A Caregivers Corner

What About the Children

2012-01-02T15:49:00.000-08:00

The days before Christmas are speeding by. I don’t have the energy to do all my Type A persona plans to complete—but wow, is this an improvement over last year. Yes! But when I write this, I’m reminded of how long the month of December is when you don’t feel well? A question came to mind, “What about the kids?”

Mom just had cancer surgery, she’s depressed with all that should be done and she has no strength. Dad is doing all he can, or maybe there isn’t a dad. And then I think, “What about the kids?”

I’m not focusing on physical or monetary needs, I’m thinking about emotional needs. Often kids don’t realize life isn’t normal and they become demanding. Sometimes they live in fear.

Two thoughts came to mind today, 1. Keep Christmas as simple and yet normal as possible. Simplify, simplify, simplify. Maybe this is the year for a Charlie Brown Christmas tree. 2. Encourage the kids in specific way. If the patient or caregiver doesn’t have time to create positive signs, ask the kids to make them. Keep the signs simply.

Years ago I visited a PMP patient and wife at Creighton. He didn’t want company, but Ann did. She hugged me. Talked and talked. Then said, “We have a five year old at home. She helped me write out Hope! Believe! Love! In two languages and then we hung them around the house.

What about candy striped signs? Ask the kids to be part of the positive thinking healing process.

Still Lionhearted, Kat

When Do We Tell Our Children

2012-01-02T15:01:00.000-08:00

For the patient or the caregiver, dealing with a chronic or terminal illness painfully tough. Talking with the children is even tougher.

♥ When do I tell my children?

When you can control your emotions is the best time. If you can’t cope, talk with a healthcare professional. You and your family will benefit if you can stay active, involved in their everyday activities and keep life on a normal schedule.

Some ask, “What is a normal schedule?” The answer is whatever you’ve done in the past continue doing. If you were an early riser, get up. If that isn’t possible,

♥ Why should I tell my children I have a chronic or terminal illness?

Children are smarter than you think. They understand when changes take place in routine, when here are more meds han usual around, more doctor visits and more medicines around than usual. Hushed conversations tell the child something secret is happening—that can tweak their emotions.

♥ Allow the child to prepare for the loss of a loved one.

You prepare your child for the first day of school, the first date, and even a major test at school. The loss of a parent is much more traumatic than any of those usual life events, be kind, allow your child to grieve while you are still here. Soften the blow. Lavish love and nurture security outside of yourself. Teach your child to be independent of you and move them to ask for help from other extended family, friends, teachers or church leaders.

Often a child feels responsible for the death of a loved one. Some call that “magical thinking” like they can control their universe. Ease the guilt coupled with loss.

Be truthful.

Be forthright. If a question is asked, answer it.

♥ When should you tell a child a parent or sibling might die?

Some illness has the look of death, loss of weight, more treatment, many hospital stays. But what about the patient that looks fine on the outside, yet the doctor says time is running out. The child has no idea of the inevitable.

Tell them about serious illness

Give the name of the disease

Share the possible outcome

Never lose sight of hope

♥ Remember, all life is terminal.

We never know when death might come. We might cross the street, be hit by a car, or fall down a flight of stairs. To prepare

From the Insurance Warrior

2009-09-06T18:39:00.000-07:00

Another PMP patient is nicknamed the "Insurance Warrior" for good cause. She has battled and won over 44 appeals for herself and other patients. I'm publishing her full newsletter with her permission. Longer than usual, but good. If you want to make copies and/or share this information, Todd has given permission to copy and share. Kat

The Insurance Intelligencer
8/31/09

The $3.7 Million Man

As I go forth to speak to general audiences, people make remarks about the state of healthcare.

I heard this one last week in the farm belt of Ohio:

"The problem with healthcare these days is greedy doctors."

Treatment denied

On August 5, I received a call from Tina in Michigan. Her husband Michael had been diagnosed with metastasized abdominal cancer. He needed the same tried, proven lifesaving surgery that I had undergone four years ago.

