Capsules of Hope

by Kat Crawford ©2005

Dear Caregivers,

Here’s the edited version of my Hope Capsules – the clean, clear, and concise version:

Three years ago we rushed my husband to a hospital emergency room. After surgery the doctor said, “Mr. Crawford I removed a Mucinous Cystadenoma mass from the appendix. We won’t know until after the tests are returned, but it appears to be a benign cancer.” She hesitated and then added, “Unfortunately.”

In the next few days the word unfortunately entered my vocabulary with new meaning: Life altering change.

“Unfortunately, you have Pseudomyxoma Peritonei (PMP),” said the unemotional oncologist my husband tagged Dr. Death. “There is no known treatment.”

My-robust-never-see-a-doctor-husband-became-a-needy-individual. Cancer stripped his weight, his muscle, his will to live.

Cancer forced me into a new role, one I felt unprepared to handle. I became a primary caregiver.

What is a caregiver?

An ear: Listen with your ears, your heart and your gut. Hear the spoken and unspoken requests. Hear the breath of life--did the snore change—are the belly noises a hunger rumble or a bowel problem? Listen to the patient reminisce, lament, cry.

Listen with the ears, not the mouth. Let the patient express their feelings, good or bad.

A Giver: Willingly give your time. Energy. Love. Care. You also give UP. Give up ownership to your sleep, your spare time, your emotions, and your fears. Above all “keep your hopes HIGH and your expectations low.*

Hope: Later in the journey my patient husband said, “Mook,” his most endearing nickname for me, “I need you to do the usual with meals, bills and laundry. I appreciate the fact that you love me even when I’m crabby, but more than anything else, I need hope.”

Wow! Wouldn’t it be great if we could buy  capsules of hope?

And now welcome, to the real me. My name is Katherine. At home husband calls me Mook, a handle he hung on me many years ago.

My name didn’t change three years ago, but my world did. I felt dumped into a world I didn’t understand, a world full of fear. My timid side about destroyed me. That’s when I found

The wicked man flees though no one pursues, but the righteous are bold as a lion.

(Proverbs 28:1 NIV)

I studied the notes about the verse and then wrote out a verse for me, one that described my life in the PMP world:

The fear filled Mook falls apart when the doctors say no hope,

But the wiser Mook gets tenacious, she becomes BOLD AS A LION.

(KAT)

Now don’t get me wrong, no way am I re-writing the Bible. I’m giving myself a kick in the backside. “Get a life.” I talked to myself. “You want that cancer ridden husband of yours out of bed and up and moving again, then do something.” And I did.

To the caregivers visiting PMPawareness website, come back soon. This corner will be filled with Capsules of Hope: Many how-to tips my friends and I learned after we entered on our catastrophic journey.

Capsules of Hope

by Kat Crawford ©2005

Dear Caregivers,

Take a moment to read today’s hope capsule. Pseudomyxoma Peritonei forced me to learn and survive tough days. Along the journey I found that life isn’t all it seems to be in the PMP world or in everyday life. Often when we think we are prepared we receive a surprise change of plans. Please read clear to the end—you need a happy ending.

Have a beautiful day.             

                                                                                                Kat the lionhearted

ஞ

HELP!

 I’M SOON TO BE A WIDOW! (Or so I thought.)

December 3, 2002:

I called our daughter in a panic. “Marcy can you come now? The oncologist is to arrive within the next hour.” She arrived at the hospital as the unemotional, flat-toned doctor ripped away any hope of my husband’s recovery: “Mr. Crawford you have Pseudomyxoma Peritonei. Unfortunately we know of no treatment. We’ll keep you as comfortable as possible.” Do you have any questions, Mr. Crawford?”

“No.” Gary dismissed the doctor with a wave of his hand.

The doctor left the room before I could think to ask anything.

I hurried after him, Marcy close behind me and in a few minutes with the doctor we learned that PMP is a very rare disease of the peritoneal lining. “I daresay there are only a handful of patients in the United States,” the oncologist said. When our daughter pushed for a time frame he commented, “Three days, three weeks, three months. We don’t know.”

How do you deal with a death sentence?

Gary shut down. He didn’t talk. He chose sleep. He refused to walk the halls. He demanded the drapes be kept closed.

