Saturday, January 1, 2011

Beginning with Flames

The sky that greeted me this morning, this first day of a new year, was beautiful. I ran outside in 35 degrees in my pajamas with my camera so I could show you the show. How could I not feel the grandeur of life with a sky like this?

I had all kinds of things to say when I came back to my desk hours ago. But I got waylaid by a poem that wanted to be written, and then by a question for my wonderful law professor, who has arisen from the mire of bureaucratic indifference to take on the cause of a hospital’s violation of my demented mother’s civil rights.

One of the tragedies of Mom’s last few months was her “kidnapping” by a hospital 30 miles from home, which held her captive, in restraints, and under guard for five days without notifying her family. One night before the long Memorial Day weekend, she was sent to an ER by her Alzheimer’s care home for a checkup after a fall from bed tore a little skin on her forearm. She didn’t want to go, but no one listened because she had dementia and couldn’t speak well and it was the home’s protocol. The ER physician ignored her Advance Directive and all of her attempts to refuse treatment, calling this tiny woman “extremely combative,” “severely demented,” “extremely agitated,” with “strong, purposeful movements” that indicated “she wanted to be left alone.”

So he knocked her out with a sedative. He made a mistake in reading her medication chart from the care home, and he wrongly thought she was receiving the sedative all the time. His boo-boo put Mom in a coma and practically made her heart stop. The hospital admitted her without calling anyone on her emergency contact list or looking at her Advance Directive (which said in several ways, don’t do this shit to me!).

For the next five days, this woman who couldn’t put three words together, unable to ask for help, tried to express herself by attempting to pull out the IV and catheter, so they tied her hands up. Then she tried to leave the bed with her hands in restraints, so they put a guard in her room. Finally, all she could do was spit out the pills they put in her mouth.

I found out what had happened to Mom the day before my usual weekly visit to her home. The treating physician, a nice guy, wanted to do an invasive test, so he just looked at the cover sheet on her file, picked up the phone and called us. She cried when she saw us. When the doctor finally read her Advance Directive, he declared her terminal and called in hospice.

I’ve spent six months researching the law and consulting lawyers. The lesson is this: If you have dementia and find yourself in a hospital, you don’t have civil rights. You can have all kinds of legal documents to protect yourself from whatever those medical strangers want to do to you, but there is no law in the entire country or in any state that says you, the impaired human being, have the fundamental civil rights to self-determination, legal representation, or refusal of treatment. Those rights are spelled out and granted to every class of citizen in the United States, except the incapacitated adult in a medical hospital. There are suggestions in statutes that hospitals “respect” you and notify your next of kin, but every day, across the U.S., handicapped people are treated like my mother was.

Thank God, I’ve connected with a law professor who sees this situation at work, and who has helped draft laws in California to protect the rights of patients in nursing homes, mental hospitals, and prisons. What happened to my mother, he says, can set a precedent in this country and make a difference in the lives of other people. Just because he likes being a champion for others, he’s sitting in Florida during his university break, studying my mom’s case, all the records I can send him, and all the pertinent court decisions. Hallelujah! Thank you, Mort!

Now that I’ve told you more than you want to know about that, here’s the poem that begged to be written before sunrise today. God’s blessings on your new year.

The Fence of Words

I have become an observer of pain, she said
stirring cream into a mug of Italian roasted coffee
until it is the warm color of a graham cracker

She looks nothing like a lover of Marquis de Sade
in her Mickey Mouse sweatshirt and ruffled blond hair, yet
I have become an observer of pain, she said

then freezes in the kitchen with a grimace, eyes screwed
shut, the coffee spoon a conductor’s baton
Fire, she said, white lightning, nuclear fission

from tailbone to buttocks to the front of the thighs
the atoms split! Still as stone she peers into the cave
within, a seer in a white sweatshirt holding a spoon

I have become an observer of pain, she said
I describe its incarnations, I voice them for you
our brothers and sisters, so we may know the beast

that assaults us, corral it with a fence of words
contain it, name it, explain it, tame it maybe
Be it a heart or a bone, once known, we can bear it.