The facts of the case:
The surgery was denied because it was "out of network."
Tina has a self-funded plan. This means that her employer gets to approve or deny Michael's treatment.
The employer is St. John Health. which is a non-profit Catholic hospital.
The insurer is Blue Cross Blue Shield of Michigan, which is also a non-profit.
After the treatment was denied in June, Tina and Michael left the appeal to their doctor. He wrote a one-page letter which said, "I am the treating physician. This is the patient. In my professional opinion, the patient needs this treatment."
The doctor's appeal was denied. A second letter was on the way to the employer/insurer, to launch a second appeal. When Tina called me, the employer's position was: "We won't consider this second appeal until August 24, because the Regional Appeals Committee doesn't meet until then."
Michael's surgery was scheduled for August 20.
I said, "Stop that second appeal. With a self-funded plan, you only get two appeals. After that, it's the Federal District court for you -- good luck with that. Stop the presses, we are going to write a proper appeal."
How much does the CEO make?
When I take on a case, the first thing that I do is to find the highest-level executives of the insurance company -- and of the employer, if it is a self-funded plan. Names are power, access is power, personal contact information is power.
I found the top executive at St. John Health, the Catholic non-profit hospital. In the process, I discovered that there is a higher authority. I am not referring to a divine power, but to Ascension Health Ministries.
The mission of Ascension Health Ministries: "We commit ourselves to serving all persons, with special attention to those who are poor and vulnerable." The highest-level executive at Ascension Health Ministries is Anthony Tersigni. Last year, Anthony Tersigni earned $3.7 million.
Ascension Health Ministries closed three of their less-profitable hospitals in inner-city Detroit during 2008.
The motto of Ascension Health Ministries? "Healthcare that leaves no one behind." Tina Beitel has worked for St. John Health for nineteen years. They must have missed someone, because they were about to leave her husband behind -- by denying the only treatment that could save his life.
Next, I went looking for the head of Blue Cross Blue Shield of Michigan. Blue Cross Blue Shield of Michigan is also a non-profit.
BC/BS of Michigan raised their group rates this year by 22%. They applied to raise the rates on individual policies by 56%. The president of BC/BS of Michigan is Daniel J. Loepp. His total compensation last year was $2.9 million.
In the process or writing and winning forty-four lifesaving appeals, I have developed a high appreciation for the absurd. However ... the irony of this one made my teeth ache.
My goal was to sit here in Seattle, in my worn-out pajamas, and to craft a document that would have Anthony Tersigni running for his checkbook.
How much does the doctor make
The doctor in this case is the surgeon who brought me back from the brink of death four years ago; his name is Dr. Paul Sugarbaker. He has performed over 1500 of these twelve-, fifteen-, twenty-hour surgeries. He has published over seven hundred medical journal articles documenting every aspect of this treatment -- including his outcomes -- over a period of twenty-nine years.
Dr. Sugarbaker pioneered the surgical techniques whereby the surgeon removes every bit of tumor down to 2.5 mm. Then, he treats the remaining microscopic cells with heated intraperitoneal chemotherapy for two hours, making sure that every surface is contacted.
I had metastasized appendix cancer. This same treatment could achieve exponentially better outcomes for people with colon cancer and ovarian cancer. People often ask, "Why aren't more surgeons learning how to do this? Why don't more surgeons want to do this, if it saves more lives?"
Why? Insurers hate to pay for it. Hospitals do not like to book such long surgeries, because four five-hour surgeries are more profitable than one twenty-hour surgery. Besides, who would want to work that hard? A surgeon who performs twenty-hour surgeries for thirty years will eventually look like Dr. Sugarbaker -- stooped, with a visible "widow's hump," and permanently listing to one side.
A surgery of such magnitude requires a long hospital stay, with expensive post-operative care. The only thing to be gained from it is better outcomes for patients.
Dr. Sugarbaker is either at the hospital, or out teaching and demonstrating surgical techniques -- all week, every week, sixty hours a week. He rides a bike to work, he has a small office in the doctor's office building, his minimal staff work tirelessly to get insurance companies to pay for this treatment.
How much does Dr. Sugarbaker charge for performing this grueling surgery? $25,000.
And, even when insurers do grudgingly agree to pay for it, they have many ways of reducing reimbursement after the fact. Although Dr. Sugarbaker may bill $25,000, he never actually receives $25,000. Believe it or not, there are bean-counters in an insurance company office who review the surgeon's bill, crossing off line items as "not necessary." When the deleting and bundling of codes is done, he has received as little as $400 for one of these surgeries. Who would want such a life?
********
Anthony Tersigni, $3.9 million. This equals one-hundred fify-six grueling twenty-hour surgeries, at $25,000 per life saved.
I have never been so motivated to win an appeal. As I researched and wrote, I would say to Tina, "Wait till Mr. Moneybags gets a load of THIS."
It took me three days to craft my War Documents. After I faxed and emailed it to all of the top executives in the middle of the night, Tina worked the phones, "Did you receive my urgent, expedited appeal?"
Eight days after Tina and I first spoke, the denial was overturned, and the treatment for Michael was approved. That was August 13. They flew to Washington, D.C. on 8/17, and Michael had his surgery on 8/20.
Gee, I guess that they really didn't have to wait until 8/24 for the Regional Appeals Committee to meet.
Which brings us back to where we started. Greedy doctors?
If this is all about greed, we will soon have many insurance company CEOs, and no surgeons to save our lives.
Peaceful Insurance Warrior-ing,Laurie Todd
Listen to my radio interviews!Check out the new book!www.theinsurancewarrior.com

