Despite differences, young people with grave illness look very much like those who are decades older as they make life's final journey, Sheetz says, in their desire to protect their family members from pain. "It's very poignant."
Young deaths quite often come without warning or illness.
Amy Hollinger will tell you up front that from the moment her husband, Carl, was in a serious car crash, nothing went quite right. They were both in their 30s. They'd talked about having "the talk" — the one where you figure out what should happen if one of you were to be seriously injured or ill — but they'd really said it jokingly. Nothing was going to happen to them, they figured. It would be unthinkable in their little family, which included a son and daughter, 3 and 6.
Seated by him in the intensive care unit, as an earnest young doctor tried to explain what was happening to his brutalized body, she had a hard time even taking in the words. Panic washed over her in waves, she remembers. When a day and a half later the doctors explained he had no brain activity — that he was, except for technology, dead — and she needed to decide about removing life support, she was simply overwhelmed.
And guilty, she says four years later. She should have known what he would have wanted. She didn't.
While the details of dying depend on the family and the illness or injury itself, experts agree that being as pain- and symptom-free as possible are goals of palliative care and most patients want that. The where, however, varies. While most adults say they'd like to die at home, surrounded by friends and family, that's not a universal desire. With children, for some families, "having the child at home is incomprehensible, while others want it," Sheetz says. "I think another definition of a good death is that all the decision makers have arrived at a place of peace in their hearts. Not that they feel good about death, but that they have agreed; it's been talked about and processed and happens in locations that work in the family, with the support they need."
When Megan, now 30, got her diagnosis, she and her husband "didn't go there. We didn't talk about death. I was going to beat it." And for a while, she really did. It was stage 3 then and she had surgeries and chemo and radiation, and the disease retreated.
She'd gotten a degree in fashion design, her first love. But since she had no urge to live in New York or Los Angeles, she decided while having chemo she would be a nurse. While in remission, she did the prerequisites and had a perfect grade point average. She was on the waiting list when she got the call that the cancer was back. "It kind of (ticks) me off that I finally knew what I wanted to be," she says fiercely, then she smiles.
She likes talking about the best way to live and how she should feel. She "can look at it maturely," she says. But when someone says "live your life to the fullest," she's puzzled. "I can't figure out what that means." She's slowly letting go of the idea she can be anything she wants to be. She's substituting things she wants to get done, in case.
She plans to write Makena a letter for when she graduates. And when she marries. She'd like to make a video of herself reading Dr. Seuss' "Oh, the Places You'll Go!" She wants Makena to embrace that theme, too.
She's been teaching her young brother-in-law and one of his pals how to sew. Megan bought her own first sewing machine with pennies and dimes she'd saved when she was 7. That's one of her passions.
She was heartsick that she might have passed the breast cancer gene onto Makena. Testing shows she hasn't. The day they got the results back, she wrapped her arms around her little girl and hugged her tight, laughing and crying and kissing and praising as she stroked the toddler's silky blonde hair. "Good job, Makena," she cooed. "You did so good."
She's guessing what will happen and thinks she'll get sick sooner, not later. "If I say that, they think I've given up. I haven't."
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