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

 

What Exactly Is A Good Ol’ Boy?


Dearest Readers:

Silly me. I thought the year 2018 was a portion of the Twenty-first Century. Not exactly where non-profit organizations are concerned.

I’ve dealt with non-profits for years, volunteering to write and serve as the editor for many of their publications, including newsletters. To be respectful here, I will not name the non-profits I’ve worked for, but there were many. My newsletters won awards for a military non-profit, for a not-for-profit school, and a few more organizations.

During my years as volunteer editor, never did I get compensated for any of the publications, research and writing, editing. Not even a you did a good job from several ‘good ol’ boy’ organizations.

Every newsletter I created had to be approved by the powers that be, aka the good ol’ boys. This delayed the process, but I didn’t mind. If someone complained to me that their newsletter was late, I referred them to the ‘good ol’ boys.’ After all, they had the final word.

On one occasion, I submitted a newsletter for ‘approval’ only to be told I had to remove the news about a soldier getting killed in Afghanistan. He was a resident of South Carolina, but not a local for the publication. I was told to remove his story. It wasn’t ‘newsworthy…’ And why not, I asked?

The reply I received was “You only need to write about our area, not the State of South Carolina.”

A soldier who lived in South Carolina died fighting for our country, but we should not share the story of his bravery, courage and loss? Isn’t this America?

Silly me. I was under the impression in America we could voice our opinions and tell the story. To say the least, I was flabbergasted!

Censorship!

Humph! Let me rethink ‘censorship:’ Censorship, the suppression of words, images, or ideas that are “offensive,” happens whenever some people succeed in imposing their personal political or moral values on others. Censorship can be carried out by the government as well as private pressure  groups.

https://www.aclu.org/other/what-censorship

As a writer, I do not believe in censorship. After dealing with the “good ol’ boys” I chose to resign as the newsletter editor. It simply wasn’t worth wasting my time on a bunch of “good ol’ boys” who wanted everything ‘their way, or the highway.’

I’ve had more opportunities to work with non-profits since that time. So far, all of them approaching me wanted me to work for free since ‘a freelance writer doesn’t get paid.’ How dare them!

What? More ‘good ol’ boys.’ I believe it is sad when so many organizations want everything their way and they refuse to listen to the opinions of a professional writer, or members of their organization.

I must admit, the publications they’ve written and published are always filled with typos, improper grammar,  and mostly writing that makes an impression. A BAD impression!

So, here’s to the ‘good ol’ boys.’ It really is sad when they refuse to move into the 21st-century!

 

Chattahoochee Child – Excerpt


Dearest Readers:

Posting a bit of the story I’ve had dancing inside my heart and soul for many years. Too many years to mention. Yesterday, I realized I have to let go and write this. I hope you enjoy.

 

Yesterday, my husband and I went to the theatre to see “I CAN ONLY IMAGINE.” Based on the song, “I CAN ONLY IMAGINE,” recorded by Mercy Me in 1999, I remembered when I first heard this song and how the lyrics affected me. My dad passed away in July, 1999. I was in such a severe depression after losing him, I prayed to die, realizing I was being selfish. I still had life to live. People to care for and love. Visiting with my doctor, she asked if I was suicidal. I laughed, realizing she knew me better than I knew myself.
How can a song affect someone so passionately? Writing this question out, I recognized I failed to have an answer. Kneeling at my special window, I looked up into the Heavens and prayed, only this time, my prayer was different. I asked God to help me live and to learn to forgive.
My mother and I were alienated since 1988. After my high school class reunion, I discovered my mother told our little boy his mother was a whore and a drunk. The morning after the reunion, little Michael David rushed to me asking me what was a whore. “I know what a drunk is since Grandpa in Charleston is a drunk, but I’ve never heard the word whore. What is it, Mommy?”

I scooped his tiny body into my arms and bear hugged him. “Mommy is not a whore. A whore is someone who goes out with other men and sleeps in the bed with them. I’m not a whore, Michael David.”

“Granny called you a whore. But you only sleep in the bed with my daddy, Mommy.”

