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Saturday, December 30, 2006

The Cycle Of Bad Health Care Systems Need To Be Stopped....

My Mom of 52 years was diagnosed with cancer August 1992 - misdiagnosed for 6 months prior as a bad cold by her negligent doctor who later became an elected state official for the Republican party in Iowa.

Fed prescription cough syrup with codeine for months and refused her a chest X-ray. The doctor that told her she was just a hypochondriac for the second time Spring of 1992, even though she had told him and his nursing staff of the constant coughing of thick sputum, blood tinged Kleenex and severe spells of weakness.

A wise woman trapped and betrayed by her arrogant doctor and a bad healthcare system that wouldn't allow her to seek reasonable treatment with another doctor. She tried to get a referral for a second opinion and she was denied. She would've had to pay out of pocket, take money away from my little brother's (who had multiple disabilities) and her living expenses. She sacrificed herself because of the system, not in spite of it.

I still have the letters we wrote back and forth, mentioning how she wasn't getting better and my concern that she was taking cough syrup for longer than usual. My Mom just wouldn't freely talk about her worries.

I always had to pry and piece together the most puzzeling of circumstances. Even suggested that she just go to the out patient and not tell them she had an assigned doctor. Something my Mom could not do she said in the town she lived, nor would she when visiting me in Minnesota that summer.

But Mom would always be ready and willing to share her most recent encounter with the grocery store on her side of town. They charged more money for basic items like diapers, formula, meat and toilet paper. Yet when she visited my Sister on the other side of town, she would intentionally visit that same named store -- different location to find they charged much less for the same products.

She'd always check the isles for prices and selection, buying some things at a better price, to give to her neighbors that were in need too. I used to role my eyes when she started telling me this and that about the store, the store managers and the injustice of it. She never let up on that store's management. Oh, I missed the stories when she couldn't go anymore and oh, how I yearned for those stories once she departed this earth.

My Mom was a pioneer of her own making, an unassuming activist, a most graceful advocate and boy could she spit fire when injustice was forced on those with less power. She was very good at advocating for other's, terrible at advocating for herself. I'm just like her. Except, I am not tiny, not half Irish nor do I have her beautiful green eyes and her cole black hair.

I recall when I got an "A" on a paper I wrote in creative writing class. It was about a woman who broke into a zoo in Kansas so that she could feed and water the animals. And document the abuse and horrible conditions going on behind the scenes. Her accomplice's were a Sister In-law (who lived there) and a total of five kids of varied ages.

I most remember the fresh wounds on the elephants front left leg and her side....she had been whipped and was bleeding. The elephant let my Mom wash her wounds. The animals were not afraid of her, they ate out of her hands and drank water while she held the bowl. Once she was done we followed her back under the fence. She then wrote letters and mailed them. I'm not sure to who all she wrote, but that zoo closed some months later and the animals were sent to other zoo's.

Because my Mom's symptoms were pretty text book for a doctor, it was my Sister who eventually was able to share the list of known symptoms with her Oncologist and Radiologist. My memory of how her diagnosis came to be is kind of murky, but it was my Sister's doctor's working behind the scenes that actually helped my Mom to get a proper diagnosis. Her cancer was the Small Cell type, the deadliest type. She wasn't given long to live by then, maybe months....she lived 7 more.

It really came down to a matter of logic for her, that the negligent doctor she was stuck with make things right, be held accountable for something. I went with her when she asked for an appointment to ask him point blank "how he missed her cancer, all of her symptoms?" His response to her was cold and distant. His answer was rehearsed and monotone. "These things happen" he said. He didn't touch her hand, nor look in her eyes. He honestly didn't care.

As she grew weaker, she never lost the desire to seek justice. Her worries over my little brother and leaving him were so great that it fueled her to a large degree. We visited a lawyer so that she could find out what type of action should be taken against the doctor.

That lawyer like many in the area, wouldn't touch the case with a ten foot pole. He told her that she didn't have a case. Since there was no reciprocity in that county, we couldn't retain a lawyer from outside the area to help her, we tried. No Reciprocity, No Pro Bono, No Hope of my Mom finding or seeing justice done.

That knowing, knocked the wind out of her sails. She was giving up and it showed. We found later that the priest that visited her at the house, gave her her last rights a few weeks before she passed over. The woman who was made of iron will, that sacrificed pieces of her life for her children, that gave so much to many, the woman who looked me in the eyes right after the diagnoses and whispered "I don't want to die." That woman had slowly moved on to another place.

The woman that was left behind felt such pain, suffered so enormously that it was almost unbearable. The Medical University Cancer trial treatment protocol that was chosen for her, ended up being nothing but placibo....the pain pills were not pain relief for her cancer at all. In a town that size, you can find out anything, most times later rather than sooner.

I was floored when my Sister told me that a medical professional had told her this. My Mom was a guinea pig for a Medical University, a bank for the negligent doctor (who was allowed to stay on as a consulting doctor) and considered a losing case by the area lawyers.

It was important that "We" her children be there for her. Home was where she wanted to be and home was where she stayed. Until her health needs increased, my Mom had her home, her things, her independence. I was the oldest and therefore without thought, I should be the one to care for her.

I could work and care for her in Minnesota, I believed. But it was my Mom's wishes to stay near her home, near my Sister (in her second remission from cancer) . They both rekindled a love of Mother and daughter that I had always had with my Mom, she was my best friend.

