Detecting Esophageal Cancer


Dearest Readers:

Although the month of October is Breast Cancer Awareness month, I wanted to share a story about my father’s battle with esophageal cancer. The month of April is the scheduled month for Esophageal Cancer Awareness.

When my father was diagnosed, medical professionals assumed he was a smoker. He never smoked – EVER!

DIAGNOSIS – ESOPHAGEAL CANCER

The diagnosis rings in your ears. Esophageal cancer. A thousand thoughts and questions race inside your mind and you find it difficult to cope, think or relax. You want a second opinion. You want to live and you want things to be the way they were, before your quality of life was questionable due to cancer.

Tuesday, December 9, 1997 was the day I became an advocate for esophageal cancer. The endoscopy revealed a tumor, located in the esophagus. A malignant tumor…Cancer…the dreaded word echoed inside my brain. No! I screamed! It cannot be cancer! There must be some mistake! My father took such good care of himself, but like lots of men from his generation, he refused yearly exams and only went to the doctor when he was ill.

Symptoms of Esophageal Cancer

Esophageal cancer is a difficult cancer to detect. Many of the symptoms, such as coughing, difficulty swallowing {dysphagia), and indigestion are thought to be acid reflux. Esophageal cancer may start as tightness in the throat or pain in the chest. Recurring hiccups, hoarseness, difficulty swallowing, or regurgitating food and weight loss, could be symptoms of cancer of the esophagus. Until my father’s diagnosis, I was clueless of the disease. Now, I serve as an advocate, to educate others, and to prepare families about this debilitating disease that attacks profusely, steals dignity and quality of life and can kill. I describe esophageal cancer as the silent cancer.

SYMPTOMS 

The symptoms of esophageal cancer rarely appear until the advanced stages of the disease. Unlike early detection of breast cancer and other forms of the disease, cancer of the esophagus is not able to detect by early screening. While it is recommended by the American Cancer Society to get regular physicals, eat a proper and healthy diet, quit smoking, if you are a smoker, and to maintain a healthy weight, esophageal cancer is a silent cancer that creeps up only after it advances. The major complaint from someone diagnosed with the disease is the inability to swallow or retain food. Social activities with friends and quality of life become a major issue.

Treatments for Esophageal Cancer

Cancer of the esophagus is a treatable disease in many cases, including surgery, chemotherapy and radiation and clinical trials. If surgery is an option, the procedure could relieve the excruciating symptoms and improve the quality of life for the patient. If surgery is not an option and quality of life is threatened, due to the inability to swallow or retain nutrition, the doctor may prescribe a PEG tube.

The Percutaneous Endoscopic Gastrostomy (PEG tube) is a form of life support for patients who are having difficulty with swallowing, or eating. Insertion of the PEG into the stomach is performed by an endoscopic procedure. With the PEG tube in place, liquid nutrition, along with medications, may be administered directly through the feeding tube, into the stomach. Introduced in 1979, the PEG tube has been used for an estimated 200,000 patients, serving as a form of nutritional support.

At the age of 84, Walter W. Perkins fought the battle of his life. His prognosis was not a good one. On two occasions, I prayed for a miracle to happen when he was near death, and on those two occasions, the miracle was granted. The doctors said he might live six months, if chemo and radiation therapy were successful. He beat their odds, battling this disease for nineteen months with stiff determination, faith, and positive thoughts guiding his way. Due to the location of his tumor, surgery was not an option for us. A few days after his diagnosis, he permitted the doctors to connect the PEG tube to his frail body. Furious that he could not swallow without regurgitating his food, he called his feeding tube an umbilical cord. His quality of life decreased at a rapid rate after his diagnosis of esophageal cancer. Fortunately, the PEG tube provided him the ability to regain some of his weight, extending his life until he became despondent and demanded to eat food again. His doctor consulted with me, letting me know that if he insisted on eating, he would aspirate his food and choke to death. For us, it was a quality of life issue. I did not fight the battle to override his decision to enjoy food again, even though I knew eating food would lead to his death. On July 6, 1999, while I was entering the nursing home for my daily visit, my father aspirated his food and was gone.

Before his diagnosis, I was naïve to the prognosis of esophageal cancer. This disease was not marketed or publicized whenever I read stories about cancer, and I called it the silent cancer, because it silently develops without many warning signs. When I expressed my guilt to the oncologist, I was told that esophageal cancer is increasing and is quickly becoming one of the fastest growing cancers in the world.

Additional treatments are based upon the type of esophageal cancer, location of tumors, and how capable the patient is to respond to treatment. In my father’s case, his age, fragile condition and the location of his tumor dictated his treatment of chemo and radiation therapy. After his second dosage of chemo, his treatment with chemicals and radiation were cancelled. The drugs had left him so weak we almost lost him. The chemotherapy had drained every ounce of strength he had. From this point on, the only treatment would be for the quality of his life.

Photodynamic Therapy (PDT)

A new method of treatment for cancer of the esophagus is photodynamic therapy. PDT is helpful in some cases by injecting chemicals into the blood. Laser lights target the cancer by an endoscope procedure. A minor disadvantage of PDT is the light may only reach cells on the surface, and cancers that have spread are not treated.

Survival Rate

According to the American Cancer Society, the survival rate of esophageal cancer is low. New cases are increasing at a rapid rate. It is estimated that in 2008, approximately 16,470 patients will be diagnosed with cancer of the esophagus. Deaths are predicted to total 14,280. The Five-Year Survival Rate is estimated to be only 34%. These statistics are not encouraging; however, with developments of clinical trials, drug therapies and the willingness to fight the battle of cancer, I am hopeful the statistics will increase soon.

