Healthcare, MRDD population, continued

While it is obviously true that I haven't posted in just over a week, I have in fact been writing here, starting a few paragraphs with no sense of where I'm going, only to save and come back to it, deleting some or all of it and beginning again. The issue is, this subject is so near and dear to my heart, and covers eight years of my life. Were I to write chronologically, simply telling the story of the work involved, the people I came to know (residents, staff and management), what's working/not working with the system...well, this would be very tedious, both to any reader and even to myself.



So tonight, I'm determined to actually post something, almost anything, to move forward at least a bit.

I want to begin by looking back just a bit: In my last post I introduced Andrea, hopefully I conveyed the humor with which she handled my overzealous enthusiasm as a 'newbie'. Andrea became my mentor, a woman whose standards I try to live up to as best I can. Just by being herself, I learned to value people more deeply for themselves, to try and appreciate their perspective at a level I hadn't ever considered before. She is a natural-born teacher, able to relate her experiences, work ethic, and common sense to everyone without ever sounding over-confident, condescending or 'preachy'. To say that she and I became friends would be an understatement: We are sisters in spirit, something plenty of people cannot claim in regards to the siblings they were raised with.

As I said above, this post has been started and stopped several times. Already tonight I've written quite a lot, only to go back and delete most of it. Instead of jumping in about life in the group home, I'd like to ask anyone reading this to use her imagination for a moment....

Consider who you are, what your day typically consists of, what you like to eat (and when, and how much), and who you enjoy spending your time with...do you need lots of people around, or does the thought of no 'me-time' drive you up the wall? Do you occasionally call off work or miss a day of class just for the hell of it? Or do people 'like that' seem lazy? What kind of health concerns do you have? Medications? Think about your sexuality: do you enjoy sex (with or without a partner)?

Now, imagine that some nameless, faceless Powers-That-Be have decided that you are going to live with seven people, whom you've never met, maybe for the rest of your life. You'll be sharing a bedroom with someone of the same gender. You'll be able to bring a few belongings, space allowing. Maybe you enjoy music, and often play the radio all night while you sleep...well, your roommate simply cannot sleep unless it's absolutely quiet, so a staff you've just met smiles and 'asks', "How about you listen just for an hour, say between 9 and 10pm, OKAY?" Clearly, you will be expected to comply.

The Powers-That-Be have plans for you. Monday through Friday, you will be awakened between 5 and 6am. You'll be expected to shower (quickly! there are 3 other women in the house who also need bathing), dress in clothes deemed appropriate for work and weather, eat breakfast (note that if you're underweight and don't like breakfast, you'll be exected to eat it anyway, and maybe drink a breakfast beverage on top of it for extra calories; if you're overweight, you'll be firmly prompted to eat less). Check the chore list: you might have dishes to do! You'll take any meds you're on, and very possibly be asked day in/day out to recite each by name, dose, purpose and side effects (for your own good). All eight of you will have a sack lunch prepared the night before, load onto a van, and head to work. Depending on the day, there may or may not be any actual work for you...it just depends on things that no one bothers to explain. Much of the time you'll find yourself sitting, waiting for 2:30pm, when you and your new housemates will load on the van to go home.

Your evenings will be just as structured, right down to planned 'leisure time'. Mind you, if your preferred activities are not considered age appropriate, you will be frowned upon and grudgingly given maybe half an hour in your room for this pastime. Dinner will be family-style (sit in your assigned chair). Bedtime is 9pm. Did you used to sleep just in your undies? Now you have a roommate, so that is no longer appropriate. Your dirty clothes must be put in a basket in your closet, and you'll wear pajamas.

Weekends, a chance to relax! Right??? Well, someone may've said you can sleep in. After all, who doesn't enjoy a couple extra hours of sleep after the drudgery of working all week? Sounds good, but if you have medications, they MUST be administered between 7am and 9am, no exceptions. Oh, many medications just can't be taken on an empty stomach, so you'll have to eat breakfast (served at 6:30am). Since you're up, it's time to clean your room, do laundry and any assigned housekeeping chores. The Powers-That-Be want you to participate in your community, so staff will take you and your housemates for an outing (hope you like Wal Mart and McDonald's).

By now, something in all this will surely have rubbed you the wrong way, which seems very reasonable...even inevitable. So, hey, your first night in your new home, the house manager (who by the way really isn't YOUR boss, just the staff's boss, yet somehow it feels like you have to listen to her) explained that you have all these amazing rights...basically it sounded like you could pretty much say to hell with any part of this. So let's play that out.

You complied the first week, more from being numb with shock at the newness of it all, but come Sunday night, you're feeling pissed off. That so-called work you did was boring, you didn't like your supervisor, and the person across from you yells a lot and gives you a headache. So you make up your mind, come Monday morning you are NOT getting up. You fall asleep, pleased with your resolution.

At 6a.m., a staff whose name you still haven't learned tells you, "Time to get up!" You grumble and roll over. 10 minutes later, he says it again, adding, "You're going to be late for breakfast!" You figure if you lay really still he'll get the message. And in a way, you're right. But understand, no plan is in place for this 'noncompliant behavior'. You're making waves, becoming a 'challenge' to be managed. Prepare yourself. Prompts will continue. The staff may or may not try to keep a calm tone, but either way he'll keep at you. He may try to find out what 'the problem' is...so go ahead and tell him, you hate work! Well, he'll start selling you on the positives: "Hey, all your 'friends' are there, your supervisor said she really likes you, you get to earn some money, you WANT to be 'independent' don't you??? Independent people go to work!" Maybe you have real perserverence, and you stay in bed. The manager will be called, special arrangements will be made. You may find yourself seeing the doctor to rule out medical problems, or a psychiatrist who decides it's DEPRESSION, and presribes a new medication. Keep on resisting the program, and a behavior specialist will get involved. She'll identify the target behavior: Noncompliance. Maybe by now you'll have another target behavior, Verbal Aggression, because you're so damned irritated that you're cursing and threatening all these control freaks with their damned rules.

Thinking of this structured existence, I realize it's much like the square peg in the round hole for some people. Maybe in a group home like this, 6 or 7 people just take the routine in stride most days of the week. They'll get angry from time to time, but let it go as quickly as it flared up. But imagine the incredible patience each person must have? Say one man does enjoy his life, looks forward to many features of the day or week...but how does he feel when a housemate yells, threatens or even hits?

If that seems too extreme (sadly, it really isn't), just think of all the personality differences, not just among the residents, but also the staff (which keeps changing all the time).

That's all I have to share tonight...it's really late, 3:30a.m, 6/22/09. I'll try not to take so long to pick up next time.