanda might be having a difficult time adjusting to such a demanding position. When it came to aides, I hoped that Amanda was the exception and not Gale.

When Dad woke up at 11:30 A.M., he was ready to wheel himself around the house. He had forgotten many of the details about the house that he had designed and built just 11 years earlier. He was an expert at wheeling himself around corners. The walls of the house were white and there were no signs of wheel marks on the walls or baseboards, except for the places where I tried to help him.

After lunch, our friend, Pastor Don, stopped by to visit with Dad. It was great to see him again. You expect pastors to stop by the hospital, but it is so easy for patients and caregivers to become isolated after the patients return home. Dad was not ambulatory, and although we welcomed these visits, we were hesitant to ask people to come over. Truth be told, we were too busy to think about asking people to stop by.

Shortly before 2:30 P.M., the physical therapist aide arrived to administer Dad’s therapy. She brought with her a 3-inch-high egg-crate cushion sized to fit the seat of his wheelchair, which made sitting in the wheelchair immensely more comfortable. During his session, he spent most of his time doing bed exercises. Dad didn’t think that the exercises provided him with any benefit, and while he followed the therapist’s directions, he made side comments to entertain her.

Although the physical therapy sessions might not have been “doing anything” for him, he was pretty tired when the therapist left. She wasn’t out of the door for more than five minutes and he was sound asleep. I wondered if we could schedule her visits for midnight. Dad woke up from his nap shortly before the nurse arrived at 4:15 P.M. She thought that Dad was progressing pretty well, but that he should see a wound care specialist—something else to add to my to-do list.

After dinner, it was time for Amanda’s most critical test: could she, would she play Oh Hell with the family? At first, she said that she would spend the evening in her room, but Dad persisted, and after a few minutes of orientation, the game was on. I don’t recall who won, but the four of us shared an enjoyable evening.

What was interesting to me was the different relationships that Dad quickly developed with the two aides. Gale, who was in her 40s, was like a pal, and she was a big tease who could dish it out and take it as much as Dad. On the other hand, Dad seemed to take a real interest in Amanda’s future. She was very young, and Dad asked her about her experience and her plans and encouraged her to aim higher. I recall hearing him encourage her to go to nursing school.

In addition to our nighttime routine of trach care and meds, we had another routine of sorts: Dads attempts to get out of bed. On a good night, like tonight, he tried to get out of bed only once. Unlike the nurses at the CCH, we didn’t have the fancy bed alarm but had to rely on squeaky springs to wake us. I had to find a better alarm.

 

A bit of a rough start on our first day, but at least we’re home!

September 30, 2015. Usually, I woke up with the aid of an alarm—most recently, the alarm on my iPhone. Today marked the start of a new wake-up system: the baby monitor in Dad’s room. The good thing about it was that I could hear everything that happened in his room. The bad thing about the monitor was that I could hear everything that happened in his room. If the beds at Scott & White represented the Mercedes-Benz of hospital beds, Dad’s new bed was more like a beat-up jalopy. Not only was it operated with hand cranks, it squeaked whenever Dad moved, which I could hear clearly through the monitor. With the squeaking bed, the intermittent sound of the suctioning machine, and the constant drone of theeverflo-oxygen-concentrator-5-liter-b73 oxygen concentrator (oxygen generator), a constant cacophony of sounds emanated from the monitor. Gale had it worse, though. In addition to the noise, the oxygen concentrator and its nebulizer pumped out a lot of heat. Whenever she opened the windows to let in some cooler air, my now skinny and cold-natured father complained about being too cold. This room was the warmest and noisiest room in the neighborhood.

During Dad’s first day home, Gale and I struggled to establish a routine. I tried to create a schedule in Outlook, but his seemingly-regular schedule wasn’t regular enough to commit it to a calendar. Dad kept Gale and Mom busy with cleaning and laundry, while I kept a nervous eye on his respiratory needs. I felt tentative at best when it came to trach care and asked Gale to stand by during all of my trach care activities.

In addition to the equipment, American HomePatient (AHP) had delivered dozens of boxes of supplies, including trach care and trach changing kits, Nepro tube feed, tube feed bags, tubing, 4×4 gauze pads, and 4×4 splits. We had boxes stacked in the front entry, the garage, the laundry room, and the bedroom. We had tried to organize some of the supplies last night during the chaos of Dad’s homecoming activities, but I needed to take an inventory. I located a carton that contained trach changing kits but found them to be disappointing. I had hoped that I would have something similar to what the hospital used. Not only did each kit lack some of the accessories included with the hospital kits, the suction tube had a much smaller diameter. The tubing also lacked markers that were important in gauging how deep to extend the tubing down Dad’s trach. I tried using one of the kits and couldn’t suction any of Dad’s secretions. I tossed out the tubing and opened one of the kits that Angela, the respiratory therapist, had provided us yesterday.

trachCareKitI had just a limited supply of the trach kits from Angela, so I used the information on the packaging to search online for a provider. I found the kits at a company called Healthcare Supply Pros, and ordered two cases, each case containing 36 kits. The order set me back $130.00, but these kits would appreciably lower my aggravation and stress levels, so I felt that the expense was worth it. I just hoped that my order would arrive before I ran through my supply of appropriate kits. It was a shame that we had six cases of the trach care kits from AHP.

