Menschenwürde - A piece of my mind...

WHEN I WAS ASSIGNED TO HELEN [NOT HER REAL name] as her hospice volunteer … A nursing home aide warned me:
Helen likes to be the center of attention and so can be demanding of the staff at times.
Helen herself told me:
Do you know the worst thing about living here? They don't see us anymore. Watch. See how they look right over our heads and never make eye contact? So I've given myself a new nickname—Dog Turd. That's how the aides treat me. They walk straight toward me then make a wide circle around me like they don't want to soil themselves.
Her physician wrote:
Dementia with behavioral disturbance
Helen herself told me:
I hate it when I call for someone to help me get to the bathroom and they take 30 minutes to come and then when they come I'm hysterical because I couldn't hold it any longer. They just don't get it: When you got to go, you got to go, and if you don't, when you get there you'll find you already went!
A “Residents' Bill of Rights” posted in the corridor reminded:
Nursing home residents have the right to privacy.
Helen herself told me:
I have another bathroom story. Yesterday, one of the aides helped me get on the toilet, then she stood in the doorway of the bathroom talking to another aide across the hall. I asked her to leave and to shut the door. “Why?” she asked. “Because I want to do a BM in private,” I told her. “Well, you can do it just as well with the door open,” she said.
Her physician wrote:
Depressive disorder
Helen herself told me:
This is a nice place, they take good care of us, but it is no way to live. There is nothing to do. No reason to get up in the morning. They fired the activities director weeks ago and still no replacement. I don't know if I'm really tired or just bored. All I want to do is sleep.
A nurse aide cautioned me:
Helen has been really out of it lately. [She emphasized her meaning by circling her index finger at her temple in the “cuckoo” sign.]
Helen herself told me:
I am so happy to see you. I can't tell you how grateful I am to see a friendly face. I don't want to spend our time complaining, but my back is killing me. I am in so much pain that I could cry. Could you try moving my legs into another position for me? How about putting a different pillow behind me? Can you ask when my next pill is? If it gets any worse I'll go out of my mind with the pain.
Her social worker notified me:
Helen has been mentioning that she wants to kill herself, but when questioned further these are more on the side of dramatic statements to get attention than a concrete plan.
Helen herself told me:
I want to tell you something because I think you'll understand. Every morning I pray to God that this will be the day I die. When I told the social worker he looked at me like I was crazy so I've stopped telling him. But what is so crazy about wanting to die when you're in pain and there is no reason to live?
The 1987 Nursing Home Reform Act mandates:
Nursing home residents have “the right to voice grievances without discrimination or reprisal.”
Helen herself told me:
I had an incident with one of the nurse aides the other night and it was my fault. When we were in the shower she was doing it her way and not my way so I shouted at her and when I struggled with her I hit her. I apologized the next day but she was angry. She leaned right over me and said, “You're going to do this my way from now on. And no getting mad and then apologizing the next morning for acting up.” She put me in my wheelchair and stuck me in the middle of the room with the brake on. She was punishing me. She left me there for hours with nothing to do and no way to move. She's a mean one. I can't report her for doing it, but I don't want her touching me again either.
The dreaded nurse aide broke the news to me:
Helen died at 2:20 this morning. I was the only one available so I sat with her during her final hours. She asked me if she was dying and I told her that only God knew for sure. I gave her pain pills every hour on the half hour. She asked for more at 2 AM, but I told her she'd have to wait. She raised her head, looked me in the eye, and said, “I won't be here by then.” And she was right. She wasn't.
Helen herself would have said:
I finally found release, but not without a final struggle.
The newspaper obituary read:
Helen was a wife, mother, artist, and volunteer.
But I would have added:
Helen was an activist, waging what Gloria Steinem called “outrageous acts and everyday rebellions” and bravely doing it from the inside where others tried to redefine her.
And so, these words are for Helen, who herself told me she was a rebel.
Susan M. Behuniak, PhD
LaFayette, New York, behuniak@lemoyne.edu
A PIECE OF MY MIND (Young RK, ed)

JAMA Volume 298(21), 5 December 2007, p 2458