Young Career Ruined

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.

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

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

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.”