Saturday, August 16, 2008

Putting the Hell in Health Care

The worst thing about ALS so far is the paperwork.

Actually, that’s a bald-faced lie, but it makes a good lede. The real worsts, alphabetically, include cramps; dementia; drooling; fatigue; muscle atrophy; not being able to breathe, speak, or swallow normally; and twitches hither and thither.

But paperwork does make it into the top-40 annoyances. I have now accumulated five case managers, all busily managing my case for different purposes, and there are two more looming on the horizon, as soon as I can work them into my dance card. In the last two months, I have filled out more forms than H&R Block does in a year.

It seems that in the 21st century, you can’t just get sick any more and lie around complaining about how lousy you feel. Now you have to explain yourself to a lot of random strangers.

Among my current symptoms, I think dementia has the most potential for fun, but for now, let’s talk talking. In particular, talking with health-care providers who do not speak or understand English very well. Not that I’m judging them harshly for this, because, basically, I do not speak English any more, either. And unlike me, they’re going to get better and better at it. I’m just saying . . .

My speech is pretty much kaput and my voice is going fast, but I can still gurgle things out loud as long as there are no consonants involved. I wish I could speak clearly for just 20 minutes a week to take care of essential phone calls, but I know that even if that wish were granted and I called someone I needed desperately to talk to, I’d probably just be put on hold.

Here is a verbatim transcript of a phone call yesterday. I believe the caller was Russian, but I’m not too good at sorting out accents. Anyway, she was a newly hatched English speaker from somewhere.

Phone rings.

Hello? (In Beth Speak, this comes out “ehh owe?”)

Home Health Care Provider From Hell: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.

(Surprised pause. I didn’t know I had a nurse.)

HHCPFH: Hello? Hello?

Yes, hello.

HHCPFH: Hi, this is XXXX, and I’m with XXX Home Health Care. Our nurse will come to see you this afternoon about 5 p.m.

That’s no good. We won’t be here.

HHCPFH: Where will you be?

Excuse me?

HHCPFH: Where are you going?

(long pause) Out.

HHCPFH: You won’t be there?

HHCPFH: When you do want us to come?

Uh ... how about Monday, early afternoon. (Beth Speak: “Uh, how uh but mun ay, ur eee af er nune?)

HHCPFH: Thursday?

No, Monday.

HHCPFH: You don’t want us to come today?

No, we won’t be here.

HHCPFH: You’ll be gone till Monday?

No, we’ll be gone this afternoon.

HHCPFH: You’ll be gone tomorrow? You won’t be home?

No, we’ll be home tomorrow.

HHCPFH: We can come tomorrow.

No, please come on Monday.

HHCPFH: You don’t want us to come tomorrow?

No, I want you to come on Monday.

HHCPFH: What time?

Early afternoon.

HHCPFH: OK, we’ll be there between 5 and 5:30.

No, early afternoon.

HHCPFH: Thursday afternoon?

No, Monday afternoon.

HHCPFH: OK, Monday, 5 o’clock.

No, early. EARLY. (Beth Speak: UR EEE!!)

HHCPFH: Thursday?


HHCPFH: Monday?


HHCPFH: What time?


HHCPFH: OK. We’ll be there at 5 o’clock.


HHCPFH: Why don’t you want us to come at 5?

It’s not a good time for me.

HHCPFH: What time do you want us to come?

(Long pause. Clearly, the concept of “early afternoon” is not ringing any bells with this woman. I think furiously: What words am I still able to pronouce that she might understand?)


HHCPFH: Hello? Are you there? Hello?

I'm here.

HHCPFH: When do you want us to come?

Monday, 1 p.m.

HHCPFH: OK, Monday. What time?

(At top of lungs) ONE O' CLOCK !!!


(whimper) Yes.

HHCPFH: OK. (click)

And just think — I get to sit down with this woman and chat about amyotrophic lateral sclerosis and frontotemporal dementia when she shows up Thursday at 5 p.m.

I think my dementia just kicked up a few more notches.