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Knowledge is power

The New Wisdom on Caregiving and Aging – An Interview With Sharyn Hoffman Fein

Sharyn Hoffman Fein is the President and founder of Ed-U-CARE™ Dallas, a Texas-based non-profit organization dedicated to compassion fatigue awareness and cultural humility training for personal and professional caregivers. She formed Ed-U-Care after years of work in the field of non-medical caregiving, as well as through her own experience caring for her mother, who has Alzheimer’s disease. Sharyn’s unique perspective has given her an inside understanding of the needs of many of society’s most marginalized members, as well as the caregivers who take care of them.

In a recent conversation, Sharyn talked with us more deeply about her work, and the ins and outs of compassion fatigue.

LifeCycles – Sharyn, tell us more about the history and purpose of Ed-U-CARE™ Dallas.

Sharyn Hoffman Fein – Ed-U-CARE was developed based on a need that I discovered while I was working for a company that offered non-medical/direct care services to people aging in our community here in Dallas. There were things that I noticed about myself as a caregiver to the working community and professionally to my own mother who has Alzheimer’s disease – there was something wrong with me that I actually couldn’t put my finger on. I really couldn’t pinpoint it. I wasn’t depressed, I wasn’t really sick, but there was a malaise of some sort that just continued to grow and I really couldn’t understand it…

After many encounters in the non-medical home care industry working directly with clients and their care, I noticed one specific community in our city that was severely marginalized by care professionals in education and training, and that was the older LGBTQ community. Ed-U-CARE was basically founded on a need to bring education and training to caregivers about how to sustain and manage themselves as well as learn what it means to be culturally competent for groups that have been marginalized by society. This kind of education and training is missing in our culture, not only here in the state of Texas but on a national, even international level.  We are an education and training wheelhouse for marginalized communities that live in the periphery of humanity – people who just don’t take a lot of care for themselves and really just care exclusively for others.

LC – What is compassion fatigue? Who gets it? Can you give us a deeper understanding?

SHF – You know, everybody has compassion fatigue. It’s a general state of condition for most people who care, whether they’re caring for their pets or caring for their children, or caring for their neighbors, friends, community, or their aging parents, or they’re a sandwich generation caring for their aging parents and children [at the same time]. It’s not an illness; it’s something that we live with that we don’t necessarily understand.

I want to quote Dr. Charles Figley, founder of the Green Cross Academy of Traumatology, who really was the spirit behind understanding what was going on with me personally, but also in the community in which I work… He started doing work with trauma in the 70’s, studied traumatized people, realized in the late 80’s that people were leaving the field and could no longer deal with what they were doing, and it wasn’t burnout. Burnout is the lack of satisfaction with your job that’s too stressful and not enough pay, but what he was talking about is the toxicity of work, the way work can just make you feel terrible, so he defined compassion fatigue, and I’m quoting him, “It’s a state experienced by those helping people in distress. It is an extreme state of tension and preoccupation with the suffering of those being helped to the degree that it is traumatizing for the helper, and that is classically called secondary PTSD.”

Certain people can recognize it, and other people, like the people that I invite to the Compassion Fatigue Symposium that Ed-U-CARE hosts, are people that really don’t have an understanding of what it is until they attend this event, and once they attend, then they’re repeat attenders. They come every year because it’s so easy to get lost again and again in caring too much for others at a loss of self. Learning to exercise self-compassionate care without guilt is one of the key thrusts of our programming

LC – I know you have a yearly symposium, and then other smaller events and activities, can you tell us some more?

SHF – Many different communities of caregiving come to our symposium. It’s open to the general public, so that would be the personal and the professional community which consists of social workers, nurses, care managers, clergy, first responders, people in the animal/veterinary world, whether physicians or volunteers, shelter workers, firefighters – just about every professional that is in touch with caring for the life or welfare of another. Once the large event is over, then there is the opportunity for them to contact Ed-U-CARE, and we go in and we sit and listen to what their needs are, and we fill in the holes with very specific training that’s appropriate to their caregivers.

