SARATOGA SPRINGS — Muriel True had a hard time making the decision to care for her aging mother at home. She felt so unprepared for the responsibility, and had so many unanswered questions. New York state lawmakers recognized the plight of True and many others like her, and in response to the need for support and resources for these caregivers, both houses recently passed legislation that will help millions of family caregivers. 

The Caregiver Advise, Record and Enable Act (CARE Act) ensures hospital patients can designate a family caregiver and requires hospitals to offer the caregiver instruction and demonstrations of medical tasks they will be expected to provide for their loved ones at home, such as administering multiple medications, dressing wounds and operating medical equipment.

“People don’t realize until they get their loved ones home that simple things like bathing and toileting can be a daunting task,” said True, “especially when not done properly, with dignity.”

 True added that she was not prepared for providing proper medication dosages, special diet needs, and did not realize there would be mental health needs, as well. True had to consider home renovation aspects, too, as many caregivers do, given how many homes are built without wheelchairs in mind. These were all issues she had to tackle with little professional guidance.

“I felt thrown in,” said True. “I needed guidance and it was difficult to find answers. I spent a lot of time making phone calls all over and getting no answers. I didn’t even know where to go for support.” 

Sharing the responsibility with her sister and having the support of her husband made it feasible for True, but she said many people do not have that kind of support. She knows caregivers need someone to relieve them just for a few hours so they can run errands and tend to their own needs.

“There are so many caregivers who don’t have someone who can give them a break,” said True. “There are more and more elderly people who want to receive home care. This bill is so important for so many people and so, so overdue.”

The bill won unanimous approval in the Assembly earlier this week, and unanimous approval in the Senate on May 27. Governor Andrew Cuomo is expected to sign it sometime this summer, making New York the 12th state to have legislation of this kind.

New York State AARP Director Beth Finkel said the bill will help as many as 2.8 million New Yorkers who provide unpaid care to family and loved ones, plus as many as 1.6 million adult New Yorkers who are discharged home from hospitals every year. The value of this unpaid care is estimated at $32 billion a year.

“Our lawmakers should be proud of voting to make a real and positive difference in the lives of millions, whether they be those providing care to family members and loved ones at home or those receiving the care. Information is power, and the Legislature is empowering millions of family caregivers,” said Finkel.

Parents, by nature, love their children unconditionally, and are willing to do anything to better their life. That love is what is bringing a Galway Dad across the country and back, by foot no less. Shaun Evans will set across the country on July 4th, while pushing his nine-year old son, Shamus, along for the adventure. The coast-to-coast trip all began from the love that fuels this dad.

Shamus, Evans’ son who was born with cerebral palsy which limits the use of his legs, asked his dad two years ago after they ran an ultra-marathon together, if it was possible to run across the country, to which Evans answered: “Anything is possible.”

Evans said initially when Shamus asked he and his wife that question, after a six-hour ultra-marathon run in Pittsfield, Mass., they kind of shrugged it off.

“I thought he might ask again and then sort of forget about it. Shamus did not. One night before bed he said “Dad I want to do it. I want to go from one side of the country to another and help kids like me,” said Evans.

Shamus’ goal was to be able to provide other children with the specialized chair his father uses to run with him. As a toddler, Evans would run and push his son along, where they would have talks about everything from preschool to the weather. Once Shamus outgrew that stroller, Evans looked into a specialized chair with and learned the cost was $6,000. Through an organization called Ainsley’s Angels, Evans was able to fundraise and purchase a chair for $800. Evans said it is important to Shamus to give others the same opportunity he has to move.

“Shamus is fearless and feels he can do anything; he wants others to feel that,” said Evans.

Through Ainsley’s Angels Evans developed a connection with the former marine who started the organization, Kim ‘Rooster’ Rossiter, who is a Major in the United States Marine Corps, currently stationed in Norfolk, Va., who helps families obtain these chairs. Evans said Rooster named the organization after his daughter Ainsley, who also needed a way to be mobile. When Evans told Rooster about Shamus’ dream to run from coast to coast, he immediately asked what he could do to help.

“I called him and the first thing he said was he was in, and how could he help make it happen,” said Evans.

Evans said this mission would not be happening without the support of his wife Nicole and Shamus’ younger brother Simon, age 7. Evans said Nicole will be driving an RV alongside the trip, with Simon as her co-pilot. Evans described Simon and Shamus as best friends.

“The boys are inseparable, they couldn’t be closer; we are so fortunate. And my wife, she is the one that holds everything together,” said Evans.

The 3,186-mile trip across the country trip took close to two years to plan. The run will help Ainsley’s Angels to provide more children with a gift of mobility and the ability to compete. Evans said he needs to run 60 miles a day in order to make it by Labor Day weekend.  Evans said the shortest possible way to make the trip is from Seattle to the Bronx. To mark the beginning of the voyage, Shamus will take a few steps out into the ocean and begin to work his way East with his dad.

As a physical therapist, Evans noticed signs of Shamus having mobility issues at a very early age. After he was diagnosed at 11 months, Evans said he and his wife quickly made the decision to give him every opportunity they could. Evans said a lot of times in situations like these, the moms feel much of the burden. He said he wanted to include his sons in on his passion, running.

“You always think of dads sharing what they love with their sons, baseball, football, what they love to do. For me, it was running and I knew I had to find a way to share that,” said Evans.

Rooster not only helped Evans to obtain a chair but has also been a mentor. Evans said Rooster showed him how to be strong and to stay focused on the goal of being the best father possible, no matter what is thrown at you.

“Shaun embodies the qualities we wish to see in every Dad, dedicated to his children’s success and driven to ensure only the best for them.  He sets a positive example for his sons to strive to emulate, both as a father and as a husband to their mother,” said Rooster.

To find out more about the Evans family’s journey go to www.facebook.com/power2push or Ainsleysangels.org.