When Dad is the Primary Caregiver

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. Though high, the statistic is not new or surprising. Confronted with the rising cost and diminishing assistance of health care provisions, more families are choosing in-home care for individuals with chronic illnesses or disabilities. The documentation on the impacts of such care on women are profuse, which is, slowly and steadily, leading to more ways to help these women maintain their own self-care and personal fulfillment. HerSelf First is proudly one such programs. But what if the caregiver in question is male? What if Dad is the person who assumes the majority of caregiving responsibilities? There are much fewer reports devoted to understanding the complex nature of men who step into this conventionally feminized role, and yet despite the gender differences that come into play, male caregivers are prone to many of the same issues: fatigue, depression, and anxiety.

In an effort to give voice to the male caregiving experience, I am pleased to feature this essay by Father of three, husband, and caregiver Jay Keller from Green Bay Wisconsin. Jay graciously offered to share his candid and provocative thoughts on caring full-time for his son, Andy, who as Duchenne Muscular Dystrophy. I chose to post his piece in advance of Father’s Day as a way to pay tribute to the many Dads who share similar stories like Jay’s and for those Dads who may be wrestling with their relationship to a chronic illness in their households.

Thank you, Jay!

Being a good father comes naturally to some men, and they’re usually easy to spot. He’s the guy laughing and bowling with his kids, while the guy in the next lane is rolling the ball for beer frames. You’ll find him coaching his son’s little league baseball team, or taping his daughter’s soccer game, or out on the floor with her at the father-daughter dance. He can be spotted in the pool, tossing his kid high in the air for a good splash, or listening attentively at the parent teacher conference.

I am not one of those fathers. I wish I were, but it has never come naturally for me. I’ve been married twice, and divorced twice, so apparently being a good husband didn’t come naturally either. I have a son and two daughters. All three are good, well adjusted young adults, and I thank their mothers for that.

Now if you ask my kids, they’ll tell you I was a good father. But I wasn’t, not really. I wasn’t a particularly bad one, but my priorities were never in quite the right place. To me, being a good father meant supporting them, being the breadwinner, making sure they had food, clothes, a nice place to live, and above all, security. I was a workaholic, so while those other fathers were taking their kids bowling, I was working overtime. Rather than attending that parent teacher conference, I was packing for a business trip. And instead of going to that father-daughter dance, I was in a meeting.

But a few years ago, I was forced to make a few changes. Life changes. My son is a quadriplegic with Duchenne Muscular Dystrophy. He relies on a ventilator to breathe and a feeding tube to eat. For years he was cared for by his mother and sister. They would take turns living with him, each doing a week at a time, and I would try to help out by doing about one long weekend a month. After a few years this began to take quite a toll on everyone, emotionally as well as physically. Andy recognized this, and finally told us that perhaps we should just put him in an assisted living home somewhere. For me, the reluctant father, hearing that was exactly the slap upside the head that I needed.

In February of 2008 I gave up my career to become Andy’s full-time caregiver. Doing so was without a doubt the most frightening decision I’ve ever had to make. As it turns out, it was also the best decision I’ve ever had to make.

Patience is not one of my virtues. Just like being a good father, it doesn’t come naturally. And when you’re providing 24×7 care for someone who has virtually no movement, patience isn’t an option, it’s a necessity. Fortunately, my son is a good teacher. For him, patience isn’t a choice. When you no longer have any movement, and have to rely on your caregiver for virtually every need, patience is a must. And likewise, it is essential for the caregiver.

Caring for a quadriplegic is without a doubt the hardest work I’ve ever done. If I thought I was a workaholic before, it was a cakewalk compared to this. Think about it. You’re caring for someone who has no movement. He relies on a machine to breathe, and a feeding tube to eat. He needs you to bathe him. He needs you to bathroom him. He needs you to dress him, shave him, comb his hair, brush his teeth. He needs you to scratch every itch. To dial the phone. To get him a glass of water. To help him drink it. He needs you to turn the channel on the tv, to put a cd in the stereo, or to turn up the volume.

At first, from the caregiver’s standpoint, it’s overwhelming. 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.

When I first began caring for Andy, I tried to push him to do things. Fun things. Get out of the house, go to a park, go to a show, see a play, attend a concert. It was like pulling teeth. He just wasn’t comfortable with any of that. It seemed that all he wanted was to stay cooped up in his little apartment, and it drove me crazy. Finally, at some point a very smart, beautiful friend of mine told me something I’ll never forget. She said “Jay, sometimes when someone is faced with the daily challenges that Andrew is, their world just gets smaller. It’s a comfort thing.”

And once I realized that, caring for him became a joy, an absolute joy. What I realized was that for him, what was important wasn’t that I entertain him. It was that I simply cared for him.

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. And I think, perhaps, that’s what all those really good fathers knew all along.

About Jay: Jay Keller is the proud father of three children, son Andrew and daughters Bobbi Jo and Liza. He left his lifelong career in the banking industry in 2008 to care for Andy, who has Duchenne Muscular Dystrophy, and calls it the best decision he’s ever made. Jay and Andy live in Green Bay, Wisconsin. And yes, they’re cheeseheads!