In addition to his meds, Dad needed the protein supplement, Beneprotein. I had only the few packages that we took from the hospital yesterday. After I ordered the trach care kits, I logged on to Amazon.com and ordered a case of it, which would last 25 days.

While I inventoried supplies and created spreadsheets of medications and schedules, Gale inventoried Dad’s skin tears, and found five of them scattered over his body.

Gale took frequent readings of Dad’s oxygen levels, pulse rate, and blood pressure. Early in the afternoon, his blood pressure reading seemed very low. I’m terrible at interpreting blood pressure readings, but while Dad was in the hospital, I became familiar with the mean arterial pressure (MAP), which the hospitalMonitormonitors used to trigger alarms for dangerous blood pressure readings. To calculate it, you multiply the systolic (top) number by two, add the product to the diastolic (bottom) number, and then divide by three. In the hospital, the monitor triggered a piercing alarm when the number dipped below 65 (or 60 during dialysis). I quickly performed the calculations, and his MAP was 42, which triggered my own internal alarm. We hadn’t been taking care of Dad for 24 hours and I suddenly felt like the failure that the medical experts thought we would be. In a panic, I called the Home Care office, gave them Dad’s blood pressure reading, and was instructed to call 911. The few minutes that it took for the ambulance to arrive seemed like an hour. When the EMTs arrived, they took Dad’s vitals and found them to be normal. They stayed for a few minutes and checked his blood pressure again. They told us that they could transport Dad to the hospital, but said us that if Dad was their relative, they’d keep him at home and call 911 again if we had more problems. We happily accepted their advice and thanked them as they left.

One thing that hadn’t changed with Dad’s move home: his propensity to slide down the bed. In addition to his sliding out of the bed, when he slid down the bed, he was no longer sitting at a 30-degree angle, which was one of our cardinal rules. Because of his risk of aspiration, whenever his incline fell below 30 degrees, we had to stop his tube feed. Whenever we repositioned him, we stopped the pump, used the draw sheet to pull him up in the bed, and then restarted the pump. He was too weak to reposition himself in the bed.

Getting Dad out of the bed and into the wheelchair was no less important at home than it had been at the CCH. Dad was pretty weak and it took both Gale and me to transfer him from the bed to the chair. When he was in the wheelchair, we kept him in the room connected to the concentrator and moisture. We could use the oxygen tanks if he left the room, but we’d have to tie wet trachBib2bibs around his trach to provide some moist air to his trach and lungs. AHP had suggested several other methods to keep his air supply moist when he was away from the nebulizer, but all of their suggestions required removal of the speaking valve, which was a nonstarter. Dad was able to sit in the wheelchair for almost two hours before he wanted to get back into the bed. He took a couple of cat naps and seemed to be resting well for the remainder of our first full day at home.

Mom, Gale, and I ate dinner in a couple of shifts, which made the hostess side of my mother crazy. She wanted all three of us to have a nice hot meal, but we couldn’t leave Dad unattended.

At 7:00 P.M., Gale had Dad dressed for bed and ready for me to suction his trach and administer his nighttime meds. She and I were exhausted and took turns getting ourselves ready for bed. Unfortunately, we were a lot sleepier than Dad, who, for all intents and purposes, stayed awake all night. Gale and I both tried to get some sleep, but Dad was restless and Gale employed the panic alarm on the baby monitor a couple of times to request my assistance, usually to reposition him in the bed and to suction him. More than once she woke to find his legs hanging out of the bottom of the bed.

October 1. After a night of naps, Gale and I were up at 4:00 A.M. to prepare Dad for dialysis. We moved him from the bed to the wheelchair, and Gale got him cleaned up and applied lotion to his dry and fragile skin. With some assistance from Mom, Gale found some clothes for Dad and got him dressed. He had lost so much weight since May that his clothes swallowed him. The ambulance arrived at 6:40 A.M., about 20 minutes late and at the time that he was to arrive at the dialysis center. Gale rode in the ambulance, and I followed them in my car. Fortunately, the dialysis center was less than five miles from my parents’ home, so we weren’t too late.

Dad had a reservation in the A bay at the dialysis center. Mom had visited with a charge nurse about a month earlier, but this was my first visit. I was overwhelmed by the size of this place. From what I could tell, they could dialyze about 200 people during each shift. As the aides and nurses moved Dad from the stretcher to a bed, I spoke with the nurse at the center who had just trained some of their techs to change out a trach. I had been told by the nurse practitioner at the CCH that Dad couldn’t be dialyzed at this facility because he couldn’t change out his trach. I was moved when I learned that they trained their personnel when they learned that Dad would be a patient. While it might have been true that the dialysis center didn’t have any trach patients, they had no problem with training their personnel to come to the aid of one. The nurse was relieved when I told him that Dad always traveled with an extra trach and all the supplies that would be needed to make the process easier for the tech and less painful for Dad. My minutes of experience with trachs made me an expert on the subject, especially when speaking with someone who knew about as much about trach care as me.

Because Dad would be dialyzed from a dialysis catheter, versus a fistula, only an RN could hook him up to the dialysis machine. To increase his blood pressure for the procedure, I had administered a couple of dissolved Midodrine pills in his PEG tube. His blood pressure usually dropped during dialysis, so at 9:00 A.M., Gale would administer another two Midodrine pills, which I had already dissolved in water. After seeing that Dad and Gale were OK, I went home.