“It’s not a nice name and it’s a word you should not speak again, at least until you’re grown.”

“Why would she call you that word?”

“Granny doesn’t love Mommy the way you and Daddy love me. That’s a good question, and I will ask her in a minute. You go back to sleep.” I kissed Michael on the cheek, tucking him in with his father. I slipped on my robe, walking toward my mother’s room.

I knocked three times. She opened her eyes. “Why did you call me a whore?” I shouted.

“I did no such a thing.”

“Yes, you did.” Michael stood next to me. “You said my mommy was a whore and a drunk.”

The argument continued for an hour. Garrett awoke to the shouting. Recognizing this conversation would be an eternal shouting match of two stubborn women who butted heads all the time, he said we were leaving. I grabbed our luggage and stormed out of the house, refusing to look back.

I cried an endless ocean of tears from Columbus, Georgia to Charleston, South Carolina. Michael David apologized for starting the argument. I responded that he was not the problem. My life as a child of the Chattahoochee, the daughter of a woman who could not show love at all, was the problem. The only solution was to build my life with my family, Garrett, and Michael.

In 1988, I realized home is where the heart is. My heart was in Charleston, not Bibb City, or the Chattahoochee. My life in Charleston was filled with suburban roots, and a solid brick foundation, not a detour route of housing projects, mill villages, shouting matches and nothing to refer to as home. The windows to my world reflected love, pride, and ambition. I pinched myself to bring myself back to reality. I did not wish to remember the annoying disconnections I shared with my mother, nor did I want to walk in her footsteps.

I lost my mother on September 11, 2002. She died a ‘questionable death,’ after battling to survive a stroke. Since that time, I’ve discovered she choked to death by inhaling nuts. My mother was allergic to nuts. Her body was paralyzed on the right side. How she was able to inhale nuts and choke to death is a question I need answering. When my sister phoned me telling me of her passing, the one question she repeated to me was: Do you think they’ll do an autopsy?

Interesting question I failed to understand since I was ill with acute bronchial asthma at the time and failed to comprehend what my sister was asking.

Do you think they’ll do an autopsy? Interesting question…

I can only imagine!DSC_0061
 

Weight Watchers Is Not a Diet – It’s A Community of People…


Dearest Readers:

This will probably be a short posting about something we learned at the Weight Watchers meeting Thursday, March 8, 2017. Two of my closest friends in Charleston are Tammy and Sara. Neither were at the meeting on Thursday…Just me, my shadow and other friends I’ve met thru Weight Watchers. Tammy moved to Florida a few months ago. How I miss her. Sara is out of town. We are keeping in touch and I need to send Tammy a text – something we do lately on Thursdays.

On Thursday, I lost .06 pounds. I’ll take it, I said – finally happy to be losing again. I hit plateaus that seem to last FOREVER. My goal was to lose 15 pounds by my class reunion in May. Since I lose so slowly, I do not believe I’ll achieve that goal, so now, I’m saying I’d love to lose five pounds by May. I’m hopeful the dress I bought two years ago will fit. I’ll let you know about that goal IF I wear it to the reunion. More on that – Later!

Looking around our meeting room at Weight Watchers I realized I joined this amazing group of ladies, and a few men, seven years ago. Back then, I wanted to achieve my ‘goal weight’ that year. Believe me, I’m still struggling to achieve that goal weight — WHATEVER the goal weight is for me. No one has mentioned I should weigh this ___, or I should weigh that ___! I realized it is up to me, and maybe my doctor, to select my goal weight; nevertheless, If (and WHEN) I reach that number, I will weigh less than I weighed in high school. I confess, during the four years of high school, I attended six high schools!  No, I wasn’t the kind of student to be kicked out of school. Changing high schools so many times was simply because my parents moved us as a family, and when I was 15, my parents separated and divorced, so we moved to Columbus, GA – to a mill village.

Needless to say, my teenage life was a life filled with stress, the inability to make friends, and many unpredictable situations I’ve written about on this blog. Fortunately, I graduated from high school and now, I’m happy to have a fulfilled life in Charleston, SC.

