What was Dad saying? He couldn’t go down to eat in the dining room. Someone dropped off a bag of food in front of his apartment every day at 4PM. It had his dinner for the evening and his lunch for the following day. They had stopped the bridge games, the movies, and the speakers’ series. The gym staff and activities staff had to stay home. He had received a circular that wandering the hallways was forbidden. House arrest, he called it. He could watch television and use his computer. I pictured him watching hour after hour of Pawn Shop Stars. His eyes which sparkled so often in conversation or deep enjoyment, with no hint of a twinkle. This was week two of the COVID lock down.
I was three thousand miles away. I’d last visited Dad in November. I had told him that I’d be back in February or March. But the night before I was to go home, after Dad, Amy and I had said our farewells, I couldn’t get my heart rate to settle. It started at about 9PM. I was in one of the guest rooms at the Summit, Dad’s independent living facility. I had been channel surfing, trying to find a show to doze off to. Or I dropped the TV remote. Or I got up to use the bathroom. Or I was upset with one of the talking heads on the news. I’m not sure what triggered the event, but suddenly, my heart was beating as if I had been climbing a steep hill on my bicycle for five or ten minutes. This will pass, I said, to myself. This will pass, I said again to myself several minutes later. At about 10PM, I told Amy that my heart rate was elevated, and I couldn’t fall asleep.
“Should we do something?” she asked.
“No,” I said confidently. While I wanted to let her know that all was not well, I didn’t want to make a big deal. “But I’m going to schedule an appointment with a cardiologist.” I’d been putting off the cardiologist for at least a year, maybe two. These high heart rate incidents had come so irregularly, and until now, not lasted more than a few minutes. How often? Once in three months, then twice in a week, then nothing for another two months. A minute here. A few seconds there. These were blips. My health was good. Maybe even excellent. Each time my heartrate quickened without an exercise trigger (before now) I had talked myself into thinking it was nothing.
By the time I got in to see a cardiologist – Dr. T came recommended by acquaintances and my GP -- there were already news reports of a virus sweeping China, a bad one that would almost certainly hit the US, unless we committed to serious actions. Everyone said to worry. The pre-response was being politicized. There was not going to be a smooth, consistent roll-out of information on what we should expect or how we should respond as communities.
At my second appointment with Dr. T, when he was going to go over the results of the various tests he’d ordered, an echocardiogram and a two-week stint attached to a Halter Monitor, we chit-chatted only briefly about the virus. Dr. T didn’t want me to worry, but he was referring me to Dr. W at Stanford, a mitral valve heart disease specialist, for surgery. I should not put this off. I should take the next available appointment.
And so I found that just as I and the rest of the country seemed to be hoping that COVID would spare us, I would be having heart surgery. I did not need another test. I was not going to self-correct. There was no medicine Dr. T could offer me.
Dr. Grainer, my childhood doctor, never mentioned anything scary like heart surgery. I was born with a heart murmur. He told me this when I was sixteen (and he was retiring). When I left home, he said, I was going to have to take care of my own health. I should be sure to tell every new doctor who I met over the course of my long life, that my heart beat Lub-de-dub, not Lub-dub. It was no big deal. It would probably amount to nothing. Lots of people had heart murmurs. He didn’t want me to worry.
So I didn’t think of my Lub-de-dub when Grandma told me her father died of a heart attack. Nor did I think much about it when I heard that her brothers Albert and Herbert died young from bad hearts. And no one told me that Aunt Hilda needed, and then had, mitral valve repair surgery when she was eighty. If Cousin Ellen once told me that she had a mitral valve replacement at a young age, I forgot. Dad never mentioned that he had a heart murmur, did Dr. Grainer not tell him?
But now I had heart disease. Dr. W picked up a pull-apart model of a heart. The mitral valve was discolored from being touched so often. That was his specialty and my problem, mitral valves. He demonstrated how a normal valve worked. Then he opened up a laminated booklet and showed what my heart was doing: Rather than pushing all the blood from the left atrium into the left ventricle, my mitral valve didn’t form a tight seal. Blood was washing back to the atrium and my left ventricle was larger than it should be. Only a surgery to fix the mitral valve leak could stop my heart from “remodeling” further. He handed me a brochure and showed me the program website.
“Could it remodel back to the way it should be?” I asked.