Quality of Life

All types of cancer create issues with the quality of life for the patient and family. Esophageal cancer certainly affects the quality of all. The American Cancer Society identifies four basic quality of life factors, including social, psychological, physical, and spiritual. Watching my father fighting esophageal cancer, I would like to add one more quality of life issue, the quality, and loss of independence. Before my father’s diagnosis, I watched an amazing independent man walking in his shoes. He lived alone in a retirement community and at the age of 83, he took daily strolls, cooked his meals, gardened occasionally and he enjoyed singing. After the diagnosis and the PEG tube insertion, he was observed by medical professionals to need skilled care – a term I became most familiar with as his advocate. Skilled care was a medical term that meant he needed the daily care of a registered nurse. His social life consisted of a roommate in the nursing home and the staff of medical professionals caring for him. He was too weak to go anywhere most of the time, and when he was able to go out with me, I had to be careful not to take him to restaurants or out for ice cream since he was receiving liquid feedings from the PEG tube and he could not swallow. His physical activity was non-existent because he was so frail. All that remained was the spiritual quality of life. Before his death, my father tapped into the spiritual side of his life, reading the Bible constantly, quoting verses, and singing religious songs, aloud. Before his death, the singing quieted. He coughed constantly and would lose his breath from the coughing attacks. In a whispering voice, he reminded me he was ready to go, if the good Lord decided it was his time. I noticed his voice was still hoarse and his eyes did not hold their usual sparkle.

Additional research for Esophageal Cancer is underway and I am hopeful that in time there will be a cure for all cancers. Cancer Aid Research, education, and advocacy serve as strong components to understand cancer. Esophageal cancer is usually diagnosed in the late stages of cancer, as was the case with my father. When I inquired about the stage, I was told he was in Stage Four. The outlook for this disease is not a good one. The survival rate is low. If you are a smoker, quit. If you have symptoms such as unexplained weight loss, pain or difficulty swallowing, hoarseness, non-stop coughing, heartburn, or hiccups, make an appointment with your doctor and ask about esophageal cancer. If you are at high risk, the doctor might suggest an endoscopy.

Serving as my father’s caregiver gave me a new perspective on life and the belief in miracles. Now I appreciate the beauty of a new morning sunrise and I can look towards the future while doing all that I can to educate others about esophageal cancer and care giving. The experience of watching my father suffer so much, still with a smile on his face, even when he was angry and in denial about his cancer taught me so much. He encouraged me to move forward with life. I have chosen my life’s direction, or perhaps it chose me, and I will do all that I can to become an advocate for those who battle this dreadful disease. My passion is one of hope so cancer will soon become a curable disease that is not silent. I still believe in miracles.

Sources:

Barbie Perkins-Cooper is a freelance writer who loves the journey and exploration of travel and health. She works full-time as an editorial photojournalist and has published numerous articles and photographs for regional, health and beauty and travel publications including the Travel Channel. Barbie resides in Charleston, South Carolina with her husband. She is the author of Condition of Limbo and Career Diary of a Photographer. Visit her website www.barbieperkinscooper.com

 

 

In Memory of My Father


Dearest Readers:

Below is an essay written before my father’s death – July 6, 1999

WALTER W. PERKINS

Mr. Sandpiper, 1998

Born an identical twin on December 19, 1914, Walter W. Perkins will soon celebrate his 84th birthday and he is the only surviving family member left of his generation.  His identical twin brother was named Lewis.  The Perkins Family included a total of six siblings, three boys, and three girls.  Growing up as twins (Lewis and Walter) shared more than most siblings and they were inseparable — virtually impossible to tell apart.   Known as The Perkins Twins, they sang harmonically in church choirs while preaching the gospel.  They traveled to many cities, touring as The Perkins Twins and found this to be their calling in life; however, their future together, billed as The Perkins Twins, was short-lived.  Lewis became ill at the age of 26 and died suddenly.

Because he loves meeting people and does it so well, Dad chose the hotel industry for his profession while pursuing his dream as a writer and poet.  In the early 1960’s he wrote a poem titled, Living Words, based somewhat on Sir Winston Churchill.  Living Words was published and today is on display at the Winston Churchill Museum.  At the age of 65, Dad retired from the Rodeway Inn, Atlanta, GA.  He is divorced and the father of four daughters.  Before becoming ill, he lived at the Canterbury House in downtown Charleston and took daily strolls for relaxation.

Dad is a tall and proud man and he can recite poetry like a Shakespearean actor.  He is a lover of words and can paint a magnificent poetic picture while he recites the historical stories and events of times past.  An avid sports buff, he knows almost every popular football or baseball star by name, position and statistic and he can tell many interesting stories about sports, especially baseball.  If you do not care for sports, you will learn to find it an interesting fascination, just by listening to the stories Dad shares.

Dad has always loved the magic of words, and as a young man, he wished to make the family tradition of journal writing part of his daily activities.  He has an impressive collection of family diaries and his daily ritual includes writing the days events in his personal diary.  He started this ritual many years ago and has quite an invaluable collection of diaries.  He has researched our family genealogy, dating us back to the early 1600’s.  One impressive member of our family (distant but still very special) is the late Diana, Princess of Wales.  Our heritage dates back to the Spencer Family.

Today, Dad still believes in rituals and he records special things in his journal of diaries.  From historical moments, to births, deaths, marriages, and yes, even the sad times, are recorded as part of the Perkins History.  Significant events are recorded in “Strolling in Memories Gardens.”

As a father, he instilled many beliefs in me and I am proud to call him Dad!  He taught me to look inside of a person, to see the inner beauty and not just the face or the smile.  He encouraged me to believe in myself and to always “make it a good day!”  He has lived a wonderful and proud life and I have never been more proud of him than I have during this year.  Walter W. Perkins is truly my bright and shining star, my beautiful aromatic rose, and he is the most loyal and dedicated father, family and friend I have ever known!

Sun Sets in Hawaii
Dad spoke of sunsets and sunrises, sharing with me that he was in the sunset of his life. Maybe that is why I have such passion for sunsets. Rest in peace, my precious father. How I miss you!

Barbie Perkins-Cooper

December 19, 1998

Grief – Just When Does It End?


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Dearest Readers:

July 6 is always a day of remembrance for me. Truly a day to spend the entire day in tears, or a day to give thanks. Why? Allow me to explain. During the stressful days of my dad’s terminal illness with esophageal cancer during December 1997 until his death on July 6, 1999, I have felt such a loss.

Dad kept telling me he was in the sunset of his life. I wasn’t ready to see the sunset. I did not want him to leave me.

