5/27/2008

Nursing Home Tuesday- Choking to Death on Red Tape

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She is referred to me because she cries a lot.

I've seen her around the nursing home where I consult one day a week. She shuffles slowly, mumbling to herself, occasionally asking "Where do I go?"

The third time I saw her, wandering and lost, tears coursing down her cheeks, I asked about her.  "She's got Alzheimer's and she thinks her husband's left her for another woman," I was told.

The next time I saw her crying I went up and asked if I could help. "Oh, no. I'm alright," she said softly and slowly walked away.

Finally, they referred her to me. "But not really," they said. "We want your nurse to give her meds. We don't think she would remember anything long enough for therapy to help her."

I met her husband. And the kids. No one is leaving. They love her.

So I spent 3 weeks trying to track her down so I could evaluate her.  Today I finally caught up with her as she shuffled slowly down a hallway, searching for her room.

And guess what?

She knows exactly what is going on- or at least she did today. Of course, that changes day-to-day, moment-to-moment with Alzheimer's patients.  Sometimes they are right there with you, at least in the early to middle stages.

Maggie is in the most horrible stage of Alzheimer's.  She knows she is slowly losing her mind. 

Her husband isn't leaving her.  Her children aren't going anywhere.  It's Maggie who is leaving.

She sits in her armchair on her half of the room, her white hair hanging loose around her bony shoulders, wringing her hands.

"I wish I could die," she sobbed.  "I can go along for 2 or 3 days, taking care of myself and then...it's all gone."

"I used to take care of people. I used to have everything in its place and now..."

Maggie tells me she'd rather be dead than be a burden.

I look into her eyes and consider lying. It would be so easy to say some soft platitude that would carry her past this phase, into the lost woods of nothingness. But when I stare into her gray eyes I realize Maggie is too smart for this, too aware and too honest for well-intentioned lies.

"There are medications that will help," I hear my coward self say.

"But for how long?" Maggie whispers.

Don't you dare lie to her! I tell myself.

"I don't know," I answer. "It's very scary, losing your memories, isn't it?"

She is crying softly, nodding. "Yes."

Beneath her grief, there is something else.  Maggie is accustomed to being needed.  Here, in the nursing home, she is warehoused, a body sentenced to wait for death.

You know what the hell of it is? I could easily help Maggie.

I could get any one of the friendly aides to let Maggie "help" them, like she used to do for the families around town...But the State won't allow it. They say it is an abuse.

The ladies who have folded towels, cared for children, cooked and cleaned for a lifetime, who have valued their ability to care for their families, are sentenced to sitting around waiting to die because allowing them to clean is deemed "demeaning."

Isn't telling them this just another form of abuse?

These women don't want to bat balloons around in activity therapy, or sing stupid kindergarten songs, or paint pictures. They want their lives back.

When Alzheimer's patients use their hands, it coaxes flagging memories forward. It delays the process- I truly believe this and the research supports it. Having purpose and meaning promotes self-worth. It restores dignity.

We let the demented woman who went to Juliard play the piano. She has lost the capacity for speech but she can play brilliantly.

Still, we won't let the other ladies "help" because it's an "abuse."

Well the Piano Lady's free entertainment. Could we not make the case that playing the piano is exploitation of this poor woman's talent?

Give me a freaking break!

Damn it!

Thank God there are people where I work who will listen and try to find ways around a rigid system that means well but sucks the life out of all of us.

 

Okay, done ranting. Thanks for listening.

 

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