Lisa Niemi Swayze talks about caregiving in the public eye. Patrick Swayze was an image of vitality for most people, bursting into the public eye with iconic performances in movies like The Outsiders, Ghost and Dirty Dancing. And for more than 34 years, Lisa Niemi Swayze was by his side — first as a girlfriend, then as a wife, and finally, as his caregiver when the actor was battling the pancreatic cancer that eventually took his life.

NiemiIt’s been three years since Patrick Swayze’s death, and Lisa Niemi Swayze is almost disarmingly candid when discussing the 22 months she spent with her husband after his diagnosis. Describing it as a nightmare from which she couldn’t wake, Swayze shares the toughest parts of her experience with others, both in her conversations and her book, Worth Fighting For. But she is also determined to let people know that many unexpected “good things” came out of her cancer journey with Patrick, saying she hopes to support other caregivers by sharing her personal story that transpired in a very public way.

“When someone is diagnosed with cancer, everyone in the family pays a price,” Swayze says, speaking from her home on the West Coast. “Everyone involved goes through terrible emotional and physical hardships.

“I think some people thought that because we were used to being in the spotlight — ‘seasoned professionals’ if you will— that it was somehow easier for us to cope with all the attention,” she continues. “But you know, it wasn’t exactly like some tabloid was showing a picture of someone getting fat. Basically, I was reading things from the very beginning that said my husband was going to die.”

FACING CANCER AS REALISTIC OPTIMISTS

Swayze describes herself and Patrick as “realistic optimists” throughout the treatment process. She says they both realized the outlook was grim, but they also became determined to make every moment more meaningful.

“With terminal cancer, there is part of you that starts grieving from day one,” Swayze says. “And it wasn’t any easier when I would read papers or magazines that were supposedly reporting Patrick’s last words to me. But my husband handled it so beautifully, with a total lack of vanity. He knew what was important.

“I remember one big photo that came out, and the photographer had gone to where Patrick’s father and sister are buried and taken a picture with an arrow pointing to where Patrick would be. And then other publications would pick the most unflattering picture they could find to run. I mean, all of us take bad photos at one time or another, but when you are fighting pancreatic cancer, you’re certainly not at your best. It was horrible, and it hurt me a lot, but Patrick just let it slide.”

COMFORT AND SUPPORTniemi99

As Patrick began a variety of chemotherapy treatments, Lisa says that they found tremendous comfort in the support they received from family, friends and fans. She says that the response was one of the first silver linings she and Patrick experienced.

“The outpouring of love, generosity, prayers and care was beyond inspiring,” she recalls. “It truly restored my faith in humanity. People sent messages, hugs, all kinds of things, and they didn’t expect anything in return. The care and love was unconditional.”

Swayze continues to believe that the worldwide support played a role in Patrick living for 22 months after his stage four diagnosis. She said his spirit was strong and that the people who supported him were “angels sitting on his shoulders.” “He beat the odds so many times,” Swayze explains. “It had a lot to do with his personal character, but there were also a lot of miracles.”

BECOMING A CAREGIVER

As Patrick’s primary caregiver, Lisa Swayze found herself in a role that shifted the dynamic of the couple’s relationship. Admitting that they both were “very strong-minded individuals,” she says that they clashed more than a few times, but that they also grew even closer as they shared the many decisions that accompany cancer treatment.

“Like me, Patrick liked to do things his way, but when we entered this illness, it was like we took hands and just leapt,” Swayze says. “He knew I would do anything to make him better, and I felt honored that he entrusted his life to me. We started not wasting any moments with little stuff, and that was a very special gift that I hope I never forget.”

As the treatments progressed, Swayze found herself functioning as a health care professional, a household manager and a fierce protector when it came to guarding her husband’s privacy. Early on in the treatment process, when Patrick decided to continue to work on the television series The Beast, Lisa accompanied him to the set every day. She watched him become energized as he performed and admits to being a little nervous when he insisted on doing his own stunt work, although she didn’t try to dissuade him.

“When you are faced with a terminal illness, there is no time like the present to do what you want to do and be what youwant to be,” she says. “Patrick didn’t want to die; he always said he wanted us to be sitting together in our rocking chairs on our front porch in New Mexico. But the challenges and hardships are part of love, and one of us facing our mortality brought us together instantaneously. There was just an incredible amount of trust, care and love present.”

Caregivers of terminal patients often talk about the emotional toll that accompanies watching a loved one suffer. Swayze says that she was no different, feeling some days like “I’m not going to be able to handle this.” So she relied on a group of close friends as confidants and accepted help from Donny, Patrick’s brother.

“Going into the second year of Patrick’s illness, I was very, very exhausted,” Swayze explains. “And at that moment, Donny moved in with us and took over a lot of the caregiving duties. He gave me a lot of emotional support because I knew he loved and cared for his brother.

“When I talk with people now, I tell them that the best help I ever got was when people would call and say, ‘I’m thinking of you and I’m here if you need me,’” she continues. “And they wouldn’t expect a call back. Sometimes, the caregiver may just need to talk like everything is normal. Or they might need something like someone to go to the grocery store or do laundry. Just be willing to do whatever they need if you want to help.”

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In her book, Lisa shares the last moments of Patrick’s cancer journey with readers in frank detail. She talks about when she realized that she was the one responsible for deciding when it was time to “let him go,” and she details the often Herculean task of making it through each day after his death. It’s a brutally honest dialogue about what comes “after” for caregivers.

“After my husband died, I could’ve made a long list of things I thought I could have done differently,” Swayze says. “But looking back now, I know I did the best I could. I know without a doubt that Patrick knew I loved him and did my best.”

ADVICE FOR CAREGIVERS

When asked what recommendations she would give to others who find themselves in a caregiving role, Swayze says there are some things that help and others that simply must be endured.

“I tell people to get a good notebook first of all,” she explains. “Medical doctors and nurses have spent umpteen years learning about this stuff, and you’re learning everything about an illness in nanoseconds. As I learned and made notes, I found that I was able to help the doctors.

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“And you have to do the best you can at trying to take care of yourself,” Swayze continues. “Draw boundaries with your friends, and when they start pushing their own ideas, remind them that it’s better to say something like, ‘What you might do is this.’ A lot of caregivers describe something like post-traumatic stress when they’ve been helping someone fight a terminal disease.”

And when the caregiver is one half of a couple, Swayze encourages taking advantage of the time to grow closer.

“Patrick was a true hero throughout his illness; the very best of who he was came out,” she says. “He didn’t stiff-arm me, which can happen when people are afraid. It’s hard, but you have to not let fear get in the way and divide you. It’s the hardest journey that you will ever take, but if you can join hands and take the journey together, there are a lot of special things that can happen.”