Dad was finished with his session at 11:00 A.M., but he and Gale weren’t picked up by the EMTs until 12:15 P.M. We knew that transport services were a low priority for ambulances, but he had now been away from home for almost six hours, and he was still a pretty sick guy. When he and Gale returned home after the 20-minute trip, Dad was pretty weak. It was also past time for his meds and trach care.

After the EMTs navigated him and their stretcher through the house, Gale and I situated Dad back in bed and hoped that he’d sleep for an hour or two. According to Gale, Dad had not slept at all during dialysis and had talked non-stop most of his time there. Our friend, Sue, who was the nurse practitioner at the dialysis center, stopped by to visit with him and was also surprised by his non-stop talking. After being confined for so many months, I guess he was reacting to a sudden sense of freedom.

Becky Crabtree, the owner of One On One Personal Services, told us that she had business in the area this afternoon and that she planned to stop by to meet us. 70px-I-35.svgI-35, the interstate highway that is the primary route between Dallas and Temple, is notorious for bad accidents that shut down the freeway. Becky was a victim of such a shutdown and arrived about three hours late at 7:30 P.M. Following her arrival, Gale and I transferred Dad to his wheelchair and wheeled him out to our patio where the four of us visited with Becky for about 30 minutes.

pmSpeakingValveAt 8:30 P.M., Gale started preparing Dad for bed. After he was in bed, I administered the meds and trach care. While I was busy with Dad, Gale changed out the tube feed bags, which had to be changed every 24 hours. Dad hated to be without his speaking valve, so I broke with one of  Angela’s rules and left it in place during the night. If he needed help, we needed to be able to hear him. He complained when I removed the speaking valve during trach care. I knew that I’d never hear the end of it if I removed it overnight.

Gale and I were exhausted and it had been a full day for Dad. We hoped that Dad was just as tired and would sleep through the night.

Caregiver in training

September 26, 2015. I saw Angela, the respiratory therapist, a few minutes after I arrived at the CCH at 7:35 A.M. She said that after she set up a couple of more patients, she would return to Dad’s room to continue my training. Jennifer, the charge nurse, was also tasked with training me this weekend. Her instruction started with having me administer Dad’s morning meds. We started with the pills, which I was to crush and mix with water. I then drew up the liquid mixture into a syringe and emptied it into the PEG tube. The other two meds were powders: the Renvela was for his kidneys and the Beneprotein was a nutritional supplement. According to Jennifer, I had to mix the Renvela with water and then squirt out 1/3 of the mixture into the sink. The entire sachet of Beneprotein was injected into the PEG tube. After injecting all of the meds and supplements, I flushed the tube with lukewarm water to ensure that nothing remained. So far, so good.

mapAfter Jennifer left the room, Dad asked me about “all of the buildings that he was going to travel through.” I explained to him that to get home, he wouldn’t travel through buildings, but that his ambulance would take him home via the Loop and 31st Street. I drew him a bad, oversimplified map of the area and explained where everything was and the distances between them. He had been hospitalized so long that he was confused, thinking that there was a difference between our house and our home. He then told me that it would be prudent to get him a bedpan, so I called the nurse and left his room.

While waiting in the hallway, I encountered Dr. Smith and conferred with him for a few minutes. While we were chatting, he told me that I was pretty lucky because Jennifer was one of Scott & White’s top 25 nurses of the year. I had just met her this morning and had already concluded that she was very friendly, supportive, and professional. I also didn’t pick up any vibes that she was judging me for moving Dad to home care.

2015_sepeclipse_028At 11:00 A.M., Angela returned, and my respiratory therapy training ratcheted up a notch. In addition to suctioning Dad today, she said that I would change out his tracheostomy tube. I had hoped to record the process with my camera, but I ran out of disk space before I was finished. Regardless of whether you were suctioning or changing out the trach, the process required a sterile environment. There was a specific way in which to open the kit and put on the gloves, which I thought would be my undoing. Putting on a pair of gloves so that you don’t touch and contaminate them was not as easy as you might think, and I felt like a complete doofus.

I had a tiny problem getting the trach tube into his throat, but I think it was because I didn’t insert it at the correct angle. I panicked a little; Angela took over, and it slid right in. She also showed me how to clean the trach that I had just removed and how store it for the next changeout. As if all those steps weren’t important enough, it seemed like the biggest lesson was that you had to ensure that you tightened the collar enough so that it wouldn’t come out, yet not so tight that you choked the patient. Being able to place two of my fingers between the trach collar and Dad’s neck seemed to ensure the correct fit. I was a little stressed out and I couldn’t believe that I would have to perform this procedure every seven days. Was it that long ago that I thought to myself that I couldn’t imagine having to change out a trach? Sheesh.

2015_sepeclipse_047While I was sitting with Dad, Angela returned to the room with printed instructions about how to suction and change out a trach. Dad was sleeping, so I decided to read the entire document. I write technical documentation for a living, and although I’m not diligent about always reading it, this seemed like a good time to read the manual. I was glad that I did. When Angela stopped by again, I told her that the two other respiratory therapists had had me insert the tubing much further into Dad’s trach than the instructions advised. She told me that she had noticed that I had performed deep suctioning on Dad, but that it wasn’t necessary. When I changed my suctioning technique, I found that suctioning didn’t hurt Dad the way it did with some of the respiratory therapists. I was glad that Angela was now my trainer. I recalled how Dad had told her that she was different from the other respiratory therapists and how he didn’t like others, like Victor. Angela had me suction Dad the rest of the day, and by the end of the day, I was somewhat comfortable with the procedure, although I still had to psych myself up for it.

