My father is suffering from early-stage dementia. He fell a few weeks ago and landed in the hospital for nine days. I learned of it on day six, when the social worker, in desperation, googled me and called St. Mary’s College (where I work). St. Mary’s called me in the middle of Dar’s afternoon session. I interrupted session and put Dar in the car and we drove to the Fairfield hospital. And that leads me to the subject of today’s post: Dar is a major handful at hospitals and doctor’s offices.
Sometimes I think, well, they’re accustomed to lifelong conditions, so I can just tell them he has autism and he’s non-verbal and everything will be fine, right? Wrong. Dar can’t be trusted. He takes off his shoes and roams the hall. I have to keep chasing after him and apologizing to the nurses who tell me he shouldn’t walk around in bare feet. (Because of stray needles? Is that really less safe than walking around in the pad-socks they give out? Not a conversation I was ready to initiate.) Meanwhile I can’t hear or devote my attention to the many ladies trying to tell me about Dad’s many maladies.
Sometimes I can get Dar to remain in Dad’s room, mostly because there he can touch Dad’s RN’s hair. She doesn’t mind; I do. Then more of Dar’s tee-tee-tee-ing, to the point where I can barely hear a doctor who has kindly swung by. Occasionally I have to yell at Dar, which I hate doing, except that it’s effective.
I’m sure there’s an added emotional component, because with Dad’s illness, I’m losing my most direct connection to the generation before mine (my mother passed 11 years ago). It’s been true for quite a while that wifey and I can’t ask anyone what my childhood was like. I suppose there are parents out there, not realizing how lucky they are, who can say “does this look like the same ear infection that Daniel had as a kid?”, but we’re not them. Now we’re unwillingly entering a new stage, where the search for assisted living is in full effect. And then we’ve got Dar, who will always need assisted living. So I’m in the middle of the disability Oreo. Nobody wants to be the lard.
I guess I better stay healthy and stop thinking about Oreos, right? That brings me to a doctor’s appointment that I had this week. I have a nephrologist because I have glomular nephritis. No, that’s not a series of typos, thank you. I have blood and protein in my urine, but the good news is that I’ve had it for at least seven years, and perhaps a lot more than that. In other words, it’s stable, and it may even go away on its own with the prednisone that I’m now taking and the diet change that’s now in effect (we only found out about it this year). This particular visit, where my levels were way down, was quite heartening…except for Dar.
Dr. Wong, my nephrologist, has specifically told me it’s okay for me to bring family. (I believe a typical nephrologist patient list tends toward the elderly who are losing liver/kidney functions; I guess Dr. Wong long ago realized that the AARP set feels better/gets things done better with a relative close at hand.) But…Dar is a major distraction. His tee-tee-tee-ing makes it hard for me to absorb information about the minutiae of protein levels. Dr. Wong has a sink in the room we’re in, and Dar loves him some sink. He just turns on the cold, puts his hand under the tap, and lets that sweet sweet rushing cold water caress his hands. And I know that afterward, his shirt sleeves will look like he’s been clamming for hours. Dr. Wong and I kinda know each other now, so I ask if I can take off Dar’s shirt, and he says yes. So there’s shirtless Dar fondling the tap water. And that might have been fine. Except that he keeps getting his hand nearer the tap, and spraying the water. Dr. Wong says it’s fine, it’s only water. But it’s not. It’s dousing Dr. Wong’s computer mouse and the cables in back of the monitor. It’s creating a pool under the doctor’s massive, stood-up Physicians’ Desk Reference tome. This encyclopedia is going to look like “The Sun Also Rises” after Sam Malone read it in the bathtub. (Cheers shoutout!) Dr. Wong tells me not to worry because that’s all online now and doctors no longer bother with the physical book even though the company keeps sending new copies. I sigh. He runs behind the front desk and hangs out with the women there, who are all so nice. Dar doesn’t deserve their graces.
And to think, these are the “good old days.” By which I mean these are the days that we’ll look back on fondly when Dar does exactly the same things and he’s twice the age he is now, and it isn’t all that cute. I see autistic adults walking around and I want to watch them like a hawk, for cues for future guidance. However it’s rude to stare, and it’s even ruder to tell their caregiver, “Oh yeah my kid is autistic too!” So I glean things with sideways glances.
It’s a sideways world, and I’m in the middle of the Oreo. And yet, it’s probably harder to be Dar, right? I keep singing this song to Dar:
It’s hard to be you
It’s hard to be you
I wandered around, and finally found
Could make me be true
Could make me be blue
Or even be glad
Just to be sad
Thinking of you
It’s hard to be you