(The scene: Friday night at the parents' local Dairy Queen, where Mom has stopped for dinner due to mutual cravings for crunchy chicken and ice cream. Conversation has been recorded approximately, since er, no tape recorder.)

Counter Lady: Welcome to Dairy Queen, may I take your order?
Mom: Yeah, we'd like a (blah blah blah).
Me (J): To go.
Counter Lady: Okay then, would you like to wait for it?
Mom: Sure.

(We go over and sit at one of the tables. When we come in, it's about empty, but the place soon fills up. Now that I've got her alone...er, at least until everyone else walks in.)

J: Um, yeah. We need to talk.
M: About what?
J: The whole Dad thing. I'm warning you now, this is going to be a "come to Jesus" discussion here.
M: A... come to Jesus?
J: Yes. That's a saying that refers to having a conversation in which one um, needs a clue bat. In which a message needs to be delivered in a forceful manner.
M: Um...okay?
J: You need to do something about getting some kind of help for Dad. I am not kidding here. You guys are cruising for disaster at any moment here.
M: Well... I have been worried about that. I don't really know when the time is to take that step.
J: It's NOW, Mom. It should have been done already. Things are getting scary around here.
M: Did I tell you why we went to the doctor today?
J: No.
M: Your father has a bedsore-
J: His first.
M: -and I've been so afraid today that he was going to have to go into the hospital. Because your uncle put your aunt (note: this is Mom's older sister, who got MS at a young age and died long before I was born) into the home a few days before a birthday, and your grandfather died a few days before Kristen's birthday, and I was telling someone at work that your birthday was coming up, and I didn't want your father to have to go into the hospital around then. And I was afraid that the doctor was going to say I wasn't taking good enough care of him and he was going to have him taken away from me. Well, he was so nice, and he didn't do that, but he did say he was going to send over a physical therapist to help with your dad's shoulder freezing up, and he was going to send over some people to evaluate the house.

(I'm thinking at this point, "Wow, she's totally calm about that instead of doing the usual 'OMG someone's coming over Flight of the Bumblebee cleaning spree guilt n' shame panic' thing she does every time someone wants to come over. This is AMAZING. What the heck happened?")

J: Good for him! It's about time. Do you know when yet?
M: No, but probably in a week or two. He is just so nice.
J: What's his name?
M: Dr. (really generic Asian name- note that this is the first time I've gotten a doctor's name out of her since the first few years of Dad's disease). He is so nice. He lets me ask him questions-
J: Can you call him?
M: I have his e-mail. And he writes me back fast.
J: Good. I'd like you to ask him about what he thinks Dad needs in terms of care. Have you ever discussed that with him?
M: No... but I think that's why he's sending over the people, to get me gradually into it.
J: Good. But I think you should talk to him about it before then.
M: Oooh, look at that little boy's shoes!
J: Um, what? (I look over and see some 3-year-old with those shoes that have the lights in them.)
M: They are sooo cute!
J: Yeah, whatever. Back to the discussion here, Mom.
M: Look! They light up!
J: Geez, Mom, you're suddenly worse than me about bright shiny objects. Back to the discussion. Stop looking over there!
M: What is that on your ring?
J: I made a cover for it. You've seen this before. Stop it and pay attention.
M: I so have ADD, don't I?
J: You SO have ADD. You need that drug, whatever it's called.
M: Ritalin?
J: Yeah. Too bad it only lasts 4 hours and you need it ALL THE TIME.
M: No kidding.
J: Anyway. Back to the come to Jesus. You really need to talk to the doctor at some point. Or hell, give me his e-mail, though I don't know if he'd talk to me.
M: Well, (her boss's name) has told me that I should be getting 24-hour in-home care for him.
J: What about insurance? Does that cover anything?
M: It covers NOTHING. No in-home care, no convalescent home.
J: Oh, great.
M: I just can't afford that.
J: Have you tried Medicare?
M: No...but I assumed we wouldn't be eligible.
J: Maybe not, but it doesn't hurt to CHECK just in case.
M: It's all just so much money.
J: Well, I'm not saying to get 24-hour care (though God knows it's needed- oh, the joys of putting him to bed, y'all) or put him in a home necessarily yet, but you do need SOMETHING. Some kind of help at some point so you're not doing everything by yourself.
M: Yeah... your aunt said that too.
J: Good. Because coming home to see you guys is NERVEWRACKING. Every weekend I'm here, everyone's stressed out and crying and miserable.
M: Really?
J: Um, YEAH. I dread coming home. (at this point, I'm in a bad enough mood to decide to drop The Big Bomb I Shouldn't Drop on her, despite people streaming in who can probably hear this disturbing conversation. Call it "the clue anvil.") Look, every time you're dropping me off at home Sunday night, I'm hoping you get so sleepy you crash the car and we all die, just so this situation ENDS.

(Mom's eyes bug out of her head. Well, um, yeah.)

