August 29, 2015. Dad’s day started around 5:00 A.M. when he was visited by Mary, a wound care nurse. The CCH wound care nurses not only tended to wounds, which you might expect, they also trimmed nails and would give Dad a shave. Neither Dad nor Mom was a fan of facial hair, so they both felt better after he received a spruce up from wound-care nurses.
When Mom and I arrived at the CCH at 7:45 A.M., Dad was sleeping. A few minutes later, the respiratory therapist woke him, finished his breathing treatment, and administered his oral care. While she was finishing her session with Dad, Dr. White arrived. He and I stepped out of the room and discussed a treatment plan for Dad that would enable him to transfer from the CCH to a skilled nursing facility (SNiF) before his hospitalization benefits expired. If we could get him into a SNiF, he could receive up to 100 days for rehabilitation therapies. When I met with Marty yesterday, she and I agreed that we would like to see him leave the CCH within a couple weeks so that he wouldn’t use up all of his lifetime reserve days of Medicare coverage.
Dr. White thought that Dad had some challenges that could prevent him from transferring to a SNiF. The doctor thought that the feeding tube would be a problem, along with Dad’s mentation and diminished strength. He also suspected that the trach tube might be another obstacle, but he wasn’t sure. He did say that based on the CT scan from yesterday afternoon, Dad’s lung condition was improving.
The doctor said that he could start the process of removing Dad’s trach tube, but he’d been moving cautiously in that regard in case they needed to intubate Dad again. I asked if Dad could start receiving swallow therapy and he said that he’d request a swallow evaluation on Monday. Dr. White said that he’d have Marty give us a list of SNiFs so that we could contact some of them to get an idea about the goals we needed to meet to transfer Dad by Oct. 1st. I told him that I’d like to aim a little higher and get him transferred sooner. He also said that Dad’s nights had been uneventful since he got out of bed a few days earlier. He also said that he would meet with Rachel, the nurse practitioner, to see if she could offer any insight into conditions that could prevent him from being admitted to a SNiF.
When I returned to his room, Dad asked to see his list of exercises. When I couldn’t lay my hands on it, he became somewhat annoyed and agitated that it was lost. I finally got him to calm down when I assured him that I’d help him redo the list.
He grimaced a lot during the morning and finally told us that his shoulder was hurting him a lot. We called for Christine, the nurse, and requested some pain medicine. A few minutes after she gave him the meds, he started complaining about sharp pains in his head. After conferring with the nurse, we suspected that the pain in his shoulder was radiating to his head. After the pain medicine took effect, he stopped complaining about pain.
Kevin from x-ray stopped by around 10:00 A.M to x-ray Dad’s shoulder. While Mom and I sat in the waiting room, I told her about my conversation with Dr. White. She didn’t want Dad to go to a SNiF, and said that she and Dad had promised each other that they would not institutionalize each other. I hadn’t expected this response. A good friend of hers had checked herself into a SNiF during her convalescence from hip surgery. I had no intention of institutionalizing Dad, but we were running out of hospitalization benefits and had to find a place where he could complete his recovery. I told her that not using a SNiF would mean that she would have to hire caregivers to come to the house. She probably would not be able to leave him alone if he was at the house. I was also pretty sure that Medicare would not cover this expense. She said that she didn’t care and would be willing to do what was necessary to keep him out of a nursing home. We dropped the subject for the time being when we returned to Dad’s room.
Dad was a lot more comfortable when the bed extension was on his bed. Unfortunately, when the extension was on the bed, the bed wouldn’t fit into the elevator, so most of the time, the extension sat in the corner of the room. Because the weekend afforded him a couple days without elevators, Christine attached the bed extension.
Dad fell asleep pretty fast when the pain meds kicked in, which seemed like a good time for Mom and me to slip out for lunch.
When we returned after lunch, Dad was lying diagonally in the bed. After Christine got him resituated, Dad and I spent much of the afternoon redoing his exercise routine. I had to talk him down from some of the exercises that he used to do in boot camp some 65 years ago. I hoped that he would be as gung-ho at execution as he was during planning. So far, the physical therapist could barely get him to stand up on the side of the bed.
The three of us watched some of the golf tournament in the afternoon, but Dad had received more pain medicine and he kept drifting off to sleep during our conversations. After one such dozing off at 4:45 P.M., Mom and I went home.