Helen said...

Happy New Year! Both your poem and story are beyond powerful. Bravo to you and to the good professor! I am blessed to have been living so close by my mother ... not that we didn't have our differences with her memory care providers, but nothing I didn't handle. Fight the good fight!!!!

Hope said...

This whole post is powerful, from the sunrise to the legal stuff to the poem.

Happy New Year to you!

Woman in a Window said...

Freaken eerie, Chris. Freaken bone chillingly eerie. Perfect.


Magpie said...

I wish you and Mort success in your attempts to set the world right. Someone needs to speak for those who can't.

Pat transplanted to MN said...

As a retired state gov't bureaucrat who oversaw investigations of SNF's, you go for it! Your mother's advanced directive should have been followed but this tale happens all around the country when no one is watching. I wish all the best outcomes in this case for you and that you prevail triumphantly! When my 86 year old aunt was hospitalized in PA and they diagnosed stage IV cancer she wanted no further threatments. She'd had her advanced directive in place and her family doctor knew this, but in the hospital they wanted to treat "at least with radiation" as they explained to me her designee. I yelled at the MD in the hallway, "SHE SAID NO MORE and that is what will be." She went to temporary SNF placement and then into hospice care where she died within a few weeks as she chose. I wonder what they'd have done if I had not been there to oversee. Anyway to bill for treatments is what the medical community seems to be after. When it is time for life to end, it should be alllowed to happen, but not with medical intervention making it all the more complicated and lingering. Happy New Year!

Gabriella Moonlight said...

Sadly I recognized in my teens that people who have dementia (which my great grandmother did) that there weren't any rights protecting her and it took our whole family to fight doctor after doctor to get them to listen to what she was a huge battle and it is sad to know that your mother in this day and age was treated this saddens my heart.

I find hope in your picture that is the sky of a phoenix rising indeed...

and on a peculiar note your poem I felt in my seemed to be something I understand this pain in others...shared and secret...

Happy and Loving New Year to you!!

RNSANE said...

What a beautiful morning sky you had. I missed the sunrise...well, actually, I was up early but I didn't even step outside to see what the sky was doing!

I am glad you are fighting this battle, Chris. It won't help your mother but it may help others. What I think is the most tragic thing of all is that she was hospitalized so horribly for five days near the end of her life without your even being aware where she was.

I admire you stamina to continue this fight.

Dave King said...

Gorgeous sky, absolutely awful story, lovely poem. Have a great and wonderful 2011.

Shadow said...

incredibly strong! quite frightening what can happen, quite unknowingly...

Jess Mistress of Mischief said...

The sunset is beautiful! I'm sorry to hear about the difficulty your mother experienced.

There are so many governmental and business systems that need a good overhauling in my mind.

I have a hard time trusting God in areas where I fear people so much.

I'll keep praying!!!

I'm glad some people are more clear than I am and able to move with purpose and direction un-distracted by fear or debilitating emotions like anger and frustration. It's so powerful to watch as people receiving direction and power move with purpose through the world, problems, decisions.

I'm glad I've got lots of them around me!

nsiyer said...

Happy New Year and more beautiful stuff from you this year too.

Karen said...

I am so glad you've found someone interested in helping you, and I'm glad you're taking a stand for people who can't stand for themselves!

Your poem sears like the pain.

Titus said...

Yes, moving, powerful and makes me feel like punching someone. Several times.
Astonishing control in the poem - beautifully, shockingly, done.

Andrew said...

Your writing of pain and death is so alive. Great words put together just right.

The universe is alight and reflected beautifully in your picture and your words.

Happy New Year!!

Syd said...

I had not realized all the terrible things that happened. How horrible for her and for you. I think that the desire to preserve life at any cost is wrong. I cannot imagine your mother's terror as she surely knew that something bad was happening to her that she did not want. I hope that you are successful in getting the laws to protect the innocent and disabled passed.

Totalfeckineejit said...

Gorgeous photo, powerful poem. A Happy New year to you Chris.