CASA's Take: Why Care for Him When You Can Drug Him?

Two calls this morning from M.  In the first one, she told me she'd heard from the home care agency that we were on the verge of approval for a change to split 12-hour staffing.

In the second, she told me she'd just been roundly yelled at by the CASA supervisor.  CASA, for those of you just joining this exciting trip, is the Community Alternative Systems Agency, the New York City agency that provides my father's care under Medicaid.  The home care agency I mentioned above - and I'll name it shortly - is a private for-profit that provides attendants under contract to CASA.

The CASA supervisor was enraged for several reasons.  The first one is that there's no bed for the attendant.  That's true.  We've been using a pretty expensive, high-tech air mattress because 1) we've been expecting the change in staffing and 2) my father is already experiencing the air mattress as major evidence that his home has been invaded.  Of course I was planning to provide a bed if 24-hour shifts became permanent, but based on what we were hearing it made sense to hedge.  For the record, there's an open bed next to his in the bedroom, and a very large sofa in the living room, too.  Final mitigator - no one told us at the outset that a bed (as opposed to a sofa or an air mattress) was required.  We only found out about it two weeks ago - when the application for the shift change was already well along.

Well, the CASA supervisor insists on a bed - now.  The reason for this is she doesn't anticipate 12-hour shifts anytime soon - if at all.  The reasoning?  It's a thing of beauty.  It goes like this.  We asked for 12-hour staffing because he's up at night, right?  And also he's started to wander out of the apartment, which is a safety risk.  So an attendant on a 12-hour shift - who'd be awake, since there's no sleeping allowed on the split 12-hour schedule - could keep an eye on him and keep him safe.

On the other hand, why not drug him?

The supervisor wants to know why he isn't on medication that would help him sleep at night.  M told him that we're scheduled to take him to Dr. B on December 16, and we were planning to raise the question of sedatives or sleeping pills then.

Fine, says the supervisor (in effect - I have all this at second hand).  We won't make any decisions on the 12-hour shifts until after he's seen the doctor.

Do you see where this is going?  I do.  I've been in it long enough to have arrived at a highly developed - and usually accurate - sense of paranoia.  Where it's going is this: they're not going to approve the expanded staffing because it's cheaper to pump him full of drugs and keep him passive all night.

And maybe all day, for that matter.

And if he's sufficiently drugged, it probably won't matter that his case is staffed by this bottom-of-the-barrel contract agency - the one that, in a three-month period, has sent us an illiterate, a criminal who stole his credit cards,  two people who were remanded for further training and another who had to be thrown off the case after she cursed at him, told him he stinks, and tried to force him physically into the bathtub.

This, friends, is the Alzheimer's care system at work.

Conclusion: he's going to a nursing home. 

See how the really hard decisions turn out to be unbelievably easy when you get to them?

I'm going to start the paperwork this weekend.

Projects for 2009 - get him a placement, move him there, close his apartment, place the cats...

Oh, and make a bunch of these people famous.

Yes, that's right.  Like I said, I'm on the brink of naming names.  Maybe I'll think better of it after I cool off.  If I cool off.

But as of today I'm starting a new career as an Alzheimer's advocate.  And I think in the service of that, there are people and organizations that need recognition.  I'm inclined to help them get it.

Because otherwise, people are just going to have to put up with this kind of thing.  And people without access or skills or resources are going to put up with it quietly because they won't even know there's an alternative.

There's going to be an alternative.

Plenty of work for us all before long.

Comments

[Shu]

This is when you want to own steel-toed boots and just start kicking shins, and asses, and pumpkin-headed assholes. You have to believe that this "supervisor" woman has absolutely no personal experience with someone who has the challenges our special folks have.

Wonder what she'll think when she needs someone to actually CARE for her. Hope they have some good medication for her then!

There's definitely little or no heart in the system you are dealing with. It really upsets me that your Dad, AND you, have had all this extra drama and stupidity on top of dealing with the heartbreaking evolution of this mean thieving disease.

My daughter and I are constantly taken aback by the ignorance of so many in the health-care "system" who are totally clueless about the effects of Alzheimer's. What malpractice those Alzheimer's patients must be subjected to who do not have an advocating relative or friend stomping their foot and demanding that proper care be taken. Even then, with an advocate, those who assume authority in their ignorance can override the right thing.

I am so upset with what has been done to your father in his situation by "those in authority". I hope you DO kick ass and give out names. It is horrible.

Shu

[Julie]

Yeah!!!!! While they are bent over from the butt-kicking, I
want to be next in line to kick butts. There is nothing like
a good mad on to get motivated, right? Ultimately though, I'm
glad you have decided to go the nursing home route for your dad.
I think things will all be a little happier, if not less expensive. Carry on, soldier.

[Cathy]

Hi Alan. Now you know how these decisions are made. So many decisions are made as an effort to get away from bad stuff rather than making a decision to move in a particular direction for the best reasons. It must be what must be.

If you ever need help in your efforts to make the system work better, just let me know what, if anything, I can do to help your efforts.

Best wishes to you and your Dad. I hope the holidays and the new year (and new direction), bring you peace.

Cathy

[Alan G. Ampolsk]

Thanks to all.

Per my latest, I'm now trying to restrain myself (not always a comfortable thing) and wait to see what the CASA system actually produces. I'm suspicious of the supervisor's motives, but she may not be the one to decide.

In any event, I'll know soon enough.

And of course, I'll keep you all posted.