Mom and I continued our tense discussions about moving Dad from the CCH to Marlandwood West, which was a SNiF in the neighbor that, on paper, seemed like a great option for him. Mom still wasn’t convinced, and she was also very concerned about the upcoming week because Dr. Anderson would be returning as the attending physician. It was probably just a freakish coincidence, but nothing seemed to go well for Dad when Dr. Anderson was there. With all that we had going on, I decided to stay in Temple a little longer. Instead of going home on Sunday, I agreed to stay through 4:00 P.M. on Monday. In addition to seeing Dr. Anderson, I would try to stop by Marlandwood with Mom and check out the facility. At this point, we had been arguing about what we envisioned the environment to be like. We needed to see it first-hand.
While Mom and I were at home discussing rehab options, back at the CCH, Dad was attempting to get out of bed so that he could use the bathroom. Luckily, Andrea, the night nurse, intercepted his escape and convinced him to remain in bed. Fortunately, Dad stayed in bed for the remainder of the night.
August 30. Every morning that he was in the hospital, Dad received a briefing of sorts from the nurse about the importance of staying in bed and using the call light when he needed assistance. From what I had witnessed so far, Dad had not taken these daily briefings to heart. Truth be told, between his delirium and some of his meds, I doubted that he could remember these chats with the nurses for more than a few minutes.
Mom and I arrived at the CCH at 9:05 A.M. to find that Dad was still sleeping. We learned that Dr. White was making his rounds, but he had already been to Dad’s room. We woke Dad and eventually convinced him to wear his hearing aids and wear glasses. Glasses and hearing aids might not seem like a big deal, but wearing them wasn’t always a given with him. Stan arrived at 10:00 A.M. to spell me and Mom while we attended church.
The church service lasted 15 minutes longer than usual, so we didn’t arrive home until 12:30 P.M. We were surprised that Stan wasn’t already there, but he arrived shortly after we arrived. Dad had been asking about the finances, but they were on his computer, which I had disconnected so that I could work from his desk. When we finished lunch, Stan hooked up Dad’s computer again in case he asked me to look up some financial information for him.
After saying goodbye to Stan, Mom and I returned to the CCH at 2:00 P.M. When we entered Dad’s room, we found that Angela was in his room and Dad was partway out of the bed. I tried again to see if we could raise the fourth rail but to no avail.
We had not been able to speak with the doctor today. When we asked Carrie if she could find him for us, she said that Dr. White had left the building. We had seen him walk by several times, so either she was misinformed or he had left and had subsequently returned. Regardless, we never saw him again.
For most of the afternoon, Dad slept while Mom and I watched the Barclay’s golf tournament. I hated that he slept so much, but at least we weren’t arguing about the importance of staying in bed or why he couldn’t go home. Mom and I finally left for home shortly after 4:30 P.M.
August 31. Mom had a doctor’s appointment this morning, and when she returned, she and I drove to Marlandwood, the SNiF that was located less than three miles from my parents’ house. Like many nursing facilities, it housed rehab patients who were building back their strength so that they could safely return home. Half of the facility was devoted to permanent residents.
While at the Marlandwood facility, Mom and I visited with Stacy and Colleen, representative of the facility, about moving Dad. We weren’t wild about the semi-private rooms, but we were impressed with the respiratory therapist and the PT and OT personnel. They seemed devoted to building up their rehab patients for their safe return home and they had no qualms about any of Dad’s conditions that we raised. Mom and I were very optimistic about Dad’s situation until we returned to the CCH and talked with Rachel, the nurse practitioner. According to her, Dad could not receive offsite dialysis with a trach unless he could remove his own secretions. She also said that he would need to be able to change out his trach, should a problem arise during dialysis. She reminded me that having the four rails up on the bed was considered restraint, and a SNiF would not accept him if he had been restrained. It was a terrible conversation. I know that everyone loved Rachel, but she had never offered up anything but obstacles. We never heard a single suggestion from her to help us in our plight.
At 2:55 P.M., Holly stopped by for a bedside swallow assessment. She came armed with ice, grape juice, and pudding, but Dad totally refused to participate. I couldn’t take it for another minute. After trying unsuccessfully to get him to exert any effort, I yelled at him and left the building. By 3:05 P.M. I was in my car and on my way home. Between the numerous obstacles and his inability to overcome them, I was frustrated to the breaking point and I felt like I was about to explode. I stopped by the house to pick up my computer and drove home–fuming all the way. Once again, it seemed like Dad’s biggest obstacle was Dad.