The Road to Hospice
It was Election Day, November 8, 2016. While that was all that was on the minds of most, it mattered little to us that day. We all voted early that year because my dad went into the hospital to have the left lobe of his lung removed.
We weren’t particularly worried. My dad was a rockstar of surgery. After a lifetime of almost perfect health, in the last few years, he had several surgeries and amazed everyone with his quick recovery.
2016 was a full year of operations. He’d already had his aortic valve replaced, A section of his skull was removed due to melanoma (sunscreen had seldom used on his bald head). Now the left lobe of his lungs was to be removed due to lung cancer. He had quit smoking about 40 years prior.
There were delays, as there often are, and my family waited to hear the news that he was out of surgery. He finally was, and the doctor came out and said he had done well, though his heart arrhythmia had made things a bit difficult, They’d let us know when he was in recovery.
It was probably an hour later when they came to get us. By the time we got to dad’s room, he was awake and already asking the nurse for food. He always wanted food directly after surgery.
People don’t typically do this, and the staff was resistant. The nurse finally agreed he could have some vanilla ice cream, which was one of his favorites. My mom fed him every bit in that small carton. They said he had to wait before he could have anything else.
We talked and laughed with him and were relieved he was doing so well.
We finally got my mom to go home to sleep, and my brother Scott, a registered nurse, planned to stay at the hospital overnight. I decided to sleep in Mom’s spare bedroom that night.
I’m glad I did. My brother called about 1 a.m. to tell us that they had taken Dad back into surgery, and my sister and her husband would be over in a few minutes to take us to the hospital. There was a bleed they didn’t catch.
This second surgery took its toll. Dad was on a ventilator and unable to communicate. Except with his eyes. I felt like he was telling me to do something. Probably get rid of the vent. It was a helpless feeling.
I have four siblings, and we began a rotation so that so someone would be with dad at all times, and someone would take mom home and pick her up every morning to spend the day.
We bought a cot and set up an area in the intensive care room waiting room. We learned a lot from a family who had been there a few days longer than us and settled in as they had moved in. When a particular corner of the waiting room became available, we grabbed it. That was our home for several weeks. Not only did it offer a bit of privacy, but an outlet for keeping phones charged.
Dad was having a difficult time recovering this time. Even when they took him off the vent, he didn’t spring back. We looked for any positive signs. I missed my very strong dad.
I argued with a few doctors. Once because I felt they were looking at him as just any other 84-year old man. I tried to impress upon this doctor just how strong my dad had been, even despite the previous surgeries in the year.
“84-year-old organs are 84-year-old organs”, he said.
“No,” I said. “I’m 56. My heart is not the same as those with whom I went to high school. My lungs are not the same. Our organs age differently based on a lot of different factors.”
I did not convince him. He did not convince me.
They ended up putting him on a vent again a few days later. I believe it was all a matter of bad timing. The doctors did rounds after the morning routine that moved his body around a lot. His vitals were always a bit crazy after this. It was a teaching hospital, and rounds were done just after the shift change. His night nurse had left shift didn’t know what had happened until he came back that night. He, too, was shocked.
My sister had just checked on my dad after the night staff had cleaned him up and refreshed his linens for the day, and he was doing well. She went downstairs to get a cup of tea, and as she drank it back in the ICU waiting room, my mom called in a panic. The hospital had just called her to say Dad needed to go back on the vent. My sister rushed into his room to try to see what was going on, but she was too late. They already had started the procedure. This was the beginning of the end.
They eventually told us they wanted to move Dad to a specialty hospital, a group whose expertise was getting patients off vents. The marketing person from that facility made a lot of promises. They were supposed to get him up twice a day to sit in a recliner and take him off the vent for increasingly more extended periods. Not one promise was fulfilled after the second day.
I grew to have a high level of confidence in the respiratory therapists in this hospital, but absolutely none for the doctors. No doctors ever examined him the whole time he was there. Once a doctor came into the room and stood at the foot of his bed. His attention was more on me than Dad. I seethed and reminded him Dad was the patient.
The respiratory therapists could do nothing without the doctor’s order. It made me crazy. I had seen how well Dad did when they initially did what they said they were going to do. He stayed off the vent longer than they expected each time. But then it stopped, for seemingly no reason, all because a doctor who had neither seen him during the process or examined him any other time, did not order it. The doctors were either unable or unwilling to communicate why they made the decisions they did, no matter how much I asked. The respiratory therapists appeared as perplexed as we were.
