My Journey as a Working Caregiver

When my mom came to live with me, I never thought she would stay for more than 20 years, and that during that time I would be her primary caregiver. Like most family caregivers I was wholly unprepared for the role. A divorced mom myself with a teenage daughter, and a sometimes debilitating chronic illness, I also worked full-time. Being a working mom took just about all the time, energy and resources I could muster. Then I added caregiving...

Looking back, I realize that caregiving is a job, and I had to learn everything about it "the hard way." Millions of us are doing the very same job--taking care of a loved one--but doing it in what seems like millions of different ways. No other job works like that. Through trial and error, and years of practice, I learned there are three basic functions every family caregiver should master:

· Being the expert on the care recipient

· Understanding how to coordinate care

· Being a knowledgeable and confident advocate for the care recipient

There are many notions about what kinds of support working family caregivers need. Having capacity in these three areas would be a good start. Orienting working adults to the basics of caregiving makes them much more prepared to respond when caregiving challenges arise. This support can be offered anywhere adults gather: on the job, in community-based settings, through agency and institutional outreach.

I was fortunate. My job offered a great deal of flexibility which proved to be my salvation, as I would work late evenings and weekends making up time missed from my desk. Nevertheless, dipping into savings to cover unexpected expenses put my future financial stability at risk. Panicked calls and restless nights led to sleep deprivation. Worry and stress caused frequent flare-ups of my medical condition threatening my own.well-being. The frustrating hunt for guidance, support, and resources was unending. This is all part of the caregiving culture, a culture that needs to change.

If I had to do it all over again, of course I would still move mom into my home in a heartbeat. I wanted to do it. But it shouldn't be so hard. A good hands-on orientation to family-based care--the myriad tasks and demands, the complexities, the risks--could have put me ahead of the curve. From my vantage point today, I know it would have made a difference. As the population ages and health care becomes even more complex, working caregivers—and workers who will eventually become caregivers—need that kind of heads-up guidance more than ever.

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