Caring Stories

The things that are most important to us can be the people (or pets) in our lives, special items, experiences or faith. For people in our hospice program at U.P. Home Health & Hospice, the things that can promote the best sense of peace and enjoyment are what we hope to provide. Rosemary’s story demonstrates just that, and it also shows how wonderful our community really is.

Rosemary recently needed to move from her home into an assisted living facility after developing a condition that made staying at home no longer possible, and subsequently enrolled in hospice. Her biggest anxiety in moving was leaving her rose garden behind. Rosemary and her late husband had spent 15 years together creating and tending this garden that produced beautiful flowers, particularly roses. This garden was their pride and joy. After his passing she felt that this garden was something that reflected their love, and the beauty of the roses was a constant reminder of the happy life they led together. Although there is a small rose garden at her new home, she very much missed the garden that she and her husband created and enjoyed. During a visit with hospice staff, she had indicated that she would have liked to have a painting that represented the garden that she could view and reflect upon. She didn’t want a photograph, a painting is less literal and art can help provoke feelings more than photographs for her. Several watercolor painters were discussed, and JoAnn Shelby was approached to create an image of the garden for her. Agreeing to take on the commission, which she did at much less of a charge than she would have normally done, the painting was created and matted. Mark Hamari of Marquette Wallpaper & Paint had agreed to do the framing at cost or less, and upon receipt of the painting provided the custom framing as a donation.

Immediately following the completion of the framing, Rosemary received the painting and it now hangs on her wall where she can gaze upon at any time. Hospice is about living life to its fullest, physically, mentally and spiritually. With this gift from the U.P. Hospice Foundation and members of our community, Rosemary is able reflect upon her life with her husband – including all the happy memories they had of the garden and of the life that they built together.

Since the time she was a little girl, Molly told her Great-Grandmother, Rose, that when she got married, Rose would be the Matron of Honor in her wedding and Rose happily promised to be there. This promise recently came true with a little help from the U.P. Hospice Foundation’s Make-a-Memory program and the power of technology.

Rose is currently in the care of U.P. Hospice and wasn’t going to be able to make the trip to California to celebrate the big day. When we learned of her Great-Granddaughter’s wedding and the promise Rose had made to her when she was just a little girl, we stepped in to make a memory come true!

With a little help from our Memory Maker’s Team and Rose’s family, we were able to setup a local wedding party for her and her friends while she attended the wedding “virtually” via Skype and participated as the Matron of Honor. Like any wedding, Rose wore a gorgeous lacy dress that had all the final touches of jewelry and was complimented by a stunning bouquet that matched the rest of the wedding party. Through the use of an iPad, Rose was walked down the aisle (which was a beautiful California beach) and participated in the entire wedding ceremony. The celebration continued in Marquette with hors d’oeuvres and sweet treats from Coco’s and a little champagne!

An Obama Fan Gets Her Wish!

Another Family in Hospice Care Gets One of Their Dreams to Come True.

She followed Obama right from the start and was an adamant supporter right up to his election. When she found out he was coming to Marquette it seemed almost impossible to believe at first! We knew how politically engaged she was. It was almost the only thing she talked about during those first months of Obama's presidency. Our Make-a-Memory team went into action immediately with the news of his imminent arrival. We called various community groups to advocate for a pair of tickets. At first it looked as if the tickets would just be too tough to find. We called the White House directly and explained our story. They too said they would try but the protocol for ticket dispersal was very formal and decided before the President's arrival was ever announced.

We didn't give up so easily. We kept calling back and following up and checking if there was anything else we could do. Tenacity won the day! Our political fan and her daughter were not only able to attend the event but they were less than 100 feet from the President. She hung on every word throughout the President's speech. She later stated "This is one of the best days of my life..."

We save and celebrate the extraordinary – holidays, birthdays, an anniversary or graduation. But the ordinary, everyday things, made up of small moments, like a run to the store for groceries, a phone call from a friend, are not notable until something goes awry. A missed turn, the confusion on a loved one’s face, a misplaced word or item. Alzheimer’s is a disease that robs a family of the ordinary moments.

It was like that for this Marquette family. Fred, a retired Phys. Ed teacher in Marquette; Charlotte, his wife of 54 years; 13 grandkids, 2 great-grandchildren and 5 adult children, including Bobby – their youngest, who will celebrate his 40th birthday soon, a birthday no one thought he’d see when he was diagnosed as a baby with Down’s Syndrome.

Bobby is still Charlotte’s baby. You can see it in her eyes, even if she can’t reach out anymore, even if the words don’t come. Alzheimer’s has robbed this family of so much, but not their love and caring. “My kids are great,” Fred affirms. “They call me all the time to hear how Bobby is doing, that their Mom is okay, and that I’m not overdoing it. After Charlotte was first diagnosed, I was kinda lost. She is a wonderful wife and mother - the one who made the house a home. I didn’t know anything about cooking or shopping or paying the bills. When she got sick, Bobby and I both lost 15 pounds in the first 18 months! But it was one of those things where you don’t know how much you’re really doing until help arrives.”

