So guys, my dad has recently been diagnosed with Alzheimer's. He is 86, so he's had a great run, and it seems to be mild right now, but it's not like it's going to get any better. I was just out there and I'm pleased to report that he doesn't seem to be unhappy. He just seems to kind of not-be-there sometimes. He was an engineer in his former life, so for him to space out once in a while and be totally unaware of what's happening is not new. It's just different now, and maybe happening more often? It's hard to tell.
My sis thinks things have been off with him for a couple of years, but it takes ages and lots of scans to get diagnosed with this thing, and even then they apparently don't know it for sure unless they do an autopsy after you die. Scans can pick up likely signs of amyloid plaques but you can't confirm them without going in there and looking at them, and there's some controversy about whether or not amyloid plaques even cause Alzheimer's symptoms or if they just tend to co-occur, but I don't wanna get into all that right now. Anyway, he's been off for a couple of years and now we know why.
Obviously I need to be out there as much as possible while he still recognizes me. I was supposed to go over Christmas but both my parents got Covid, so I had to cancel. I finally got there in mid-January and I'm still reeling from this trip.
Strap on your seat belts. This is a long story and it gets kinda rocky.
The main problem with my dad having Alzheimer's, besides the fact that he sometimes forgets to put on clothes (!), is my mother. Mom has the same severe anxiety disorder that I do, and possibly also ADHD (which she thinks is made up), but she never got treatment like I did. What she does instead is try to control everything and everyone around her so she can have some sense of certainty, and this hasn't gotten better in the face of my dad's diagnosis. For the record, this drives everyone around her figuratively and literally crazy, and people, if you need mental health help and you don't want to get it for you, please oh please do it for the people who have to be around you. Crazy people make sane people crazy. Okay? Okay.
My mom won't entertain any kind of long term plan. There's no point in asking her about what she wants in possible assisted living for my dad, or memory care if that eventually warrants, because as far as she's concerned, he's fine and he's not going to get any worse and they can't afford that, anyway. (They totally can.) I've got her going to an Alzheimer's support group for spouses, which is a big step in the right direction. My sis is also trying to get her to accept more help around the house so they can stay in it, but that's been an uphill battle all the way.
Also, I don't trust her. Not that she'd deliberately neglect my dad or abuse him, but see above re: he's fine and he's not going to get any worse. Which means that she may not wanna do what needs doing, get him treatment he needs, or otherwise do anything that disturbs her view of the universe. She was also emotionally abusive to us when we were kids, and any illness that impacts the brain is gonna impact emotions and I don't want her brushing him aside if he gets sad or angry or any of the fallout that you would normally get when somebody slaps you with a life-changing and in this case, life-ending diagnosis (eventually).
Now, my sister's there, and she's boots on the ground, so I'm deferring to her and doing what she asks me to do. But she doesn't live with him every day and may not see what's going on with him. My dad was born just before WWII and Nothing Bothers Him so it's not like he'd say he's unhappy, he's scared or anything like that. You kind of have to intuit this from his behavior, like you would a cat. (Too bad people don't have tails. "Hey, Dad's tail is down, I'm gonna go find out what's going on.")
Which brings us to this trip. First thing, Mom totally overscheduled us. I didn't push back on this nearly as hard as I should have, and that's on me, but being as I wanted to be with my dad, I was kind of stuck with whatever the plans were. Now I know better; I need one afternoon where I can lie in my hotel room, watch junk TV and munch on Gummi Bears. I'm autistic, baby, and peopling wears me out. Except my dad. The Australian Open was on and so all he wanted to do was watch tennis. I sat there with him and watched tennis for three hours and that was the best part of the trip. I still know nothing about tennis but much witty banter happened (between moments of spacing out).
The second thing is the emotional abuse. Several things have just kind of come to a head as far as that goes. It's hard to capture all the nuances of this in a single sentence but my sister and I were treated like we were little robots, and if my mom inputted the right data, we would turn around and cough up the right result without question or argument.
In my case, I hit puberty at about 100 mph when I was nine years old and began growing breasts, hips, the whole nine yards. I also shot up about six inches and made my full adult height before I was thirteen. My mom and apparently also the pediatrician interpreted this as "shes' getting fat." My mom walked into my room and asked me (again, I was nine) if I wanted to go on Weight Watchers or Nutri-system. I'm sure lots of nine-year-olds everywhere are able to determine the pros and cons of each and arrive at a satisfactory conclusion. Anyway, from then until I moved out it was forced dieting, forced exercise, "You can't have that, you're too fat" said in front of other people. "We're not going to visit your cousins if you're going to eat all the junk food in the house so you have to promise me you won't before we go" said in front of other people. I could go on, but I won't. The result was that I had an out of control eating disorder from then until about ten years ago, when I looked at all the effort and wasted time that had gone into trying to lose weight and decided I Just Wasn't Going To Do It Anymore.