Dealing with Terminal Illness

2009-08-29T18:53:00.000-07:00

When I arrived home last night I noticed that Paddy dog had managed to remove the ears from his toy bunny. Before I left he’d dislodged the eyes and tore out the whiskers. Before long, he’ll snag the tail and tear out the fluff and we’ll buy another toy. When we first purchased the toy bunny it looked like this lop-eared sweetie, adorable.

The bunny reminded me of what every caregiver needs, A Large Set of ears. Listening ears. Not the Paddy dog ears that wiggle back and forth waiting to get in his bark between sentences and certainly not my kind of ears, they only heard half of what husband said because I was busy forming my opinion. Every caregiver needs to grow big ears that hear all of what the care-receiver says and eyes that see what the CR isn’t expressing.

For the caregiver, friends and family dealing with a terminal illness, listening without responding is crucial. While waiting to board my flight from Eugene to San Francisco, I met Patty. In only a few minutes of conversation I learned she was flying to see her dying father. I shared the following tips with her—maybe you know someone that might need them also.

Listen well. Allow the care-receiver (your father) and your family to express all their feelings. Some things said might hurt, try not to interrupt. Allow time to process what is said, even years, maybe someday you’ll understand their feelings.

Realize not all the family will think the same. Forgive them in advance, especially if they push their ideas on you.

Dredge up every positive memory possible. Share them as family around the care-receivers bed whether they are awake or not. (My friend Laura wrote out her wishes before she became comatose. She requested that her family talk to her and each other like she was still with them.)

Journal. Sometimes we cannot express our feelings to our family, write them down. In years to come you won’t remember what happened, but your journal will remind you of how you survived.

Read the book of Psalms to the Care-receiver and the caregiver, ask your family to help read.

Laugh. Loss is inevitable, and will happen to all of us. Laughter eases tension.

Cry. Tears are healing.

5 Tips on Finding A Specialist

2009-08-20T21:30:00.000-07:00

Tonight while visiting our son James, a builder in Eugene, Oregon, we had opportunity to hash over old memories and then talk about his work. Somewhere in the middle of all that James said, "Mom, I like Holmes on Homes. He shows how people get ripped off by shoddy builders." Then he said, "It's like people need to research the people they hire. Like ask for references, find out how many of these rebuild projects they've done and if they liked the finished product."

I just looked at him, I mean, this sounds like what I wrote in Capsules of Hope: Survival Guide for Caregivers. Only he's talking builders and I'm talking doctors. It's like why not, it works in everything. The food industry, who teaches our kids, and of course, what about the babysitters? To be a good consumer we need to give out positive feedback and let others know when something isn't done correctly or a company doesn't deliver what they've promised. Okay, so how does that pertain to caregivers?

Husband has switched roles with me. When he battled Psuedomyxoma Peritonei (PMP), I served as caregiver. I had no idea I should ask how many PMP patients a doctor had treated or what other patients thought about the care they received. Then this last month when I found a lump, the physicians assistant said I needed to see a surgeon, in a state of "I can't believe this is happening," I never thought about asking for a specialist for possible breast cancer, at least at first.

