Too many times over the years have I stared at my screen, fingers hovering over keys, threatening to dust off my blog and post something new. I have begun to compose in my mind, never to set my thoughts down “in ink.” Stirring moments that before felt so urgent and sticky have lost their texture and slipped away.
It only took a pandemic and the death of my father to get me writing again. I would like to share with you the story of his passing during this bizarre time and what it has taught me about love.
My father celebrated his ninety-first birthday on March 7, which turned out to be the last time I would see him in person. Novel coronavirus was rapidly hitting the fan in the Boston area and I decided that I would visit Dad in his long-term care facility by myself. Why risk bringing the kids or other family members in case, God forbid, we tracked something in there or picked up something that was already circulating within? So I brought our new dog, Pickles the Norwich Terrier. Dad had always loved dogs and I hoped that my gentle, four-legged companion would distract from the absence of other family members.
I had brought Dad corned beef on marbled rye, reminiscent of the sandwiches we used to get at Alfred’s Delicatessen in Houston when I was little. He devoured half of it before losing steam, juices dripping down his fingers, which necessitated my wiping his hands down multiple times with wet paper towels. I also brought a large chocolate cake with coconut frosting. There was enough to feed the whole unit, so after our lunch I handed it to the kitchen manager who carved it up for everyone. We sat around while residents enjoyed cake and clamored for a stint with Pickles. One lady whom I had never once heard speak (nor seen smile) called me over and asked to pet the dog. He was such a hit that I promised I would return with him soon. Alas, within days of my visit, memos landed in my inbox limiting visitation to primary caregivers, then to circumstances when residents were seriously ill or dying, then to none at all.
Dad was suffering from multiple health issues, including Parkinson’s, and had been declining for several years, but more significantly in the last months. I had noticed his increasing inability to express himself, sort of like the words forming in his brain could not quite make it to his lips. He began a lot of thoughts only to repeat the beginning again and again, never reaching the punchline. “You wouldn’t believe…” he would start in his Texan accent. Or, “I have to tell you something very important…” Or simply “Oh God.” I know it was excruciating for him not being able to tell me things, but I became used to it and we would just sit and eat lunch or I would tell him stories about what the kids and dog were up to.
He needed a lot of help, including dressing and bathing and was often incontinent. However, he was still mobile thanks to his special Parkinson’s walker. And being a clotheshorse he was always dressed to the nines with button-down collared shirts, creased corduroys, matching belts and wool knee socks, all of which were completely impractical to put on and take off. The only sartorial outliers: his dull, black, orthopedic shoes with velcro straps, which I am certain he hated, yet accepted, knowing that his regular shoes presented too much of a fall risk. Each morning he would shuffle to the dining room to have breakfast, his favorite meal of the day. The staff joked that he was always the first to arrive. If he was lucky his buddy was manning the counter and would give him two–not one–sliced bananas on his oatmeal. Breakfast was followed by watching the news with the other “inmates” (Dad’s joke) in the so-called “cove,” a pleasant seating area with a decorative electric fire and large flat screen TV, and waiting for the next meal, or maybe for a concert, a visit or other activity planned by the life enhancement coordinator. And so on. Until bedtime.
I know that his life had become tedious and mundane, and that he was never particularly physically comfortable anymore. “How are you?” I would inquire. “Don’t ask,” was his typical response, though he occasionally sprinkled in an “okay.” Nevertheless, he relished my weekly visits and loved hearing about the girls, and during his time at the facility he got to know the staff and the other residents, and they him. They developed a bond. And he seemed more or less content with his routine.
When visitation was no longer permitted I continued to call him on the phone in his room, checking in to see–as best I could–how he was faring. He managed only snippets of information, but at least seemed to understand what was going on and why I could not visit. Then one day I got the call.
