Story Bank: Cassie, Raymond

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Cassie, Raymond

Cassie is a full-time, unpaid caregiver to the youngest of her four children, Jaxen, who is living with an unknown, life-threatening medical condition.

Cassie's husband, Tim, was diagnosed with a debilitating bone condition six years ago and narcolepsy two years ago. He needed to change jobs as a master electrician of 20 years, to a high school mathematics teacher. He now works two additional jobs to help his family make ends meet.

"He really can't drive the kids or really go anywhere except to and from work," said Cassie. "He has what are called ‘wake dreams’. Simply put, his body goes on auto-pilot, but he is really sleeping. It's really bad with stress.”

Although worried about Tim's diagnoses, the couple was excited to welcome their new family member, Jaxen.

In the beginning, Jaxen appeared healthy. But by the time he turned three months old, he began experiencing episodic cyanosis.

Cassie vividly recalls sitting on her deck, frantically calling 911 to tell them Jaxen had turned a deep shade of blue and that he had died. She was shocked when, a few moments later, Jaxen took a breath and came to life again.

Cassie and Tim spent the next week setting up appointments to see doctors and run tests on Jaxen. Eventually, they found that Maine does not have the capacity to provide necessary medical treatment to Jaxen. He ultimately needed to be cared for in Boston, and so the weekly hours-long drives to and from the hospital began.

"I spent the next several months watching Jaxen claw at his own face, trying to clear his own airway while suffocating," Cassie said. "Silence in our home meant Jaxen was dying somewhere. We did our very best to keep one-hundred percent visuals on him, but we are a big family, and the other kids deserved to be kids, not caregivers."

Jaxen needed to wear an oximeter at all times to measure his oxygen levels.

"The oximeter would go off constantly, day and night, letting us know he wasn't getting enough oxygen," said Cassie.

Last March, Jaxen received a tracheostomy, an incision in his neck that provides an alternative airway.

After his surgery, Cassie and Tim were able to get in-home nursing care, which relieved them somewhat.

"We could finally relax," said Cassie. "He had a safe airway…no more constant fear of trying to make a baby breathe…the fear of his throat not opening and him dying before me, or worse yet, before his siblings."

Currently, Jaxen is receiving almost all of his care in Boston. Thankfully, most of his treatments are covered by MaineCare.

"I couldn't survive without MaineCare at this point," said Cassie.

Each night, Cassie sits in a chair next to Jaxen and watches over him.

“There’s a lot of maintenance overnight,” said Cassie.

She lets herself fall asleep around 4:30 AM, wakes up a couple of hours later, and prepares breakfast for her family. By 7:00 AM, Jaxen’s nurse who helps care for him three times a week arrives and stays with him while Cassie drives her children to school 30 minutes away. She is back at her house by 9:00 AM in time to start her day of calls and paperwork.

“If I'm not doing piles of social security paperwork or insurance or fighting a payment or scheduling the doctor's appointments, I’m getting the tests, learning the symptoms, talking with the nurse…it's appointments and nonstop paperwork,” said Cassie.

Somedays are better than others. “I had someone at DHHS say that to me, ‘Well it's your kid. You had him. Take care of him,’” said Cassie. “I'm not asking for favors, I'm not being lazy, I'm stuck. I don’t' know what to do.”

After Cassie picks up the children from school, she helps with homework, prepares dinner, and gets everyone ready for bed. Afterwards, she goes back to phone calls, scheduling appointments, and paying medical bills.

Cassie is determined to give her children the best life possible, even if that means she has little to no time to herself

“You sacrifice what there is so that they grow up okay,” said Cassie. “I try to make sure the kids have some normalcy to their life. I think that is pretty much my goal, to make sure the kids are affected as little as possible. I don’t think you watch your brother turn blue and think he’s dying and know that this could be the last time I see him, without some sort of permanent affects.”

 Despite her packed schedule, Cassie wants to work.

“My husband works three jobs, but I would feel a huge sense of relief if I could get one,” said Cassie. “I would love it. Even though my life is crazy, crazy, crazy…if somebody could give me a job I could do at home, I would do it in a second. The relief would far outweigh the overwhelming stress of doing this job.”

A job might be able to lend Cassie some reprieve, but her current full-time, unpaid job of caring for a loved one will always be front and center in her life.

"I continued to tell myself it [Jaxen’s medical condition] was temporary,” said Cassie. “I kept saying just a little more, then it will be over."

But it's not over. Jaxen will live with the possibility of his lungs collapsing, his drop foot that contributes to his frequent falls, his difficulty swallowing, his leg braces, muscle pain, and intense migraines for many years to come. Without MaineCare, Jaxen’s medical challenges would become less manageable and Cassie and Tim would experience increased anxiety related to medical debt.

"Likely, we will never know why, or how, or even get a name for it, but we know our life is upside down because of it," said Cassie.