Radical honesty

Sometimes I've worried about what to post here, then I remember that I don't have a big readership, and I'm not important enough for anyone to look up. Someday, maybe, my kids might be interested in things I said, but honestly, I don't think they'll care, either.

So, really, I can say whatever I want.

There's a lot I want to say about everything that's going on, but first I need to talk about what's going on with me.

My mother needed to go into assisted living, and in July she finally did. It was years in the making. There's an extent to which she was a victim of the times she was born into, as well as the generational trauma both of her parents brought with them, but there were also important junctures in which she made the wrong choices. Some of them--maybe, really, just one of them--were so egregious that I could never forgive her, and if I shared it, I sincerely hope I wouldn't have to live through more of the gaslighting I suffered through when I was younger. But it's not my story to tell (and that is part of what makes her so unforgivable).

She was the primary caretaker of my autistic, nonverbal sister, and that was untenable as of last September. Between last November and this past March, it was a slog to have my mother removed as the guardian. Because her mental state was so compromised, she only intermittently realized that was the case. Her compromised state, along with her general disposition, had caused her to alienate her caretaker, and after she quit, I had had enough and finally told her she needed to go into assisted living. Shockingly, for reasons I'll never understand, she didn't fight me or get verbally abusive (this time), and within two weeks, she was in an apartment that one of my sisters would be happy to spend her days in as well (I mean, maybe).

The caretaker came back to be with my sister, but unfortunately, I think it's fair to say my mother had poisoned that well. In spite of my insistence that my sister needed to be fed a whole foods diet, the caretaker would sneak junk food to her. (I know this in part because my sister's day program sent me photos.) To understand why this was such a big deal, my sister had a BMI of 35, in no small part due to the amount of oil and butter my mother would give her. (By that I mean my mother would give her a small bowl of oil, sometimes with some soy sauce.) She would also let her eat all kinds of junk food, and didn't prioritize something like produce. Amazingly, my sister wasn't diabetic, but she does have a fatty liver. 

The caretaker was a hundred times better about my sister's diet than my mother, but I didn't like being lied to (or talked down to). What finally pushed me to dismiss her was when I came to the house to install a television with my husband and found her deeply asleep in the late afternoon while my sister was by herself. It was no longer safe to leave my sister there.

So, effectively, I had to step into the breach, which meant going from being at the house in the suburbs two days a week to being there seven, then, mercifully, five, once my oldest niece was able to do two nights. Which was great, until my niece, who is in college, had plans she wanted to keep. Unfortunately, that period coincided with my son, who is still at home, developing terrible withdrawal symptoms from his medication. 

This has been a rough two years, but one of the good things to come out of it is that when I hear things about pounding headaches and intrusive thoughts, I know to act immediately. What this meant in practice is that my husband stays in our home with our son when I have to be in the suburbs. I think, sadly, this will have to be the case for another few weeks (that's how medication tends to go). Neither of us got married so we could sleep alone, but we also didn't have children so we could leave them to their own devices. It's going to be a long six weeks, but then it will end.

Being in the house with my sister by myself has been very difficult for two reasons: one, my sister is on anti-seizure medication (because she had a frightening seizure five years ago) and two, the house developed a mouse problem in the last two months. There's something so perfect about the fact that my mother, who didn't think she needed to move her dishes from the table to the sink if someone else was in the house, never had a mouse problem in this house, but I do, in spite of the fact that I don't leave food out and clear dirty dishes out of the sink immediately. The exterminator has come three times, and the cleaners now come once a week. I HATE mice--they set my nervous system on edge, and you can sneer at me all you want, but that won't change it--and being around them is agony, especially when they crawl into the couch I used to sit on.

That problem may be solved (though I don't have my hopes up). My sister's anti-seizure meds are another story. One of the side effects is that it makes you agitated, and in her it has manifested as a lot of shouting, yelling, screaming, hollering, and just generally being loud and unpleasant. It's hard to be patient, and it's hard to be around, and because of the mouse and cold weather, it's been hard for me to find a place to retreat. I also kept getting notices from her program that she was agitated, with similar loud behavior, but also being intrusive with her peers. I was worried that she was having trouble adjusting to some of the changes (and felt terrible). But two weeks ago, after I remembered my dentist saying something about caffeine and teeth (my sister's teeth are another story), I removed caffeine from my diet and thought it wouldn't be a terrible thing for my sister not to have any, either. 

Within three days, the results were pretty dramatic. She wasn't shouting nearly as much, she was calmer and less manic in general, and she was sleeping much better. I believe in the power of diet (in large part because that's the only thing I feel like I can safely manipulate), but this was notable. On a hunch, my husband and I looked up the interaction with her medication and caffeine, and I was livid when I found that caffeine can, in effect, inhibit the "anti-convulsant effects" of the medication. When I thought about all of the times my mother would give my sister coffee to control her, I was outraged all over again.

This is one of my longer posts, because it's a lot. I have to handle the vast majority of it on my own, with some significant help from my husband, but as I said, I'm pretty much on my own on the weekends for the next month and a half. It's a lot, and I'm bitter about how much of it I'm being left to handle on my own and, frankly, without a lot of sympathy (and I don't mean from my husband and children, who are upset about how much time I have to spend). I also find myself having to manage bills for the house, even if I'm not paying them. Managing my sister's affairs is not nothing, and then when I had to step into the breach to fix an insurance issue for my mother, that was a lot of time I could ill afford to lose. I get it: people have things to do, but SO DO I. And this year has driven home for me how much more people and their time are valued when someone else is willing to pay for it. I work--HARD--but because I don't get compensated for it, I'm not valued, and in fact I'm seen as an expendable resource. It's really, really disconcerting when people in your family treat you that way, but here we are.

Not only do I not get paid for my work, it costs me money. Between the social security payments my sister gets, the small sum my father sends, and the amount of money available for personal care assistance, I can barely afford five days of care taking. That allows me to replenish my mental health as well as that of my husband and son, but it means there is no cushion for groceries or clothing or anything else. There was money--a significant amount--but one of the last things my mother did before she lost guardianship was spend it on who knows what, and it might as well be in the wind.

Some of this might be easier if we moved into the house in the suburbs, but my son adamantly doesn't want to, and I don't want to give up the home I've been in for almost three decades. It's worth some money to me to keep my sister safe and keep my sanity. So in the meantime I'm sitting on the weekends with what's left of my mother's furniture in a house that's riddled with at least one mouse, by myself. But at least I'm giving my sister the healthy food she needs, and being attentive to her needs. That's worth something, even if only to me.

Alright. I think that's most of what I needed to get off my chest. Now I can move onto the other issues. Those are much easier.

Deb in the City