“At your age, doubtful. Our goal is to keep things from getting worse. We want to keep you healthy.”
My cousin Dr. Randy, when I sent him the various lab results, even before this visit to Dr. W, told me that I was on track for a heart attack. He was the one who told me about Aunt Hilda, his mother-in-law. Just like me, Aunt Hilda had underplayed warning episodes. If he and her daughters had not talked her into the surgery, Aunt Hilda wouldn’t have been healthy until her nineties. Be prepared for surgery, Dr. Randy said even before my second visit to Dr. T.
Dr. W repaired several mitral valves each week. He was training the next generations of heart surgeons. I would be very well attended to. I would do just fine. His scheduler came in. The next opening was two months away in April. I opened my phone to enter the date. But before I’d even completed this action, another staff person came in. The scheduler stepped out for a minute so they could speak. Amy and I asked Dr. W if we could take the trip we were contemplating to Africa in June. He asked us about our planned activities and assured us that I’d be fine on such a trip. He smiled.
The scheduler came back in and said that there was now an opening in two weeks. If I wanted to take this opening, I would spend the rest of the day here. They had a talk starting in 15 minutes that we should attend. It would outline what to expect in the surgery, what to expect in the hospital for week following surgery, and how I would complete the healing process when they sent me home. Amy and Dr. W looked at me. “May as well get this over with,” I said.
Driving home to Berkeley after the various meetings and tests at Stanford, Amy and I discussed everything on the punch list for the next six or eight weeks: what we’d need to postpone, who we’d have to call, and what help we might me. I’m enough of a fatalist that I wanted to write or call as many close family members and friends as possible to tell them what was up. I didn’t want Amy to be cold calling people if something went wrong. I was particularly concerned with how I was going to spin this with Dad. I didn’t want to be alarmist, but the unvarnished truth sounded alarming. My heart was going to be taken off-line for several hours. Dr. W and team were going to put a Goretex sleeve around my mitral valve so it would hold its shape better, and they were going to clip the little leaflets so the valve flap could get a better seal. Talk about remodeling! I didn’t want Dad to worry. I just wanted Dad to know.
Since time immemorial, a typical phone conversation with Dad was him firing questions at me. I tried to imagine what he might ask me so I could have answers that sounded ho-hum, matter of fact, no-big-deal. I read that eight minutes is enough time to make a meaningful connection on the phone. I outlined my half of the eight minutes. I would cover Aunt Hilda’s surgery and full recovery and ask him if he had a heart murmur. Then I’d give him the dates and let him know that Amy would be in regular contact with him.
“I don’t have a heart murmur,” Dad said. “Hilda had surgery?” I said yes that I had the same problem as Hilda. Then Dad turned to the weather and a host of other topics that seemed a bit off course. Was this denial? Could he not hear me? Declining cognition? It was hard to tell.
I spoke to Dad once or twice during my week at Stanford. Though I felt beat up and weak day in and day out, I told Dad that things were fine, that I’d come visit him again soon, as soon as I felt well, and they got this virus-thing under control. But when would they get this virus under control?
I was glad to have a nice home to go back to in the Berkeley hills. Things looked more or less normal when you looked out the window. I wasn’t planning on going to the grocery store for a few weeks because of the surgery. Others were going to bring us food and help with errands.
But Dad reported he was under house arrest. Was he joking? Or was being stuck in his apartment bringing back bad childhood memories? I remembered he’d used the term before. When was that? What was he describing?
I landed on the months he spent back in Germany after his “big adventure” with his aunt and uncle in Belgium.[1] After the Nazis invaded Germany, Grandma and Grandpa couldn’t find their children. Under the care of Grandma’s sister, Dad and his sisters fled on foot towards France. When they were turned around by the Nazis, they returned to their home in Mechelen. It took Grandma and Grandpa several months to be able to figure out how to get word to them. Then, the decision was made, they would go “home,” to Berleburg.
While the children had been in Belgium, Grandma and Grandpa had been forced to sell their home. They were bunking in a couple of rooms upstairs. There was no room for Dad and Aunt Hilda, so Grandma and Grandpa arranged for them to go to an orphanage in Frankfurt. There, the thinking was, they would be with other children and go to school. It was also, I think, so they wouldn’t have to be under house arrest in two little rooms in Berleburg. Perhaps the most pressing reason for sending them off was that Grandma and Grandpa needed to come up with the means (monetary and administrative) to get Lucie a visa back into Germany. She did not qualify because she was just over sixteen and considered an adult.
