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When Dad is the Primary Caregiver

Being a good father isn't about being a breadwinner, or about food, clothes, or a place to live. Being a good father is simply about being with your kids.
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For many, Father's Day will serve up a typical buffet of bad ties, homemade photo mugs, new putters and old stand-bys such as travel kits and DVDs. There may be BBQs and time off from yard chores. A day for Dad to spend it anyway he wishes. For other Dads, gifts and activities are sprinkled throughout a day that is spent in much of the same way as any other: helping their family member bathe, dress and eat, administering medications, working through a session of PT exercises, checking and rechecking ventilator tubes and attending to the many other minute details that accompany the role of caring for a loved one with a chronic illness or disability. For these Dads, Father's Day is a day to recognize the contributions and sacrifices that these individuals make as men navigating unconventional channels as primary caregivers.

A recent study commissioned by the Working Mother Institute on the effects of caring for a loved one with Alzheimer found that 82% of caregivers for this population are women. And while many reports exist documenting the impacts of caregiving on women -- depression, fatigue, anxiety, stress -- fewer reports exist that focus on male caregivers. In a population where caregivers are perceived as the "invisible patients," men who occupy this role risk becoming doubly erased as people who do not fit conventional representations of either "caregiver" or "father." It does little good for anyone involved -- Fathers, Mothers, families or health care providers -- to overlook the distinctive experience of these men occupying multiple roles as husbands, fathers, professionals, and caregivers.

Brian Denger is the proud father of three who lives in Maine. He is no stranger to the challenges presented by chronic illness: His wife, Alice, lives with Chrohn's Disease, his daughter Rachel has Type-1 Diabetes and his sons, Matthew and Patrick, both have Duchenne Muscular Dystrophy. From an early time in his life as a husband and father, Brian took on a lion's share of the caregiving role for his entire family. He and Alice have a "division of labor" that works for them with Brian handling many of the day-to-day duties (attending to physical and general care needs, getting his boys off to school or out to activities) while Alice manages all facets of the household, coordinates medical appointments, and helps share care duties when necessary. "I carried Matthew up two flights of stairs so he could be with friends the night of his senior prom," recalls Brian. "I've muscled Patrick's wheelchair up a flight of stairs in Boston near Fenway Park so he could catch a Red Sox game." Moreover, this role reversal has put Brian in the unique position to consider the impact of being a caregiver on his sense of fatherhood:

Societal attitudes and historical representations about fathers create a person who 'fixes things.' We can't fix Duchenne, but there are other aspects to this where the same kind of 'brute force' masculine logic applies, and we're required to use it to think of solutions to overcome exclusion, ignorance, and bias.

Wisconsin-based father Jay Keller arrives at similar insights in caring for his son, Andy, a young man who also has Duchenne Muscular Dystrophy. In 2008, Jay left his lucrative career to care for his son full-time. "At first, from the caregiver's standpoint, it's overwhelming," states Jay, speaking about his earliest experiences in the caregiving role. "But what I've learned is that there are two ways you can look at all those things. As one chore after another, or as a ton of little opportunities to show how much you love your child." As Jay discovered in the course of caring for Andy, he was learning as much about his son as he was about himself, including how to adjust his notions of what it meant to be the kind of "good father" that media and celebrity culture tend to idealize, but that does not actually exist:

Being a good father isn't about being a breadwinner, or about food, or clothes, or a place to live, or security. And it's not about going to a show or a play or a concert. Being a good father is simply about being with your kids. It's about being with them, and no matter what else is going on in the world around you, simply enjoying whatever the moment has to offer.

Though resources exist, such as the program I run, HerSelf First, to help women caregivers invest in their well-being on a daily basis, we need to remain mindful that male caregivers need the same type of assistance and consideration. Though perhaps the minority in the caregiving community, men like Brian and Jay are certainly not alone. Their stories matter; their journeys deserve to be documented to help one another and the others who, like them, toil, love and sacrifice in anonymity.