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CAREGIVERS' CORNER

"Lion-hearted" Kat's hints, tips and stories to keep that loved one (and you) going.

ABOUT KAT CRAWFORD

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.

 

In the last two years 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 tipsmy friends and I learned after we entered on our journey a catastrophic journey.

 

Җ

 

*Quote by Dr. Sandra Cottle heard on Focus on the Family presentation November 05

 

Capsules of Hope

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

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

Җ

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.

 

Җ

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

 

Be sure and stop back again for another

CAPSULE OF HOPE.

 Җ

 

 

 

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!”

By

          Kat Crawford ©2005

“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

by Kat Crawford ©2005

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!

 

by

 

Kat Crawford ©2005

 

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?

 

  1. Email family and friends We are in need of laughter. Send us humorous cards and jokes.1
  2. Ask your co-workers to cut jokes from magazines Keep a file to open one or two a day.
  3. 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.
  4. 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.
  5. Make smile cards and keep one in your pocket  Help erase the worry frown from patient’s face.2

 

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

by 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 Crawford ©2005

 

Dear Caregivers,

The old adage, “A woman’s work is never done,” applies to the caregiver world. I remember back to those days during Gary’s hospital stay. I felt husband, kids, friends, doctors and even the dog needed a ‘piece’ of me.

I do love our Border Collie, but I’m not his master. 

Each morning when I arrived at the hospital Gary asked me about the dog before he asked about me. When I arrived home at night, Paddy’s eyes questioned, “Okay, Whaddidya do with my Luke?”*

The day I prayed for help I thought, “Yes, that’s what the patient needs. A dose of puppy love.” Well, maybe you don’t have an animal that needs attention, read on—you might smile anyway.

Kat the Lionhearted

*Yes, I know I confuse you with the many names of my husband—sorry. Let’s see he is Husband, Luke, Gary, Duke, Bashful, Honey and when I need something, Sweetie—does that info clear up the mystery?

 

Җ

A Good Dose of Puppy Love

 

Two days after Gary’s initial diagnostic surgery in 2002, he took a turn for the worse. On my way home that night I prayed, “God help me find something to give my husband a desire to live.” When I saw our forlorn Border Collie, Paddy Awfulous O’Reilly a brilliant idea was born. “I’ll take Paddy to see his master,” I thought. After all, Gary worried more about the dog than he did about his own health.

Early the next morning I called our doctor who thought a Paddy visit a super idea. He suggested I clear the visit with the nurses. I did. Then I called my animal lover friend, Jean for a ride.

At the hospital Paddy paraded through the halls of the hospital like a show champ ready to win Best in Show. He seemed to understand the journey.

 

In my storybook mind I felt certain the patient would see Paddy and grin.

He didn’t.

“No! Paddy. No!” A look of sheer terror crossed Gary’s face as he hugged his middle in fear the dog might jump up on him. Jean and I commanded,”Sit. Paddy sit.” And he did.

“So much for the great benefits of animal therapy,” I thought.

After ten minutes of uncomfortable small talk while Paddy’s tail wagged and Gary held his middle, Jean left with the dog. Never once did Paddy make a sound. 

The short puppy love visit appeared therapeutic, although Gary didn’t admit his appreciation of the effort until months later. I do believe that if dogs could talk, Paddy Awfulous O’Reilly would say, “Thanks, Mom, I needed that.” At home he looked happier and he started to eat again.

ANIMAL CAREGIVER TIPS:

  1. Hospital visits are great if allowed: Clear the visit with physician and hospital staff. Don’t expect miracles.
  2. Animals suffer separation anxiety. Does the animal act normal or depressed? Talk to the animal often. Mention the name of the patient.
  3. Keep track of the food intake. Animals, like children, can go a few days without eating. If necessary, try special treats or a special formula to entice the animal to eat.
  4. Does the pet’s master hold the animal daily? Physical contact is important. Take time to hold and stroke the animal. This can be soothing for you as well as the animal.
  5. Paddy has full run of a fenced back yard. I didn’t worry about his exercise regime. However, some animals need the daily walk. Ask a neighbor or family member for help if you, the caregiver, don’t have adequate time for the animal and the patient.
  6. Report the animal’s antics to the patient. Bring home a report to the animal. Oh and don’t forget, pet pictures can also be beneficial for the patient.

Does all this sound silly to you?

Maybe, even elementary?