I’ve had people tell me I need to move on. “Get over it. Life goes on…” Etc. ETC! It isn’t easy! Today is July 6, 2018 –19 years since the death of my dad. I remember the day, as if it was yesterday. After a demanding day at work, I rushed to visit him, like I did every day. I spoke to the nursing home earlier in the day. “Dad was doing fine,” they replied. “Fine!?!” If he’s in a nursing home he isn’t fine. Yes, he was as well as could be expected; nevertheless, over the last six months of his life, I watched his body slowly shutting down. First it was the weakness from esophageal cancer. His inability to retain his food. His legs grew weaker and he fell – LOTS. Each time the nursing home reported the falls to me, like they are required. And each time, I prayed a sigh of relief. Just one more day. Please God, give us one more day.

In March, his heart grew weaker, and I realized the end was near. I stopped praying for a miracle. In my nightly prayers I prayed for God to find a special place for my dad, to use his talents, his voice, and yes – even his temper. Dad could be a tenacious man when he wanted to be!

During my daily visits after March, I noticed Dad no longer walked me to the door, to kiss me goodbye. He simply waved his hand as he closed his Holy Bible. No longer were the visits welcoming or fun. He appeared to be angry at me, always waving me away after about 10 minutes of our time together. His roommate told me Dad was mean to me. “You deserve better,” Dudley said. “He is so mean. He should appreciate you.”

I smiled at Dudley. “Don’t you understand,” I cried. “Dad is dying. He’s angry at life.”

Sometimes when I arrived after a long, hard day at work, Dad would grow arrogant. “Just get out of here,” he shouted. “You know you don’t want to be here. Just Go!”

I admit it. At times, his anger got to me. I would leave the nursing home in tears. I did not understand his anger towards me. After all, I visited every day. Just what is the matter with him, I asked God while tears rushed down my face. Doesn’t he know I love him?

Dad and Dudley were the odd couple of Sandpiper Convalescent Center. They teased and complained, always trying to compete with each other. For a while, Dad had the upper hand since Dudley’s body no longer moved and he remained in the bed, or a special wheelchair. Dudley had difficulty with speech too, but after visiting Dad so often, Dudley and I were able to communicate without a problem. After March, Dudley had the upper hand as we watched Dad sit on his bed, or remain in his bed most of the time. Gone were his daily strolls with his walker.

I suppose I was counting the days down, knowing my dad and I would not share another holiday together. No more birthday parties. No more Christmas trees, Thanksgiving and holiday dinners together. Tick. Tock…How I wish I could make this clock stop and save my dad.

On the moment of his death, I was walking in the corridor of Sandpiper Convalescent Center. A nurse I recognized approached, pushing an oxygen tank. I remember speaking with her, saying Uh, oh. That isn’t a welcoming sign for someone. She nodded, never saying a word to me.

I placed my hand on the door of Dudley and Dad’s room and so did the nurse. Quickly, she nodded, telling me not to come inside.

I screamed.

“Oh, Dear God, No. Please…please….Please God, NO!” I cried.

Someone grabbed me, walking me to a chair and I sat down. I knew. The clock was stopping. My dad was dying.

I heard a voice say, Barbie. We can bring him back.

“No,” I cried. “He’s a DNR. I must honor his wishes.”

Moments seemed like hours. At 6:15 a nurse approached me. “I’m so sorry. Do you want to say goodbye?”

Yes, I nodded.

I waited a few minutes for my husband to arrive and together, we walked in to Dad’s room. Dudley was eating dinner. I could not speak to him. I touched my Dad – his body as cold as ice. His skin clammy. His eyes closed. I kissed him. Told him I loved him and I would never forget him. “You’re still here, inside my heart,” I cried.

I have no idea what happened next. I was numb. Dumbfounded. How would I live without my Dad?

After his funeral, I joined a grief therapy session and learned to move forward. Still, as the day of July 6 of each year approaches, I feel an incredible emptiness. Grief. Heartache. I ask myself, will this pain ever leave?

I think not. Today is July 6, 2018. Nineteen years today… Just how can it be 19 years? These years have flown by — just like someone opened a window, tossing these years without Dad outside. I must keep myself busy, remembering my Dad, Walter W. Perkins, and the goodness inside of him. Yes, he had moments of temperamental ups and downs, but he was my dad. As a child, I always looked up to him. I held his hand. We sang. He taught me how to harmonize and he always reminded me to “Make this a good day.”

I ask you how? How do I make each day a good day without my dad?

When do we stop grieving over those we’ve loved and lost? When does the heartache end?

After my dad died, I felt like an orphan. I have learned to move on and to recognize that each day is a gift. I plan to have a serious heart-to-heart discussion with my dad today while drinking my morning coffee. I will lift my head high, looking into the Heavens and speak softly to my Dad. Yes, I will probably cry, but now, the tears are good, cleansing tears because I have learned to move forward. To make the most of every day. July 6, 2018DSC_0230-001 is another day without my dad, but I am so thankful that I was there for him daily while he battled cancer. Yes, I miss you, Dad. I was blessed to share one more day. Thank you, God for giving us one more day!

PARENT TO PARENT…CARE GIVING IN AMERICA


IMG_0620_editedHolidays of 1997

During the holidays of 1997, my life was extremely busy until a shocking reality forced me to readjust my schedule, to make time for a new, unsuspecting emergency when my father needed me the most, during his illness.  I was stepping into a new chapter of my life, green and naive of the responsibilities I would endure.  The roles of life were reversing, and before the Christmas holidays of 1997 ended, I learned about new duties while serving as the primary caregiver to my beloved, headstrong, and courageous father, Walter W. Perkins.
On December 9, I sat alone at the hospital waiting for the results of an endoscopy, feeling confident my dad would be okay.  I flipped the pages of a magazine while waiting for the test results.  When his doctor approached, I realized from his body language and the look in his eyes he did not have good news to report.  When he whispered esophageal cancer, I screamed. Standing in the corridor of Roper Hospital, my entire body shook. This cannot be true. It must be a mistake. My dad is a tower of strength. Nothing gets him down. Nothing!
Later, I regained my composure, while the hurtful words of cancer echoed in my head.  How could this be?  I pondered the diagnosis.  Dad would need chemotherapy and radiation.  I did not know if he would agree to the treatments, realizing that if he found the courage to fight such a dreadful cancer, he would become dreadfully sick.  According to the doctors, chemotherapy could help, or because it was so toxic and potent, it could kill him.
The prognosis was not a positive forecast.  The oncologist estimated that he could live possibly six months; nevertheless, he was not able to retain food now and was malnourished.  He needed a feeding tube, to pump nutrition into his stomach.  If he did not respond and maintain food soon, he would probably be dead within two weeks from malnourishment.

