November is National Family Caregiver Month (NFCM); An opportunity to recognize and honor the many families at Ability Beyond who provide daily, at-home care for their loved ones after work, day, and recreational programs have ended.

“Family caregivers are often the unsung heroes in our work,” said Cathie Petrosky, our Donor Engagement Officer.

For Bob and Lucia Smits, of Connecticut, caring for their 34-year-old son Willem is “just what family does.” The day-to-day flow of their lives is outlined by his needs and schedule, as Willem attends the Ability Beyond day program Monday to Friday, practices for the Special Olympics on the weekend, and participates in Y programming on Sundays.

The Smits never expect to be “empty nesters,” and their spontaneity is limited by responsibility. Yet the privilege and routine of caring for Willem has shaped their family values.

“We have a lot of things that we just have to do,” Lucia said. “But it gives us more quality time together. We try to find humor and lightness in what we are doing and ways to do things as a team. We find meaning in everyday errands and tasks.”

One Person’s Errand…

When you hear “date night,” what comes to mind?

For Bob, Lucia, and other family caregivers, definitions often get creative because time and energy are limited. Family caregivers must also flex to accommodate changes. That’s how a regular Friday evening trip to Caraluzzi’s Supermarket became date night for Bob and Lucia. Willem used to go bowling on Friday evenings, so the Smits would make an occasion of going out themselves. When Willem’s bowling schedule eventually changed, instead of canceling date night, Bob and Lucia kept it alive by going to the store together to do their shopping and then returning home to Willem and cooking dinner.

“Our flexibility for doing things is limited,” Lucia said. “But there is a pay-off, and it gives us structure.”

Another “pay-off” is the special love that Willem has for Lucia. As Willem’s bonus mom, Lucia came into Bob and Willem’s life only 8 years ago. Lucia and Willem had to develop their own relationship, and that has really blossomed. Bob used to make weekend pancakes for Willem, but doesn’t make them as often as Willem now prefers Lucia’s pancakes over his. Willem also checks up on Lucia when she is packing his lunch. Willem will spontaneously share silly YouTube videos with her, for her reaction.

“He’s not a great conversationalist, but he has a sense of humor and a desire to connect,” Lucia said. “Once I got to know his language of connection, it’s become very rewarding.”

Caring for the Caregivers

About 1 in 3 Americans provide at-home care for a family member or friend who is chronically ill, living with a disability, or aging. In fact, family caregivers are on the front lines of need: 78% of adults with special care needs who live in the community rely on family and friends as their “only source of help.” (Caregiver Action Network)

“We’re in a good place, because we’re both healthy and capable, and because Willem isn’t high maintenance,” Bob said. “But if we didn’t have Ability Beyond, our lives would be very different.”

For instance, Bob can work full-time because of the consistency of Willem’s schedule. (He has attended our day program for 14 years.)

In the Smits household, activity begins at 4:50am every morning. Bob is up walking the dog. Lucia gets up to make breakfast. By 7:30am, Willem is off to Day Program on the Ability Beyond van. Between then and 4:30pm, Bob and Lucia “run around and do our respective things.” When Willem gets home, he has a snack, decompresses, runs on the treadmill, and then joins the family for dinner. They watch Jeopardy and Wheel of Fortune.

“This is a routine we do every day, five days a week, other than for major holidays,” Bob said. “It’s pretty simple.”

We Are Family

Bob and Lucia got married in 2020 and blended their families, including Willem, his sister, and Lucia’s four adult children. Lucia said that her family is her source of perspective and grounding.

“At this point, Willem has a rich life of purpose and connection,” she said. “So I guess in the greater scheme of things, it’s fairly ironic that he is the adult child I worry least about.”

A couple of weeks ago, Willem’s sister got married. The whole family attended, and Bob gave his Father of the Bride speech at the wedding. His advice to the new couple was simple…

“Everybody’s dealing with something,” Bob said. “God gives everybody a challenge. You can’t say that somebody else has a better life than you do. They just have a different life.” Our life is different, and we’re very happy about it. God gave us our challenge and said, ‘You can handle this.’”

Take Action

Thousands of families like the Smits rely on Ability Beyond for a variety of services, from day programs and employment programs to residential services and more. Do what you can today to help support our programs so we can help more families like today.