I was glad when it was time to go home for lunch.

After I returned to the CCH from lunch, Jennifer and I got Dad into the wheelchair. The next time that Angela came in to suction Dad, she noticed that he was slouched in the wheelchair. She said that he was too bent for suctioning and she would wait until he was back in bed and at a better angle. I made a mental note to myself that the angle of his neck was important when suctioning the trach.

I was by myself at the CCH for most of the day. Mom was at home preparing the house, especially the master bedroom, for Dad’s homecoming. Stan split his time between performing chores at the house and running endless errands.

floor_matIf you spend any time at a hospital, you quickly learn that healthcare is a dirty business and the floor is difficult to keep clean. My parents’ house, including their bedroom, was carpeted with a beautiful sea green carpet. We were pretty certain that the carpeting would not survive Dad’s home care. One of Stan’s assignments was to figure out how to save the carpet. He eventually decided on chair mats. He bought out the supply of rectangular mats at Staples and Office Max and then worked out the arrangement of the mats in the bedroom. In addition to protecting the floor, the mats provided a relatively hard surface and protected the carpet from some of the heavy equipment and the wheelchair that would be brought into the room. He also purchased some shelving and boxes that we would need for storing medical supplies. Thank goodness my parents’ bedroom was large enough to accommodate everything.

By the time that the three of us met at home at the end of the day, we all felt like we had put in a full day’s work and were ready to make use of my parents’ bar.

September 27. I woke up at 5:30 A.M. and wandered into the kitchen to make coffee. I was surprised to find that my mother was already up and about. She told me that she had been awakened at 3:15 A.M. by a phone call from some college. The crank calls persisted until about 5:00 A.M. Before the annoying calls stopped, she had reached the point where she would answer the phone and immediately hang up. By the time that I woke up, she had done a lot of housework and was exhausted.

Mom and I arrived at the CCH at 9:00 A.M. Dad was awake and promptly told Mom that he had been trying to call her since 3:15 A.M. What Mom had heard was the audio caller ID announce wireless caller. The audio wasn’t all that clear, so you might imagine that it sounded something like Warless College, especially at 3:15 A.M. Mom might have appreciated the humor of the situation more if she had had 2-1/2 hours more sleep. My father could be a real pill with a phone. I don’t know if we ever knew why he was calling.

2015_sepeclipse_056Shortly after we arrived, I went to the nurses’ station to see Jennifer. She said that she had been waiting for me to arrive so that I could administer Dad’s morning meds. At practically the same time, Dr. Smith arrived and we discussed Dad’s feeding tube and his invasive lines. I agreed with the doctor that because of its upkeep and the potential for infection, we wanted the PICC line removed. It was used to administer IV medication and he had already changed Dad’s prescriptions so that he was no longer receiving any IV drugs. Dr. Smith said that if we had an emergency, we could use the dialysis catheter while trying to start another IV or insert a new central line. He said that nephrology wouldn’t like this option, but in a pinch the dialysis catheter would work. During our discussion I learned that Dad had been tested for the Candida fungus five times and had tested positive only the first time. It sure would have been nice to know this sooner. If I had had more time to think about it, I would have resented being manipulated by Dr. Ciceri. I still shudder when I thought about how close we came to withdrawing care because of misleading information.

I put on a hospital gown over my Sunday clothes and administered Dad’s morning meds. Mom and I left for church at 10:20 A.M. and once again, Stan stayed and visited with Dad.

When Mom and I had attended church last week, we had a very sobering and tearful meeting with our good friends, who I referred to as the church ladies. Our friends at church had prayed their hearts out for Dad, and they were heartbroken about his prognosis. As upset as they had been last week, they were thrilled today. They and Pastor Tom praised God about the miracle that had occurred.

Stan had a good visit with Dad and left the CCH when I called him at 12:25 P.M.

2015_sepeclipse_063I returned to the hospital at 2:00 P.M. to find that Jennifer and the aide were giving Dad a bath. When they were finished, Jennifer and I maneuvered Dad into the wheelchair. Jennifer thought that he was a bit weaker than yesterday and said that she wanted him back in bed in about an hour. It was a nice day, so after I had Dad cough up some secretions, we headed outside in the wheelchair. We strolled on all of the available sidewalks, which still wasn’t much of an outing, and then settled under the covered hospital entrance. While we were sitting out front, Stan and Mom drove up and visited. Stan could stay for only a couple of minutes because they had been grocery shopping and he had to get the perishables home. Mom and I visited outside with Dad until 3:25 P.M. Shortly after the three of us returned to Dad’s room, Jennifer, Hector, and I put him back in bed. Mom and I visited with Dad until about 4:30 P.M.

It had been another long day and Stan, Mom, and I were pooped. I had downloaded the Domino’s app to my iPad, so we ordered a pizza the 21st century way. We had ordered three pizzas since I had been staying there, which is more than I had ordered in the last 25 years. I loved to make homemade pizza, but desperate times called for takeout.

2015_sepeclipse_097Stan and I stayed up late to watch the total lunar eclipse (blood moon). While watching the moon, my dear friend Rhoda texted me to see how I was doing. I quickly called her to let her know about the miracle and our change in plans.

