Story of Inspiration: Lifelong Caregiver Dedicated to Reducing Elder Abuse
She was only 11 when Dr.Cathleen Carr experienced the game-changing initiation into the world of “caregiver,” first for her grandmother, later a college roommate, and shortly after college graduation, her frail, and then elderly father who was 84 when he died. One, by one, the list of family members and friends who needed her to take on full-time caregiving duties continued to escalate.
Today, Dr. Carr has chosen to embrace and celebrate her on-the-frontlines experiences as caregiver to make a difference for others.
Marshaling all her experiences and determined to end any kind of caregiver abuse to elders or others who are vulnerable and needing help, Dr. Carr founded the Ohio-based non-profit, CertifiedCare.org, in 2008. Today it is one of the nation’s oldest and most respected organizations that provides certification, training and job placement assistance for caregivers. The organization offers training programs in almost 200 countries around the world.
As Executive Director for CertifiedCare.org, she’s passionate about training others how to be the best caregiver they can be. She also oversees a blog, “Eldercareadvice” that connects and offers caregivers up-to-date tips, reflections and news they need to know.
Here, we caught up with Dr. Carr to explore in-depth how we need to gear up during the coming decades to offer caregiving help for our elderly and frail relatives, and ultimately ourselves.
Our Q & A will be posted in several articles during the week ahead, but to start, we asked Dr. Carr to describe personal caregiving experiences that inspired her to become a passionate advocate for others. She opens up with frankness to give us an emotional journey through what it can really be like.
Q. You’ve been a caregiver since childhood and it wasn’t easy to say the least. Can you share your journey through a lifetime of caregiving and how CertifiedCare.org and your passion to help caregivers and their families was born?
Dr. Carr: My father was 56 when I was born; so when I was 11 his mother was in her early 80′s and could no longer manage toileting on her own. I was ‘ordered’ to help her, because no one else was willing. I had met the woman maybe two times before in my life, but there I was wiping her bottom.
Little did I know at the time that that experience was only the beginning of what would become an off and on, sometimes full -sometimes part time job of caring for family members and friends? Years later when I was in college, my next door dorm mate had a severe case of scoliosis and was confined to a wheelchair. We became great friends and I helped her on campus out of love and respect until she had to leave for health reasons, and soon thereafter died. Right after I finished law school my father needed care as he had become frail, and died at 84 when I was 27.
I married and had a child, and was divorced when she was two. While raising a child alone, my brother, Michael, who had been a Viet Nam veteran, needed care while being ravaged by untreatable lung cancer as a result of Agent Orange exposure. He was 51 when that war finally killed him.
Simultaneous with Michael’s cancer experience my mother was diagnosed with cancer, had surgery and chemo treatments, until also succumbing to cancer – the year after Michael died.
Next, I cared for a frail elderly friend who lived with MS; then a single parent business owner friend who has osteoporosis and had a terrible accident that left her left arm and shoulder crushed (she is left handed). Then my oldest sibling, Carol developed cancer and asked me to care for her. I moved her into my home in order to do so. After she died I had to take care of my oldest and last brother who had lived most of his life with very early onset dementia and with Carol all his life. He developed renal failure and died within a year (almost to the day) of our sister, Carol.
Q. CertifiedCare was born out of that. What was your goal in launching the organization?
Dr. Carr: I had come to see caregiving as a thankless, troublesome job that I had to learn how to do the hard way – trial and error. Because I had much older parents I was not in the company of peers who were similarly situated during my extremely long process of off and on family caregiving.
After I buried my two siblings within a years’ time I was done with being held solely responsible for the well being of others, and doing all I thought was right and decent- what I would want someone to do for me, only to be chastised by healthcare team members for making the kind of (fortunately harmless) mistakes anyone who hadn’t had any education in these matters would make. I was resentful after being abandoned by others who might have made the experiences at least a little less draining on me, but who left it all to me because they knew I would handle it.
I was falling apart with stress and depression and awareness that no one cared about me, because no one realized what a toll caregiving was taking on me. No one around me had ‘been there, done that’. I asked God why all this burden had been repeatedly placed on my shoulders. What was the lesson for me? Was my real calling here somehow? I finally came to me to take my otherwise over educated self in a different direction and write complete education programs for caregivers. This way they could learn how to give appropriate care to their loved one and their own self in ways that were appropriate, nurturing, respectful and helpful to both.
I was (as usual) ahead of my time, but the greater community is now coming to understand the usefulness and importance of complete caregiver education programs.
Q. And your ongoing commitment to the cause?
Dr. Carr: We are here to advocate for elders and caregivers alike. We are watching state governments take our ideas and dumb them down to ridiculous levels of minimum education requirements (for example three hours of PCA education in California when at least 75 has been recommended)- so the work will continue for the foreseeable future. Since I am amongst those leading the charge I’ll be here until some greater force removes me.