The facility had finally secured enough kits to test the entire unit and Dad along with three others had tested positive for coronavirus. He was, however, completely asymptomatic. I indulged myself with the notion that he had likely been only minimally exposed, and was not going to develop symptoms at all. Knowing how fragile he was I still told myself that he might well ride it out. The nurse who informed him of his diagnosis said that she had become emotional due to his reaction. He expressed surprise, understanding and then sadness as he realized he would not be allowed to leave his room and go to the dining room for breakfast.
For a few days our routine continued as “normal.” I would call and check on him and then call the floor desk to ask the nurse what was actually going on since he was uncommunicative. Eventually he simply stopped speaking. The phone would ring and he would answer it, maybe manage a hello, but not right away, and then nothing. After a couple of days of this I asked the nurse what the deal was. “He is doing okay, still sitting up and feeding himself,” etc. “but very tired. You can see it in his face. It is the virus.”
Before he tested positive I had asked his floor to arrange a FaceTime call with one of the tablets they had circulating in the unit. I was afraid that the staff would not allow a FaceTime call now that Dad was infected, but they said that we could do it provided they did all the negative residents first, leaving those with COVID-19 for the end of the day. We set a call for 4:00pm Tuesday.
On Tuesday morning the nurse called and said that he was in a terrible mood and had taken a turn for the worse. When 4:00pm rolled around and I saw him, supine and white as a sheet, my heart sank. He had developed a fever the night before and had stopped eating, drinking or taking any of his medications. He was on an oxygen drip. It was a precipitous decline. Trying not to process his appearance too much, I spoke to him and attempted to soothe him. We set up another FaceTime call for the following afternoon and I called the nurse to find out when the doctor could examine him.
On Wednesday the nurse practitioner called and at my prompting we had a very candid conversation. We had long ago put in place advance directives and there would be no subjecting Dad to hospitalization or invasive measures. When pressed, the NP said that she did not think he would recover and that he probably had only days. Still I am not sure I believed it. I asked how we could make him comfortable and she prescribed Ativan and morphine.
We had our 4:00pm call. They had elevated the head of Dad’s bed so that he was more or less facing the camera. His color seemed marginally better but this did not disguise that he was painfully thin, his mouth agape and weariness in his eyes. I detected fear and sadness. I think he knew he was dying. My husband and I told him we loved him and at one point the aide held the tablet up close to him and said “Richard, do you want to say something?” After a moment, he managed, in a weak voice, “I love you.”
For Thursday’s call I gathered everyone in the kitchen. Dad tried to smile when Bill held up the dog. We all told him that we loved him, not to be afraid, and that we knew that he loved us. It was haunting to see him like that but it still did not feel like goodbye. Our children (thirteen and fifteen) and in fact my husband had never seen anyone in this state before and yet they remained steadfast, looking into the camera with compassion.
Friday just before noon the nurse manager called and said that he was struggling and did not have long. She wanted to arrange another FaceTime right away. Again we gathered and repeated our messages of love. We told Dad not to be afraid and that we were all with him. Somehow, I really don’t know how, through tears, my thirteen-year-old managed to retrieve her guitar and play for him. After about half an hour, he began to look very tired and the aide had other calls to do, so we said goodbye. When I replay the events in my mind, it seems to me that something in his eyes had changed in that call. Maybe I just want to believe it. But I think that the fear had lifted.
Friday evening I called the nurse to check on him twice. He was hanging on, so I finally went to bed. I slept poorly. In the morning I called and things were the same. The nurse said that she would call me if anything changed so I decided to join my regular Saturday 8:30am yoga via Zoom. This way I would not be alone, since the girls were still asleep and husband was working. The nurse phoned a little before 10:00am and was choked up. She said that he was struggling with the breathing and that she was going to give him more morphine to make him comfortable and then call me from his room phone.
I left my yoga Zoom and a few minutes later the phone rang. The nurse put the phone up to Dad’s ear on his pillow and told him that it was his daughter, Emily. I could hear him breathing.
