Caregiving, Autism, and Depression

We’re less than a week into the new year and already it’s been terrible for me. I’m a caregiver for a guy with autism which has it’s ups and downs like any job. Lately it’s been down. The work hasn’t changed much; I plan and cook meals, remind him to shower and groom, pay the bills, and ensure the apartment is clean. The problems began on Monday afternoon. For Christmas, he got a present that makes his normal bike a stationary bike, so he can ride inside. It’s too cold and too wet to ride outside much during the winter. It’s a good idea in theory, but in practice it causes us a couple of problems. We store his bike in our dining room that we use as storage, but he wants to ride the bike in his room. That way he can watch TV or play video games while he’s pedaling. The problem is that the device doesn’t allow you to move the bike around when it’s set up. It’s best to set it up and leave it in one place, he doesn’t have space to leave the bike set up in his room. We end up setting it up every time he wants to ride it. If you were to take it outside you’d run into a similar problem even if you did leave in one place inside your house. The set up isn’t particularly difficult, but it’s not so easy that it only takes a minute or two. What all that means is that I usually only half way set it up when he rides. I don’t attach the magnetic resistance device and I don’t use the bolt covers that came with the device. Instead I trust the ones already on the bike, which it turns out may have been a mistake. While riding the bike in his room on Monday afternoon, just as I was just about to start dinner, I heard a crash in his room. I rushed in, he and the bike had fallen into the bookshelf he was riding next to. The fall may have been the result of improper set up or riding while trying to hold a video game controller. Either way it left him deeply upset with a room full of stuff on the floor. The fall knocked most of the stuff that off the bookshelf. Dealing with an upset autistic person isn’t the most fun you can have. The restraint most of us show when we’re angry or depressed isn’t there for an autistic person. In this sort of situation I expect some kind of tantrum. To ward that off, I do my best to remain calm and just start cleaning up the mess or solving the problem. I make sure he doesn’t hurt himself, but beyond that I let him shake his fists and express his distress. After a while he usually calms down and I can get him to help me pick stuff up or do whatever needs doing. I didn’t work out that way this time. He spent the next few days depressed and out of whack.

I feel partially to blame for the sadness lingering, but not entirely. It’s been cold, here in Oregon, since the beginning of the year. The refrain he repeats over and over is ‘snow is bad for your health.’ I don’t know what that means, but I do know he hates snow and he gets anxious at the possibility of snow. The weather, falling off his bike, and the post-holiday blues culminated in a furious depression. I blame myself, but I don’t mean setting the bike up like I did, though I have kicked myself for that plenty. Mid-tantrum, or freakout as I like to call them, I was helping him pick up stuff and I mentioned he had a lot of stuff. I didn’t mean it in a mean-spirited or accusatory way, but that’s how he took it. The next morning as I was going through my morning exercise routine he told me he thought he had too much stuff. That’s a reasonable thought to have because he collects actions figures and has a bunch of toy swords, guns, and Lego. Everything a twelve year old boy would love to have. I didn’t think much of it. I didn’t even completely connect it to my aside the day before. Then, as I was finishing exercising, he was getting out of the shower visibly, well aurally, upset and told me he wanted to get rid of his stuff. I connected it then to what I had said and felt terrible, but figured it would pass. The problem with depressed people is they aren’t clear about what’s causing their depression. I have no idea what causes mine. Autism compounds this because autistic people are often poor communicators generally. Especially so with stuff like moods and emotions. That leaves you guessing at what the problem is from tangential clues and what you can do to try and fix it. We ran a few errands Tuesday morning, so I assumed he would cheer him up while we were out. He often ends up feeling a little cooped up in the house without much to do. It didn’t help, but I did my best to talk him through it. We’ve, I’ve, designated Tuesdays as our game day, my hope was that by the end of the day he’d feel good. Playing a nice long board game and having social interaction would improve his mood I thought. I didn’t. I tried making him his favorite foods and tried to entertain him by helping him bake sweets.  I worked it out so he could hang out with his brother. Nothing helped. Not the pizza he chose for our game day meal, shrimp with bacon bits. The baking, the games, nothing improved his mood for more than a few minutes. Depression is a bitch.

In the middle of this personal chaos something a little bit weird happened. I went out on Wednesday morning at about six to smoke my first cigarette of the day as usual. It was freezing cold, but quiet and dark like most mornings. Mid-cigarette a girl approached me, crying and shivering from the cold. She asked me if I had an extra blanket, so I obliged and went inside to find one. Then I gave her a glass of water and she left. She wished me happy holidays, which was odd, but what can you say beyond thank you if you’re in her situation. It was dark so I never even saw what she looked like or said more than a couple sentences to her. That’s how the rest of the world has been to me while I’ve been trying to soothe this depression. It pops in and out for a few minutes, but I never see it in any detail. On some level that’s how decent people let terrible things happen. We’re so consumed by the minutiae and responsibilities of our own lives that we don’t have the time or energy to stop larger evils. But then how decent are we really if we’re not fighting evil?

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