She was just over the moon!

 

Wait. What? You’re kidding!

September 24, 2015. I contacted One On One Personal Homecare Services and provided Rebecca Crabtree, the owner, with a brief story about my father. In inquiring about her services, I wanted her to understand a little about the circumstances that put us in this terrible situation. Her company provided aides who worked seven on and seven off. Ideally, a couple of aides would be assigned to you and they would trade off on Tuesdays. This 24×7 service was provided at the bargain-basement price of $1,106/week. Based on my research, the going rate for aides was about $30/hour. If you could get someone to spend nights with you, you’d likely pay more than $5,000/week. Following a couple of email exchanges, I signed a contract for her services to begin on September 29.

After contracting One On One, I contacted Sheila Rogers at Interim Hospice and told her that we had arranged for aides to assist us with Dad’s care. The aides would provide personal care services, but I would provide the trach care.

Dad’s day started off a little rough when he insisted that he would get out of bed. He was very agitated and combative when his nurse, Alyssa, told him that he had to stay in bed. She finally administered some medication to calm him.

Susan, the physical therapist, arrived at 9:00 A.M. for Dad’s therapy session. She was not in favor of our desire to have Dad transfer into a wheelchair when he was at home, and she provided a demonstration of the Hoyer sling. At the end of his therapy session, Dad was able to use the walker to stand up from the bed and back up into a traditional wheelchair. He piloted the wheelchair as he and Mom went outdoors and visited for almost 45 minutes. Alyssa caught sight of them a couple of times during their meandering visit through the CCH facility and noticed that they seemed to be having a pleasant visit.

Shortly after lunch, Mom had another confrontation with Marty — this time she was insisting that Mom needed to learn how to take care of Dad. Considering how Marty had told me earlier that the nurses didn’t think that Mom could take care of Dad, I found it interesting that she was now pressuring Mom to learn. I was just a little miffed about this confrontation. I thought that we had agreed that I would be trained. I couldn’t help but think that the confrontation had more to do with trying to dissuade us from taking Dad home than training Mom.

Marty called me after this confrontation with Mom and told me that my mother was being very defensive. Mom had already told me about their encounter, so Marty’s call wasn’t a big surprise. I told her that my parents had been married for more than 65 years and that my mother was going through the worst time in her life. I thought that the least that she could do was give my mother a little slack as she tried to prepare herself to be a widow. I had once asked the nurses if they had any humanity and it seemed like a lacking commodity at this place. The thing that my mother needed most was a hug, not the endless grief that she seemed to receive from some of the providers at this facility.

According to my mother, Marty took my comments to heart and she and my mother shared a tearful moment back in Dad’s room.

Shortly before 3:00 P.M., to prepare for his haircut, Alyssa and another nurse helped Dad get back into his wheelchair. Mom’s stylist, Gina, arrived at the appointed time and gave Dad his much-needed haircut. When she was finished, Mom thought that Dad looked a lot more like his old self. Dad thought that the haircut was “OK,” and said that he looked forward to getting a better haircut from his barber. The haircut was timely, as Pastor Don, Jack, and Sandra, all from the church, stopped by to visit with Dad.

Mom left for the day around 5:00 P.M., thinking that Dad had had a pretty good day, all things considered.

At 11:30 P.M., Andrea, Dad’s night nurse, offered Dad the opportunity to administer his own oral care. Unfortunately, he was very confused and tried to use the mouth swab to suction himself. Andrea finally offered to assist him, and he sorta graciously accepted.

Dad and Andrea had another confrontation four hours later when he insisted that he had to get out of bed to use the bathroom. They argued about the bed pan and she left to retrieve Haldol to calm him. By the time that she returned, Dad had calmed down, so she didn’t administer the med.

September 25. I left Houston at 6:10 A.M. and arrived at my parents’ house in Temple at 10:30 A.M. Shortly after I arrived, GoodWill arrived and picked up my parents’ king size bed.

Mom and I arrived at the CCH at 12:45 P.M. Dad was still in dialysis, which allowed Mom and me a few minutes to visit with Dr. Smith. He told us that Dad would not need the dialysis lines when he went home. He didn’t know if the hospice care nurses would need the central line to administer morphine or other drugs, and asked me to contact them. I texted Sheila at Interim, and she said that they wouldn’t need the central line. Dr. Smith said that he would write orders to have the dialysis catheter and PICC lines removed before we took him home.

Dad returned from dialysis around 1:15 P.M. While he and I were talking, he mentioned how much he hated dialysis. When I told him that he would need to endure it just one more time, he said, “No! Without dialysis, you’re dead.” Something about the intensity of his response made me get up and look for Dr. Smith, and I found him in the hall outside of the administration offices. I told him that Dad just didn’t seem like someone who was dying, not that I possessed any real insight. I didn’t really have any goals and I didn’t know where I was going with this comment, but Dr. Smith and I discussed Dad’s state of mind, and he agreed that Dad seemed pretty lucid and that we shouldn’t withdraw care. He went on to say that the fungus had not been noticeable in Dad’s lab results for the last three tests. He thought that we might have to deal with a fungus at some time down the road, but that he would tell Marty to change Dad’s discharge plan from Hospice Care to Home Care if that’s what we wanted. I wasn’t familiar with Home Care and its implications, but it sounded a darn sight better than Hospice Care, and I quickly agreed.

blog01I practically ran back to Dad’s room to tell Mom the good news. Marty stopped by a few minutes later at 2:00 P.M. and asked if we wanted to review some brochures for Home Care providers. We knew that Adan worked for Scott & White Home Care and worked with the physical and occupational therapists that would care for Dad. Ironically, our decision to go with Scott & White Home Care was practically instantaneous. I had been critical of Marty over the past month, but she really earned her pay today. She quickly shifted gears and told us about all of the equipment that we would need and everything that we’d have to do, but we told her that we had made up our mind to take Dad home. She explained that she would do everything possible for a Tuesday discharge, but we were at the mercy of American Home Patient and their providers to deliver everything we needed.