J: I'm not suicidal the rest of the time, mind you, but these weekends are that miserable and stressed out for me. I'm in a bad mood for days before and most of the week after I see y'all. Dave used to complain I was in a bad mood after seeing y'all, but now I think it's worse.
M: I never knew you thought about it all that much.
J: You have NO IDEA. And frankly, I just could not take thinking that my birthday weekend was going to end up being nothing but screaming and fighting over cleaning your house and being miserable. I have been a wreck all goddamned day thinking about this and dreading it. (Went to support group and was all drama-queen-angsty, was trying not to cry at work, annoyed the shit out of people on the Internet with endless whine about how Mom wouldn't listen to reason any other damn time I'd had this argument with her.)
M: Wow. I didn't know it was that bad for you.
J: I try to hide it as best I can, because I know you have it worse than I do and I can get away from it, and you can't. But honestly, this is frying my brain. And I can't take much more of this. You have to do SOMETHING. I am not kidding.
M: I know. I just...
J: I sent you that link today, and I sent you more lists of numbers to call after you left work today. I have them printed out. You need to start calling places. Okay, I don't know how much they cost and maybe you still can't afford them, but at least you'd KNOW what your options were.
M: Okay.
J: Can you make phone calls at work?
M: No. I'd have to wait until I get Friday afternoons off again in May. But that's in a week.
J: Then wait until then. But you gotta start calling. And if every single option you try is too expensive and you really are SOL, then I won't nag you any more and we'll just have to let disaster happen. But I'd rather try to avoid that if at all possible.
M: I know.
J: Because if something happens to you, I have to start taking care of him. And we all know I suck at that.
Counter Lady: Your order's ready.

(The scene: Saturday night, in the car, picking up Chinese food for dinner, the next time I get her alone. No cleaning has been done all of Saturday, due to Dad's usual issues.)
J: Okay. Come to Jesus discussion again.
M: Okay.
J: At this point in time, he needs other help besides us. I mean, even if both of us quit our jobs and had no income and I moved home to help you with him, I don't think the both of us could even DO it at this point. And we're not trained professionals either. And I suck at caretaking.
M: But I don't want to put him in a home! I realize now how horrible it was for your grandfather when I put your grandmother in a home! He had nothing to do, he was so lonely, he got her taken out of that one home, he'd walk her around until she got sunburned. And he was so lonely at the home we put him into. It was AWFUL. I can't do that to your father.
J: Mom, wasn't Grandmummy badly enough off that Granddaddy couldn't take care of her any more?
M: Well, yes.
J: Then it had to happen, didn't it? Things would have gone to disaster had you not put her in. You had to, no matter how horrible it was.
M: I guess so.
J: Look, you KNOW I hate rest homes. You know I do. But when things are bad enough that I start thinking it might be a good idea, you know I'm serious.
M: But they cost... (long discussion of it costing something like $6600 a month for a home, but since I am not good at numbers or doing math in my head, it all kind of flew by me).
J: I'm not saying we have to put him into a home yet. I don't think he's that badly off yet. But what I'm saying is, if it has to happen, then it's going to have to happen. We can't take care of him by ourselves forever.
M: I know... that's what everyone keeps saying to me. I was talking to this one client of ours, who was taking care of her ex-husband- he had a stroke in Vegas and they flew him home, and she was taking care of him. And after awhile she had to put him in a home. And I asked her, how did she know it was the time to? And she said it was when she was getting physically sick and crying all the time and things were really bad.
J: I don't think you're there quite yet.
M: No, not yet.
J: But it might very well come.
M: Yeah.
J: And since 24-hour in-home care isn't an option, you need to figure out some sort of way to get help part of the time. Anything at this point would help. Someone to come in and babysit him during the day. Or give him a shower. Or feed him so you can do something else.
M: That would be good.
J: And honestly, Mom? You need SOMEONE ELSE to help you clean your house. We didn't get anything done today. You need a professional who doesn't care how messy your house is beforehand. Or one of those organizer people I found online that live in your area. Some of them even have experience with disabled people.
M: Yeah... I keep hoping that you'll be my mother and kick me into gear. I keep this picture of your grandfather around and keep imagining that he's yelling at me to get my act together.
J: Well, um, I don't think that's working too well. You need a professional, not me. I'm not up to kicking your ass when you're too busy dealing with Dad.

(at this point we go into the restaurant to get the pickup, etc. Slight change of subject when we get back in the car.)

M: The thing is... I think other people see your dad differently than I do. Because I still see him as he once was. And when other people see him, they treat him like a baby or like he's not all there. They get in his face and talk really slowly like, "HI, BOB!" like he can't hear or understand them.
J: Well, he probably understands them better when they talk like that. I know I talk too fast for him.
M: Me too, probably.
J: And um, we do know he's not all there any more, Mom.
M: Yeah...sometimes when I ask him a question it takes him 30 seconds to be able to answer me, and it drives me crazy, because I want an answer right then. And he can't do it. And yet, he reminds me of some things, so he is thinking ahead. He just doesn't process...
J: Right.
M: I guess I'm in denial, thinking that he's still the same as he once was. Maybe I just don't want to notice.
J: And my problem is the opposite. I have a very hard time remembering what he was like at all. I can't remember his voice any more. Even when he was yelling. And it pisses me off that he's SO different from what he once was. I can't even pretend that I see him as the same person, because he's so totally- someone else.
M: Wow.
J: Yeah. I guess that explains a lot of the differences between you and I on this.

previous entry - next entry
archives - current entry