Running on Empty: What Can Caregiving Parents do?
The expression, “You can’t pour from an empty cup” is of unknown origin, but the image is clear: If you don’t take care of yourself, you can’t help others. This is especially true if you are parenting a child with mental or physical disabilities.
The Family Caregivers Alliance estimates that there are 43.5 million caregivers in the U.S. There are an estimated 16.8 million caring for special needs children under 18 years old. 55% of these caregivers are caring for their own children according to a report by the National Alliance for Caregiving in collaboration with AARP.
Parents of developmentally disabled children experienced higher levels of chronic stress, anxiety and depression than parents of children without disabilities, according to a 2010 study published in Current Opinion in Psychiatry. The study found “chronic stressors can wear down the body, particularly the cardiovascular, immune, and gastrointestinal systems.”
With this increased risk for stress-related illness, caregivers must take extra care to make sure they are healthy. Yet, many do not even go to the doctor because they put their child’s needs over their own. According to the Caregiver Action Network, “nearly three quarters (72%) of family caregivers report not going to the doctor as often as they should and 55% say they skip doctor appointments for themselves.”
The Family Caregivers Alliance warns against ignoring your own health and wellbeing. They use the analogy of safety instructions given by flight attendants before planes take off: “Be sure to put on your own oxygen mask before you assist anyone else.” Translation: Only when we first help ourselves can we effectively help others.
How Do Caregivers “Put on Their Own Mask?”
There are lots of tips and tactics available through an online search. These range from the simple to the complex; from “eat more chocolate” to “consider respite care for
your loved one.” Some are grounded in science and some in common sense. (Chocolate falls somewhere in-between.)
There are several helpful strategies that may work to reduce the stress of caregiving.
- Ask for Help. Juliann Garey’s article “Fighting Caregiver Burnout,” encourages parents to first accept the limits of what they can and cannot do. “Experts agree
that part of avoiding or lessening burnout is to challenge the idea that you are the only
one who can help and there is no limit to what you need to do.”
- Respite Care. Garey points out the availability of respite care, which is planned or emergency care for patients to give caregivers a much-needed temporary break. The ARCH National Respite Network and Resource Center offers resources to help families determine if respite care is right for them, including the basics of respite care, a survey to help determine needs, definitions of the different types of respite care, and a national directory of respite care organizations by state.
What Kind of Help Do I Need?
In addition to ARCH, there are local organizations that can provide different types of help – including family therapy, support groups, advocacy and legal support.
Marriage counseling may also prove to be important. There is an oft-cited figure that 80% of marriages of parents who care for a child with autism will end in divorce. While that statistic is an urban legend, according to a 2014 Washington Post article, the reality is that these relationships can face an additional strain. The demands facing caregivers should be addressed as in any marriage, through communication and commitment. And, if that doesn’t work, through counseling.
Finally, if you are feeling sick or showing signs of exhaustion, you should visit your healthcare provider before these symptoms turn into long-term complications.
Finding the right help and exercising self-care is critical. You need to “refill your cup” to ensure you are taking the best care of your loved one – and yourself.
This blog is for informational purposes only and does not constitute medical advice. Do not make any changes to your current medications or dosing without consulting your healthcare provider.
The GeneSight test must be ordered by and used only in consultation with a healthcare provider who can prescribe medications. As with all genetic tests, the GeneSight test results have limitations and do not constitute medical advice. The test results are designed to be just one part of a larger, complete patient assessment, which would include proper diagnosis and consideration of your medical history, other medications you may be taking, your family history, and other factors.
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