 

I learned a lot about four-year-old Paddy in Gary’s absence.

I also found that when I shared Paddy stories with the patient we focused on positives and not illness.

 

Җ 

 

 

 

Capsules of Hope

by Kat Crawford ©2006

 

Dear Caregiver,

“There is nothing as tired as the mother of a two-year old,” I heard a psychologist say. Oh yeah? I can top that young mother. “Think about it, that Mom is on duty every waking moment and she may get a wakeup call in the middle of the night. I knew I could top that. I’m a caregiver. Caregivers are combat ready 24/7.

I didn’t stand up and shout out my findings, but I figured if I held a sign outside the door, all caregivers would fall in line.

Am I bitter about the duty line? No, not now, but in the beginning, well, let’s just say I swallowed some vinegary words and those words leave such a nasty after taste.

Take my advice:

Start the each day with a Hope Capsule

Season your words with honey and grace.

Life will change again soon, you can count on it.

Kat the Lionhearted

 

 

 

Combat Ready 24/7.

 

Like other families our children filled my time until they left home. When they moved out I faced the father of my children and asked, “Who are you?” We laughed together and after a few months we adjusted. Over the next fifteen years our life slowed to a hum drum pace until December 2002 when we rushed Gary to the ER and PMP consumed our household.

Life changed in an instant.

My new role replaced boredom.

My new hat said:

Caregiver 24/7.

 

Between that first ER visit and Gary’s return home after a second hospital stay a month later, he lost fifty pounds. He looked like a skeleton with no appetite. My mother stayed with us for several weeks and prepared food for the patient. Anytime he mentioned food or she could entice him to eat, she delivered.

After two weeks Mom left for Oregon. I arrived home to my hungry husband on the Friday after Mom left.

I liked the sounds of hungry.

 

The minute I arrived home I started food preparation. While the dinner cooked I made a phone call, started the laundry, and created the list for Saturday’s chores. I served the patient, moved clothes from washer to dryer, started another load and answered the phone. The phone to my ear, I started the beans to soak, and wrote the grocery list.

A couple hours later the man asked for food. “Sure, be glad to.” I heated soup while I folded clothes. With a head set on my head I returned a promised phone call and delivered the folded clothes to the upstairs bedroom. At 9 p.m. I fell into my recliner and raised my feet in time to hear,

“Mook, I’m sure hungry. Do you have anything I can eat?” Before I sat upright Gary added, “Rice pudding might be nice.”

I created rice pudding and delivered it with a smile and a kiss.

“Your pudding, your majesty. Anything else while I’m up?”

“Wouldn’t mind having a drink.”

“Sure dear.” I made tea.

“Mook?”

“Yes dear?”

“Did you feed the dog?”

“No, but I’ll do it now.”

“Mook?”

“Yes, dear?”

“The pudding is great.”

“Thanks. Glad you like it.”

“Mook, you must be tired. Why don’t you sit with me for a while?”

Yeah sure.

“Mook, would you mind bringing me my pills? I’ll need a glass of water.”

“Coming right up.”

He’ll be better in a couple weeks. This won’t go on forever.

 

Two weeks later life seemed worse rather than better.

I felt I couldn’t deal with my life so out of my control.

 

The scene above is one of many in my house and yours. Some households have small children in the mix. Did you ever say, “Enough! I can’t do this anymore?”

Write to me at  lionheartedkat@cox.net  I’d like to hear your heartbeat.

 

For a few of my solutions read HELP HIM HELP HIMSELF next week’s Capsule of Hope.

Җ

 

 

 

Capsules of Hope

by Kat Crawford ©2006

 

Dear Caregivers,         

When my mother announced her intention to stay in Omaha and help me, Gary grumbled, “What can she do? She has a hard enough time getting around.”

“Hon, don’t you get it? Mom isn’t here for you, she’s here for me. Besides, if you have a problem she can call 911.” Then I added the obvious, “Knowing Mom is with you frees me up to work.”

Fortunately for me, Gary got along well with my mother. The two passed the time talking over old times and Mom introduced Gary to puzzles. They spent many hours with their heads bent over the colored shapes.

When my ninety-five-year-old grandmother fell, Mom flew home to take care of her. I felt abandoned. I missed Mom’s sneaky phone calls while Gary slept. She reported every detail of the day.

Tired didn’t describe how I felt when Mom lived with us, but when she left for home I thought I wouldn’t survive.