I would travel 6 hours to her after work every Friday night and return right before work. A smattering of vacation days woven into the I could stay a little longer and help. When I arrived I stepped into my Sister's caretaking shoes so she could take a break and Hospice helpers would show up for a few hours during the week to help both my Mom and Sister.

On one of my early visits I coaxed my Sister to sleep in the same room with my Mom and me, she was too afraid to do otherwise. It had to do with my Mom's conversation's late at night with those souls only she knew of. My Sister was afraid because she didn't understand why our Mom was talking softly out loud to no seen person, in a place and time we weren't allowed to enter.

We three had a slumber party of memories, talking late into the night. My Mom in her bed, my Sister on the cot and me dangling from the love seat...All fell asleep holding each others hands, in a small circle. After that one night, the fear was gone from my Sister and she slept in the same room often.

When my Sister was preparing herself to die in the hospital at 31 years old, from her second bought of cancer and radiation treatments in 1991, Mom refused to go to the hospital to see her. I remember finally screaming at her over the telephone from Minnesota, to go to her daughter!

I had just begun the traveling thing again, to be with my Sister. While my Mom would go to the house to help with the kids, she resisted walking into the hospital. I had asked, pleaded and reasoned, finally I just screamed at her. I didn't know that it was fear stopping her. That something else was going on. She went to my Sister in the hospital for short stays, while I corralled the nurses with stories about my amazing Sister. They were avoiding her too and she needed lots of human contact. I was determined to give this to her.

She was bed ridden, in constant pain, hooked up to an i-med pump flowing with morphine and it wasn't working. It was only making her weaker, making her feel like dying was better. It took almost two weeks of coaxing her out of bed, constant talking -- talking and laughing about her children, her life, our memories together.

Two weeks later my Sister was able to walk the halls with very little help. The nurses became her friend, they smiled and talked with her and laid their warm hands on hers. Most important were the warm loving hugs, a room full of ..... laughing and crying. My Mom had to have the same, I believed. It had to be the miracle cure, it worked for my Sister. I never truly believed Mom was going to die, not until I heard her voice that one night.

I spoke to her the night before she died March 2nd 1993, on the telephone. I was running behind trying to get to her, I was so tired of driving back and forth, but my mind was still racing. So, I thought that a few hours of rest would help me make the drive more safely.

When I heard my Moms voice, I asked her why she sounded funny...why was she talking through gritted teeth, why did her words sound muffled? She said she was just tired. Then, from some place deep inside my soul ... In a lost little girl voice I softly uttered the words "I would be there soon, I promise. I love you. Go to sleep, you can sleep peacefully now."

How much I love her, my Mom, my hero, my best friend. I realized when I hung up the phone that I was letting go of her physical being. The being that raised me. I didn't sleep, instead I sat up waiting. When my Sister called, I threw myself on the floor sobbing uncontrollably. When I saw her at the funeral home, I kissed her forehead.

I always thought that I was supposed to be there when my Mom died. But I think I was supposed to be there for my Sister after our Mom died early morning March 3rd of 1993.

I will always be grateful to my Sister for the amazing way she cared for our Mom, even though family was there, it was my Sister who made my Moms new smaller world as comfortable as she could possibly make it. There are so many examples of why my Sister deserves better.

The next journey came when we saved our money to get my Mom's ashes back to her birthplace in California to be buried, where we had always believed she had burial plot along side her family.

Go To ~ Choose Hope Inc. to read about Final Gifts By Maggie Callanan and Patricia Kelley. When I was given this book 5 months after my Mom passed, it calmed some of my fears and helped answer the questions continually rolling around in my mind. The missing my Mom never leaves me, but the sheer pain of missing her has eased with age. I still talk to her and tell her, out loud when no one is around, how much I love her and miss her. She is always a part of my everyday, reminding me, guiding me and helping me along the way. I was the oldest and all of a sudden my siblings looked to me to help them. Final Gifts linked me to others and their stories, showing me that I didn't have to be stronger or wiser or anything other than be myself, because it was "We" that lost our Mom.

Thursday, December 21, 2006
Putting Home's Appearance Ahead of Helping Frail Couple By Marc Fisher The Washington Post

Monday, December 25, 2006
Misty Cargill Deserves A New Kidney.....

Thursday, December 28, 2006
Dear Senator Harkin, Senator Clinton, Senator Obama and former Senator Edwards....My Disabled Sister....

Friday, December 29, 2006
New 110th Congress FIX the HMO FIASCO ~ Reasonable and Affordable Universal - Social Health Care

Published: December 30, 2006
Elder-Care Costs Deplete Savings of a Generation By JANE GROSS The New York Times


Published: December 29, 2006
The New York Times
As St. Paul Goes ...This is the first in an occasional series of articles that will examine state government in Minnesota, one of several states in which Democrats made gains in the November elections.
As St. Paul Goes ...In Minnesota, Case Study for Political Shake-Up By KIRK JOHNSON

December 29, 2006
A few new polls out in early primary states show some actual competition, especially in the Republican field.....
2008 Like It’s Today: Primary Polls By Sarah Wheaton

December 9, 2006, Saturday
By CARL HULSE (NYT); National Desk
As 109th Congress Expires, Jockeying Starts for the 110th




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