Off went twelve-year-old Dad and fourteen-year-old Aunt Hilda to the bleakest place they had been forced to spend time. Chatting up their new room- and classmates, they found out that most of the other children had no parents or had lost touch with their parents. They must have been a confused and terrified lot, rather than a fun-loving group of children looking towards a bright future. Aunt Hilda said she barely ate; the food was so awful. Dad said it was potatoes, potato porridge, and an occasional rutabaga. Dad was also appalled that they had to Daven before and after eating.
Was this what Dad was thinking about? That there would never be more good times? That he’d been under house arrest until he died. It was not the exact tone of what was reported in the news. But the term “lock down” had certainly entered the lexicon. We were all – assuming you had the ways and means – encouraged to stay in your house. If you didn’t, well….
It wasn’t until September until I got to Rochester to visit Dad. Amy and I drove cross country. (We were also escaping the terrible air in California). Dad looked more or less like his old self sitting in his recliner, TV on full volume, COVID mask hanging off his right ear. His eyes lit up when he saw us. I’m not sure mine did. Dad’s apartment was filled with pale yellow surgical masks. They hung off the backs of chairs, were piled on the kitchen table, were next to the TV, the kitchen sink, and were slung over the bathroom closet handles.
“Do they clean this place?” Amy asked in a stage whisper. Dad said yes but he wasn’t sure the last time they’d been through. Nor could he remember his log-in code to use his computer. He wanted me to check in bank accounts. He hadn’t balanced it in some time. I started on the bank accounts. Amy started on the cleaning.
I called Dad’s doctor to find out when she’d seen him last and how she thought he was doing. Dad had been Dr. Jenkins’ patient since he moved to the Summit. Dr. Jenkins saw all the residents. She said she’d visited Dad twice in the past six months. He hadn’t had COVID (yet), which was great. She hadn’t changed his meds. She thought he was doing well for someone in his 90s. Of course, he still had the same old problems that were never going to go away: neuropathy, arthritis, COPD, and vascular dementia….
“Wait, wait,” I interrupted. “Dementia? What’s vascular dementia?”
Dr. Jenkins told me that when the heart doesn’t pump consistently enough or strongly enough, or when the blood vessels in the brain lose their elasticity, memory and thought processes can become impaired. It’s not plaques like Alzheimer’s but a different type of memory loss. “In your dad’s case, he has mitral valve disease. He is not as quick on his feet as he used to be, nor as mentally nimble.”
“Mitral valve problems, he never told me.”
When I got off the phone, I thought about those two years (or so) when I did not seek treatment for my irregular heart rhythms. I could see where I might have gotten this head-in-the-sand approach to health from Dad. It had not served me well.
I realized that I was going to have to step in to help Dad take care of himself. While he had been managing well enough till now, he needed help and would never ask for it.
Dad had been lucky enough to survive house arrest in Germany, and with a COVID vaccine on the horizon, he would likely survive this lockdown. But Dad was not going to survive forever. Just like Dad did for his parents, and I did for my mother, I would be with Dad when the sparkle left his eyes for good. It wasn’t just a sense of duty (though I certainly felt that), but because I loved him, head-in-the sand attitude, and all the rest.
I would have felt the same way even if I had not recently had heart surgery. But after the week at Stanford--feeling so weak and helpless, not having a clue as to when I’d feel better, or if, I felt better prepared for what would eventually come. I would remind Dad that like the other journeys of his life, he was prepared, and all who loved him would still be here for him, remembering his love, his kindness, and his stories. Maybe, just maybe, in this process my own heart would complete its healing.
[1] Dad said that when he was told he was going the Belgium, he thought he was going on a “big adventure.” He lived with his aunt and uncle in Mechelen from December 1938 until the fall of 1940.
This is so well written and engaging. Really seamless how you bring the past and present together and I also appreciate you you manage some humor in the midst of such hard topics
This is beautifully written and so difficult. And so deep the way you connect the times and situations. Also so important about how we share or do not share health information with family members and when. I hope your heart is doing well now. Sending lots of love to you and all the family. Wow.