Breaking the Stigma of Hospice Care: ‘It’s not about death.’

Breaking the Stigma of Hospice Care: ‘It’s not about death.’

CHARLOTTE, NC (WBTV) - When many hear the word hospice, they only equate it with end of life, and dying. But it’s so much more – and provides a critical service.

Did you know an estimated 1.4 million people received hospice care in 2016? Established in the 1970s, it has struggled to overcome the stigma attached to it.

But for Linda Mateny of Charlotte, she found hospice to be a place of compassion and caring. She lost her husband, Jack, to liver cancer 12 years ago.

“I died the same day my husband died,” she said. “I was no longer Mrs. Jack Mateny. I wasn't a friend; I wasn't a lover; I wasn't a cheerleader. I wasn't -- all those pieces died. So, I'm alive with a life I don't know how to live and they helped me put that back together again.”

The most difficult five months of her life made easier by her husband’s hospice team which is why she told me, “Hospice workers are God's angels on earth. I cannot tell you the emotional relief that you have when someone steps in to care for your loved one in the ways that are not your strengths.”

After the terminal diagnosis, they spent most of that time in hospice care - both at their home and in the Harris Hospice Unit at Novant Health Presbyterian Medical Center. She realizes that many equate hospice with dying – and once felt the same way. It’s why she wants you to know it's so much more.

“It’s about living the best life you can through whatever process you’re going through,” said Mateny. “Nobody wants to get sick…everybody wants to go to heaven; nobody wants to die to get there. They just make that passage easier. It’s still a horrible loss but they do make it easier.”

Helping families navigate that loss is what Carol Cook, a hospice nurse at Novant, believes is her calling.

“It brings my soul joy to provide comfort to patients and the families as they're going through this transition,” she said. “It's really an honor to get to be part of it.”

A personal loss drew the former surgical nurse to hospice care. “My Granny was in hospice care, she recalled. “She was sick for about six months before she passed. That hospice nurse called me every other day and gave me an update on my Granny.”

The experience helped Carol realize she could provide a different kind of care – one that focused not just on the patient but their families as well

”This is not about death,” she implored. “This is about living. This is about making the most of the time - the finite amount of time that all of us have left.”

It’s during that finite amount of time that she’s seen miracles happen and told me, “I have seen miracles happen. And when I say, miracles - I don’t necessarily mean people get better. I mean forgiveness. I mean families coming together. I mean people releasing years of struggle that they’ve had.”

For Linda, the miracle was the year of counseling Hospice provided after her husband’s death. Especially when she recalls one memory so tough, it still makes her emotional today.

“The first time I had to put on a winter coat by myself” she said – getting choked up at the thought. “And not having him hold it for me was a drop to the knees -- and that was six months later.”

Not only did the counseling help her move forward, it also allowed her to turn her pain into purpose.

“Romans 8:28 is my mantra: In all things God works for the good of those who love him and are called according to his purpose,” said Mateny. “If I can’t turn something so awful into something good, then all the suffering wasn’t worth-- it wasn’t worth it. It has to be used for something good.”

Part of that good - the Jack Matney Memorial Labyrinth she worked to establish at Novant’s main campus. Once the hospital’s smoking area, it’s now a place of peace, prayer and solace.

“The hospital wanted a place of peace,” she remembered. “I wanted to honor my husband. And, people were willing to help and it just happened.”

And, in honoring her husband, Linda has built a labyrinth of peace in her heart that gives her comfort each day. “What a gift, what a blessing,” she said. “And I got to have him for 25 years - that’s pretty special.”

Linda also co-authored the book, “Imagining Heaven: An Anthology of Personal Visions of Heaven.” She reached out to more than 100 authors asking them to share their thoughts on what they think heaven will be like. Where did she get such an idea?

“It gave me great joy to imagine being in heaven with [my husband],” she said. “Well, I thought if it gives me joy, maybe it gives other people joy.”

All the proceeds for the book have benefited hospice.

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