The last disease thing I watched was the ER midnight reruns back when my dad first got diagnosed. Anthony Edwards’ character dies of a brain tumor. My cousin Aimee was like that sounds excruciating, and it was, but I did it because it served was a blueprint, a sample of what it might be like.
Initially, I avoided this film about a lady professor’s descent into Alzheimer’s. Hologram Boss said it was depressing, and that was as good as police crime scene caution tape for me, but my mom said it was fine, so I gave it a go.
As a film, it’s quite simple. It’s not much different than a TV disease movie, simplistic and not great. What makes it remarkable is Julianne Moore’s performance and her scenes with Kristen Stewart, also believable and natural in this (is this pop star actress talented or does Julianne Moore make everyone up their game?) Everyone else in the flick is kind of like wallpaper, but I still found the film helpful. It helped to see this character lose it, to imagine what my dad might be grappling with and what we might expect in the future. Julianne Moore’s Alice says she wishes she had cancer instead–and I was so glad to hear that because I totally agree! If I could rank crap illnesses, dementia is worse than cancer, no competition.
Recently, I decided to be more open about dad’s dementia, as in, if it comes up in conversation, I won’t censor myself from mentioning it. When it’s this secret, it is more likely to torpedo my spirits. Maybe acting like it’s normal will make it feel more normal. Mom attended a lecture that said “people with dementia have left our world and cannot come back. All we can do is follow them into their world for a while.” That is tough. It is hard to just go with what Dad says and does, instead of trying to correct him and bring him back to the present (and in his case, since he has dementia, it’s not exactly like Alzheimer’s anyway. His short term memory, physical skills, and communication are shot but he still recognizes me and can get to my house). I recognize how my mom shuts down from time to time when dealing with the endless paperwork involved to get the right care, because I shut down too. I get a metaphysical and actual physical headache.
I thought I had found a neat trick to play on myself. I would pretend my father died in 2002 when we first found he had an aggressive brain tumor and that the person who is still here is his ghost. I thought, yeah, that could be comforting, because I see friends who have lost parents and miss them terribly, so I’m fortunate enough to see his ghost. I think it helped for like four hours, but when I shared the theory aloud, I checked my gut–yup, still hurt. I cannot Jedi mind-trick around this one.
But maybe that’s the point. You’re supposed to feel and get through the crap parts, there’s no secret circumventive passageway, etc. In the film, the character who can connect to Alice is the daughter who is an actress, which makes sense because actors are trained to be in the present, something necessary to get along with folks who now live in a different time-space continuum. I try to be as gentle with my dad as he is with me. He is the one person, after all, who loves me best of all in the world (everyone loves my kids more, as they should), and isn’t that something?