See Part 1 of original article at CargiversForHome http://www.caregiversforhome.com/lifelong-caregiver-dedicated-to-reducing-elder-abuse
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.
Q. Why is it so important for families to hire professionally trained caregivers and what qualities do they offer – and assurance, as opposed to hiring random strangers as caregivers? This might be two questions
1. About the qualities professional caregivers bring to the table :
Allow me to begin answering this question by saying that a ‘family’ caregiver usually and eventually has to know almost as much as a professional because the person in their care needs the same kind of general help. The real difference between the two is a pro maybe gets a little more respect and gets paid.
In addition to the obvious answer that a professional caregiver will have references and a complete background check available, the more subtle, yet just as important, advantages of using a professional caregiver are:
Like any other type of professional person there has (hopefully) been a level of education and practical experience achieved which allows for the professional to responsibly take on another persons’ burden and carry that ball for another to a successful or acceptable conclusion. Professional caregivers are better able to assess the situation they are being asked to undertake prior to starting which helps avoid all manner of unwelcome results. Professional caregivers are better able to anticipate changes and developments which might occur as time goes on and plan accordingly for them, which reduces stress on them, their patient and client(s). Professional caregivers have more experience interacting with healthcare teams and communicating with them. Professional caregivers are more familiar with community resources that can enrich, enhance and help support both the elder and the caregiver. Hopefully the professional caregiver has learned hundreds of tips and techniques to make caregiving safe for both the cared for recipient and the caregiver. These are just a few examples of the advantage of a professional caregiver over a well meaning yet inexperienced caregiver. I must add that anyone who has completed the CertifiedCare programs has learned these things.
2. What are some of the risks for not hiring trained caregivers?
There are many risks such as: ignorance based abuse; otherwise avoidable stress for both the elder and the care provider; the inability to recognize changes in the elder which would warrant family or physician attention; poor communication skills in the interpersonal, family and medical environment; much higher caregiver turnover or burnout; unnecessary hospital readmissions; poorly managed medication; disrespectful management of the elder personally, socially, emotionally, spiritually, financially, and physically. There’s more, but by now you get my drift.
Q. What qualities make for a good caregiver?
Since you asked a similar question earlier, I have answered this version from point of view of inherent character traits rather than learned skills that make for a good caregiver: Compassion, empathy, patience, humility, a willingness to learn, flexibility, self awareness, courage, reliability, resilience, overall good health, and great psychological and emotional strength.
Q. On that note, there is such a demand moving ahead for good caregivers, how do you know if you have the skills, passion or qualities it takes to make this kind of career decision for yourself?
You have to be one alert, kind yet tough cookie to do this work.
It makes sense to do a self assessment. Ask yourself: Am I willing to learn how to do this job correctly? Can I make good decisions about when to strictly follow directions vs. when to think for myself? Do I enjoy helping people who are in great need? Am I comfortable providing intimate personal care to another adult? Am I emotionally strong enough to endure an environment that is geared toward end of life? Can I easily respect the differences and needs of others? Am I grounded and selfless enough to deal with another persons’ actual needs without letting my own dominate? Am I balanced and self aware enough to realize when I need a break and am I then strong enough and organized enough to make sure I get one? Can I deal with bodily fluids and bad smells? Can I courteously contend with lots of strangers asking lots of questions and/or making demands (reasonable or not)? Can I tolerate being treated with suspicion because I willingly choose work with helpless old people? After all that, ask professional caregivers about their typical work day and why they became caregivers.
There will be no shortage of work for decades to come, so if anyone is suitable for this field they will not have to worry about unemployment.
Q. What are some of the testimonials or some of the scenarios that you remember most about matching a CertifiedCare caregiver with a family?
CertifiedCare provides education, testing and certification with registry for caregivers. We do not match caregivers with families or agencies – we are not a referral or home care agency. We do provide a publically accessible registry of CertifiedCare certified caregivers where agencies or the general public can confirm someone’s credentials and that those credentials are actually from us.