Exhausted Kat

 

                                                           

Җ

HELP HIM HELP HIMSELF

In the beginning of our married life we divided the duties of our home. The man ruled as building and grounds maintenance engineer and took care of the vehicles. I reigned as the kitchen queen, chief bookkeeper and head housekeeper. If anything required a phone call it was my job, also.

 

We had an unwritten law:

You don’t tell me what to do in my kitchen and I won’t enter your garage.

 

The arrangement worked well for us. We adjusted the roles a little after the kids left home, Gary took on some of the household chores. He still wasn’t allowed in the kitchen.

Then cancer entered the scene.

 

When Gary came home after his second stay in the hospital he looked eighty, instead of sixty-three. Pain etched his face.

 

How could I ask him to come to the table to eat?

How could I ask his help?

He hurt when he moved.

 

Fear drove me through the first few weeks until I melted into a weeping mass in Gary’s arms. As weak as he was, he held me and let me cry. Tears didn’t fit my time schedule, but once they started, I nearly flooded our house. When the water works subsided, I trusted my husband enough to become vulnerable. I confessed my fear. I talked about my inability to cope with the bills, the housework, the daily grind at work, and how guilty I felt for not trusting God enough.

 

What I said next came from sheer desperation.

“Honey, I need your help.”

 

That night we talked over a new plan of action, I’d allow Gary more household duties. Don’t laugh. It may sound silly to you, but it took guts for me to give up control of my kitchen.

 

I didn’t realize until later that all my fears had allowed Gary to sit down to die.

Our new plan got him out of a chair whether he hurt or not, it relieved some of my pressure and gave the patient self-respect.

           

Two lists of changes we made:

PLAN MEALS A MONTH IN ADVANCE.

(Two months later Gary became a vegan and I changed the menu, totally.)

  1. Stock the cupboard and freezer with staple items. A supply of easy to fix meals, frozen dinners, canned soups, applesauce, fruits and puddings.(Gary helped me complete the grocery list and find items in the store. Great indoor exercise for him during the cold months.)
  2. Plan the menus for several weeks. (The financial investment scared me—broke our budget--but I felt it would relieve some of my burden. It did.)
  3. On Saturday I wrote a note for each day of the week for Gary. This gave him direction on what to eat for each meal. It also implied, “This is the menu. You fix your own meal.”
  4. Ask the patient to help in anyway possible: snip ends of green beans, peel hard boiled eggs, tear lettuce leaves, or cut veggies.

 

GIVE THE PATIENT SIMPLE TASKS TO COMPLETE:

  1. Fold fold the laundry. (I taught Gary how to sort, wash and dry even my clothes.)
  2. Dry dishes. (I couldn’t give up the washing—sometimes he washed anyway.)
  3. Sweep the kitchen floor.
  4. Dust the furniture, even one room at a time.
  5. Scrub the toilet and bathroom sink.

 

It hurt me to watch Gary struggle with his tasks, yet he felt useful. He’d say, “I’m Mook’s good helper,” then he smiled like our son when he struggled to complete a kitchen chore at age three.

 

Of course, I sacrificed a great part of me.

I let husband in the kitchen.

 

He rearranged my small appliances on the counters and of all things he washed the counters after I’d already cleaned them. Are you proud of me? I bit back the sarcastic retort that came to mind and thanked Gary for his help.

 

We worked as a team. To meet my need, he helped himself.

 

Җ

 

 

 

Capsules of Hope

by Kat Crawford ©2006

 

Dear Caregivers,

              Last week when Gary and I traveled east across Omaha, the clouds ahead of us were tinged in shades of pink and lavender. “Look at that,” Gary pointed to the beautiful cotton candy clouds. “Behind us are the blackest clouds. No sun peeping through anywhere.”

              I didn’t bother to turn around. I didn’t wish to see the darkness. The beautiful sky ahead reminded me of peace and rainbow hues of hope. I encourage you to refuse to see the dark side, too. Don’t turn to the blackness; choose to see the touches of pink.

              Think forward, look forward. Find the beauty in this day.

                                                                       The Lionhearted Kat

                                         

Җ

POSTIVE OR NEGATIVE

YOU CHOOSE

by Kat Crawford ©2005

 

Four days after Gary’s emergency surgery life turned upside down for him. The doctor’s thought he might die before our two Oregon children could fly to Nebraksa. When they did arrive it felt like a well-planned family reunion. Because of their financial situations and living long distance from each other, our children had not been together in more than ten years.