When Mom and I had interviewed Shiela at Interim, we were touched at how willing she was to accommodate us. She had planned to move that weekend and changed her plans. I now needed to contact her to give her the good news that we would not need her services. She was very gracious and was thrilled for us.

At 3:15 P.M., Dana showed me how to administer Dad’s meds in the PEG tube. She reiterated that I would need to spend the weekend learning how to administer meds and how to handle all of Dad’s trach care. I assured her that I would arrive early tomorrow to begin my training in earnest.

Mom and I were asked to leave Dad’s room for a few minutes, so we walked to the CCH lobby and helped ourselves to a cup of coffee. I didn’t usually drink caffeinated coffee after noon, and Mom didn’t drink caffeinated coffee at all, but we didn’t care. We were practically walking on air and felt like celebrating with a cup of nasty coffee.

When we returned to Dad’s room, I saw Jennifer, the physical therapy assistant, outside of the room next to Dad’s, and introduced myself to her. In the 36 days that Dad had been at the CCH, I had not met her. I told her that I had heard great things about her and that I was glad that I had finally had the opportunity to meet her. She was very pleased and gave me a hug.

Mom_ERDad was a little tired after dialysis and didn’t feel up to much physical therapy. He didn’t get out of bed but did agree to some exercises in bed. Shortly after Jennifer left Dad’s room, Mom started feeling very lightheaded and faint. I got her a glass of water and I had Dana, the nurse, check her pulse. It was 82, which was fine, but Mom’s lightheadedness didn’t go away. While I watched this unbelievable mini-drama play out, I noticed Dad’s razor sharp focus on Mom that never wavered. I felt like an intruder on an intimate moment. I then asked Dana to take Mom’s blood pressure. Her blood pressure was very high, and the nurses strongly suggested that I take her to the emergency room at Memorial. I couldn’t believe it, and myriad emotions washed over me. Just minutes earlier we had been so elated about Dad, and now I was very worried about my mother. What was it with my parents and their dueling maladies? The nurse fetched a wheelchair while I pulled the car to the front entrance and we drove five miles to Memorial.

We arrived at the hospital at 4:15 P.M. and didn’t have to wait long before they triaged Mom. We were ushered into an examination room about 30 minutes later, and time seemed to stop. After the nurse repeated the same questions that we were asked 30 minutes earlier, she hooked up Mom to the monitors and we waited for the resident, who asked many of the same questions that we had now answered twice. A while later, we met Dr. Jones, who ordered some blood work, and then we waited an hour for the lab results.

There must have been a shift change, because a little over an hour later, a different resident entered the room and proceeded to tell us what was wrong with Mom. Evidently, Mom was dehydrated and needed an IV, which they would administer after they admitted her. Mom’s blood pressure had dropped and stabilized during the two hours that we had cooled our heels in the ER, but that announcement made her blood boil. Mom had big plans for the next couple of days and had no intention of being admitted. At Mom’s refusal to be admitted, I asked the resident if Mom could receive the IV in the ER and then go home. The resident agreed to that plan, and it seemed like my plan was a go until Mom learned that it would take more than an hour to administer the IV. It was 8:00 P.M. and we had now been here for more than four hours. Still searching for a solution, I asked if we could stop by HEB, the local grocery store, on the way home and pick up some Gatorade instead. The resident thought for a moment and said that this might be a viable solution, but she wanted to check first with Dr. Jones.

When the resident and the doctor returned a few minutes later, they explained that the original diagnosis had been incorrect. Instead of being dehydrated, Mom had the opposite problem and needed to restrict fluids. I’m not sure what they had in mind, but the two of them were pretty insistent that they must admit Mom for observation. Mom would have none of it and insisted that she was leaving. Frankly, we weren’t feeling too confident that these guys knew what they were doing. Had we not balked about the treatment, would they have administered the IV? The two doctors finally realized that they had more than met their match, and Mom signed an Against Medical Advice (AMA) waiver, stating that she was declining the recommended medical treatment. We waited for our paperwork and finally left the ER shortly after 9:00 P.M. In hindsight, a caffeinated cup of coffee on top of the shocking turn of events was probably a bad idea.

We drove home as fast as we could and celebrated the events of the day with a dinner of leftover Sloppy Joes. Mom poured herself a scotch and I poured myself a glass of wine—as far as we were concerned, this was just what the doctor ordered.