We feared he would die from the lack of hope.

Fear stopped me cold.

My mind focused on the death sentence.

Away from the hospital I took action. If I faced widowhood, I felt I needed preparation. I called six of my long distance widow friends, women I’d known for twenty or more years. I trusted them. Each woman gave me a tidbit to think upon:

• Make every minute count. Enjoy your time together.
• Don’t cry now, there will be plenty of time to cry later.
• Don’t live like a miser in fear of what the future holds.
• Stay positive. Laugh often. Create romance. Talk about life and joy.
• Don’t expect simple answers from doctors. They are human. God is divine.
• Trust God the Father, the giver of life. He is faithful.

Armed with my list, I knew I’d be a strong helpmate while my husband languished on his deathbed.

What did I learn from the widows I called?

The expertise of these women helped me become a better wife. It’s a good thing, too. Because …

Gary surprised me. He didn’t die.

He’s still alive three years later.

¥

Copy the bulleted tidbits for yourself or to share with a friend.

Capsules of Hope

by Kat Crawford@2005

Dear Caregiver,

Most Americans take some sort of meds daily. Often a pretty colored capsule guarantees relief of whatever ails you. I don’t guarantee a change of life or less pain if you ingest this Capsule of Hope, it is my wish for you to gain a bit of Caregiver insight.

Put your feet up and relax for a few moments, glean a little wisdom. You deserve a few moments for yourself. Have a wisdom filled day.

Kat the Lionhearted

Җ

“Just Do The Next Thing!”

“I’m sorry. I work with three other oncologists. Only one has ever worked with a PMP patient. There are no clinical studies available.”

The oncologist said “I’m sorry,” several times, but he offered us nothing. “We’ll keep your husband as comfortable as possible,” he assured me.

Several other PMP patients have experienced the same no hope diagnosis. Our friend Bob recently posted a reply to a woman saying her doctor suggested she call hospice:

“Don’t hang around with a No Hope doctor.

Ditch them fast. Find a real PMP specialist.”

Bob wasn’t around when we received the ‘nothing available’ advice in that first hospital.

If we faced the same situation today, what could we do differently?

• Ask for the medical notes. Written documentation in order to research the disease at the library.
• Use the internet to research. I trusted the doctor. He said his team checked for more information—I believed him. So did the patient.¹
• Ask for a second opinion. Insurance companies aren’t surprised when a patient asks for a second or even a third opinion. You aren’t out to prove the first doctor wrong—you want to know that he is right.
• Research alternative treatment. After five months of ‘no hope’ living we heard about Hallelujah Acres vegan diet. Gary agreed to try it for six weeks. After only a few days he felt better than he had in months. We believe the nutrition kept Gary alive and gave him the stamina to undergo the MOAS² and IPHC³ surgery when we found Dr. Loggie seven months later.
• Understand that doctors work from human knowledge. Only God knows the days and weeks we live.

How did I cope?

Although I didn’t have the quote back then, I think Elisabeth Elliott’s answer to an interviewer’s question, “How do you keep going,” fits my caregiver situation.

“You just do the next thing.”

Sometimes I thought I couldn’t manage another day. I’m glad I kept a journal or I might have forgotten how I “Just did the next thing.”

Җ

¹. I don’t think the first doctor lied to us. Gary’s PMP came with all sorts of unique difficulties. I believe the doctor worked from the knowledge he had before him.

². MOAS: mother of all surgeries taken from Brian’s story, a PMP patient in 1998. Brian is alive and well today.

³. IPHC: intraperitoneal hyperthermic chemotherapy (IPHC). Heated chemo chemotherapy agents used directly to the abdominal cavity to kill remaining cancer cells

      Capsules of Hope

Dear Caregiver,

Today’s note is especially for you. Take a minute to sit and reflect on where you might be if you didn’t have that special list of duties. Let your mind wander. Think about the far off places you’d like to go. Greece, France, or the mall. Maybe you desire an hour massage, but at the moment it cannot happen because of the ‘to do’ list’ that never gets ‘to done.’

Hey, today I give you a Smile Capsule of Hope, see it? Bright yellow and full of giggles? Have a smile filled day.