As mentioned, losing weight is not an easy task for me. Now, I’m back to working out and using the Freestyle of Weight Watchers.

During our meeting on Thursday, someone mentioned that Weight Watchers IS NOT A DIET…IT’S A COMMUNITY! How interesting and true that statement is. We have ladies (and a few men) wanting to lose weight. One special lady has been ‘lifetime since she was 17!’ She’s had many setbacks, but to look at her now, she is beautiful, slim and such an inspiration, especially to me. Other women have fought and struggled many times. Just like ME! Nevertheless, all of these Weight Watchers admitted they could not lose weight alone. They had to attend meetings! They had to face the scale once weekly, and they had to keep attending meetings. So like me! A beautiful lady sitting next to me stated she had her son’s wedding coming up so she understood my goal of ‘knocking ’em dead.’

I must confess, in high school I was a wallflower. My parents were divorcing. We lived with our maternal grandparents in a two-bedroom mill village house – with one bathroom. No washer, or dryer. No air conditioning. Simply a TINY house of brick and mortar. I did not make many friends in high school, nor did I date high school guys! Why would I? If I did, we as a family would pack up and move again. We lived like gypsies. Never having a home that would build me into the woman I am today. When I go back to my ‘home town’ I do not have any roots to remember. NOTHING. I thank God I survived and didn’t end up as a child with many problems. I credit that reality to my stubbornness, determination and independence and attending church regularly!

The one indiscretion I did have, and still have is the hunger for food. My grandmother made the most fluffy and delicious homemade biscuits ever. They seemed to just melt in my mouth and each time she made them, I ate my share. After my husband’s heart surgery in 1998, I changed the way I cooked, learning to cook healthier. Fortunately, I never learned to make Grandma’s homemade biscuits. Each time I tried, my husband called them hockey pucks. I do believe his description is correct!

My friends still ask me, “Are you STILL doing Weight Watchers?”

Yes. I’m still doing Weight Watchers and when I reach Lifetime, I will continue attending the meetings on each Thursday. I remind myself: This I do for ME! Nothing interrupts my Thursday meetings. I will miss my meeting when we go to my class reunion, but the next week I’ll get back on that scale again, still seeking “Lifetime!”

After all – for me, Weight Watchers IS A COMMUNITY. A community of encouraging women (and a few men) — haven’t I said that before? Even if we, as a community, have only five, 10, 20, 30, 40 or even 50 pounds to lose, together we can do this. I have anchors I use to remind me to continue. One of my anchors is a poem I repeat daily:

“It’s when things seem worse, you mustn’t quit,” and I say: “This too shall pass,” whenever I gain. I’ve learned not to beat myself up when I am not successful, and I keep reminding myself that Weight Watchers is what I do for me. No one else. No, I’m not working out daily and doing my best to lose weight for my husband, family, or shame. I am doing this for me. I look in the mirror daily. I wear makeup – DAILY. I style my hair – DAILY and now, I do my best to be accountable and to accept whenever I gain, or lose only “.06 of a pound.” A loss is a loss, I tell myself. Together, as a community WE can do this!

After all, Weight Watchers IS my life now! Next Thursday, I’ll be at the meetings. And the next….and the NEXT….continuing my journey to lose my weight, and to look the best that I can look at the class reunion and beyond!

Yes, I’m vain. I want to look the best I can look – for eternity and ‘beyond!’DSC_0061

 

Remembering Sir Shakespeare Hemingway


035Today, March 7, 2018 is an extremely sad day for me. Today is the first anniversary of losing my precious mini-schnauzer, Sir Shakespeare Hemingway. Exactly one year later, I am still heartbroken over losing him. Over making the decision to allow him to go to Heaven so he would not suffer any longer.

On the morning of his loss, when he struggled to walk outside, his rear legs gave out on him again. Those precious little energized legs split apart. He fell down and looked at me, as if to say, “It’s time. I’m tired. I’m weak. I’m sick. Mommy, please do something so I will not ache anymore.” His legs were so weak he could not lift them like most male dogs do when they potty. He was pitiful, deteriorating right in front of my eyes.