As we looked back on the day, we wondered when the heck the doctors were going to tell us that Dad didn’t have the Candidiasis fungus. We had spoken with Dr. Ciceri several times a day for several days and he looked us in the eye and told us that Dad had this fungus and never wavered in his prognosis that Dad would die in one-to-two months, even with care. And to top it off, we told this guy that he was one of the two doctors that we trusted. Because Drs. Smith and Ciceri were partners, I had assumed that Dr. Smith knew about Dr. Ciceri’s dire predictions, but now we weren’t so sure. We also wondered if Dr. Smith thought that we knew about Dad’s negative test results. The events of the day had unfolded so rapidly that we hadn’t had the opportunity to process everything we heard, let alone ask questions.

The list of doctors that we trusted with my father’s life was now down to one: Dr. Smith.

I don’t know what prompted me to approach Dr. Smith about Dad, but I do know that God works in mysterious ways. Thank God.

I just wished that God could make Dad stay in bed.

Preparing for the other H word: Hospice

September 21, 2015. Mom and I arrived at the CCH at 8:15 A.M. Alyssa, Dad’s nurse, told us that my conversation with Dad the previous night had calmed him down and that he finally went to sleep with the assistance of a sedative. While Dad was still in dialysis this morning, we wanted to obtain a list of local hospice providers from Marty. We also wanted to be sure that we arrived before the nephrologist, Dr. Concepcion, left for the day. We told the receptionist that we wanted to meet with Marty and Dr. Concepcion, and went to Dad’s room to wait.

During the past couple of days, Dad had seemed to be in a much better mood and talked about his plans after his return home. The more excited he became about going home, the more depressed and heartbroken Mom and I became. We hadn’t told Dad that he was going home to hospice. Mom and I couldn’t decide when to tell him, perhaps because we couldn’t bear the truth of our situation. I also couldn’t bear to think of how he might respond.

When Dr. Concepcion arrived, we were stunned to learn that Dad had asked him this morning about alternatives to in-hospital dialysis, including at-home dialysis. The doctor said that he had explained to Dad that it would take a lot of time to set up such a system and that he could also get dialysis in a nursing home. He said that Dad was quiet for a moment and then was adamant that he would not go to a nursing home. The doctor told us that at-home dialysis would not be a reasonable option for Dad. Mom and I wondered how Dad processed the conversation with the doctor.

As Dr. Concepcion left the room, Marty stopped by and dropped off materials about local hospice providers. She also told us that the CCH could also provide hospice services, which to Mom and me seemed like the worst of all possible alternatives. Marty proceeded to warn us that the team was concerned about us taking care of Dad in his final days, especially with his trach. She made it clear that the nurses didn’t think that Mom could take care of Dad. In her curt manner, she proceeded to tell us that we would essentially be on our own with Dad’s care and blah, blah, blah, and that the hospice nurse would stop by for only a short time each day. I felt like I needed an ACE inhibitor after most of her lectures.

I made a couple of phone calls and narrowed down the list to two hospice providers. Mom and I met with Sheila and Heather at Interim Health Care, which is located just down the street from the home of Mom’s friend Marilyn. I really liked these women and felt that Interim would provide great care, but Mom and I agreed that we should meet with someone from the Scott & White organization. When we returned to the CCH, we contacted Scott & White Hospice and scheduled an appointment for later that afternoon. Their office was across the parking lot, so their representative said that she would call me when she left her office.

Dr. Randall Smith returned today as the attending physician. When we met with him, he told us that Dad was still suffering from delirium. He told us that when he visited with Dad during dialysis, Dad told him that he wanted to clear his accounts and pay his bill. The doctor tried to tell him that he wasn’t involved with payments, but Dad wouldn’t listen to his protests. Instead, he handed the doctor what Dad said was a check, but was actually a napkin. We also spoke briefly with the doctor about the hospice plans. He said that it would be much easier for us if we would have hospice services provided in the hospital, but we wouldn’t entertain that suggestion.

familyTreeWe met with the representative from Scott & White and although she seemed very professional and they would provide a good service, we were sick and tired of this organization and wanted to cut our ties with them. I confess that I entered the interview with a somewhat closed mind and I didn’t note the name of the person whom we interviewed. I wish that I had because I owe her a debt of thanks. Knowing that we would need some very expensive assistance, she gave us the name of a company that provided 24×7 care. The company was One on One Personal Homecare, owned by Becky Crabtree. Her name resonated with me because I have Crabtrees in my family tree. I didn’t realize it at the time, but this referral was a godsend.

Shortly before Mom and I reentered Dad’s room, he attempted to get out of bed. Alyssa was able to convince him to stay in bed. A few minutes later, Andrea, the respiratory therapist, continued my trach care training. This task was well out of my comfort zone, and I performed it tentatively at best as Andrea talked me through the process. By the time that I had finished the trach care and suctioning, it was time for Mom and me to return home.

Mom and I discussed the day over drinks. She said that she thought that she needed to tell our closest neighbors about Dad. Because they had been so kind to us throughout this ordeal, she felt that we should let them know.

September 22. I originally hadn’t planned to stay in Temple yesterday, but I wanted to help Mom interview hospice care providers. So that I could arrive in Houston before noon, I left my parents’ house early in the morning. I was going to live at my parents’ home until my father died, and I needed to wrap up a few things and gather some of my personal items. Stan and I had already made plans for someone to take care of our cats, so I didn’t need to worry about them or the house. My father’s birthday was on October 6. I didn’t know why it seemed so important to me, but I held out hope that he would live to see 87. Based on estimates from doctors and friends, he might die on his birthday.