Kat the Lionhearted

Җ

Lord, I Need Laughter!

Long before any sunlight crept between the heavy drapes of the hospital room a loud voice said, “Good morning, Mr. Crawford. It’s time for your bath.”

Before I sat upright in the recliner where I’d slept that night, the woman yanked the drapes open to the dreary winter day. 

“My name is Susan, your student nurse. It’s time for a bath.” The large-boned, klutzy student announced her intentions.

The patient grumbled a sleepy, “No.”

Sweet Miss Cheerful pulled the covers off. She clucked like Carol Burnett in one of her infamous scenes. I must admit husband looked a bit like the wizened Tim Conway playing the old man part.

In her haste the nurse jammed the wash cloth in a spot between Gary’s legs that brought him straight up in bed with a scream.

 “I’m sorry, Mr. Crawford. I’m sorry.” The nurse made a jerky lunge to her right and stepped on husband’s catheter.

“Yowl.”

A handful of nurses came running.

“Get that woman out of here, I don’t want no bath and I don’t want to see her again.” And bless her heart, the dismissed nurse, didn’t enter our room again.

I chuckled to myself. Husband didn’t see the humor at the time, but he smiles when he tells the story these days.

Laughter is the best medicine.

My friend Vonnie needed laughter. In the last stages of her husband’s illness she called me. “Hey, I’ve coined a new word, Funnysad. We laugh together, often. I hate the circumstances. I love my man. Sometimes I get so frustrated I hear anger in my voice. Then I feel bad. He has no short term memory now, you know. It’s so silly, he’s so forgiving. I mean, you know in five minutes he doesn’t remember what I said. Such a funnysad situation.”

Where do you find laughter when life looks grim?

J     Email family and friends We are in need of laughter. Send us humorous cards and jokes.¹

J     Ask your co-workers to cut jokes from magazines Keep a file to open one or two a day.

J     Rent a funny movie One of our favorites is the Court Jester with Danny Kaye. If your spouse is the patient, reflect to your courtship days. Add smooches and handholding to the laughter.

J     Create an album of fun filled pictures If it isn’t possible to hold a scrap booking night at your house, give the photos to a friend. Ask them to create laughter captions to share with the patient.

J     Make smile cards and keep one in your pocket  Help erase the worry frown from patient’s face.²

Җ

¹    Feel free to send me your comical happenings in life. Especially hospital related funnies. They may not be funny at the time—reflections often bring laughter. Email to: lionheartedkat@cox.net^.

²   Smile cards: Cut a 3 x 5 card in half or even into 4ths. Draw a large smile on the card place in your garment pocket each morning. Another idea: Have children make happy smiles on bright yellow paper. Paste them around the patient’s room or tuck one under the patient’s pillow. Add “hugs” on the opposite side of the smiley face.

Җ

Capsules of Hope

Kat Crawford ©2005

Dear Caregiver,

A friend introduced me to a cleaning product she purchased from a TV ad called Awesome. She was thrilled when it removed a nasty stain from her carpet. When I discovered Dollar Tree sold Awesome I liked the formula even better. (I’m thrifty. One dollar a bottle is super.)

Now if I could just find one of those easy-does-it-wipe-on-wipe-off products to remove the caregiver guilt. Haven’t found that formula yet, but I do have a Caregiver Capsule for you to chew on today.

Savor the sweetness in your quest for guilt freedom from the shoulds of life

Kat the Lionhearted

 Җ

DON’T SHOULD ON A CAREGIVER

By

Kat Crawford

“Where are you? Did you go home last night?” pause. “Well Dad, you were supposed to call me.” Pause. “I called home. I called your cell. I called the hospital.” Pause. “Well, I know, but Dad you know you should…you promised.” pause. I listened to a co-worker beret her caregiver father.

The woman’s voice brought floods of uncomfortable guilt. I wanted say to the caller, “Don’t should on your Dad. He’s got more than he can handle” I didn’t. Not only would my advice fall on deaf ears, my co-worker might tell me to mind my own business.

She’s scared, I thought to myself. Go easy on her.

To help others in the caregiver world discover guilt free living I wrote:

To those on the sidelines: Avoid words that create guilt

Caregivers: DO NOT harbor false guilt.