My heart palpitated as I realized my role model, mentor and advisor of life was terminally ill with a dreadful disease, and I was helpless to stop it.  My father was my guiding light of life, always strong and healthy.  Now, he would fight the battle of his life, and I did not doubt that I would be by his side for the duration of his illness.  Our roles in life were reversing, only this time, I would become the caregiver to my devoted, charming, and loving 82-year old father.

I was not sure I was ready for this challenge, but I knew I would not allow him to fight the disease without me.  Although I failed to understand the correct definition of a primary caregiver, I would learn, and change my lifestyle schedule to be by his side.  Realizing the nightmarish roller coaster ride I was on was a wake-up call I hope never to experience again.

I was a proud, energetic, fulfilled woman of the baby boomer generation, the generation designated to babies born during the years of 1946-1964.  I was involved in a demanding career, relieved that my son was grown and living on his own, planning to get married soon.  Now, it was time for me to do what I wanted to do until I realized my father would need me now, more than he needed anyone in his lifetime.  I was the parent to my parent.

LIFE WAS SPINNING, OUT OF CONTROL
I accepted the challenge, never understanding how the cycles of life were spinning uncontrollably while I slowly stepped into the dreadful middle age years, stepping into a new chapter of my life as a caregiver.
Americans of the baby boomer generation are aging.  Approximately one of four American households are involved in some form of caregiving.  The number of primary care providers is diminishing because many family members live far away or cannot become involved. They work. They have careers. Demands. No time is left for cancer and caregiving.  Where does this leave the elderly?  Who will feed them, dress them, and provide for their needs and companionship?  Who will see that their medical, financial, and personal needs are met?

In America, hospital and long-term care is skyrocketing.  Medicare will not cover the needs sufficiently.  Only a small amount of American families can afford private nursing home care or long-term medical care.  Approximately 36% of primary caregivers are over the age of 65.  As the baby boomers reach senior citizen status, the elderly population is projected to increase significantly and will require physical, emotional, assisted living and special needs.  Although the majority of caregivers are usually women, many of these women must juggle a full-time job and children still living at home, while managing the care of an elderly parent.  These demands can lead to physical ailments, including depression or burn out.
I was under the impression that Medicare would take care of the medical needs of my father, along with the elderly.  I was sadly mistaken.  Medicare would not pay for his prescriptions unless he was hospitalized; and if he needed long-term care, Medicare would only cover twenty days.  Fighting for his life, Dad worried about the bills, along with how he would afford the expense of cancer.  He was encouraged to file for Medicaid.
While the toxic brown bag of chemotherapy dripped into my father’s thinning veins, I realized I had to take charge of his life, at least for now.  Although I did not feel emotionally strong enough to endure the horrors of filing for Medicaid, I knew I had to become his voice, his nurse, and advocate.

I made an appointment to file for Medicaid. The process to file is a three-hour process where the social worker asks questions dating back to my paternal grandparents and great-grandparents. Since my parents were divorced, I had to find the divorce papers and other documents proving that my father was not a wealthy man.

 

LIFE WAS SPINNING LIKE A WHIRLPOOL
I adjusted my schedule, missing weeks of work, along with months of sleep.  When I visited him, I smiled while struggling to camouflage my emotions.  Dad was so weak and nauseated from the chemotherapy, he failed to notice, and I was thankful.  I wore myself out physically, almost to the point of exhaustion.  My emotional life was spinning out of control, trapped in a whirlpool I could not escape.

Returning to work after a nine-day absence, I had a meeting. During the meeting, I fell asleep, so exhausted I could not find the strength to work. I prayed for God to give me strength to survive.

To my surprise, I found an inner strength within myself, focusing on my father’s medical, financial, and physical needs.  We developed a closer relationship, and although we never discussed how it felt for him to suffer a terminal disease, I still remember his poignant words to me during one hospital visit.  He reached for my hand, whispering, he said, “You know, Barbara, cancer is not contagious.”
Tears filled my eyes as I turned my head away so he could not see me crying.  “I know, Dad.”  I kissed him on the lips, telling him I loved him.  I was proud to be his caregiver, and I was thankful he had confidence in me.

Emotions were pouring out of me so I rushed to the arboretum at Roper Hospital. Opening the door, I discovered no one was around. I sat down, wiping the gushing ocean of tears from my face. I rushed to the balcony. Opening the doorway, I closed it and started screaming. At first, just a whimper of screams. Listening to the traffic along Calhoun Street, I realized no one could hear me, so I let the fears, tears, and heartache of Dad’s illness escape. Afterwards, I realized I felt better.

PRIMARY CAREGIVER SUGGESTIONS
If you serve as a primary caregiver, be good to yourself.  Find time to be alone, while juggling the demands of caregiving, even if it means you must close the door for a bit of privacy for only a few minutes.  Make the most of your days, especially while caring for your loved one.  Take charge of your life.  Do not feed the doubts, or listen to the negative aspects of your new lifestyle change.  Repeat to yourself that you are taking life one day at a time, and make the most of every day, even if it is a dark and dreary day.  Be thankful for your blessings and the days that you and your loved are sharing.
Learn to speak up and fight for your rights, and the rights of the terminally ill, or elderly person you are caring for.  Watch for signs of depression, in yourself and your loved one.  Some of the symptoms of depression include: inability to sleep, inability to concentrate, and a mind that constantly races, especially at night, sometimes referred to as circular thinking, lack of appetite, irrational behavior, crying, or irritability.  I was in denial of my emotions, unable to see the warning signs.

