I watched my father lose capacity in a way that awkwardly mirrored the way my daughter had gained capacity as she grew and matured. With my daughter, her increasing mastery of her mind and body was a cause for celebration. Seeing those same milestones being taken from my father was hard. In youth we overshare about our child’s potty training, not so with incontinence. When my dad, who represented strength in my childhood, became weaker, I resisted the change. My reaction was painful and shared furtively, if at all.
A few months before his death, I found the man who taught me to drive struggling to get his car into gear. I told myself, “It was a momentary lapse, don’t make a big deal about it”. But that episode brought back memories of how my maternal grandfather had become a danger on the road in his last years of life. Each of my grandfather’s neighbors secretively approached me about taking away his car keys. The car represents independence to a senior citizen just as much as it does to a teenager. For my dad, I offered rides more frequently.
Spending time together became an objective. I brought my parents out to our home for a birthday party. I recorded him reading his poetry. We gathered to eat sandwiches at a park. When dad was waiting for mom, my wife and I got chairs to sit next to him and pass the time. I would share with him details of my projects. On three occasions I painted his picture. The first one was a painting of him sleeping on the couch. He napped a lot so it was easy to catch him doing it. Since it wasn’t a very flattering picture, I promised to do it again. For the second pose he was playing on his phone, but since that didn’t really represent my image of him, I substituted a book for the phone. I used the excuse of wanting a double portrait to get him to pose a third time with my mom. Our conversations continued much as they had been for years.
Even so I knew my father was facing an aggressive cancer. One kidney was removed. A mass appeared in his remaining kidney, but it was in-operable. I contemplated taking a leave of absence to support my parents. My father was becoming very exhausted. After his first fall he had to crawl back up. I didn’t hear about that fall until two days later when he was not able to get up from the second fall. As time went on he was not able to get out of bed. It was around this time that it became clear that doctors would not be able to cure him. Our mindset shifted from hope for remission to wanting to make him comfortable.
The expression that I use now is to describe this time period is the last ten days of his life, but at the time there was no certainty as to what would happen. This was new and often fearful territory. We had no certainty of how this might end, plus there were suddenly caretaker roles thrust upon us. I had no direct experience caring for a seriously ill patient, and my mom who had was not strong enough to do some of the more strenuous caretaker duties. Hospice provided vital support in the form of a hospital bed and visiting nurses who showed how to care for my dad. The social worker and nurse sat down with us and described the needs of a critically ill patient and also how the body shuts down at the end of life.
The end of life is a moment when relationships change. I could see how this was a passage for me as well. I had seen my dad as a constant strong point on which I could rely. Now, I needed to be the one who was strong enough to be there for him and flexible enough to evolve in how I would be with him as a caretaker rather than a nurtured son.
Near the end he was not able to turn in bed and eventually he stopped eating and drinking. None of this sounds appealing, yet this is where I wanted to be. It is like a tradition my wife has instilled in me. At the end of an evening we not only see a guest to the door, but also follow them to their car and wave until they pass out of sight. As my father was about to leave this earth, the tasks of giving medicine, keeping track of his position, and readjusting the pillows helped me to feel like I had a meaningful role. I was doing all of the talking as dad had stopped speaking. This new world became smaller but also more intimate. My desire to be an active participant in my dad’s care became clear to me when my mom began advocating for hiring home health care aids to come in and do the care. She asked me to make the call and set up an appointment to hire these strangers. I did as she asked, but as I did so, my heart felt pushed aside. I don’t think I could bear to be a spectator to my father’s death. Fortunately, their office was not open over the weekend, so that decision was delayed. In the meantime, I focused on caring for my dad.
Saturday night we did everything we could to keep my dad comfortable. We shifted his position and his pillows to prevent bed sores. We carefully ground his pills and mixed them with water so the liquid mush could be administered by dropper. When his catheter began to leak we were able to call a hospice nurse to replace it. I recorded each detail of care with the time to make sure I was adhering to the schedule of care. I set my alarm to wake myself every three hours so I could give medicine and reposition him as scheduled. This continued at 6:00 pm, 9:00 pm, midnight…. from my sleeping spot on the porch I could hear my father’s heavy breathing. When I woke up at 3:00 am a loud storm was raging. I could not hear my father over the thunder and lightning. When I went to my dad, I found him as before. Breathing heavily, but not in any distress. I gave him the medicine and repositioned him. In that moment, with the storm raging outside, I felt the cozyness of this warm space and there was deep intimacy and unique privilege to be the only one awake in this darkened house caring for my dad. As time passed, the storm moved on and day broke. By mid morning I was sketching out a painting of our time together from the night before. He was no longer able to see, so I couldn’t show it to him, but the nurse said that hearing persists to the end, so I told him about it. As the day progressed, more family members arrived until we were all gathered together. Weeks earlier, we had planned to celebrate dad’s birthday that evening, which we did in a subdued fashion. I squeezed his hand and told him I loved him. Later with everyone gathered around him, my father took his last breath. The hugs of my youth could no longer reach him. As much as I may have wished to cling to him, I had no power to keep him, and I had made peace with that. I was grateful to have been there to say goodbye.