Then my dad had a stroke. Not one of the medical professionals noticed. My sister, who had been away sick for a couple of days, came back and noticed immediately. My mom and sister insisted that they check for this, and begrudgingly they did some testing. A neurologist later came and told me that yes, Dad had a stroke. It was something from which he could recover, though the other aspects of his condition complicated things.
My family had already begun the Hospice conversation. My mom was the first nurse hired by Hospice in our county. Since that time, they have grown into a top-notch operation. They operate the Gordon Hospice House, where many people I have known have spent their last days. We are all huge Hospice supporters.
My Mom decided it was time to move Dad to Hospice. We couldn’t continue to allow him to be in this place where his care or comfort did not seem to be a priority, and communication was almost nil.
Dad had to be off the vent for Hospice. We asked that the specialty hospital staff prepare for the transition. Even after that, I had to stop people from coming in during the middle of the night to poke him and prod him and do unnecessary tests, which would have disturbed his rest and cost Medicare more money.
Our excellent local Hospice staff made sure all was ready on their end to welcome him there.
I was one of the last in my family to get on board with the Hospice decision. My younger sister was the first to break down and say we couldn’t continue to put him through this cycle of care when he wasn’t getting better. My thinking was if they took him off the respirator gradually, as they were supposed to, he would rally, and we would be able to get him home. I wasn’t ready to lose my dad. My sister said she knew we had already lost him.
But we had all agreed we would support Mom with any decision she made about Dad’s care. I did. And I had grown to despise this specialty hospital. They never convinced me they cared about my dad’s health or comfort or desired that he get better. He was 84 with cancer. I believe they thought he was not worth saving.
The day they took Dad to the Hospice House, I had an out-of-town meeting for work. Not only that, but I had left my purse at home by accident. A dear college friend met me in the town where I had the meeting, filling up my car with gas and made sure I had money for hospital parking and food, just in case I needed it. Dad had left the hospital by the time I got there, so I drove back to our hometown.
They had removed all equipment, including the vent. Dad did fine, even without it done at one time. He also held up well on the hour-long ambulance drive to the Hospice House.
The Hospice House was such a different experience from what we had been in at the specialty hospital. Dad was quickly made comfortable. Most of our family was there to greet him that first night when he arrived, which I believe he sensed. Wife, kids, grandkids, great grandkids.-the room was full. No equipment made it easier to rally around him, to kiss him, to hold his hands. Love surrounded him.
My mom and I stayed that first night with him. We laughed and reminisced through the night. I’m not sure how much he understood. We turned the TV on to shows he and Mom like to watch. He seemed at peace, as he never appeared at the specialty hospital. It was the right place for him.
The next day my younger sister took a shift, and I took mom home for a rest. I bounced in and out all day, picking up a Christmas gift my sister needed and delivering it to her at the Hospice House. Some family friends showed up, so I hung out much longer than I had intended. The atmosphere in the room was positive and peaceful and full of love and laughter. I sat next to his bed and held his hand a lot.
I went home to sleep, starting to get a migraine. I slept all night. Even when my youngest brother called me on both of my phones to tell me, Dad had died about 1 a.m. The phones were right next to my bed. I got my ability to sleep through anything from my Dad. It made me feel closer to him rather than farther away.
I learned about his death the next morning when my sister called about 7:30. I was OK, not being there and learning later. Dad knew I loved him, as did my family.
My brother Derek said it was peaceful. He noticed him breathing a bit different, but no gasps for breath or any significant difficulty. He just slipped away in peace, with my brother at his side.
Dad loved us, and we loved him. I know now that me wanting him to struggle through after the stroke was selfish, though I still believe things could have been different had the specialty hospital done what they said they were going to do before the stroke.
Unfortunately, humans perform healthcare. Blame will not bring my Dad back. I hope talking about it, though, may make medical personnel remember that we are so much more than our age. I’m a communicator, so this experience also taught me that doctors need to better understand how to communicate.
I miss my Dad. It has surprised me, though, that while I long for his words of wisdom or a hug, I feel closer to him in death than I ever could have imagined. He was such a part of me and me of him that he will be with me always. I feel comforted by that feeling of closeness.
Dad deserved to die with dignity, in peace, surrounded by love. God bless Hospice and its people. And thank you, members of the medical community, who know patients are more than a number.
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Kim McKinney loves a good story, making memories, taking pictures, a touch of adventure, travel, her hometown of Statesville, NC, her Kindle, the UNC TarHeels, her funny and sassy family and close friends, hot air balloons, and God’s beautiful creations. She blogs at KimberleyMcKinney.com.