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, of my nephew Dan Bivins, who was then 7 years old and born with Down syndrome. It still remains one of the luckiest days of my life.
Since then, Dan has made great strides in taking care of himself and living a successful, independent life. He has a part-time job. He is a valued volunteer in the community. He seeks to do good wherever he goes.
How has Dan made so much progress since then?
If only I could pretend everything was easy. Caregiving is one of the hardest and most important jobs in the world. Caregivers are rarely fully prepared, physically, mentally, or otherwise, to become caregivers. The demands are there 24/7, but can seem even more numerous.
I’m hardly alone. A few 53 million Americans – more than one in five of us – is a caregiver, according to a 2020 study by the National Alliance for Caregiving and AARP. It’s no wonder November is National Caregivers Month.
I was there in the delivery room with my sister when Danny was born. Since then, we have treated Danny like he was our own son.
At the most basic level, we remain attentive to their health and hygiene. We make sure he goes to his appointments with doctors and dentists and takes his medications, and we help him eat healthy foods, take a bath, dress appropriately for the weather and to exercise.
For years we never really thought about ourselves. We were constantly running around to see that we were there for Danny. We were afraid to meet all of his needs. We focused on the fact that he needed more help than any of us, and sometimes it broke our hearts. We became anxious, frustrated, angry and depressed, just like many other caregivers. You can lose yourself as a human being when you’re caring for someone else. Sometimes we even asked ourselves, “Why are we doing this?” »
But we eventually realized that no one could do it alone. We have found that caregivers like us also need care. If we don’t take care of ourselves, how can we take care of those who depend on us?
So we researched our options and reached out for a helping hand. And so 16 years ago we partnered with Careforth, a national organization for caregivers headquartered in Boston. Right off the bat, people came out and asked, “What can we do for you and Danny?”
The safety net gives us peace of mind. We can take a break and regenerate. This turned out to be a godsend.
Despite this, we have never lacked challenges. But early on, we decided how we were going to raise Danny. We never wanted him to grow up watching someone do something and saying, “I wish I could do that.” ” No. We wanted him to say, “I’ll try.” And I will do it. He never considers himself a disabled person because we never raised him as a disabled person.
And look at all he accomplished. Danny takes a job at a local pizzeria where every Sunday evening he appoints the “mayor”. Nineteen years ago, Danny joined Best Buddies International, a non-profit organization promoting a global volunteer movement aimed at creating inclusive opportunities for individual friendships and work programs. While still in high school, he founded the Best Buddies chapter at Weymouth High School and is still one of its ambassadors today.
Around town too, whether at a parade or a fundraiser, Danny is treated like a VIP. A few years ago he was a receptionist at Weymouth Town Hall. Residents would enter the municipal building to obtain a birth certificate or pay a water bill, and Danny played the role of intermediary. He would say, “Hey, my name is Dan, how can I help you?” » Then he would guide people to offices where a city employee could help them.
I learned so much from Danny. I am who I am today because he is who he is. He made me a better person. He taught me and our entire family so many life lessons. He is a blessing and an angel on earth. As I have discovered, caregiving is all about connections, the bonds that caregivers form with the community and professionals.
So, this Thanksgiving, I want to express my gratitude to everyone on Team Dan – family, friends and professionals – because providing care is a team effort. We’re all a team, especially me, Bruce, our daughter Madison, Lindsay, Danny’s caregiver, and nurse Jessica.
As I know very well, caregiving is an issue that goes well beyond my family and me. The United States is facing a caregiver crisis. Caregivers as a whole are neglected, misunderstood and underestimated. They need to be educated and coached to gain knowledge and confidence. We need to build a better ecosystem of caregivers.
If I have one piece of advice for other caregivers, it’s this: no one can do it alone, and no one should try to. We are all too proud to admit that caring for a loved one is more than we can handle on our own. But you should never feel shy or embarrassed about asking for help.
So contact us. Reach out to your community. Contact your healthcare professionals. Only if we go too far can we reach far enough.
Kerry Ann Knapp, a resident of Weymouth, Massachusetts, is an aide to Weymouth Mayor Bob Hedlund.
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