Sir Shakespeare was born on April 11, 2003. On April 12, 2003, I met him. There were three newborn puppies. The female was promised to someone else. I touched both male puppies gently, rubbing their ears. Little Shakespeare, the “piglet” responded with a slight moan and I knew he was the pup we wanted. He fit into my hands and I kissed him on the nose while whispering his name: Sir Shakespeare Hemingway. We visited him weekly and when he was six weeks old, I was told he could go home with us. I wrapped him in a blue blanket and we brought him home. Little Shake n’ Bake squirmed from my lap onto my chest, and there he rested until we arrived home.

Independent. Affectionate, and a unique personality – that was Shakespeare. We communicated. He slept with me, always wanting to rest on my hip – touching me. Always. He did not like it if I asked him to please move over. He responded by scooting his little body over, grumbling the entire way. In the morning, he would climb on top of me. If I didn’t respond, he reached out with his left paw to touch me and awaken me. His eyes stared deeply into mine. I kissed his nose.

When I was sick with acute bronchial asthma, Shakespeare followed me around like a shadow. He would kiss me once, then he crawled onto my chest, sniffed at my nose and mouth and refused to move. He was my nurse, caring for me while he listened to the wheezing in my chest. He would not move away from me, even if I asked him to. He simply stared into my eyes, as if to say: “I’m taking care of you. You’re sick. You need me.” He fell asleep on my chest and when I awoke, he was there. My nurse. My loving, caring little Shakespeare.

Over the years together, we walked daily, until Shamus died. Shakespeare would lead us. Occasionally, he stopped to smell a flower, or to feel the fresh breeze blowing in his ears. Sometimes he would pick up a stick and carry it while walking. He had a phobia of darkness if he was alone. On one night my husband and I got home a bit late. The breakfast room was dark. Shakespeare and our other pups slept in this room if we were not home. On this night, when Shake n’ Bake heard the car, he was barking a loud and vicious bark. When we walked into the room, he jumped on my leg, still barking. He was reminding me that he was in the dark and he was frightened. Don’t ever leave me in the dark again. You know I hate being alone in the dark.

The next morning, I placed a lamp on a table in the room, turned the light on and never left it off. Shakespeare would not be in the dark again.

As he grew older, his appetite grew. He would eat his food and if another of our precious little friends hadn’t finished their food, he would attempt to move them over so he could eat again. During his yearly wellness check-up when he was 10-years-old, the vet suggested giving him green beans and less food. Shakespeare lost weight, weighing in at 24 pounds, losing six pounds.

In September, 2016, after grooming, I noticed Shakespeare was still losing weight. Occasionally, he turned away from his food and wouldn’t eat. I struggled to feed him from my hands. He wasn’t hungry. His legs began to give away and when he went outside, he would move to a corner of the back yard, ignoring me asking him to come inside. His hearing wasn’t as good as when he was younger. I noticed if I clapped my hands three times, paused and clapped three more times, while shouting “Come here, Shakespeare” after a few minutes, he would get up and move slowly towards the door.

Although I could see Shakespeare fading away, I refused to accept it. I wanted him to fight. I cradled him in my arms, telling him I loved him and I wanted him to fight. He responded by licking my face, jumping from my arms, and when his feet hit the carpeted floor, he whined.

Our nightly ritual of cuddling in the chair no longer happened unless I picked him up, and when I reached to pick him up to cuddle with me, he wiggled, moving his back legs like spaghetti. He was in pain.

The vet said he was getting older. He reminded me that most schnauzers have a lifespan of about 14 years. Shakespeare was 13. He would be 14 in April. I wasn’t ready to lose him.

Over the next six months of his life, Shakespeare wanted to go outside less, and when he did go outside, he squatted. He could not lift those painful rear legs like most boys do. He would look in my direction, as if he was saying, “Don’t watch me. Don’t watch me fading away from you.”

In December, Shakespeare could not hold his bladder. He would urinate on the floor in the breakfast room. Sometimes he would do other business there. We placed puppy papers on the floor nightly since he was sleeping there now. I let him know I was not upset with him. I understood. His body was getting older and he was fading away. He licked my face to let me know he understood and he loved me.