We educate and train caregivers about how to take care of themselves and how to take care of others. We’ve done this for retirement communities and other living facilities, the police department, animal professionals – we work at different levels depending on their unique needs. We address not only the compassion fatigue of the employees, but the compassion fatigue of the business, working from administrative levels down to direct care.

We put together specialized programs done at a PhD and nursing level. For example, veterans of war who have dementia and PTSD go back to the war and get stuck – they have triggers, so we do trigger training for caregivers and family members. We’re unique. We’re the only company in our city doing what we’re doing.

LC – What do you see about the role of compassion fatigue in the workplace?

SHF – Large corporations like Texas Instruments, Microsoft and southwest Airlines – we have a lot of hubs here in Dallas – a lot of these companies are now incorporating plans within the work environment to stop, breathe and think, take a minute and chill out. Some bring in activities like meditation, tai chi, chi gong or sound healing… The businesses are now aware that if they want to save their larger professionals, their administrators, their CEO’s, their CFO’s, if they really want to keep those people working while they’re sandwiched between their families and their children, they have to offer opportunities to be able to leave to care for family members that are aging, and to provide outlets for them.

There is an interest, because people are underperforming due to caregiver exhaustion or because they just feel blaah. Giving it the name, compassion fatigue, is so empowering. If you walk into one of our events, and we have 450 people attend, people walk in like broken flowers and leave like blossomed daisies. Once you take a hold of it and you say, yes I agree, this is me, then at that point you have no excuse not to do something about it, or you’ll just continue to be unhappy. Some people actually commit suicide living with compassion fatigue. We must avoid getting this out of control and change how we care for ourselves, so we can continue to care for others healthfully.

LC – It’s true, self-care is hard to attend to…

SHF – One significant modality for healing is meditation. The term resonates differently with everyone. Some people shy away from it, because they think it’s either too woo-woo or too difficult to learn. Meditation can just mean steady breathing, finding a sentence that makes you happy and saying it to yourself over and over again, or turning on some music and just listening for a minute – change your direction, change your mind. You know, we do this with children when they’re acting out or having bad behavior – we need to do this for ourselves when we’re stuck. There’s even a free app on your telephone that can be downloaded from iTunes called “Stop, Think and Breathe.” It takes 5 minutes.

At the symposium, when we finish the academic portion, we break for lunch, share our stories with others, and move into afternoon breakout sessions, where we discover healing modalities, from nutrition to drumming. We encourage people to reach out far beyond what they think works in their scheme.  Most people have no idea what’s out there to calm your body, calm your mind and calm your heart. We certainly support medication when necessary and important, but we encourage our attendees to learn about options to self-heal without over medicating with prescription drugs and alcohol. We like to teach the possibilities of Eastern and Western philosophies blending for a total healing package.

LC – Are there other people in the country doing this type of work?

SHF – There are lots of professionals on compassion fatigue, all over the country. These are the people we bring in to do our speaking. We look for people who rise above and give beyond, people with a unique experience to connect with the community.

Building partnerships with other communities across the country is our goal. The symposium is mobile and can move. It’s taken me five years, but two hospitals are interested in future sponsorships for this event, and that’s the level we need to get to…

LC – What other developments are you seeing?

SHF – I look at companies here in Texas such as Texas Instruments – they have ethics built inside their business practices. They were one of the first companies to have equality in insurance practices for partners. They seem to care deeply about their people by giving something to families with caregiver issues. So, it’s out there, it’s actually happening.

Here at Ed-U-CARE, we do things that set us apart as a training company, by being kind. For example, one of the most critical things I’ve learned is the importance of thanking caregivers. It’s a small compensation for what they do for us and our loved ones, however you’d be surprised by how much these words of gratitude mean to them.

In small ways, Ed-U-CARE makes significant statements to a lot of different people. This has changed my life, and I look forward to the continued opportunity to change the lives of others.

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