 

I felt doubly blessed when my mother tagged along with them.

 

I hated the reason for our family gathering, however, being together again helped the hospital hours fly by while we reminisced the good times.

 

Laughter prevailed.

 

An even greater benefit from the arrival of family came in the patient’s reaction. It wasn’t a miracle, Gary was still terminally ill, yet Gary sat up straighter in bed, combed his hair, and made a greater effort to walk the halls, our children on either side.  

The surgeon liked Gary’s progress and said, “We’ll release him on Wednesday if he continues to improve. I think being home with you and the dog is a good thing.”

What did we learn?

Attitude is everything

and

We cannot choose the patient’s attitude

 

The question is, “How can we inspire that bright pink glow and help dispel the bleakness of the situation, especially in the face of a hopeless diagnosis?”

My answer, create a positive attitude aura. Carry positivism with you and insist that visitors share positive thoughts only.

 

CREATE A POSITIVE ATMOSPHERE

 

I felt too close to the pain and despair to think about attitude cards during Gary’s first and second hospital stay. I did greet friends in the hall and prepped them before they entered the hospital room. I suggested the perimeters of safe conversation.

A written attitude guideline would have saved my jaws back then.J Oh well, feel free to frame the following if you feel so inclined.

 

ATTITUDE

guidelines for caregiver and patient

 

  1. J     Appreciate and Applaud—voice your appreciation of the patient’s progress and applaud the patient’s every little effort to eat or walk.
  2. J     Trigger—keep items around to trigger conversation and laughter. Old family photos, joke books or animal pictures.
  3. J     Time—be patient, be content to slow your life’s pace. Listen without interrupting. Allow the patient time to form thoughts and express them. Not every sentence comes out with great meaning when a patient is drugged.
  4. J     Interest—bring along a tidbit of news, a magazine with a new article of interest, or scare up a piece of history to stimulate conversation. (Gary just told me it is important to be quiet sometimes, too.)
  5. J     Tablet—help the patient reminisce. Write the stories on a tablet to share with the family or create a note for the patient and reflect back to the story that was told. Understand—work to see and understand the patient from his point of view. It takes effort, it can be done.
  6. J     Dream—every patient needs a dream. Let them. Join them in the dream. No matter how bizarre it may sound to you, help the patient dream and hope and make plans and goals for the future.
  7. J     E is for Exercise – Attitudes change when exercise is maintained. (Scientifically proven.) Help the patient whether it’s a few steps or a walk around the block. Walk alongside and reflect on God’s beauty.

 

Oh yes, Dear Caregiver, surround your self with positive people. You don’t need sympathy. You need a strong will, tons of energy, a great sense of humor, and hope beyond a dream.

Җ

 

 

 

Capsules of Hope

by Kat Crawford ©2006

 

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 ask, “Hey, fly any kites lately?”

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?”

 

Capsules of Hope

by Kat Crawford ©2006

 

Dear Caregiver,

 

It seems I’ve approached the idea of attitude is everything more than once on the PMP website, but as a caregiver, I do believe our days are made tolerable by what we think. 

 

A friend sent me a long letter recently. She poured out her heart and I thought, “Wow, bet every caregiver I know can understand this dear lady.”

 

When I read the letter from my friend, I heard her pain. I felt her agony. I wanted to hug her, but you know, I smiled, too, because I so related.

 

So, kick your chair back, put your feet up, grab a glass of carrot juice and take your Capsule of Hope for the day. If you feel like it, send me your own related story. I’m sure you have a prize winner.

Kat the Lionhearted

J

Smiles bring HOPE to life’s impossible!

 

In January 2003 I felt certain the ascites fluid grew in Gary’s abdomen again. I mentioned to the doctor, “He looks five months pregnant to me.” The doctor suggested we seek a second opinion before the swollen abdomen cut off his lung capacity. Two days later, before we found the second doctor, Gary blossomed to a full nine months. His belly turned huge, hard, hot, and he hurt.

 

In the hospital I felt certain his middle might explode while we waited on the doctor. Gary’s face registered his own fear. His disposition left a lot to be desired, too.

 

Me, I fussed around like an air-headed wife played by Carol Burnett. I made all the right “pooh-bear” noises, and then to comfort the man, I rubbed his tummy.

