Who Cares? The Top 3 Reasons Caregivers Don’t Seek Respite

By Kelie Kyser, Communications Director, The Arc Arapahoe & Douglas Counties

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About 15 years ago, I watched my mother physically and mentally implode right before my eyes. I wasn’t sure how to help because she didn’t know what she needed. Mom was stressed out by the fear of impending layoffs threatening her 25-year tenure as an instructor/developer at AT&T, granny had just suffered her third stroke, and Max (the family dog) and granny’s companion had recently become obsessed with exploring the living room and marking antique furniture as he would a fire hydrant on the street.

There wasn’t a name for it at the time, or at least if there was we didn’t know it. Fast-forward over a decade later with the increasing popularity of social media and brilliant marketing campaigns, and “caregiver burnout” has finally become a thing.

Who Cares? According to AARP, 40 million family caregivers provide care for adults in the United States. And they are doing it for free, at a rate of $470 billion dollars in unpaid care to be exact.

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During this year’s National Lifespan Respite Conference family caregivers, service providers, advocates, and other professionals in the field gathered to learn about respite. Specifically, what organizations can do to address a growing epidemic of stressed out individuals who are in desperate need of education and resources to help them cope with America’s new normal. The caregiving spectrum consists of individuals who care for a loved one with a disability, an aging parent, or a spouse with physical limitations.  In addition to providing care, they are also tasked with maintaining full-time employment, preserving the household, and nurturing intimate relationships.

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Elevate Respite signified the progress that has been made to advance the “caring for the caregiver” initiative. Conference goers were reminded that this year marked the 10-year anniversary of the enactment of the Lifespan Respite Care Act. Respite funding is on the rise and prominent figures in politics, celebrities, and faith-based organizations are increasing awareness about the concept of self-care. It was encouraging to hear about advances in the campaign for caregivers; however, there’s still much to be done in terms of compelling people to obtain support.

I wanted to make sense of the reason why so many people who need help aren’t receiving it and what I can do as an advocate to break the cycle. The topic hits close to home for me as an only child who witnessed my mom struggle to maintain the wife/mother/good kid balancing act to the detriment of her own health. And preparing for the inevitable cycle of life that will ultimately place me in a similar position; managing the care of my own parents in years to come.

After attending the conference and processing the research provided, I strongly believe there are 3 common reasons caregivers don’t seek respite.

  1. They don’t know how to access resources. Unfortunately, respite isn’t something that generally comes up in conversation during your annual checkup at the doctor. So if you don’t know a friend or neighbor who’s familiar with the concept, your needs as a caregiver often go unmet. During the “Maximizing Respite Dollars” break-out session, representatives from the Harris County Area Agency on Aging and Care Connection, Aging and Disability Resource Center (HCAAA) elaborated on some of the challenges they faced when trying to educate a community of caregivers on how to acquire respite services. HCAAA combated this hurdle by partnering with other agencies like Easter Seals to market caregiver training classes where participants received counseling and direction on forms of respite that exist, how to apply for services, and how to utilize natural support systems (e.g., friends who can fill in the gaps when agencies fall short).

 

  1. They feel guilty and ashamed. Many of us are taught to “roll with the punches” or “when life serves you lemons, make lemonade”.  So it can be hard to admit that you need help being a parent or taking care of your own parents. Keynote speaker Amy Goyer shared her own deeply personal story about the mental and physical stress caregiving entails. Amy shared a mantra that speaks to those who have difficulty accepting the fact that they need help: “I can do anything, but I cannot do everything”. She encouraged caregivers to create a plan to lessen stress and avoid burnout.

 

  1. Culture gets in the way. Mental health, therapy, and respite are not only foreign concepts in certain cultures; they are taboo. Nichelle Stiggers, Program Coordinator & Care Manager at Lutheran Family Services Rocky Mountain discussed some of the challenges African American caregivers face and why many times they are paralyzed with fear when it comes to entertaining the idea of allowing someone else to step into the family unit to facilitate respite. Among the obstacles discussed, self-identification topped the list. Most people don’t even know they are a caregiver, where to find help, or what the heck respite means in the first place. Respite is not a popular word; and generally speaking, people who don’t work in or around the health care industry are not familiar with term or the concept. Nichelle found a way to cater services to the African American community in a way that aligned with their values, garnered trust, and pacified fear.

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I’ve attended a lot of educational symposiums as an advocate, but this event topped my list as far as substance. I walked away with new ideas on how I can help others locate and utilize respite resources. I also validated my suspicion that more often than not, people are reluctant to reach out for help because we are a nation of “can do”. But this false notion that we can be everything to everybody; never taking time to meditate on our own needs and practice self-care has to stop! It’s harmful and the consequences of maintaining this façade leads to things like elder/child abuse, substance and alcohol abuse, and depression. I look forward to implementing some of the valuable methods I learned into my work as an advocate, and in practice with my own family.

1 Comment
  • Carol Meredith Posted October 17, 2016 6:47 pm

    I wish I had planned for the time that is often called a sandwich. Even though I was already taking care of a teenager with autism and many behavioral disorders, when my Mom started the slow but inevitable slide into Alzheimers disease, it was a real roller coaster. My husband and I were already tag-teaming the care for my son outside of the school day. Now I had to find the time to work, care for my family, care for my son with high needs who could not be left alone, and care for my Mom. For those of us who have children with disabilities and parents who are living – the time will come when you will have to manage both (hopefully with the assistance of your siblings). Having a plan just makes sense. I KNOW that a parent of a child with disabilities already has LOTS OF PLANS. Sorry to add one more to your list!

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