WHO'S TAKING CARE OF THE CAREGIVERS?
(June 13, 2009) I read the most heart-rending, tragic story today about a British couple whose five year-old son, paralyzed after being in a car accident at 18 months, died suddenly of pneumoccal meningitis. As it would be with any parents whose beloved child died before expected, these parents were mentally and emotionally devasted because their whole world was centered around caring for their son--more than others in their immediate circle obviously recognized. This couple had both quit their jobs to care for him and seemed to keep themselves somewhat isolated from others. Upon the death of their son, the story said that less than 48 hours later they took their son's body (it's not clear why they still had their son's body more than a day after he died) and a knapsack filled with his toys, drove to an area where there were cliffs and jumped off in a double suicide. Obviously their grief was too much to deal with and perhaps they felt in some way that they would never be rid of the pain and decided this was the best way to deal with it. As is the case with parental caregivers of children with disabilities or caregivers of elderly parents dealing with Alzheimer's or dementia, the mental, emotional and physical stress can be tremendous. In their desire to help their family members with disabilities have the most productive and fulfilled quality of life possible, caregivers tend to neglect their own physical, emotional and mental well being. This is an aspect of caregiving that is still not discussed or highlighted nearly enough. Some people handle the daunting challenges inherent to the job exceedingly well, while others can't seem to grasp the reality of having to take care of a child or adult family member (possibly an elderly parent) who may have significant mental and/or physical challenges, for possibly the remainder of their life. In either case, many caregivers fall prey to neglecting their overall health, which doesn't help the person they're caring for nor themselves. I could relate. My husband and I were fine with others watching Sierra when she was a baby and a toddler, but when she became older and her care was more involved, i.e. not being able to go the potty independently, we weren't comfortable with others caring for her--particularly if they weren't close family members. This was very challenging because our family lived in NY, while we live in Atlanta, so you can imagine how often we were away from her. Although I've become less anal about it and have gladly embraced the help of respite services (which we didn't know about until Si was in her early teens), my husband is even more protective than he was before, now that she's become a young adult and still doesn't talk. This is understandable in today's society where there are crazies everywhere, but we had to begin trusting others with her care (after thoroughly checking them out), so we could have some semblance of a life and relationship that didn't always include her. We had to seek out and find help, parental peers dealing with the same thing, resources to assist in her care, and we had to learn to take care of ourselves. Who else was going to do it? We had to consciously remember to make and go to doctor's appointments for ourselves, the way we would make and never miss doctor appointments for Sierra. We had to start exercising away the stress, eating properly and taking a moment each day to have some quiet time to meditate, pray and regain our strength. This wasn't easy or even consistent, but we do what we can, when we can as often as we can because we want to be here to enjoy seeing Sierra come into the productive, capable woman we believe she will one day be. And if not, we still want to be here as long as possible, just to love her. According to the Family Caregiver Alliance, a national center on caregiving, family caregivers of any age are less likely than non caregivers to practice preventive healthcare and self-care behavior. Regardless of age, sex, race and ethnicity, caregivers report problems attending to their own health and well-being while managing caregiving responsibilities. The organization reports that caregivers suffer from:
The organization also says that family caregivers are also at increased risk for excessive use of alcohol, tobacco and other drugs for depression. I know personally that caregiving has an abundance of emotional highs and lows. Those of us who care for children or adult family members with special needs, want our children or parents to know we love them and are committed to helping them thrive. However, the daily demands leaves us exhausted and stressed in ways we didn't even realize we were. Depression is a real concern when it comes to the mental health of caregivers; in fact, the incidence of depression is exceedingly high. Studies show that an estimated 46 percent to 59 percent of caregivers are clinically depressed. Part of the problem in many cases, is that caregivers may not reach out for help or support, or even just find some time away to destress. In the case of parents of children with disabilities, they feel the need to do it all themselves, believing they're the only ones who can care for their child or parent properly. As parents of children of children with special needs who may be jeopardizing their health to ssee to the care of their children, know that you don't have to do it all alone. There is help out there for those who don't know where to turn, but we have to begin the process. If we don't take care of ourselves we will not be helping our children, and since our goal is to ensure they live as full a life as possible, we need to be strong mentally, emotionally, physically and spiritually in order to do it. BackComments
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