DYING WITH DIGNITY
While serving as a primary caregiver, encourage your loved one to be strong, to fight for life, and to be courageous.  Let the person you care for make some of the decisions.  Most of all, open your heart, your mind, and share your love.  Never leave your loved one without a touch of affection and the simple words I love you, because you may not have tomorrow to express those affections.  Discover the rights of the elderly.  And when the time comes, allow your loved one to die with dignity, if that is his or her wish.
Search on the Internet for caregiving issues, publications, and become an advocate about elderly care.  I found numerous websites, and I read them passionately late at night, when I could not sleep.  Stand up for your rights, trust your instincts, and support your loved one’s wishes.  Make the most of every day, without making excuses for mistakes you make, appointments you must cancel, or demands you can no longer meet.  Become familiar with the Family Medical Leave Act, and do not allow others, especially co-workers or a boss, to intimidate you.

After I missed so many days of work, my boss met with me, wanting to know why I wasn’t dedicating myself to work anymore. Suddenly it seemed I was not efficient at my job and I appeared not to be dedicated to working so many hours, including weekends. I cannot give my all right now, I said. My priorities are my family, not my job.

One month later, I resigned, taking another job with ‘flexible’ hours and compassion for my situation.
Walter W. Perkins died on July 6, 1999, and although I am no longer a caregiver, I still consider myself an advocate for elderly care, especially where the rights of residents of nursing homes are concerned.

During the many nights I failed to sleep, I wrote CONDITION OF LIMBO,” a memoir based on the stressful experience of serving as a caregiver, and the lack of assistance for terminal illnesses. Published in 2001, the book discusses many of the issues my father and I experienced while he desired to die with dignity.

NO ISN’T AN OPTION

During Dad’s illness, I never took no for an answer, and I learned everything I could about Medicare, Medicaid and the rights of the elderly.  I wanted to be the voice my father could not be because he was so gravely ill and frail.  I have no regrets, and I am proud to say my father was my top priority in life, during his illness, and residency in a nursing home.  Although he died while I was walking into his room for my daily visit, I know that he knew I loved him, and I was devoted to him.  He was my life, and now he is my shining star.  A few days before he died, he reminded me to make the most of every day of my life, and I still strive to live life to its fullest, remembering his wisdom, his love, along with the passions he held for others.

LIFE AS A CAREGIVER

You, as a caregiver, or a baby boomer, could be the next family member to walk into a nursing home or a hospital, while your loved one is dying.  Live for the moment, hoping to see the sunrise and sunset of a new tomorrow.  Never forget to share your love and special times with the terminally ill or elderly.

After the death of my father, I fell apart.  As I dug my way out of the darkness of despair, I realized I was lost in a world of depression, unable to confront my emotional well being.  It was my darkest moment.  I managed to join a grief therapy session, while I learned to accept his death.

WAKE-UP CALL

Watching my father battle the debilitating disease of esophageal cancer, as he struggled to maintain his dignity, gave me a wake-up call I will never forget.  Now, I make the time to search for flowers, rainbows, birds and butterflies  and I enjoy the little things in life while enjoying life’s effervescent sunrises and sunsets.

PROUD TO SERVE

Be proud to be a caregiver, while serving as a parent to your parent, and never look back!  Life is too short to be trapped into a spider web of despair and regrets.  We must remember to make the best out of a problematic situation, feeding the decisive moments, while forgetting the negative and hopeless feelings we as caregivers experience.  We must educate ourselves about caregiving.  We must trust our instincts, and know that what we are doing is not a sacrifice, but an act of unconditional love while we learn to adjust and place our needs aside.  We are sharing and teaching, and growing into the citizens and family members that we need and desire to be.  We must stand up, not only for our rights but also for the rights of those who we love during their hour of need.  With the support of our families, friends and other caregivers, we are building memories to cherish for the rest of our lives.
May God bless caregivers, the family members, and loved ones we care for; and may we as caregivers continue to find ways to improve the lives of the ones we love and want to remember — one day at a time!

 

https://www.amazon.com/Condition-Limbo-Barbie-Perkins-Cooper/dp/1588511774

 

On Father’s Day, 2017…


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Angel Oak Tree, a gorgeous tree embracing Johns Island, SC

Dearest Readers:

Happy Father’s Day to all of the father’s in the United States of America. Today is a special day, to give thanks and celebrate our fathers. From the moment we were born, most of us had a father. Maybe you have precious memories of your father, and perhaps there are some, like me, who have — shall I say — interesting, sometimes traumatic memories.

As a little girl, I looked up to my father, sometimes squealing for him to scoop me into his arms. However, at five-years-old, I saw a different side of my father, and I must say, he scared me. At the time, we were living in the projects in Atlanta, Georgia. I hated the projects! My mother loved to go outside and gossip with all of the nasty, ugly, snide women who lived in the projects. On one crisp Saturday morning, my mother was outside. Sitting by the curb, legs spread wide open, wearing a dress. I couldn’t understand why my mother always told me to keep my knees together when I sat, wearing a dress, when she didn’t practice what she preached, but I listened and I didn’t dare open my legs wide in a dress. On this morning, Mom was laughing with the women, talking about the neighbors, the fighting and the ugly gossip always shared when wicked women get together.

I was sitting on the back porch playing with my dolly when Daddy opened the back door, screaming for my mama. She ignored his call. I looked at my daddy, seeing an evil look in his eyes. He pointed his finger at me, shaking it furiously he said: “You go get your mother and tell her I want to speak with her.” He paused, and then he screamed at me, “NOW!”

“Yes Sir,” I said, placing my doll on the floor of the porch.

I ran as fast as my little legs could move. “Mama, Daddy wants you. He’s been calling for you.”

She laughed, scratched her inner thigh and looked at me. “Well, girls I guess I better jump and go to him. You all know how these men in the projects get if the little woman doesn’t obey.”

They laughed. As Mama rose, Daddy met her. He shook her shoulders. Words were expressed, but I can’t remember exactly what he said. She laughed, then thrust her arms at him. He pushed her, knocking her down on to the concrete next to the metal trash cans. Mama hit her head on the trash can and when she fell she bruised her knees.

The gossipy, wicked women rushed away.

