BRIDGING THE GAP

Understanding Caregiver Stress

Caregiver stress is a concept easily understood by most people. Many of us have been a caregiver to children, an elderly parent, or perhaps someone with a serious health condition or exceptional need. When we are taking care of someone, we devote long hours and energy to ensuring their health and comfort during a time of need. We may find ourselves monitoring and assisting with scheduled therapies and doctor’s visits, helping to adhere to a special diet, and facilitating daily routines and activities. In doing this, we often become very knowledgeable, if not expert, on their needs. What helps us to endure on their behalf, is knowing that at some point they will no longer need our assistance. In most cases, our caregiving will end as the person gains (or regains) independence.

For caregivers of children with exceptional needs, the challenges are atypical and a constant, sometimes hidden, level of stress can develop. This stress is rooted in the fact that exceptional caregivers often provide some level of care for life. Parents of children with lifelong disabilities face atypical challenges. It is not the periodic care experienced when raising children or caring for an elderly parent. Even as exceptional children mature over time, their need for some level of support or supervision typically remains.

Exceptional caregivers often have expert knowledge in their child’s needs, observe and implement needed therapies, oversee their child’s education to ensure their needs are met and goals are appropriate, seek out additional therapies, services, and specialists as needed, and often unintentionally become the child’s primary source of social engagement. More than 65 million people, or 29% of the United States, serve as caregivers to family members or friends who are chronically ill, have disabilities, or are aged . As of 2011, 71% of individuals with intellectual and developmental disabilities lived with a family caregiver . Although many of these individuals receive some level of paid care, most receive the majority of their care from unpaid family, friends, and neighbors.

Understandably, the stress of managing someone’s care for decades is unimaginable for some. The years exceptional caregivers spend putting someone else’s needs ahead of their own can take a toll. Interestingly, exceptional families are not likely to admit to their stress. As a parent of an exceptional child myself, I’m less likely to admit how hard it can be at times. Rather,I like to focus on the positive, as many parents do.

One of the best ways to address caregiver stress is simply that…address it. Talk about it. The more we admit that caring for someone can be challenging without the guilt felt in admitting that, the better off we are. Sometimes we fear that in saying we are stressed, it might hurt the person we are caring for. We need to set that aside and agree together that acknowledging stress does not take away from the fact that we are devoted and committed to helping. Both giving and receiving help can feel uncomfortable, so let’s clear the air, agree to the challenges, and march forward. With that said, another way to help caregivers is by giving them time. That may seem obvious, but it is easier said than done. It is important to focus here on quality over quantity. It may not seem realistic to have an entire night off or even a half day. But could you consider 20 consecutive, uninterrupted minutes? Start there. Sitting outside listening to music or taking a brisk walk around the block can go a long way in giving you a minute to clear your head and focus on your own wellness. Secondly, caregivers need to keep their medical appointments. Although it may be hard to squeeze in your healthcare needs alongside the person you are caring for, it is a must. This is a great time to use the phone-a-friend option to help you ensure you make it to your own appointments. Your friends and supporters have been offering to help so here is where you can finally accept it. Last, but not least, find others who share your experience. There are others who have been in your situation and who are similarly needing help and support. Sharing stories, tips and resources among each other is a lifeline. As we continue our love and care for others, addressing our own caregiver stress will help along that journey.

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i Family Caregiver Alliance, 2012

ii  Braddock, 2013

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