Imagine my surprise when we watched some home videos and I saw myself at nine and I was -- not a fat kid. Fast forward to some more videos from when I was about 20 and -- I wasn't fat then either. If I'd stopped trying to lose weight when I was 180 lbs I'd probably still be there instead of way, way past it, but hey, this entire society tries to convince women they need to be so skinny that they disappear, and I know what I know now. (Part of what I know: Only between 5-15% of the population can lose more than 10% of body weight and keep it off for 5 years. Hundreds of studies from the last hundred years show that the rest of us gain it all back, usually with more, regardless of method used or the amount of time it takes to lose the weight -- yes, even bariatric surgery. Most of us then go on another diet or "lifestyle change" or "exercise plan" and do it over and over again, causing measurable heart damage each and every time, which probably accounts for the heart disease that people with "ob*sity" supposedly have because they are fat.) When you can't fix it, at least you can try not to do any more harm. And I can't fix it. Still trying to get my doc to accept this but I think we'll get there.
My sister, though. We had a Big Talk about this. My sister learned through watching my parents yell at me that she had to not do what I was doing, ie, having normal emotional reactions to things that a kid would have. There's a series of pictures of a photo shoot when I was maybe seven and my sis would have been four, maybe a youngish five. She remembers this photo shoot very cleary. I got upset about some of the poses they were trying to push me into and started to cry. Which of course made my makeup run and so my dad started yelling at me, which made me cry even harder. "So that's why you look red and blotchy in those pictures, because Mom insisted on going through with the photo shoot anyway," my sister told me. "And I learned I have to never ever cry."
Fast forward a few years to when my sister was seven. She was over at a friend's house and the dad came home from work and started a domestic abuse thing with the mom. She and her friend ran upstairs and hid in the closet until he stomped out again. While they were hiding in the closet, my sister decided not to tell my parents about this because she wasn't supposed to ever get scared.
That second story in particular hit me like a motherfucking Cat Five hurricane. I was furious for days, weeks; now I'm not furious anymore but I'm just totally, inexpressibly sad. And I feel like I didn't do my job. I was the big sis and I was supposed to protect her from things like that. I mean, logically, I was seven in the first incident and maybe nine in the second, and it's not like I didn't have my own shit going on. But logic often has nothing to do with the way people feel. Kind of like nine-year-olds who are told they have to lose weight because they are too fat and therefore they can't have birthday cake at the party like everyone else don't always smile cheerfully and say "Okay, Mom." That's just not how it works sometimes.
I mean, I knew this shit was happening to me, and if it was happening to me it had to be happening to my sister, but on some level I guess I thought she missed the worst of it. But she didn't. What happened to me is just easier to categorize and put a name to. My sister dealt with ceaseless, grinding attempts to turn her into a machine, which must have manifested in so many ways I'm not sure I can count them all. One of the big ones, though, is that she's sneaky. Not in a mean way, but she'll just not tell you stuff if she thinks you're not going to like it. She and her husband moved to South Korea, for example, to teach for a year, and she literally told my parents after all the contracts were signed, the airline tickets were purchased and there was no turning back without a huge lawsuit. My mom still freaked out six ways to Sunday. More so because she couldn't control it. (South Korea is, by the way, a First World country with literally the best health care system on the entire planet.)
So that's where I'm at. I'm sad, I'm worried and really, I'm not sure how to even begin to deal with all this. Yes, I have a therapist. I've had a therapist off and on most of my life and some have been bad and some have been good but all of them have helped me learn something. This one has helped me figure out that a big part of this monumental chip I have on my shoulder is about being pushed around and forced into things the way I was. I constantly expect that people are going to want me to be and act in ways that are convenient to them without any thought to what that means for me, and the only way not to do that is to explode in rage at them when they try it. Shockingly, this is not necessary. I am an adult and "No" is a complete sentence and I don't have to consent to certain cancer screenings or get into big political discussions or go out to bars on Friday nights. I have Options.
Except with my dad. The only option I have there is whether or not to show up.
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