Otherwise, CertifiedCare.org has an entire page on our website dedicated to reviews from students (https://certifiedcare.org/index.php/about-us/faq/students-comments) – most of whom are long time caregivers or professionals in the LTC industry who have provided feedback about our programs and customer service.
Q. In your column and blog you write about some of the challenges facing caregivers and families hiring caregivers. What are some significant challenges ahead?
First allow me to say, ‘thanks’ to the many people who contribute to our blog, ElderCareAdvice.wordpress.com.
Challenges I foresee ahead include:
- Finding people to hire who are actually well educated about frail elder care. Most Home Health and At Home Care agencies provide low state minimum requirements, if any, before assigning their aides to clients
- Dementia can strike at any time during the aging process and most caregivers have zero preparation for this development
- Very long term care needs. Many people are living very long lives now whether they are sick or healthy. Most of these people will probably need personal care for decades
- Financial planning for eldercare and caregiver needs – as well as funeral expenses
- End of life healthcare planning for that period of time when many people lose their ability to make decisions for themselves
- Insufficient government requirements for caregiver education (sadly, in the United States most people will not learn any more than they are required to by law)
- At home caregiving becoming more common place (long distance caregiving; eldercare at home; live in caregiving)
- Affordable ADA compliant housing for frail elders
- Sandwiched people: Those who must take care of children and seniors and job(s) and spouse/partner and pets and their own self and life, all at the same time
- Bad economy limiting income options
- lobbyists working against caregivers for profits of LTC industry
- Very poor pay and benefits for professional and family caregivers alike
- Not enough able and willing caregivers
Q. What are some of the components of CertifiedCare as the first certification curriculum and training program for certification of personal home care providers and assisted living companions that incorporates alternative therapies tailored specifically for the frail elderly?
Chapters and sections in our certification modules are devoted to instruction about natural, low-no cost, stress reduction techniques, and various other therapies especially for frail elders and their caregivers. No appointments, travel or other rigmarole necessary to achieve better health, more relaxation, and improved wellbeing.
Q. We love how you are taking a holistic approach to caring for the elderly. What are some of these alternative therapies that are tailored for the frail elderly?
Homemade herb infused treatments for hair and skin, a variety of gentle massage techniques any one can do, mental and physical exercises for relaxation, stress reduction, strength and flexibility, and general wellness. I have included lots of relaxation and stress reduction techniques in these programs. The feedback has been very positive; many people report an increased sense of well being from these self help techniques. They also note an improvement in their physical health. But, you’ll have to buy the programs to get the details!
Q. Describe the scope of CertifiedCare? History of company? Graduates? Future plans?
CertifiedCare provides accredited education, testing and certification programs to family and professional caregivers of all stripes, throughout the United States and around the world. Nurses, Home Health Aides, unlicensed professional caregivers and ordinary people who are primary caregivers to adults, who are frail or chronically ill or living with a dementia or special need, are for whom our programs are written. We have had registered nurses and LTC Administrators tell us they learned a lot about many issues they had not had experience with by education or practice regarding the care of frail elders.
In the late 1990 I started one of the first stress reduction studios that utilized only alternative, natural therapies. I also started a correspondence school for the same, American Eastern Institute, LLC. Over time, that writing to a general audience turned into the caregiving niche. We started CertifiedCare as a non-profit corporate organization but are reorganizing back into a LLC for easier operation and growth.
Our small staff is still largely volunteer and spread all over the country – and as far away as Nepal where our wonderful programmer lives. Since we accept PayPal and offer two different zero interest payment plans our graduates and current students hail from all over USA, the Caribbean, Canada, The United Kingdom, India, Australia, Nigeria, and many other countries.
Some future plans include translations into Spanish, French, and a few other languages we have not settled upon just yet. We have started allowing the resale of our programs overseas by other institutions involved in long term care.