This I can tell you, the difference between the first general surgeon and Dr. Silva, Surgical Oncologist is major. Now I've not only written the instructions for others about the importance of knowing your physician, I've lived the journey and beat myself up because I didn't ask more questions. In this last month husband has learned first hand, that when the patient is in a state of shock and disbelief, the caregiver must ask questions. This I know, that man of mine is doing a good job. Together we have reaffirmed the importance of knowing your physician, this is your life. You need the best in the business for you in your current situation.

Search for a support group, often they have a list of the best doctors for your illness. Be aware, not everyone connects emotionally to a doctor. Check all options before being persuaded to use a doctor or not.
Use the internet. Has the doctor published articles about your medical condition? How long has he been treating your type of problem? Are there any negatives posted about him?
HIPAA prohibits the doctor from giving you names of patients for reference, but you can google possible feedback about the doctor, you might be surprised at what you find.
Ask the doctor, his staff, his assistant if they have patients who will talk to you about the care they received under this doctor. (When Dr. Loggie treated Gary in 2004, we gave our name and number to the office and said, tell patients to call us.)
Check the local newspaper. Often, especially if the doctor is treating rare conditions, articles have been written-good and bad.

IPHC Finally Catching On

2009-03-08T11:38:00.000-07:00

Dr. Brian Loggie performed the IPHC (intraperitoneal hyperthermic chemoperfusion -heated chemo procedure) on my husband, February 205, 2004—that’s five years ago. Dr. Loggie had been using the heated chemo to treat the rare appendix cancer, Pseudomyxoma Peritonei (PMP), for over ten years. Today I read a newspaper article posted on the PMPbellybuttons support group. Seems some doctors are finally catching up to speed.

The newspaper article titled “LI doctors testing heated chemo for rare cancer” says “Long Island cancer doctors have borrowed a page from medicine's past to write a new chapter on how to address a rare malignancy by infusing heated chemotherapy directly into the abdomen using a heart-lung machine.” The italics are mine. I don’t understand what they borrowed or why they think their research and services are new.

I do agree with the article when it says, this is a “....therapy for cancer of the appendix, a malignancy so rare it is known as an orphan cancer. The American Cancer Society has no statistics on its prevalence.”

The article does mention that when Dr. Paul Sugarbaker started using this IPHC method twenty years ago, he met all kinds of resistance. It also says because PMP is still considered an orphan disease, not many people are diagnosed with it, and it’s still difficult to do clinical trials.

We know my husband is one of the lucky ones. The first surgeon, Dr. McCormick, properly diagnosed him with PMP. We also know it’s a miracle he is alive today—two oncologists failed to send us to Dr. Sugarbaker or Dr. Loggie. They told my husband, “We’ll keep you as comfortable as possible.”

What would we do differently given the same set of circumstances we faced in 2002? 1) Seek a second and third opinion. 2) Ask for the medical diagnosis written down and research the disease. 3) Find a support group—if you don’t find one, do like Stephanie Cain did. She formed PMPbellybuttons in November 2003. I’m the 17th person in the group. Thanks Steph.

About the news article, well good. Husband and I are thrilled that other cancer doctors are catching up—it’s time.

We are especially grateful we "stumbled" into Dr. Loggie only four miles from our home. PTL.

Never Give Up!

2009-03-07T06:11:00.000-08:00

Never give in.
Never give in.
Never, never, never, never—in nothing, great or small,
large or petty—never give in,
except to convictions of honor and good sense.
Never yield to the apparently overwhelming might of the enemy.

—Winston Churchill

Most people are familiar with this famous quote from a speech by Winston Churchill, but not everyone knows to whom he gave this speech. He stood before a group of young schoolboys at the Harrow School in England, Churchill's own alma mater, at a time when England was under attack by Germany in World War II. Did he write it down and share it later? Did his speech change the lives of those students or did the teacher become more empowered?

Personally, I think his speech is appropriate for caregivers. Every caregiver no matter the age or the illness must develop a mule-stubborn-persona in order to survive the task at hand. Every caregiver should paste Churchill’s quote on a plaque and hang it someplace where they see it first thing every morning and the last thing each night. I suggest pasting it on the bathroom mirror, above the kitchen sink, in the car and on the nightstand.

NOT A MALL WALKER

2009-02-19T10:11:00.000-08:00

“And it did ruin my whole career,” I could hear Alora say in the background when I spoke with her Grandma Jan on the phone. I couldn’t help but chuckle over the passion Alora eluded over being told she could no longer sit behind the desk in a nursing home.