The nurse had other patients to attend to but was distraught about the prospect of leaving him alone. The call enabled me to stay with him and her to deal with her other charges. She returned every hour to give him more morphine, squeeze a little water into his mouth with a sponge, do mouth care and check on me. I had no idea how long he had so I just kept going, talking, singing and playing music for him. And crying. I sang the Beatles, Johnny Cash and Willie Nelson. I made it up as I went along, and when I couldn’t remember lyrics I looked them up on my phone or just hummed the tune. A number of times I did not hear him breathing and thought he had drifted away. “Dad, are you there?” I asked. Then in response the breathing would get louder.
We were on the phone that way for four hours.
I told him that he should let himself float and that I was with him in his mind and in his heart. I told him not to be afraid and that I loved him and knew he loved me. I took him outside because it was a beautiful sunny day and I wanted to feel the warmth on my body and hear the sounds of nature and the neighborhood. Next door our neighbor was working in his garden and another neighbor’s children were bouncing on a trampoline and playing with their dog. As I described these sounds and sensations to Dad, I wondered at how odd it was that I was sitting outdoors among these ordinary happenings, on the phone with my father while he was dying. Listening to the birds chirp. Listening to the kids laughing. Listening to him breathe.
I had just played Debussy’s Claire de Lune into the phone when the nurse came in and said that Dad was starting to look very sleepy. I was afraid that he was hanging on for me. Also, I needed a break. We agreed that we would hang up for now and I would check in later. I asked the nurse if she thought he knew I was there. She said that she was certain he did because when she came to put the phone on his pillow and he heard my voice his eyes welled up. And I feel sure that he knew, from the breathing. There was just something — somehow we were communicating and we were there together.
I said goodbye and that he should drift off to sleep and I would check on him later. It was getting close to 2:00pm. For a couple of hours I distracted myself with the family, playing in the yard, but at about 4:30pm I couldn’t stand it any longer and called to check in. The nurse answered. She had just come from his room. She had clipped his nails, bathed and turned him, and given him a clean shave. The tenderness with which she described all of this care was beyond anything I could imagine. She knew how much he had always prized his physical appearance and in doing these things she was respecting him and allowing him to leave the earth in a dignified manner. She had given him Ativan and said that he was very sleepy, which was a relief.
At a little after 6:00pm I went to draw a bath. As soon as I turned the water on the phone rang and it was the nurse. “Emily?” She said. “Yes?” “He’s gone.” “Thank God,” I replied. But the overwhelming feeling I had was not the relief I had anticipated. It was sadness. We cried together on the phone. Then I sat on the edge of the tub and let it really hit me, and went to find my family. I was greeted by my older daughter who enveloped me in her arms and kissed my forehead.
So many have expressed sorrow regarding the heartbreaking circumstances surrounding my father’s death. And I have asked myself: Will I forever be haunted by my inability to be physically present with him? Will I replay my memory of the fear and sadness in his eyes, expressing perhaps his regret that important words were left unsaid?
But then I tell myself that we were among the lucky ones. Dad was not alone when he died. He was attended by familiar caregivers whose first thought was to make him comfortable. These compassionate professionals who knew and cared for him heroically took up the extra emotional burden in the absence of family members. And though I may not have been sitting by his side, I was very much with him in the days prior to his death and on that day itself. I have thought about those moments and in particular about our last call and how it would have been different had the world not been turned on its head and instead I had been there holding his hand. I imagine I would have sat in silence for much of the time. On the phone, however, my voice was a constant presence for him. I like to think that he closed his eyes and felt that I was in fact there, holding him.
And what of regrets over words left unsaid? An old friend of mine who lost his father years ago called me on Sunday. He offered that all that really matters is that you have told someone that you love them and that you know that they love you. It is true, isn’t it? Those words contain everything. Forgiveness, compassion, sadness, hope, acceptance… That is all that matters in the end. How fortunate we were to have exchanged that sentiment over and over in Dad’s last days. My hope is that he released any final regrets he had as we walked along together on his final journey, as he drifted off into the universe.