 

“Don’t do that,” he said in a raspy voice between a growl and whisper. “You have no idea how it feels to pack around this big belly.”

 

Ouch. The man hit a soft spot.

 

“Now listen here buddy,” I stood tall, no longer the airhead. In an instant I changed roles from high-pitched worry wart to Mama from the old Burnett show.

 

“Let me tell you dear husband of mine, I’ve birthed three of your over-grown babies, one of which was ten months in the oven. She weighed 9 pounds 4 ounces, if you remember, and back then I weighed only a hundred pounds. Do you know how short I am? That’s a lot of belly protruding from this little body.”

 

Until then I felt sorry for the guy. After that I felt irritated and hurt.

 

This month I received a letter from a Pseudomyxoma Peritonei (PMP) buddy who wrote:

 “And maybe the worst thing that he (brother) has ever told me is that I can't understand no matter how much I try... I don't understand how it is to be in his shoes. I never had surgery, I never had chemo. Nobody has ever told me that my condition is untreatable... I try so hard to hold his hand and be with him through everything. I just don't want him to be alone, I wish his suffering were mine.”

 

Are you there? Have you walked in those shoes dripping with muck and mire while you try hard to step lightly without smacking the patient alongside the head? You love the survivor to pieces. You hurt because they hurt. You feel the agony. You wish you were like my sweet little friend and often say, “I wish his suffering were mine.” 

 

So what is a caregiver to do? How about think like Erma Bombeck. She once said, “If you can’t make it better, laugh at it.” Smiles simply make the impossible situations easier to handle.

 

 

J

 

Capsules of Hope

by Kat Crawford ©2006

 

Dear Caregiver,

Life is full of surprises. Like the day the doctor handed my husband a diagnosis of Pseudomyxoma Peritonei.  I’m not sure what we expected, but not something as rare as PMP. I remember the anger I felt.

I blamed Gary for not seeking medical attention sooner.

Today I wonder how many other caregivers experienced an initial reaction of misplaced blame and possible unexpressed, well-hidden anger?

 

Sign me just wondering,

Kat the Lionhearted

The Blame Game

Once in awhile I take time to escape reality by reading a novel. A friend loaned me a book by Jane Kirkpatrick, A Sweetness to the Soul, based on historical characters and events set in Wasco County, Oregon. Only a few chapters into the book you feel the pain, the sadness and heartache. I also found some profound insight.

For instance a young pregnant wife is attacked by a mountain lion and dies, yet the husband doesn’t blame the gringo, the protector. The young ladies family doesn’t blame him either. Instead her family chose to honor the saddened husband.

A phrase from the book says, “He and Benito had chosen to support each other rather than lay blame, a sure recipe for surviving tragic accidents and forming friendships of enduring strengths.”

 

AT THE POINT OF NEED

 

When Gary finally said, “Mook, I need to see a doctor.” I made the appointment. After his initial surgery, before the pathology report returned, my dear sweet husband confessed, “I knew something happened in August. I had this ripping pain in my side and felt so sick. I felt certain I was dying.”

 

My mind stuck on his admission of awareness. I didn’t hear the reasons he waited for almost three months before seeing a doctor. When the PMP diagnosis arrived I felt a hot burning anger at the man in the bed.

 

If he’d seen a doctor sooner could the outcome have been different?

 

Today I wonder if the misplaced blame was simply part of the grieving process. I’m not a psychologist and I don’t have all the answers, but I’ve gleaned many tidbits from the pmpbellybuttons support group. Here are just a few:

 

I am not alone as caregiver.

The feelings I feel are real.

There are others that have experienced what I’m going through.

I’m not unique, there are others dealing with misplaced blame.

 

The reasons Gary didn’t see a doctor show his true heart. Only weeks before his painful episode, my name had moved to the top of a cornea transplant waiting list. Gary wanted to make sure I had a successful transplant before he saw a doctor. He used that wait time to remodel our kitchen.

 

His said, “I had to make sure you received top dollar for the house if I died.” His reasoning is really quite chivalrous. (I must admit that for a space of time I wanted to physically harm him for waiting so long.)

 

It took a space of time, but I realized I needed to support my survivor in his decisions, whatever they might be. I had not read the novel back then, but when I dropped the blame, life changed for us once more.

 

We did find a recipe for survival.