At least once a year Alora visits the Shriner’s Hospital in Portland, Oregon. Last year a doctor said, “Afraid braces are coming down the pike for Alora.” Grandma Jan said the doctor repeated the same phrase on her visit a few weeks ago.

Why the braces? “She could never walk the mall. Her legs won’t take her that far, they get too tired. She is doing well in PE at school, though,” Grandma Jan said.

Obviously her lack of mobility hasn’t stopped Doctor Alora. She isn’t whining about her inabilities, she celebrates what she can do: visit the nursing home where her great-grandmother resides. She walks around the tables in the dining hall and hands out miniature candies and hugs. Many of the residents haven’t touched a child in years. Alora is an angel visit in their day.

One of the elderly men at the nursing home stopped by the front desk one day to watch Alora at work. “Enjoy watching her,” he said. “I’m so impressed. She’s so engrossed in her work.”

Someday Alora’s Spina Bifida may result in braces on her legs, but for now, she’s content to give up the mall walking for a nursing home ministry. Her caregivers—mother and grandparents smile at her accomplishments and meet the challenges as her birth defect demands.

Young Career Ruined

2009-01-18T08:27:00.001-08:00

The young blonde opened the door at Grandma Jan's house, walked to the inside stairs and sat down. Large alligator tears ran down her face. “I lost my job and it’s going to ruin my whole career,” six-year-old Alora said. “I’ve been fired.”

Never faced with such a proclamation before, Grandma laughed before she said, “Tell me what happened.”

“The lady at the nursing home said I can’t work behind their big desk anymore. My career is ruined.”

For the previous eighteen months, Alora had visited the nursing home at least once a week. She greeted the residents, shared candies with them, and worked behind the desk. She decorated menus, followed the receptionist’s instructions on cutting papers, folding other papers, or just looking cute.

“I guess someone decided Alora’s presence behind the counter created a problem,” Grandpa Bob explained.

“My career is totally and forever ruined.” Neither grandparent could console the blond-wannabe-doctor-helper.

Alora is determined to make a difference in her world. She’s a Spina Bifada child, limited on the amount of walking or running she can do, but she can create a happy atmosphere for NH shut-ins.

How did the Caregiver Grandparents help Alora re-establish her credibility? They stopped by the receptionist’s desk to apologize for any inconvenience Alora caused. The supervisor stepped out from her office and said, “We don’t want Alora to quit, we love her work. We are creating a workstation just for her.”

Dr. Alora is a hope giver once more. What does she have to say? “Then I got very happy because I got my job back.”

Hope comes in small packages—what can you share today? Possibly an Alora type smile, or a hug for a shut-in.

2009-01-06T16:46:00.000-08:00

This is the backside of that Husker fan, my best friend, and husband. He weighed 240 pounds when we rushed him to emergency in December 2002. By the time he’d finished his second hospital visit (Jan 03), he’d lost about 70 pounds. He looked like a wrinkled white sheet. Fragile.

“Unfortunately you have Pseudomyxoma Peritonei, a rare cancer that originated in the appendix.” Bingo, I transformed from wife to caregiver in a heartbeat.
Caregiver defined: Car-E-Give-R

Car: Find your chauffeurs hat you’ll need it.

E is for ear. Develop a new habit. Listen with your ears, your heart and your gut. Hear the spoken and unspoken requests. Listen with the ears, not the mouth. Let the patient express their feelings—good or bad.

Give with a willing heart. Time. Energy. Love. Add another word to give: “Up”. Give up sleep, your spare time, and your emotions. Above all “keep your hopes HIGH and your expectations low.*

R is for rocky. A caregiver learns to deal with doctors, nurses, the hospital janitor and the inconsiderate roommate—often the days are rough.

Roget’s Thesaurus says Caregiver: attendant, custodian, parent, mother, father, nurse, babysitter, sister, caretaker, nanny, au pair. I read those words and thought, “Nope. My definition is better. I’ve lived the role.”

Here's the best definition of a Cargiver:

A Giver of Hope

PS Gary isn’t telling what he weighs now, but upwards of 200—he looks and feels good. I’m grateful for the opportunity to serve as caregiver—was I always? Nope, it’s a title with definite challenges.

