.Caregiver of the Month
May 2004

Robin Arce
AKA Angel437.

For as long as I can remember, one or both of my parents were in the hospital. I am number 4 in a family of 5 children. My father was a Major in the Army. My mother was a stay at home mom, and very active in our community.

My father had his first heart attack when I was only 2. My mother was hospitalized multiple times as well. She suffers from kidney disease, phlebitis and diabetes. When my youngest sibling was born my mother had an operation to remove a clot from her leg, it slipped, went to her lung and we were told that she had passed; within minutes she was back. She told us a story of having a life after death experience. Later, she was hospitalized for almost a year, in the ICU of an out of state hospital. While working in a local hospital I found a surgeon to take her case. He found a huge tumor in her pancreas.

I always wanted to be a Registered Nurse. Being a caregiver is all I knew how to be, it was innate. I was always involved in the medical care of my parents. Later in life, my parents started telling the doctors I was a registered nurse. I also became a volunteer in the local hospital as a translator. Most of my time was spent in the ER; however, at the end of my shift I would visit the elderly patients that were not expected to live. I loved to listen to their wisdom I wasn’t able to go to college while living at home because my life was consumed with the responsibility of taking care of my parents and sibling. My High School grades were not the best being I missed a lot of school staying home being the “caretaker”. I was working in two Nursing Homes, where it became apparent to me how poorly this country cares for their elderly, and the disabled. I promised my parents that I would never put them in a home, and that I would always take care of them. I became very active in helping to improve the conditions in the nursing home, as well as adopting a few patients as grandparents. I was a Girl Scout leader. My troop took gifts, played games, sang songs, or just sat and talked about the good old days. Some of them never had a visitor at all. Many of their families just left them there to die.

A few years later, after moving out of my parent’s home, I was diagnosed with cervical cancer. I had just started a job in Manhattan. It was a medical facility for AIDS patients. I didn’t have any medical insurance. At the time, I had to put a deposit down before they would even do the surgery. After several weeks while waiting for the biopsy report, I was told that I would probably never be able to have children, and that I needed a hysterectomy. I was only 20 years old and I was not married. I put my hardhat on and began reading more about my condition; went to a reputable hospital, brought my biopsy slides with me, and was told no hysterectomy… but I probably would still have problems conceiving or carrying children.

In 1984 I married. My grandmother from England died on my wedding day. Five months after I was married, I was blessed by becoming pregnant. It was a very difficult birth. I hemorrhaged during my daughter’s birth and she was born a blue baby. She is now 18 and in college. Four years later, my son was born. He is now 14.

All during this time, my parents continued with their hospital stays. Dad had a 5-vessel bypass when my daughter was only one year old. I spent days with my mom helping her care for him at their home. My life was consumed with raising my children and caring for my aging, ill parents. Now I was “sandwiched” in as they call it today.

I had a total hysterectomy 2 years ago. It took me 3 years just to schedule it fearing that something would happen to my parents or children, or me. Who would care for them?

For 5 years I ran my own medical billing and collection business. I am very involved in patient advocacy. I am appalled with the lack of medical care, and insurance fraud in this country. I am and have been working hard to voice my opinion, and reach out to try and change the way our country mistreats the elderly not to mention the lack of support and funding to the caregivers. During this time I felt I could now begin my dream of becoming a registered nurse. For 2 years now I have been attending college.

Today life has dealt me another challenge. My father is now living in my home, where he continues to deteriorate from his diseases and age. He has CHF, renal insufficiency, and gallbladder disease. He has frequent and lengthy hospital stays. He is unable to climb the stairs, so now he lives on a sofa bed in my family room.

I had to leave my job because my father needs someone home with him at all times and obviously this has caused a huge financial burden on my family. College has also taken its toll on me, emotionally, physically, and financially. Square roots, DNA, and essays just don't seem important anymore. Missing exams while dad is in/out of the hospital has pulled down my grade point average, and I can't seem to concentrate. My focus is all on the daily care, and worries of my father, and situations that arise with my own families care.

I have also suffered with IBS since the age of 13 (irritable bowel syndrome). The symptoms are so severe at times; the cause being, stress. April is National IBS month. This condition is not only embarrassing; it has consumed my life. Many people don't speak about it. Everyday is a struggle. Going places is torture unless I know I can get to the bathroom quickly. I also have been hospitalized many times from it.

By choice, my mother lives alone now in her huge home, an hour away from me. My mother is at more times than not, relentless. Although she says she is fine on her own, she still wants the attention, and entertainment. Even now that I have my father, she still wants me to keep doing what I have always done for her. It is because she knows I will do it, and do it right. The problem is if I don't help her, no one else will. Working on setting boundaries with her is a challenge. She has wanted to go back to her country, England, before she passes. Recently health issues have made it impossible for her to travel alone. Although my brother has offered to take her, she prefers I go. She says I need a vacation, for all the work that I do, and for taking care of dad. The issue again is, who will take care of Dad? Although my siblings at some point have pulled some weight in the caregiving department, their assistance has been minimal. At this stage minimal is not cutting it. It is a continued effort to work through the feelings of resentment.

For sure this is not an easy process considering things have been this way my entire life. This then causes more stress, sadness, and depression. On a good day, when I chose to let it go, I am happier, and more content. When I dwell on the fact that I am doing all of the work, I lose focus, and become crippled. I am bitter with the fact that my siblings are able to go on with their lives, enjoy their children, go on vacations, and plan weddings. There are more days than fewer days I say to myself, “I cannot do this anymore. I want my life back.” Caring for my father has surely put my life on hold. Now it seems as if the roles are reversed. I feel like the parent. I know I only gave birth to 2 children. I am my parents’ security blanket. Being a Libra, it is said that we are well balanced individuals. Finding that balance and staying balanced is difficult.

It seems as though my story never ends. It is even difficult for me to truly express how much I have and continue to do for my parents. I believe God has given me a mission in life. There is a reason that I have been chosen to be the caregiver. It has made me who I am today. I will continue through this journey, learning and growing, both emotionally and spiritually. Empowering Caregivers has truly transformed my life. It has opened my heart wider to help others. It has helped me to open my eyes and reflect who I am, and what I am here for. I am an Angel, doing her work. What a miracle to find such a wonderful place to fall, to grow and meet others that have their own stories to share. Just by typing in a few letters in the search field on the Internet: CAREGIVERS, has truly changed my life.

The one belief I have is that I truly believe I have been given this gift for a reason. I also believe that there is another calling out there for me. Things happen for a reason. I will continue moving through this journey, learning and growing, both emotionally and spiritually.

When I look into my father’s eyes, I can see myself as that little girl wanting to continue to take care of her daddy. My father has surely earned his wings; they are golden. His journey home will be peaceful. I too will be at peace knowing that I played a big part in helping him in his journey home.

Robin Arce
Email: Robin

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