On Monday, I said a final goodbye to my father. That is, I looked at him made up and lying in his casket in the funeral home. An hour later, my wife and I watched as they lowered the casket into his concrete vault, and shortly after, lowered his casket and vault into his plot at the cemetery.
But what does this have to do with Dar, the subject of this blog? Oh, we’ll get there!
After Dad was first diagnosed with dementia, we hired a person to come to his house every day. Months later, it became clear that being left alone at home wasn’t ideal for him. The breaking point was a day that he went walking to the library, and fell, and forgot where he was. We couldn’t lock him in his own house, especially with all the ways that he might have hurt himself there.
And so we paid to put him in a residential facility. He looked at several and chose one in Fairfield. At this place, they checked on him every four hours. He couldn’t hurt himself or leave. My main issue was not with the facility, but with Dad: he refused to see anyone. We paid people to walk him around the grounds of the facility and eat and talk with the other residents. But he basically had no interest in talking to anyone. Which in some ways reminds me of his grandson, Dar.
With Dad’s anti-social tendencies, I felt it was important that he have a working TV and DVD player. Indeed, we set that up. But for some reason, it never seemed to work. Or that is, Dad would hit buttons, and he could never get back to regular TV channels or the DVD menu. I wrote down everything he had to do and I taped these instructions to the wall next to his bed. I labeled the remotes. But it was never enough. When I would visit, the TV/DVD player wouldn’t be working for him. I would press a few buttons to get it back, which would be fine, but I would know that he’d lose it within hours of my departure. I begged the staff to help, but knowledge of TV/DVD tech wasn’t really part of their jobs. So when I visited Dad, he would either be napping or reading books. Which I guess is okay, but I wanted more for him.
Only while writing this am I realizing that we could have bought Dad an iPad that he might have found easier. On the other hand, he never figured out the “swipe” function on the iPhone we got him. We had to downgrade back to a flip phone, and he soon lost interest in that as well. So maybe he wouldn’t have figured out an iPad, but we might have tried. No one ever suggested it.
Instead, partly because of the TV/DVD problem, partly to save him monthly money, partly because he said he always wanted to live in Berkeley, partly to make it easier to attend him, partly so that he could see his grandkids on the regular, we moved him into our in-law unit. At the time, he was 76. We thought he’d be there 20 years.
He lasted only six months.
I solved the TV/DVD problem, by coming in every day and making sure it was working. I asked Dad if he wanted regular TV, like CNN. He said he didn’t. When I told him that Aretha Franklin died, he didn’t seem that interested. When I told him that Burt Reynolds died, he didn’t seem that interested. Maybe he didn’t want to hear about death?
One time I brought him a newspaper; he didn’t even look at it. He had given up on the internet way before that day he fell. Thus I took him at his word that he didn’t want to keep up with things. I certainly didn’t want to give him (or anyone) the latest Trump news. On the other hand, sometimes I overruled his wishes, as when it came to exercise. I forced him to take walks with me to the local park. He would always ask, when are we going home? I would push it, but then, not.
With a clearer conscience, I generally tried to keep him happy with his and my large (combined) DVD collection. With his bad hearing, Dad required subtitles, but could never figure out how to turn on the subtitles (hint: the button says “subtitles”). Yet he did at least figure out how to press “play” to restart a movie on DVD that had recently concluded. And he seemed happy to watch the same movie again and again.
But was he? Dar also seems happy to watch the same YouTube videos on his iPad over and over again. But is he?
I would usually tell Dad that he should change his movie, but more often than not, he would overrule me. On some level I respect that. I understand how you can get more out of re-watching a strong movie than taking a chance on another one. Still, I tended to suggest that he change movies. For his part, he tended to want one specific one; he asked for it over and over and over again.
Dad’s favorite film of his last six months was Pat Garrett and Billy the Kid. Not exactly Casablanca or Taxi Driver (which we also own). By that I mean, it’s not really a famously great film…most of my friends haven’t seen it. It’s a 1973 Sam Peckinpah western about…well, the title. It also features the rare sight of Bob Dylan acting onscreen and the rare sound of his (approved, then-new) music.
My father had an unusual relationship to music. I think he thought that most musicians were vaguely disreputable, or at least that they didn’t deserve their esteemed reputations. Dad rarely played music in his house throughout his life. As a sometime poet, I suspect Dad felt that rock and roll had stolen something from poetry.