On March 7, 2017, we made the decision to have the vet check him over and see if it was time to let him go. Our vet knows how much we love our animals. After examining Shakespeare, he looked at me with tears streaming down my face he said: “You’re making the right decision.”

I held Shakespeare in my arms. I told him it was time to see Shamus again. He lifted his left paw, touching me, and he kissed me one last time.

My arms were holding him as he went to sleep. The vet gave us a few more minutes together, then he asked if we were ready. Since Shakespeare was sleeping, I nodded. I heard Shakespeare’s last breath, and he was gone.

How I wanted to bring him back, but I knew he was suffering, weighing only 17.6 pounds on this date. He was so tiny now it was easy to pick him up. After losing him, guilt almost tore my heart out. I questioned everything while realizing we did the most humane thing by letting him go. I did not want him to die alone in the house with only his brothers around, nor did I want him to die in darkness.

I prayed that God would welcome him into the gates of Heaven and let him find Shamus so he would not be alone. I reminded God that Shakespeare did not like the dark, and I prayed for a sign to let me know he was ok and happy.

A few days later, I found a fly inside the house, flying around my desk. I was writing at the time so I did not pay attention to the fly until I found it floating inside my coffee cup.

“Shakespeare!” I cried. “You’re here. You’re letting me know you are OK.”

Through blinding tears, I smiled, remembering how Shakespeare detested when anything got in the water bowls, especially IF it was a fly. He would sit while taking his front paws, moving them into the water, attempting to remove the fly. After a few minutes, he would bark – his demanding little bark. He refused to drink any dirty water, or water that contained a fly.

Staring at the fly floating in my coffee cup, I picked it up, poured it out and washed the cup, while remembering my precious, silly, demanding Sir Shakespeare Hemingway.

A few nights later, I had a dream. Shakespeare was sitting on a hillside with the greenest pastures I’ve ever seen in life or while dreaming. He barked and wiggled and barked once more. In the brightness of the lights of Heaven, Shakespeare barked one more time, then he turned to run away while looking in my direction. Yes, Sir Shakespeare Hemingway Cooper was in Heaven, playing with Prince Marmaduke Shamus Cooper. Little Shake n’ Bake and Shamey-Pooh were together again.

Yes, today is a sad day for me. A day of remembrance and so much everlasting love.

1393110-R3-013-5

THE ROLE OF A WRITER


 

A writer’s life is a life filled with intrigue, creativity, influence, and curiosity. Writers are famous for being temperamental and are typecast as being extremely difficult to live with, especially when the virus of writer’s block threatens the train of thought. Some writers are college graduates; some are simply graduates of the hard roads of life, or the school of hard knocks.

To qualify for this invigorating, somewhat excruciating lifestyle, a person needs to have the will and determination to accept rejections, the perseverance to try again, and the strength to survive whenever the chips are down.

The writer must be able to express him or herself in a manner that is confident and easily understood. A writer is a communicator. He needs to feel comfortable sharing human experiences. He must be expressive and able to let others share his pain, or his joy. Knowledge of the English language, sentence structures, composition, and how to organize thoughts in a comprehensive order is imperative. The writer must pay close attention to details, characterizations, and life. He has the ability to express what others can only feel, with a passion and sensitivity that can touch hearts and change lives.

Many writers share a knowledge and intense hunger for deep feelings and an endless curiosity about the world and the people that surround it. Writers are creative, dramatic, and resourceful. They understand words and the power behind those words. Writers have a never-ending hunger for life.

Overall, the writer is a person who is determined to explore and create. He is most happy when the words flow without a struggle. He is committed and establishes goals for himself. Some of those goals seem impossible to reach, but when they are reached, the rewards are worth the struggles and pain of rejection.

 

 

***

Detecting Esophageal Cancer


Dearest Readers:

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.

Diagnosis

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. She is the author of Condition of Limbo and Career Diary of a Photographer. Visit her website www.barbieperkinscooper.com