Back in the days when Gary lay in a hospital bed I shoveled guilt like manure from a barn. I moved the stinky guilt pile from one spot to another. I felt guilty when I couldn’t change things for the patient. I felt guilty when I missed the doctors. I felt guilty when I couldn’t keep up with the family. And then there came the guilt because I couldn’t keep up with my job.

On the day a friend said, “We haven’t heard from you? Did you forget to call us?”

Truth is I had forgotten the promised phone call. I burst into tears and stuttered excuses in apology. My emotional outburst embarrassed us both. The next day our daughter took on the phone calls and I started a quick email when I could.

Great prescription to eliminate the Guilt:

Swallow these ideas at the first sign of Caregiver guilt.

Use until you are no longer a Caregiver.

J     Pray about what is most important for that day, write down the necessary. Do what you can and forget the rest, chances are the task isn’t going anywhere.

J     Find one trusted resourceful family member or friend to forward the patient updates to others.

J     Do not promise to make a phone call. Make calls as you can. Chances are the patient will need you, the caregiver, at the most inopportune moments.

J     Set up a user friendly Caring Bridge site. A free service found at www.caringbridge.org Try for one journal entry each day. Then read the responses from others to the patient.

J     Don’t wish to share on caring bridge? Then email once a day. Limit yourself to one short paragraph about the patient and one happy memory others might enjoy. Save the emails in a file folder.

Your email folder works as a journal.

Someday you’ll look back and see joy and laughter hidden among the pain.

Remember, guilt manure doesn’t even make good fertilizer. 

Җ

Capsules of Hope

By Kat CrawfordÓ2006

Dear Caregiver,

Friends say I’m a sweet, almost patient wife, but I became totally irritated with Gary’s prattle when asked the question. You know the one that every doctor, nurse, technician and even the cleaning lady asks of the patient: “How are you?” He never gave a straight answer. If the nurse said, “How do you?” Gary answered, “same as ten minutes ago,” or he said, “Hawaii?” he slurred their words and then added, “Nope never been there?”

The nurses laughed. They enjoyed his nonsense.

I didn’t see the humor in his answers at all.

If the habitual protocol of the hospital is bad, why do guests ask the same, “How are you?” question. I suppose the answer is, “Habit.”

Well, habits are like attitudes, they can be improved upon. Today I hand you a sweet capsule, greased and easy to swallow--a new idea.

                                                            The Lionhearted Kat

Җ

LIKABLE LINGO

We are such creatures of habit. The first time we see a sick person our brain does a computer crash--Ahhh, he looks awful. Whadda I do? Whadda I say? Ahhh “Gee, how are you?” Now that was brilliant.

Yikes! It taxes the mind to think of a new opener.

Within a few hours a patient has heard the three words way too often. If Hollywood can develop linguistics for alien beings, why can’t we create a new lingo?

Caregiver Prattle

The Language of Patieneze

Flippin sweet

In my new world a visitor may enter the patient’s room with a crown—even a burger King crown. “Hello, your majesty. I’m at your service. Today I give you your every wish. What can I bring for you? You name it, I’ll supply.”

Remember the awe struck eyes of a child? They enter a hospital room for the first time and focus on the machinery. A wise child invents a story immediately. They don’t even think in terms of those three unmentionable words. Instead they are likely to point at the tubes and hoses and ask, “Does that cook your dinner?”

Here’s a good idea, quiz that patient. “So I heard this place serves the finest cuisine, how do you rate the chef compared to Applebee’s?” Or how about, “So did you hear the weather at the beach is really crappy? You are so fortunate to be in such a nice warm spot tonight.”

When I asked my co-workers what they say to a patient, Donna said, “Never ask the usual. I say, ‘You ready to get out of this place and go dancing?’”

Barb said, “Why can’t we introduce ourselves and say, ‘Is there something I can do for you?’” And then she added, “Wish someone had said that to me when I was hospitalized.”

Now that’s another idea to pursue. Caregivers are so hung up on the 24/7 duty with their own patient they often miss an opportunity. Look around, is there a lonely soul behind you? Then approach that person. Remember to practice your likable lingo before you open your mouth and be sure to avoid those three little words, “How are you?”

©

Lionhearted Kat Copyright 2006