Preparing for the Unsuspecting Role of Caregiver

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"Who, me? A caregiver?"

Many unsuspecting Americans can't relate -- even though they're doing the job right now, or are likely to soon.

Among professionals in aging services or research, the word caregiver is bandied about as readily as cancer or Alzheimer's or stroke or Parkinson's, or other diseases that render a person dependent on another. Doctors refer to the patient's caregiver. Social workers warn about caregiver stress. Organizations offer caregiver training and caregiver support.

Funny thing is, the family members providing that care don't always think of themselves this way.

"People tend to think, 'I'm just doing what any good husband or daughter would do,'" says Gail Hunt, president and CEO of the National Alliance for Caregivers, a nonprofit coalition that spearheads research and programming.

Realize you're right, and wrong!

Becoming a caregiver isn't a matter of stepping into a new social label out of thin air. It's more a transition within an existing relationship.

That helps explain why people tend to adjust gradually to the reality of being a caregiver. Rhonda Montgomery of the University of Wisconsin, Milwaukee, described the phases like this in the Journal of the American Society on Aging in 2009:

  • First you start to do some activities that weren't part of your relationship in the past, like a son bringing groceries to his mom.

  • Then you realize your help activities are extending beyond the scope of the usual relationship role. The son is now also managing mom's money and medications, for example. This is when people often first think of themselves as caregivers.

  • Over time, the needs of the care recipient go way beyond the boundaries of your original relationship (grooming, toileting); this can be distressing.

  • Caregiving comes to dominate the relationship.

  • In some cases, you finally turn over caregiving to formal care providers (such as a nursing home) and revert to being an informal care provider.

Don't sell yourself short.

At least at first, laypeople often perceive caregiver as a term for those who are paid, says Zachary White, PhD, an assistant professor of communications at Queens University in Charlotte, North Carolina, who runs The Unprepared Caregiver and was a caregiver for his late mother. "Too often, we tell ourselves and others that we aren't caregivers because we feel caregivers have special training and fancy titles after their names," he says. If you're doing the work of giving care, yup, you're a caregiver.

Share the word.

On top of being slow to recognize the role, we tend not to broadcast it. Many people "think that caregiving is someone's private business," White says. Only about three-quarters of family caregivers share this fact with their colleagues or with health professionals, a 2013 survey found. Even fewer, about two-thirds, tell their bosses. The more people are aware of how widespread caregiving is, the less isolating and stigmatizing it will be, advocates say.

Get ready.

Even if you're not actively taking care of someone now, chances are that you will be, especially if you're a baby boomer or a millennial. Today, there are seven potential caregivers for every person over 80; that ratio is going to shrink to 4:1 by 2030. And by 2050, shifting demographics mean that there will be fewer than 2.9 people able to take care of every one person over 80, according to a 2013 report by the AARP Public Policy Institute.

Now mix in trends like smaller family sizes, remarriages creating multiple layers of parents and stepparents, and obesity and other illnesses that are making people sicker earlier. That adds up to a lot of future caregivers among us -- White says caregiving is "quickly becoming a rite of passage" for Americans -- whether or not we identify with the word.

Paula Spencer Scott

Paula Spencer Scott is the author of Surviving Alzheimer's: Practical Tips and Soul-Saving Wisdom for Caregivers and much of the Alzheimer's and caregiving content on Caring. See full bio