I struggled to help my mama up. I looked at my daddy, standing tall. Anger seeping from his eyes. I put my hands on his legs and said, “Daddy move away. Mama’s coming. Don’t push her anymore. That was a mean thing to do.”

I suppose one could say, on that day, I became the referee for our family. I was the middle child, but I refused to tolerate abuse and every time I was around, watching my daddy and my mother fight so dreadfully, I remember squeezing into the middle of the fight, placing my arms out to make them move away. I would always say, “Daddy. Mama. Stop this fighting. If you want to beat someone, beat me!”

When I was fifteen, I stopped the final fight. I arrived home from school. Excited to share that I had a lead in a musical! I was so happy and proud of myself on that beautiful Tuesday afternoon. Walking inside the house, I heard shouting and I knew, another round of fights was on. I listened to the shouts, cursing and the horror. I knocked on the door, then I pushed it open. Mama was bending down, gasping for breath. Her face was blue. Daddy stood, watching her, holding a stack of mail.

“You two need to stop this,” I screamed. “Look at her. She’s having difficulty breathing. You need to stop this fighting before one of you kills the other. One of you needs to leave.”

Daddy threw the mail in my direction. “Look at this. Just look at what she did. She bought a diamond ring and didn’t tell me. Now they’re going to garnish my wages. We’ll have to file for bankruptcy. Just look at what she’s done.”

I glanced at one envelope stamped with an orange Past Due notice.

“The fighting needs to stop before one of you goes to prison,” I said.

Little did I know how things would change.

The next day, I walked home from school, trying to work things out in my head. I knew domestic abuse wasn’t healthy in a family situation. I felt helpless. I had no one to talk to. None of my relatives would understand and I was certain if I said anything to anyone, I would become the trouble maker of our family. I remember hearing people saying fighting in a marriage was “normal”… “A Family Matter…”

Opening the door to the house, my mama was sitting on the couch in tears.  She rushed at me. “This is all your fault. I hope you’re happy now. Your daddy left us today. He’s dead. Dead. DEAD. I never want to hear his name again in this house and you are never allowed to talk to him, or mention his name again!”

The following Saturday, Mama moved us to Columbus, Georgia. Four children. One adult, living in a two bedroom mill village with our grandparents. To say we were crowded for space is an understatement.

I had to follow the rules:

Church on Sunday.

Wednesday night prayer meetings at church

No makeup (I broke that rule)

No rock n’ roll music, only Christian music

Go to school

Nothing more.

I hated this new life and rebelled. No, I never did drugs. Never tried alcohol. I rebelled by staying alone, taking walks, retreating to the Chattahoochee River. At school, I became a wallflower, refusing to try out for plays, musicals, or anything interesting. I wrote to my dad, letting him know I loved him.

Never do I really remember celebrating Father’s Day for my dad as a child. As a grown up, married with a child of my own, I chose to make Father’s Day special. I bought cards for my dad. When he visited us, he was different. I actually heard him laugh, and I watched him playing with my son. Gone from his demeanor was the anger, hatred, and abuse. Never did I hear my dad say anything ugly about our mother after their divorce. He was truly a changed man. No violence. No shouting. Just a kind, and loving man filled with Laughter and Happiness within himself.

In December, 1997, my beloved father became ill with esophageal cancer. Serving as his caregiver until his death on July 6, 1999, I truly saw a beautiful person within his demeanor. On one occasion, he thanked me for what I said on the last day before my parents separated. He admired my strength to serve as the referee. To my knowledge, no one within our family circle knew about the domestic “family matters” of our family.

As a writer, I’ve written many articles about domestic abuse. How it changes a family. How it paints a vivid, horrifying picture about marriage and I vowed to myself that no one would ever abuse me. I suppose I overlooked another side of domestic abuse – the verbal abuse, and for years, my husband who suffers from Post Traumatic Stress Disorder [PTSD] from Vietnam, would get into rages, shouting at me. Once, he shoved me and when he did, I fought back, standing firm to him, letting him know he had to stop his rage, or I would end the marriage.

I’m proud to say, we worked those issues out, and now, we do not scream, shout or verbally fight. Our home is a happy home. Father’s Day is always special. I give thanks to God for guiding me and giving me strength.

And so, on Father’s Day, 2017, I give thanks to God for all He has given me and my family. It is my wish for all of you reading this, to please take a moment to give your father a bit of special care and love on this Father’s Day. Although I am still sick with bronchial asthma, I will find the energy to make this a most special Father’s Day, to my dad in Heaven, and to my husband while he sleeps.

HAPPY FATHER’S DAY to all the fathers!

Thinking of Sir Shakespeare Hemingway


035Dearest Readers:

Yes. I know, I’ve been a bit negligent with writing in my blog. If you recall, on March 7, 2017, I lost one of the loves of my life. My little Sir Shakespeare Hemingway. My life appeared to stop after losing him. I cried. Oh…How I cried. The tears were an endless, rushing ocean of tears I referred to as a tsunami.

My friends didn’t understand. Heck. I wasn’t certain I understood. I kept telling myself that I had to move on. After all, after the death of a loved one, life continues. The sun still shines. The rains pour. Bills are due. Life continues. But how? How could I learn to live without little Shake n Bake?

I do not have an answer to that question. I still called his name. I looked for him outside, resting on the corner of our lot, where he always rested to get his sunshine. He loved sunshine. I clapped my hands three times, so he would hear me and realize he needed to come inside, only he wasn’t there. I prayed for God to guide me and to ease my grief. I needed a sign and one morning, a fly flew into my coffee cup. Shakespeare knew me well enough to realize I wasn’t a bit of good to anyone without my second cup of coffee. On that morning, I picked up the coffee cup, ready to sip the second cup, only to find a fly floating in the cup of hot, fresh coffee.

I laughed! “Shakespeare,” I screamed! “You sent me a sign. Thank you. Thank you.” Tears rushed down my face again. Another torrential endless waterfall of fresh tears I could not stop.

I must explain. The water bowls for my dogs are strategically placed in the kitchen, bedroom and where I write. If Shakespeare was thirsty and something was in the water bowl, he refused to drink. He would place his paw in the bowl, attempting to remove a dead fly, or a bit of dirt. If that didn’t work, he would kick the bowl over, to let me know he wanted CLEAN water, not a dirty bowl!