 

Our friendship and our marriage are stronger.

We have an enduring strength united together.

 

 

 

Capsules of Hope

by Kat Crawford ©2006

 

Dear Caregiver,

            It’s been several months since the memorial service for Bob Peterson. I told my co-workers I couldn’t cry at that time, after all, our friend Bob is free from pain and Pseudomyxoma Peritonei. (PMP). Yet today when thoughts of Bob came to mind I found myself quite emotional. I couldn’t shake the deep sadness. I miss his posts. Tonight I recognized the grief process.

            I invite you to sit with me for a few minutes, hold my hand (or the one closest to you) and allow yourself to feel.

            Sign me out,

A very somber Kat

 

 

I’m not positive, but probably back in December 2003, Bob Peterson is the first to invite me to the www.pmpbellybuttons@yahoogroups.com (PMPbb). I’d logged into Brian’s story, posted a note asking for help, and waited.

When you go back on the beginning posts on PMPbb you’ll find my hasty notes, scrawled questions, frantic appeals, and like the rest that posted, you’ll find many people answered.

Especially Bob.

Bob lived to encourage and he did a great job. He taught us well. He yelled at us with his CAPS LOCK ON. MANY TIMES HE SAID, “GET RID OF THAT NO HOPE DOCTOR.”

So why am I grieving? Because grief is real. It’s a season.

There are five stages of grief according to Elisabeth Kublar-Ross: Denial, anger, bargaining, depression, and acceptance. Kubler-Ross advises not to try to avoid or rush the process. If you rush the progression you’ll get stuck.

Why Not Avoid Grief?

We think we want to avoid grief, but the pain of loss is what we want to skip over. Grief is the healing process that ultimately brings us comfort in our pain.

What is the difference between grief and mourning?

Mourning is the external part of loss. It is the actions we take, the rituals and the customs. Grief is the internal part of loss, how we feel. The internal work of grief is a process, a journey. Some emotions you may experience include: Denial, Disbelief, Confusion, Shock, Sadness, Guilt, Despair and Anger.

At first you are too cushioned to feel. For a few weeks after the loss of a loved one, family hang close. They help numb reality. They are there to comfort, hold our hands, wipe our tears, and help us make decisions. After a few weeks those loved ones dissolve back into their lives. They move on and it feels like you are alone—totally alone with the memories.

But you aren’t.

There are many around you ready to share. Others who have experienced death in some form are there. The hard part isn’t finding other grief survivors. The really tough assignment is recognizing the need to reach out and find them.

  • When a friend says, “I think you need professional help.” Listen to them. Some need professional help to work through the process. Jenny scoffed at her friends and even her daughters when they expressed their concern over her continual sadness. Jenny’s grief drove her friends away—she refused to deal with it. Years passed and the anger built until her doctor recognized her need and helped her see she can’t work her way through the process without help. Today Jenny is seeing a counselor regularly and finding resolutions.
  • Seek a bereavement group through a hospital or your church. Don’t lock yourself into the first group; feel free to secure a ‘second opinion’.  Not every group fits. For instance, if your spouse just died, a group where one or more women bash their husbands for their lack of concern over their grief, isn’t going to work for you.
  • Find a scrapbookers club and create a family album. Or invite a friend to join you in making a collage of your loved one. My sister-in-law Janice joined me in the mess making at my house. My grief stemmed from the change in my vision. Janice’s grief came from the loss of her husband. Together we cropped photos and shared memories. We neither one recognized how comforting the cutting and pasting pictures of a loved one might be, but the results were far reaching. Our families were thrilled with the finished projects, too.
  • Find a singles club. My elderly neighbor eats dinner at the Elks Club once a month in order to see old friends. She also joined the Red Hat Society. My mother isn’t a joiner, but she has missed having a companion to play Rummy Cube with her. She looked for and found a couple that enjoy Rummy Cube and scrabble, too.
  • Reach out to others in your need: Ralph Waldo Emerson said, “No man can sincerely help another without helping himself.” When you allow another hurting soul to reach out and help you, you have allowed that person a healing moment.

I feel certain if our friend Bob Peterson were here, he’d give us all a pep talk. He’d use his CAPS LOCK AND YELL AT US:

WORK THROUGH YOUR GRIEF!

GROW! CHANGE!

LIVE LIFE TO THE FULLEST!

ABOVE ALL, GET RID OF THOSE NO HOPE DOCTORS!!!”

