Barbie Perkins-Cooper, Author

Holidays 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!