Her name is Jeanne Marie. She has raised five children, romped with penguins in the Antarctic, and thrown up her hands for joy in the vast grandeur of Venice’s Piazzo san Marco. She appreciates the muted colors of the forest – greens and fawn-like tans. Dozens of people have called her friend, she loves to laugh, and every morning the sun creeps over the lake and spills into her living room.
Her name is Jeanne, and she has lived a story she can no longer recite.
“We’re not your typical hospice story,” states Jeanne’s husband, John, “but Jeanne has a typical Alzheimer’s story. She went through the typical stages – confusion, some wandering, and times when she got stubborn and decided she’d stop eating. At first we could manage with private duty services and the support of family. I was reluctant to call in additional help, but inevitably, Jeanne grew worse. This vibrant, beautiful woman went to 92 pounds in the space of weeks. Of course, as a physician I knew about hospice, but I wasn’t sure how it would fit our situation. Hospice is typically reserved for the terminally ill, and Alzheimer’s is an unpredictable disease. A patient will decline, then improve, and then stabilize before the next crisis.
I worried we might use up the hospice Medicare benefit and have no recourse when Jeanne’s health ultimately declined. For instance, she had a stroke a few years back and a serious infection in her blood stream. I was concerned that she’d have to leave hospice care if we decided to treat the infection. But we were able to call hospice back in once she came home.
John belongs to a local caregiver support group, organized through the Alzheimer’s Association. “We’re luckier than most,” he states with quiet confidence. “I’ve got some skills that other caregivers don’t, and I can share how we managed with the other men in my group. You know, they worked hard their whole lives, up in the mines or out in the woods. They’re kind of lost now that they’re the caregivers. I’ve grown pretty efficient, and I’m able to share with them how we managed. Most people call in hospice too late. They might not know what I’ve discovered: that hospice isn’t just about hands-on patient care. The hospice teams helped us plan for the long haul. They have such a caring and courteous approach.”
John relays the history of Jeanne’s illness in the calm and measured tones of a retired physician, laying out the facts in logical patterns a layman can understand. But ask John about his wife – what makes his Jeanne so special. His voice softens, and his face lights up as it must have in the first dizzy months of their 48-year love story. “We’re partners,” he states. “I worked for 43 years as a busy doctor 7 days a week, 24-hours a day, year-round. Jeanne raised the kids. We had a great life… we’re partners,” he repeats. “When we said our vows to each other, we didn’t just recite them.” John pauses for quiet emphasis, “We memorized them and made certain promises to one another.” John’s point is clear: His wife is home where she belongs.
“I hit on something that really helped Jeanne feel comfortable a few years back,” he continues. “Would you like to step in and visit? Let me show you…” He opens the door to the room the couple still shares. And there, covering every surface of the sun-filled room… is Jeanne’s life, laid out on every wall in photo after photo after photo.
She’s a pixie of a girl with a toothy big grin. A debutante with requisite pearls and a slender bride dressed in white. She’s laughing in the driveway to the couple’s camp, surrounded by her children and their children, too – marshmallows on the beach can’t be far behind. There she is, holding John’s hand and sharing a splashy drink at a warm-weather resort. And there’s the penguins… and the pigeons in the square, and there’s Jeanne, looking straight into the camera, with a warm smile that invites you into her generous world.
Her name is Jeanne Marie, and she’s lived a life worth living – a life still cherished. A life John won’t let her forget.