That said, Dad made an exception for Bob Dylan. He loved Dylan. He even owned some Dylan CDs. But he had no CD player on which to play them. I feel somewhat certain that a major attraction of the Pat Garrett movie was the chance to see and hear Dylan.
But I wonder if there was more to it. About three times, the Pat Garrett soundtrack plays a song called “Knockin’ on Heaven’s Door.” The song is so ingrained into our culture, it’s almost hard to believe Dylan wrote it for this 1973 film; it feels like it was recovered from a folk tale or something. Was Dad…trying to hear that song? I never asked him.
I told a version of this story at Dad’s service. I played Dylan’s “Knockin’ on Heaven’s Door.” I wasn’t really sure if people should listen to all of it, but as it played, hearing it all felt right. We all listened. When it was over, organically, without my pushing it either way, the service ended in a lot of hugs.
For the record, I don’t feel like I’m knock-knock-knockin’ on heaven’s door. Neither of my parents lived to see a 78th birthday, but I somehow think I can make it. Maybe I’m being naïve?
Dad may have been more depressed than I realized. Dad may have been suffering more than I realized. Every day, I asked him what I could do for him. Outside of food and TV, he insisted that he didn’t need anything. That may have been pride talking. Or not talking. Let me be clear: Dad did not commit suicide. The coroner’s listed cause of death is “Atherosclerotic and Hypertensive Cardiovascular Disease.” He just collapsed. Daily, I gave him his medication, but I had NO idea he was at death’s door; I wish I had thought to hug him or tell him “I love you” more often, for example the last time I saw him alive.
Speaking of pride talking and not talking, Dad’s grandson, Dar, does a lot of talking-not-talking. That’s another case where we’re never sure how much he’s suffering. We let him have free use of YouTube on his iPad (which results in us hearing a lot of the same Sesame Street songs over and over), but…he still screams.
100 years from now, will there be a suffer-o-meter to gauge people better than we can right now? Will people look back on this time as fairly barbaric, when people had to guess at maladies, the way that we now look at people in George Washington’s time not knowing about germs and viruses?
What happens if and when we put Dar in a residential facility with an iPad? Does his suffering lessen? Or only ours? Who are we to make these decisions? Am I only giving Dad and Dar what I would want, because I like screen content and have made a career out of looking at it? Am I projecting my solutions onto their problems, without understanding either?
In Ron Suskind’s book “Life, Animated,” he talks about his late-90s concern that his autistic son would remain in their basement watching Disney films for his entire life. This is before the iPad era, before Disney films seemed to teach his kid how to talk. But I wonder if Suskind’s concern was more for his son’s well-being, or more for his own guilt that that was his best idea for his kid.
Speaking of 1970s movies that you’ve never seen, in 1971, world-renowned director Ingmar Bergman made his first and last film in English, The Touch (or Beroringen in Swedish). I studied this film as part of my dissertation and later book, “Star Actors in the Hollywood Renaissance: Representing Rough Rebels.” At one point of the movie, Max Von Sydow yells at Bibi Andersson, “Suffering can’t just go on and on. There has to be an end to it!” This line resonated with me. It makes sense in terms of the film’s story, but in my book I connected the line to a larger narrative, suggesting that Bergman might have been repudiating some of the Hollywood Renaissance as represented by films like Easy Rider, Five Easy Pieces, The Wild Bunch, Midnight Cowboy, and Getting Straight (the latter starring Elliott Gould, who also stars in The Touch, the first and last time Bergman used an American star). Bergman might have been saying that films like these (perhaps influenced by some older Bergman films) were too much about suffering, and that at some point one had to end suffering. In Bergman’s The Seventh Seal, the knight eventually loses his chess game with Death. My dad lost his chess game with Death. As far as I can tell, the real Von Sydow won his chess game with Death (he’ll be 90 in a month, and he’s acting in Star Wars movies). But in The Touch Von Sydow suggests non-fatal ways to end suffering.
Did we let Dad suffer too long? Are we letting Dar suffer too long? Are we letting ourselves suffer too long? We’re doing what we can, and we’re doing what we can think of. But I wonder if it’s really enough. Looking at Dad this week in his casket, I really, truly wonder if it’s enough.