So Shakespeare!

In four days, Shakespeare will be tucked safely inside my heart for three months. Yes. The tears are flowing again, and even though I am blessed with other dogs, I cannot stop these tears at times.

This week I’ve been super busy caring for my husband. He awoke on Wednesday with chills and fever. Knowing enough about medicine and health to understand that when one has chills there is normally an infection inside the body. I mentioned this to my husband. Of course, he grumbled, called in to work and stayed in bed. I decided it was best to ignore him. After all, I had planted the seed that he probably had an infection, or maybe…  he had pneumonia.

About 15 minutes later, he walked into where I was sitting at the computer. “I think I should go to ER.”

“That’s probably a good idea.”

Shutting my computer down, I changed clothes. Off we go to the infamous Ralph H. Johnson VA Hospital, ER. No doubt, this day will not be productive for a writer.

We arrived at ER about 8:30, maybe a bit later. Checked in to ER and waited. Moments later, someone calls his name and we enter ER. Those of you who know what it is like to go to a VA hospital will understand just how long it takes to see doctors. That didn’t happen for us. The doctors arrived, checked him over, ordered tests, chest x-rays, blood work, etc…Etc! At lunch time (1 o’clock or so) Phil mentions he is hungry. The nurse (a wonderful, caring male nurse) mentioned he would order him some lunch. Phil suggests that I go to the cafeteria and get some lunch since I haven’t eaten either.

“Oh, no.” I said. “I remember how disastrous their salads were the last time we were here. I’ll be OK.”

When the lunch arrives, it is much to my surprise, lunch for two. I seem to recall that when Phil and I were chatting earlier about my going to the cafeteria, I mentioned they would bring him lunch, but the wives, or caregivers who were with the veteran were treated as second-class citizens. “They do not consider how we might feel or we might be hungry and hesitant to leave the area since our veteran is sick.”

Oops. Looks like my voice must’ve been heard I say quietly as I open the box to a hamburger steak, lightly covered with gravy. Well done, limpy vegetables and cold egg noodles, but what the heck. I’m hungry! Believe me, I’ll not complain. It was a most considerate thought for the nurse to order two lunches!

About 2pm, the doctor returns. The diagnosis, “a bit of pneumonia.” When he shares the diagnosis, I think to myself  — Is that like a little bit pregnant?  I remain quiet. Listening…

Today, Phil is resting still. Earlier, when I checked on him, he was coughing. How I pray this ‘bit of pnuemonia’ leaves him soon, and I pray I do not get it. I’ve had pneumonia three times as an adult and when I get it, I am sick for weeks.

And, so today, while at the computer, I attempt to write again. Something I haven’t done much lately. At times, I don’t feel like a writer anymore. I suppose I’ve allowed myself to be lazy about writing. I must change that behavior and get myself back to the busy-ness of writing.

For now, I must go make my infamous homemade waffles for Phil and I to share for breakfast, or maybe an early brunch.

I’ve made a promise to myself this week. A promise to write more on my blog and a promise to get the story of “Chattahoochee Child,” completed.

I simply must WRITE again! Maybe in memory of Sir Shakespeare Hemingway who always rested curled at my feet when I wrote. I still find my left foot moving ever so slowly next to his curled little warm body so I can rub him while writing. Only now…that precious little boy isn’t there. Will this grief ever leave? What can I do to make it leave me? I don’t have any answers, but my heart is so full of his love.

 

 

 

 

 

 

