Caregiver Syndrome: A New Label For How We Feel

  • The article, "Exhaustion, anger of caregiving get a name: Stress of full-time caregiving increasingly referred to as ‘caregiver syndrome,'" is getting a lot of attention.


    I've read a couple of responses from people who seem to think it unwise to come up with yet another label for another set of symptoms. I see their point. Our culture does get stuck in the "disease of the month" mentality. However, I, personally, am happy to see this label emerge.


    When I speak to groups, I often say that the first thing a caregiver needs to do is stop for a moment and say to him or herself, "I am a caregiver. I have just taken on another job."

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    I call this self-identifying, and I feel it needs to be done sooner rather than later (though it's never too late.)


    Most of us are familiar with the fact that caregiving is not likely to be recognized as work by people who haven't been completely immersed in it. They skim over the whole thing as, "Oh, you're helping out your mom. That's nice."


    Even siblings of those of us who are primary caregivers often don't "get" how difficult it is, or don't care to know. (I'm generalizing, so please forgive me, all of you wonderful siblings who do understand and help out.) So, if you don't get the support and respect you need from others, you can at least support and respect yourself. And you can seek resources and support elsewhere.


    Another reason for self-identifying as a caregiver, and doing it early, is that caregiving sneaks up on us. I've written about that several times before, and I'll continue writing and speaking about it, simply because it's the truth.


    Caregiving often starts out with just "helping out a little." No big deal. But, soon, it becomes a weekend thing. So you work at your job during the week, and you are a caregiver on the weekend. Then, it's caregiving after work, or looking into in-home care during work, or going to weekly doctor appointments with your ailing elder. And then? You are on call 24/7. You have taken on another job and you don't even have time to figure it out. Some days, you hardly remember your kids' names, or your own.


    So, what good does labeling do, anyway? It increases awareness. That awareness can wiggle itself into your brain and demand that you take better care of yourself. It can help you stand up to others and demand some help. So, I say label away.


    Back to the CNN story. Prolonged caregiving is very hard, physically and mentally (this is where you say, "duh!"). People, and yes doctors generally find it easier to grasp why you are so tired, angry and burned out, if there is a name for what you are experiencing.


    The CNN article says, "This condition is increasingly being referred to as ‘caregiver syndrome' by the medical community because of its numerous consistent signs and symptoms. In the pamphlet, ‘Caring for Persons with Dementia,' Dr. Jean Posner, a neuropsychiatrist in Baltimore, Maryland, referred to caregiver syndrome as, ‘a debilitating condition brought on by unrelieved, constant caring for a person with a chronic illness or dementia.'"


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    Sound familiar? The article goes on to say, "...the most common psychological symptoms of caregiver syndrome are depression, anxiety and anger."


    Okay, now it's official. You have permission to have all of these feelings. When I'm presenting and I tell people they need to self-identify as caregivers, I also tell them caregiving is hard, hard work. I tell them that they will feel depression (sometimes clinical, and they need to get help). They will feel exhaustion - physical, mental and emotional. They will think things they don't want to admit they thought, because their physical and emotional resources are all used up, and they see no way out.


    I've had people come up to me after a presentation with tears spilling over. They've said "I feel like I finally have permission to take care of myself. I finally have permission to take a day off. I finally have permission to be human and not a caregiving machine." So, caregivers, having a label for some of what you are going through gives you "permission." It validates what you are feeling, and validation can be healing.


    The CNN article continues, "Peter Vitaliano, a professor of geriatric psychiatry at the University of Washington, and an expert on caregiving, said that the chronic stress of caring for someone can lead to high blood pressure, diabetes and a compromised immune system...Vitaliano (also) suggests that the physical symptoms are a result of a prolonged and elevated level of stress hormones circulating in the body. He likened exhausted caregivers' stress hormone levels to those suffering from post traumatic stress disorder."


    Yes, dear readers, I'm very pleased that this new label has appeared, as I feel that it validates what we caregivers already know. The stress of caregiving, especially when it is prolonged, takes a physical, mental, and emotional toll on the caregiver. This is not to say that we regret being caregivers. Nor does it imply there aren't some very gratifying times - often many gratifying times. But having a name for the damage done by the stress of caregiving is likely to give birth to more help for caregivers. More options. And, perhaps, more recognition that caregiving is, indeed, a real job.


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Published On: August 16, 2007