The Role of the Caregiver

On Tuesday, December 2nd, I delivered the following speech at the Faces of Arthritis Breakfast in Atlanta, GA. This is a yearly event held by the Arthritis Foundation-Georgia Chapter in order to raise funds and awareness. Although I had agreed to speak months earlier, my father's health took a turn for the worst and he died days before I was scheduled to speak. I kept my commitment to the Foundation and dedicated this speech to the ultimate caregiver- my father.


Nine days ago my father passed away after a long battle with Alzheimer’s and as I sat by his bedside, my thoughts turned to all those moments in my life when he was my caregiver. Not just his role as the dutiful parent, but my main caregiver when I was stricken with JRA at 13 years-old.
You see, my father was the one who drove me to and from doctor appointments, reminded me to take my medicines and even was my therapist. For two long years, my after-school activity consisted of sitting in a chair watching “General Hospital”, wearing a neck brace that was tied to a thick rope and on the other side of the door was a bag filled with gallons of water. My father had to place me in “traction” EVERY SINGLE DAY- although it was very difficult for him to see me in such pain. I remember begging him, “Not today, let me have a day-off,” but he never gave in. He knew that although it hurt me, in the long run it would be beneficial for me.
As I sat there by his side those long days before he died, I thought of the important role of caregivers.
Since Arthritis is a disease of mobility, the role of the caregiver is essential. There are 46 million Americans diagnosed with arthritis, and for each one there are at least one, perhaps two caregivers. The role of the caregiver is important no matter what age we are diagnosed with arthritis. The role takes on various forms throughout the life-span of a person with arthritis.

It is the parent of an arthritic child who wakes up earlier than usual to prepare a warm bath, so their child can move his/her joints before heading off to school. It is the parent of an arthritic who has to prepare a good breakfast because their child will need to take morning medicines. The strength of a parent who cries in the shower alone, but puts on a brave face in front of their child as they prepare their Enbrel injection.
It is the boyfriend/girlfriend of an arthritic who learns to hold their hands differently because crossing their fingers is way too painful.
It is the spouse of an arthritic who quietly helps his loved one dress, put on their shoes, and get ready to face the world everyday while no one else has any idea of what it may have taken to get this person out the door.
It is the spouse that waits patiently after the surgical doors close, leaving them alone with their thoughts and prayers as their loved one undergoes yet another surgery.
It is the child of an arthritic who grows up all too soon by having to take care of their parent- reversing the traditional caretaker roles. These children, who mature way before their time, learn to take on a myriad of adult- type responsibilities.
I intimately know each of these caregiver roles because my husband and daughter have continued the legacy my father began. Throughout the years, my arthritis has destroyed BOTH my hips, my right shoulder, and both jaws. Thus, I have had to undergo six joint replacements. To have a part of your body removed and replaced by metal makes you feel less human and more robotic only if you allow it to, for though it is quite painful; it quickly puts life into perceptive.
After each surgery I felt as though I had been robbed of my entire God given abilities as a human being. I could not move without aide. When I began to walk, I could not simply get up and move. I remember giving my legs the command to move and they stood as still as Roman pillars on an archaic building. With time as my muscles came back to me, I began to move my legs and soon I was walking ever so slowly again. Through the weeks of therapy I progressed from a walker a cane to walking on my own. I feel as autonomous as a toddler taking her first steps. However, with this new found independence also came a great deal of inner wisdom. For the little every day movements became small victories as I acquired them.I began to realize what truly matters in life are the people around you, the support system that stays behind when the surgical doors are shut on them. Once they are reunited with you, they search for ways of helping you deal with your pain and inability to move. This support system, the caregivers, whether it is comprised of one or many, is the essence of recovery. I got up and walked because my husband or daughter was on the other side of the room to surround my body with their arms. It was this one hug that made all the suffering worth it. It was their mere presence day after day that made me realize that although I have one more piece of metal inside my body, I am still the same person with the same hopes and aspirations.

The essential role of caregiver also extends beyond the family to the medical community who works by assuring that quality of life is better for all those living with arthritis. It includes all those wonderful people who work tirelessly for the Arthritis Foundation by raising research dollars, planning programs, and assisting families in need of pertinent information.
On behalf of the 46 million people with arthritis and those gathered here today, I want to thank all the caregivers of various capacities in this room. Without you, we would be lost. Our daily tasks would be insurmountable and our life would never be as complete.

Although my father is gone, he left me with wonderful memories and a legacy to help others in need. This example of service to others is what lies at the core of the Arthritis Foundation’s mission statement. Let us never lose hope that one day arthritis will be conquered, but in the meantime, let us continue to fight the good fight and care for everyone around us.
Thank you.