In our conversation with the doctors, we had stipulated that we wanted Dad to receive physical therapy while he was in the hospital. It might have been silly on our part, but we wanted just once to be able to get him into a wheelchair at home so that we could wheel him around his property and the house that he designed.

Mom arrived at the CCH at 9:15 A.M. Marty stopped by a little later to see if we had selected a hospice company and to confirm that we still wanted Dad to receive dialysis on Monday. Mom confirmed with her that we definitely wanted dialysis and told Marty that after she heard from me, she would provide her with our hospice selection. I had wanted to contact Interim first to ensure that they could accommodate us, and then I would give Mom the go-ahead to tell Marty and turn down the other provider.

Marty contacted Interim and faxed them the necessary information about Dad. She then called me to see when I would be available for training. I let her know that my plans had not changed and that I would be there Friday afternoon for two full days of training on Saturday and Sunday. After her call with me, Marty asked the charge nurse if she would have the nurses and respiratory therapists start training Mom on the tube feeds, suctioning, meds, and some of his personal care so that she could see what it would be like to care for him at home. It was like they were waging emotional warfare against us.

By 2:00 P.M., when Dad still hadn’t received physical therapy, Mom searched for the physical therapist and found Jennifer, her assistant. According to Jennifer, Susan, the physical therapist, had decided that Dad would not receive any more physical therapy.

Some time later, Mom was confronted by Susan and Marty, who insisted that it was not a standard practice to build up a patient before discharging him to hospice. They told Mom that her expectations were not realistic. Marty reiterated that taking care of Dad at home would be very difficult, especially with trach care and tube feeds. Mom defensively told them, “Don’t worry about me. We will hire whoever we have to!” Marty pressed Mom to know who she had hired. Mom told her that we had not hired anyone yet, but we would. When my mother became visibly upset, Marty apologized for questioning her, but she just wanted to be proactive to ensure that Dad would have everything that he needed. When Marty told Mom that the nurses would start training her to care for Dad, Mom said that Interim would provide a nurse. Marty challenged her and said that Interim’s nurse would not be there to tend to Dad’s daily needs. When Mom started getting upset again, Marty ended the inquisition and left. A few days earlier, Mom and I didn’t know much about hospice, but somehow the reality of the service wasn’t jiving with what we had heard. Whenever I heard stories about hospice, I seemed to recall references to kind caregivers. For some reason, I assumed that they were part of the hospice service.

Susan insisted that Mom and I would not be able to get Dad into a wheelchair, suggested a Hoyer lift, and proceeded to demonstrate its use to Mom, but Mom was not swayed. Eventually, Susan said that she would change her ruling and that Dad could have physical therapy. True to her word, she stopped by later that day and, with the assistance of a walker, Dad got off of the bed and pivoted into the side chair. As was often the case when Dad sat upright in a chair, he coughed up a lot of secretions.

After the gang of providers left, Mom and Dad had a good talk, but not about hospice.

Marty had arranged with American Home Patient to have the hospital bed and equipment delivered on Monday, September 28, four days from now. To transform their bedroom into a hospital room, Mom wanted to get rid of their king-size bed and have the room thoroughly cleaned. She planned to call her neighbor, Sharon, to see if she could provide the name of a housekeeper and also planned to call the Salvation Army to see if they could pick up the bed on Friday.

September 23. Michelle, Dad’s night nurse, found Dad awake at 4:30 A.M. with his legs hanging over the side of the bed. When she tried to assess his mental status, he refused to cooperate and told her, “I’m not going to do that anymore. You answer for me.” He then told her that when he left the CCH he needed to take the trash can that we kept in the closet. When he pointed to the closet where the trash can was kept, he pointed to the hall. Michelle didn’t think that Dad was trying to get out of bed, but when she asked him to keep his legs in the bed, he called her a troublemaker. He became a little perturbed with her when she raised the side rail on his bed, but he seemed to be sleeping by the time she left his room.

While Dad was in dialysis, Mom called the Salvation Army to schedule a pickup, but they could not come by until Monday. Fortunately, Good Will could accommodate her schedule and agreed to pick up the bed on Friday.

basicPhoneBefore she left the CCH yesterday, Mom left her cell phone with Dad so that he could call her if necessary. He called her early in the morning to see if she was awake. He then called her later in the morning to tell her that someone had broken his electric shaver. He could be a pill with a phone.

When Mom arrived at the CCH, she spoke with Susan, the physical therapist. Susan and Mom agreed that Dad was too weak after dialysis for therapy, but she said that she would try to get Dad into a traditional wheelchair tomorrow.

I called Dr. Smith to ensure that Dad would indeed receive physical therapy tomorrow. Mom’s conversation with Marty and Susan the previous day had upset her, and she didn’t need the daily dose of aggravation. I couldn’t imagine what difference it could make if Dad received one or two days of physical therapy if it could make even one of his remaining days more enjoyable for him. Dr. Smith assured me that Dad would receive the promised therapy.

Mom called Adan to see if she and I could meet with him when I returned on Friday. I’m not sure why she needed to see him, but I was anxious to meet him.

Andrea, Dad’s night nurse entered his room around 11:30 P.M. and saw that he was attempting to get out of bed. When she questioned him, he said that he was “going to do stuff.” She explained to him that it was almost midnight and encouraged him to stay in bed, which he did for most of the night.