Kerry Ann Knapp
Thirty-one years ago, my husband, Bruce, and I took on the role of a lifetime. I became the legal guardian, and Bruce the caregiver, for my nephew Dan Bivins, who was 7 years old at the time and born with Down syndrome. That still stands as one of the luckiest days of my life.
Dan has since come far toward taking care of himself and living a successful, independent life. He holds a part-time job. He is a beloved volunteer in the community. He looks to do good wherever he goes.
How, between then and now, has Dan made so much progress?
If only I could claim it all came easy. Caregiving is one of the hardest, most important jobs in the world. Caregivers are seldom fully prepared, physically, mentally or otherwise, to be caregivers. The demands are 24/7 but can feel like even more.
I’m hardly alone. Some 53 million Americans — more than 1 in 5 of us — serve as caregivers, according to a 2020 study by the National Alliance for Caregiving and AARP. No wonder we mark November as National Family Caregivers Month.
I was there in the delivery room with my sister when Danny was born. We’ve treated Danny ever since as if he were our own son.
On the most basic level, we stay on top of his health and hygiene. We make sure he gets to appointments with doctors and dentists and takes his medications, and we help him eat healthy food, bathe, dress suitably for the weather, and exercise.
For years, we never really thought about ourselves. We constantly ran around to see that we were there for Danny. We worried about meeting all his needs. We focused on how he needed more assistance than any of us, and at times, it would break our hearts. We would get anxious, frustrated, angry and depressed, just like many other caregivers. You can lose yourself as a human being when caring for someone else. Sometimes, we even asked ourselves, “Why are we even doing this?”
But eventually we realized nobody can do this alone. We saw that caregivers like us need care, too. Unless we take care of ourselves, how can we take care of anyone who depends on our caring for them?
So we researched our options and reached out to get a hand. And that’s how we teamed up 16 years ago with Careforth, a national organization for caregivers headquartered in Boston. From the get-go, the people there came right out and asked, “What can we do for you and Danny?”
The safety net gives us peace of mind. We can catch a break and regenerate. It’s turned out to be a godsend.
Even so, we never ran short on challenges. But early on, we decided how we would raise Danny. We never wanted him to grow up looking at anyone doing something and saying, “I wish I could do that.” No. We wanted him to say: “I’m going to try it. And I’m going to do it.” He never sees himself as a person with a disability because we never raised him as a person with a disability.
And just look at how much he’s accomplished. Danny holds down a job at a local pizza place where every Sunday night, he’s designated its “mayor.” Nineteen years ago, Danny joined Best Buddies International, a nonprofit organization promoting a global volunteer movement to create inclusion opportunities for one-to-one friendships and work programs. While still in high school, he founded the Best Buddies chapter at Weymouth High School and today still serves as one of its ambassadors.
Around town, too, whether at a parade or a fundraiser, Danny is treated as a VIP. A few years ago, he acted as a greeter at Weymouth Town Hall. Residents would enter the municipal building looking to get a birth certificate or pay a water bill, and Danny would play go-between. He’d say, “Hey, I’m Dan, how can I help you?” Then he’d guide folks toward the offices where a town employee could help.
I’ve learned so much from Danny. I am who I am today because he is who he is. He’s made me a better person. He has taught me and all of our family so many life lessons. He’s a blessing and an angel on earth. As I’ve found out, caregiving is all about connections, the ties caregivers forge with the community and professionals.
So for Thanksgiving, I wish to express my gratitude for all the members of Team Dan — family, friends and professionals alike — because caregiving is a team effort. We’re all tag-teaming, particularly me, Bruce, our daughter Madison, and Danny’s care manager Lindsay and nurse Jessica.
As I know only too well, caregiving is an issue that goes well beyond my family and me. The U.S. is confronting a caregiver crisis. Caregivers as a whole are overlooked, misunderstood and underappreciated. They need to be educated and coached to gain knowledge and confidence. We have to build a better caregiver ecosystem.
If l have any advice to give to other caregivers, it’s this: Nobody can do this alone, nor should anyone try to. We’re all too proud to admit caregiving for a loved one is more than we can handle by ourselves. But you should never feel shy or embarrassed about asking for help.
So reach out. Reach out to your community. Reach out to your health care professionals. Only if we reach too far are we ever likely to reach far enough.
Kerry Ann Knapp, a resident of Weymouth, Massachusetts, is an assistant to Weymouth Mayor Bob Hedlund.