Dearest Caregiver…Becoming the Parent to A Parent…


Dearest Caregiver:
My heart breaks for you as you so suddenly see yourself walking in the shoes of a caregiver. Sometimes, these shoes are high heels. You go to work as a professional. You work all day while wondering ‘how is my mother or my father doing today?’ Maybe the shoes you walk in as a caregiver are flats, or comfortable sneakers. It doesn’t matter what you wear on your feet, your ache is a recurring ache your feet and body do not understand.
You wonder — just HOW did this happen? Maybe you didn’t understand your parent was ill. I didn’t in 1997. Yes, my dad had lost weight. Foolishly, I took it that since he lived on a fixed income, perhaps he could not afford to eat as healthy as he should. At Thanksgiving, I asked him how he was feeling. Mr. Independent, an affectionate description I called him sometimes, was much too independent and proud to ask me for help, and so I took his response of “I’m fine,” as the truth. Three days later, he phoned me after work, telling me he thought he had cancer. He needed to go to the doctor.
We rushed to ER. After seven hours of diagnostic testing, the ER professionals suggested my dad needed to see a gastroenterologist. Two days later, I screamed when the doctors told me my dad had esophageal cancer.
“How can this be?” I asked. “How can my dad be sick?”
My dad lived in an affordable retirement community. He had many friends there. Sitting down to grasp the heartbreaking news, I recognized I was so wrapped up in my professional life, I did not recognize my dad needed me. He was 84-years-old. Living alone, he walked all over the sidewalks and streets of historical Charleston, SC. Never did he ask for money, or anything from me. He excused my busy life. He was proud of me since I worked in the educational field. He understood I didn’t have time for him. He understood that not only did I work ’40-hours weekly’ my weekends were devoted to recruiting students for the university almost every weekend.
I heard myself whispering as I wiped tears from my face. “Dear God, I’ve been such a fool. My dad needs me. He NEEDS ME.”
I took a leave of absence from work. An endoscopy was performed on Dad. He had a tumor on his esophagus. A tumor that was too difficult to remove.
I met with an oncologist. He suggested Dad needed chemo/radiation therapy and a feeding tube. He could not keep food down. He was choking and extremely weak. Dad weighed 130 pounds. Previously, he tipped the scales at 175. The oncologist wanted to know what I wanted them to do. He stressed Dad needed the feeding tube since he was malnourished. If he didn’t get some form of food intake, he would probably die within two weeks. I looked up, tears still gushing down my face and I said, “My dad is an independent man. He needs to make that decision.”
Dad fought to live from December, 1997 until his death on July 6, 1999. During that time, my focus was my dad. When it was suggested that he needed ‘skilled care,’ I inquired as to what the definition of skilled care was. Suddenly, I was learning a lot about serving as a caregiver. I was the “Parent to my Parent.” I made decisions about his care. I found ways to jump through the hoops to get him the care he needed and deserved. I learned a lot about diplomacy, refusing to take “no” as an answer. My dad and I became closer than ever. I visited him daily regardless of where he was. He moved from hospital to nursing home. Back and forth again and again as he weakened and I found ways to save his nursing home room and roommate. Never did I let Dad know the hoops I jumped through, just to get him the care he deserved. I met with nursing staff. I found an Ombudsman, a young and caring medical professional who shared her knowledge with me so I could get my dad the medical care he deserved.
I am hopeful things have improved since 1999. After Dad’s death, I wrote “Condition of Limbo,” describing in detail what it was like to serve as a caregiver in a community that appeared to be ever so negligent where caregiving was concerned, along with the medical care.
Now, I have several friends who are becoming the “parent to a parent,” and they ask me what they should do to make certain their mother or father is cared for properly. After listening to their story, I’ve decided it might be easier to share my experience on my blog:
I continue praying for your family, your mother/father and you, hoping each day will be a better day for all of you. Many times, it isn’t. What I share at that time is for you to fight and pray…to believe that tomorrow will be a better day. Yes, clichés. Clichés helping us to see the sunshine while the pain you are feeling is almost indescribable. It is true you should take care of yourself; nevertheless, right now, you probably are losing sleep. You are too afraid to give in to sleep, in the event ‘something happens to Mom or Dad.’
As I’ve stated previously, I walked in similar shoes when my dad became terminally ill with esophageal cancer. I blinked my eyes as I realized I was now the ‘parent to my parent.’ Suddenly I was making decisions my father was much too ill to make. You wonder – how do I do this? How do I make decisions HE/SHE should be making?
All I can suggest for you is to take each day “one day at a time.” When meeting with medical professionals for “skilled care” — a description they do not identify or describe. Skilled care means 24-hour nursing care…make certain you document the dates/times, names, titles, and most important, document what they say. Save these notes. They might become important at a later date — according to the Medicare and Insurance regulations.
How I wish I could be there with you. While I do not proclaim to be a professional regarding ‘caregiving’ walking in those shoes in 1999 was a wakeup call for me. Please get some rest. Ask if the hospital has an atrium, or a chapel. Step inside and let the tears flow. That is what I did one afternoon at Roper Hospital in Downtown Charleston. Their Atrium was newly built. I found a balcony, and there, I cried. I screamed and I shouted for God to listen to me. No one but God could hear me when the rushing traffic congestion drowned out my heartbreak.
I’m sending virtual hugs to you, and I am praying, repeatedly. God is there. This too shall pass. Praying for your mother or father to become strong enough to get to the rehab center, and I am praying for you to rest and get additional emotional strength.
You might ask yourself: “What do I do if my parent comes home. Is he or she able to care for themselves? Do I hire a nurse, or do I move in?”
In a perfect world, you might ask other family members to help. Unfortunately, I did not have that luxury. I was estranged from family members at the time. Fortunately, I swallowed every ounce of pride I had to find my family and to let them know our father was terminally ill. I am happy to report, I have one sister I stay in contact with now and we are closer than ever.
Walking through life when you become the parent to your parent makes one stronger. I would like to say it is a wakeup call to the importance of family remaining close; however, life does have a way of changing us and at times, the true character of a family member can be revealed. Sometimes good, but most of the time – bad. While my dad battled cancer and grew weaker, I actually had one sister write Dad a letter — stating something to the effect of: “I’m sorry you’re so sick, but I have to work so I can’t come to see you.” Her next statement in the letter was: “So tell me Dad…am I STILL in your Will?”
Thank God she lived eight hours away. I wanted to strangle her.
Watching my dad slowly melting away from life taught me to take each day one day at a time, and to slow down to appreciate the little things in life. I visited him in the nursing home daily, unless my bronchial asthma kicked in. On one occasion, Dad was reading his Holy Bible. When he saw me entering his room he screamed at me. “You get out of here,” he shouted. “I want to read my Bible.”
I felt rejected. How could he speak to me in such a manner? Didn’t he know I loved him and wanted to be with him?
After researching caregiving, I realized my dad was detaching from me. He did not want me to see his pain, or to watch his body slowly fading away. On the day of his death, I had a dream/vision in the early morning. I phoned the nursing home at 3:45am, inquiring how he was doing. They checked on him, reporting he was sleeping soundly. That afternoon, after a stressful day of working later than I planned, I entered the nursing home at 5:45pm. I ran into a nurse pushing an oxygen tank. She looked away from me, moving next to me.
“Ooh…that isn’t a good sign,” I said. She nodded. When she placed her hand on the doorway of my dad’s room, I screamed. I knew what was happening. The nurse pushed my hand away from the door. “You stay here,” she said.
Someone moved me to a couch. I sat down, tears pouring like an endless waterfall from my eyes and I sobbed uncontrollably. I knew the day of dad’s departure from me was here. I also knew I had to let him go.
After his death, my independence kicked in. I managed to plan the funeral. I moved like a zombie, without emotion or pain. I prayed for God to give me strength. Now 17 years after his death, I still miss him. There are days when I feel totally empty of emotions, and I have days where he is tucked safely inside my heart. I do not regret serving as his caregiver and I am proud we became closer and closer as he slowly melted away from me. Today, I am proud to say I was his daughter and I am pleased to share my experience with others who unexpectedly become:
THE PARENT TO A PARENT.
If you walk in similar shoes, I would love to read your experience and I am praying Medicare changed many of the regulations after 1999. If you are a caregiver, may God bless you as you care for a parent who taught you how to walk, how to talk and how to become a strong, independent and proud adult. Once my dad pushed me in a stroller. When he became so ill with cancer, I helped guide him with his walker, and later I pushed him in a wheelchair. But only once! He hated a wheelchair, refusing to sit in it again.
Yep. That was my dad. A proud, tall, striving to be independent 84-years-old man. Never did I see his elderly age. All I saw was — my father…My Dad! How I miss him!