And then he’d add,

“Pay it forward. Pay it forward.”

Thanks Bob Peterson. Thanks for caring about my husband and making a difference in his life. Your years on PMPbb taught us well. You did PAY IT FORWARD.

 

coh

Capsules of Hope

by Kat Crawford ©2008

 

AND A WISE SOUL SAID:

            When in doubt, ask questions. Build trust in your doctors and nurses, but move beyond them when necessary. They are human and cannot provide all answers to all questions asked or unasked.

 

Capsule of Hope

 

Dear Caregivers,

 

            This week someone asked for Crawford’s Smoothie recipe. I searched my files for the original, Husband has modified and builds his own these days,  When I read the recipe once more I remembered all the days of frantic food preparation, veritable veggies stored all over the kitchen, and the juicing.

            Oh yes, the juicing. Husband’s color has returned to normal, but our new porcelain sink sports the tinge of orange no matter how often I use a cleanser. Love those carrots.

 

It’s five years since DX, awe the memories linger,

The Lionhearted Kat

 

 

This past week we visited Walmart. I pulled husband to the produce section when I saw the manager Scott stacking oranges. “It’s five years, Mr. Scott. Doesn’t he look good?”

“Hey, he looks great.”

“You played a big part in helping us.” I never miss an opportunity to affirm Scott. He sold us 100 pounds of carrots a week for three months and 50 pounds a week for seven more—all at half-price.

Recently someone asked, “How did you survive?” My answer is still, “I don’t know, you just do.” When the doctors diagnosed Gary with PMP in 2002, it looked like he’d die before he ever healed. I felt certain he would not return to work.

A hospital social worker advised Gary to apply for disability, he did and within 30 days, it was approved. (I’ve been told that doesn’t happen—it did for us.)

Our income dropped by 50%. That’s when I humbled myself and started asking for help, like calling Walmart when I learned that carrot juice might help Gary. I also called No Name Nutrition—more than once. Katie ‘suggested’ we build a daily Smoothie to help put meat back on Gary’s bones after the MOAS.

The recipe worked, and Gary gained weight and energy once more.

This isn't a brilliant revelation. I’d spent time studying Hallelujah Acres (hacres.com) website, Katie told us how to dump the goodies together, and then in the summer of 2004, I read an article written by a doctor in a Parade magazine. What a confirmation to know a medical doctor uses the basic recipe (milk, banana, oil and vitamin) for his family every day.

We have many people around us with wisdom we need. That’s why pmpbellybuttons is such a blessing. Remember, only an unasked question is stupid.

One last thought. The Smoothie may not taste glorious like a Smoothie from Starbucks or even Boost, but it is healthy and sugar free.

 

CRAWFORD'S SMOOTHIE

 

1 C rice milk

1 banana

1 T Udo oil blend (flax and other oils)

1 T hydrolyzed collagen protein by Twin lab (LPP reg)

1 scoop either Nutribiotic vegan vanilla rice protein or

1 scoop Egg White protein by Jay Robb

1 T vitamin powder by All in One (I'm now using up my old vitamins. I'd bought a large bottle. I powdered them in our coffee grinder.)

 

Usually husband has 2 C of the rice milk--he's a bigger boy.

We now add 1/3 C oatmeal for me, or 2/3 C oatmeal for husband

 

Tips:

  1. when adding oatmeal, put the milk in the blender and then the oatmeal. Pulse and then liquefy before adding other ingredients.
  2. Use the Tablespoon to add Udo oil and then the Hydrolyzed protein. (The hp will slide off the spoon better and not waste any goodies.)
  3. DO NOT ADD ANY INGREDIENTS WHILE the blender is on. (I did this and exploded putty up the wall, across the ceiling and floor. I cleaned for 30 minutes before work. Husband cleaned doors, walls, window, under the micro, and all my kitchen utensil. His job took days.)

 

No Guarantees: We don’t suggest this will heal you from all infections or diseases. Nor do we say do this and live forever. We believe the Smoothie helped Gary regain his health and strength. He is now drinking a smoothie each morning with his spring training—yes, he will spend hours on a bicycle when the weather changes.

Try the smoothie. We hope it woks for you. Kat

 

AND GOD’S WORD SAYS:

 

It is not good to have zeal without knowledge, nor to be hasty and miss the way.

Prov 19:2

 

 

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