Husband Looks Good

2009-01-05T15:26:00.000-08:00

The Sunday after Thanksgiving, 2002, I rushed Gary to the emergency room. My never-been-sick-macho-male was admitted, and two days later a surgeon removed a tumor from where his appendix had once been.

“Mr. Crawford, your appendix ruptured and floated in fluid throughout his abdomen,” the surgeon said. “I removed a Muscinous Cystadenoma. I’m sorry Mr. Crawford, you have a rare cancer called Pseudomyxoma Peritonei (PMP). I’ve called in an oncologist.” (Read story here.)

The oncologist interjected the word “Unfortunately” several times in his brief prognosis. “We have no treatment—we’ll keep you as comfortable as possible.”

Later we learned how valuable it is to have a proper diagnosis. We also learned not to listen to “No hope!” doctors, and to seek a second and third opinion if necessary.

It took a year (read here), but eventually we found Dr. Brian Loggie, a PMP specialist, only four miles from our home. Recently Gary and I visited with Dr. Loggie at Creighton University Medical Center. Before we left the two hugged and the good doctor said, “Man you are a hearty soul. You put the rest of us to shame around here.”

Dr. Loggie invited Gary to be the PMP poster boy, I don’t know that the photo shoot will happen, but doesn’t my man look good today? I took this picture the day of the Gator Bowl—yeah, he’s a Husker fan, can you tell?

Survival Tidbits:

♥ Ask for the diagnosis written down: Research on the Internet and through your library. Ask questions.
♥ Find a qualified specialist: A good qualifying question: How many patients with this disease have you treated?
♥ Search for a support group: If you don’t use the Internet ask the social worker at your hospital or call American Cancer Society. If you still don’t find a support group, ask friends and family to use the Internet—it took me a year, but PMPbellybuttons@yahoogroups.com provided the support I needed.

Doctor Alora

2009-01-01T16:54:00.000-08:00

Meet Dr. Alora, my little friend with Spina Bifida. Her grandparents spend a lot of their time being her caregiver.

Were they prepared for caregiving? Nope. They were like a lot of us. One day someone pounded on the door of our hearts to say, “Did you sign up for a 24/7 position?” In a state of surprise we blink, catch our breath and say, “I don’t think so. It doesn’t fit my schedule.”

In haste you slam the door only to hear, “Sorry. Schedules disappear in the maze of the caregivers world.” Before you can say “No thanks again,” the need is thrust upon you—doesn’t matter whether it’s cancer, Alzheimer’s, chronic fatigue. It doesn’t matter whether it’s mother, father, wife, husband or even a grandchild.

In the summer of 2002 I stood near a friend when he received a phone call. “The doctor says the baby has Spina Bifida.” I didn’t hear what Bob’s wife said, but I watched his face when he received the news. I knew whatever Jan reported about their grandchild wasn’t good news.

When he hung up, a plethora of questions surfaced. Would she live? Would she walk? What can we do now, before birth? Before we did anything else, we stopped to pray for the mother and child.

I recalled that one my piano students suffered with Spina Bifida. He was a smart youngster with a sharp wit. I knew he struggled with crutches and bed sores, but I knew little else about his problems.

When we made calls to ask others to pray several said, “Maybe the doctor is wrong.” Unfortunately, the doctor diagnosed the problem correctly and Alora was born with Spina Bifida.

Doctor Alora is a delight to her grandparents, her caregivers while her Mom works. Like my piano student all those years ago, Alora is one sharp cookie with a delightful sense of humor determined to make a difference in her world—who knows, she just may be a real MD one day.

Survival Tidbits:

♥ First, don’t panic! “When you receive the news, the doctors will give you the worst case scenario. Don’t buy the lie,” Grandma Jan says. “We were told Alora would never walk, may have kidney problems and she faced the possibility of brain damage.”
♥ You can’t plan for care giving in advance. “You jump in and do the necessary. You’re running with both feet on the road.”
♥ Remember above all, you can do more than you think you can. “God promised He wouldn’t give us more than we can handle,” Jan said. “Two years ago I felt certain I couldn’t handle anymore. We had Alora for many hours in a week and we care for both our elderly parents. Well guess what? I’m still here. We are still care giving and today I have more peace than ever before.”