That help came when Fred started attending the local Alzheimer’s support group for caregiver husbands. “They told me I needed to take care of myself, too. They told me to get help. I wasn’t too sure I wanted strangers coming into the house, but when the Doc (John English) told me about the respite caregivers coming to his home I decided to give them a call. They help with cooking, cleaning and laundry and also allow me to run errands and go to appointments while they’re here. I used to run to the store quick for milk, but my kids would tell me I couldn’t do that, that it was like leaving two young kids home alone.

Last summer U.P. Home Health and Hospice started coming too. At first, a therapist came out to teach Fred how to help Charlotte walk and to get her into and out of bed. Eventually, nurses, social workers, and home care aides became involved to help with Charlotte’s care. Volunteers arrive every Monday so Fred can go to the senior swim at the university pool. And more recently, Gala, the physical therapist, is working with Bobby to re-build his strength after a serious bout of pneumonia. The nurses are all angels in Fred’s eyes. “They have all been very helpful and I don’t know how I could do all this without their help. I am so thankful. Charlotte and Bobby just love having the same people coming week after week. They’re taking such good care of us, our kids aren’t worried anymore.”

And neither is Fred. “There’s nothing so special about us,” he protests. “There’s Bobby, sure – but you know, we are so lucky to have him. I think Bobby made us all better people.” And then Fred glances at Charlotte in her chair by the fireplace. His eyes and his voice both soften. “She understands me,” he says quietly, “even if she can’t speak. Bobby’s still her special one. She always said God gave us Bobby as the one who’d stay. And she was right!”

Ordinary families are made up of countless everyday acts of kindness - the kind of caring that U.P. Home Health and Hospice supports and nurtures. Like the way friends drop off cookies for Fred to share, and the way the kids telephone their dad to check up on Bobby, and to make sure that Charlotte is okay. And the way Bobby always says “Goodnight” until his mom gives him an answer. Ordinary family. Extraordinary lives.

The first thing anyone will tell you about me is this: “That Jack – he’s a lot of fun. Always ready with a joke. Always laughing.” And I guess it’s true. I’ve always felt that given a choice between complaining and laughing, humor wins every time. So, you’ve got to understand that after my surgery, I was prepared to use humor to my advantage. But there I was, day five, back in the peace and comfort of my own home… and stuck in the bathtub. Too weak to lift myself out, and too embarrassed to call my wife for help. Suddenly, my cancer wasn’t so funny anymore. I’d expected to feel sick. I could tolerate the hair loss and the weight loss, but the loss of dignity? That was hard to handle. Even worse was the look on my Mary’s face. She tried to cover up, but after fifty years of marriage, her face is pretty easy to read: she was worried, scared and bone-tired. How would we manage if things got worse? Like I said: not so funny.

Thank goodness our neighbor recommended Home Health. We called our doctor and within an hour, the nurse came right to our door. That was the first good thing. She set us up with a plan that included regular nursing care, some physical therapy to strengthen my muscles, and home health aides to help with what she called “ADLs” or, “activities of daily living.” (For you rookies, that means help with things like getting in and out of the bath, shaving, and keeping bed linens fresh.) That was the second good thing. But the third, best thing? They sent Sandy.

How to describe the most unlikely angel I’ve ever met? Tall, big-boned, raspy outdoor voice, and the kind of well-worn hands that told me she had that strong, U.P. work ethic. To be honest, I was a little intimidated at first, but I’ll tell you, Sandy’s encouraging attitude erased any embarrassment I might have felt as she helped me with my bath. On that very first day, her true kindness shone through. But the day I actually knew she was my angel? That was the day she walked in and said, “So Jack… did you hear the one about Eino and Toivo? See, they’re out on a sheet of ice, fishing poles ready and they hear this loud voice…”

From that day on, every visit started with a little friendly competition, each of us trying to out-joke the other. I hardly noticed she was actually doing her job! It might seem like small stuff to you, but to me Sandy’s humor pointed out an important discovery: When I first got diagnosed with cancer, people changed. I’d be my usual joking self, but they’d have a kind of funny half-grin and sometimes, a quick excuse to wrap the visit up. It was like somehow I wasn’t Jack anymore. Instead, I was “Jack-who-has-cancer-poor guy.” But Sandy, and all the others we met, never forgot that underneath the illness there’s a real person, with a real life that’s still being lived, despite its new limitations. And that’s the fourth good thing: Underneath the cancer, there’s still Jack.

Now, let me tell you the one about the moose, the porcupine, and the Yooper….”

This is a love story told in an unconventional setting – hospice care

You know this story: John meets Ginnie, Ginnie likes John, they make a few plans. Then Ginnie moves away, John moves on, 32 years pass, and they’re reunited through the miracle of Google. (Did I mention it’s a thoroughly modern love story?) John smiles with irony as he recalls the decision to pull up roots and move north from Missouri to claim his bride: “She had only one condition – I had to give up smoking.” 10 months later came John’s devastating diagnosis: stage-4 lung cancer.

John’s a fighter. Following surgery, he completed 14 months of continuous chemo-therapy, coping with an allergic reaction to one of the trial drugs. John recalls feeling steadily weaker, less in control. “I used to have two or three good days in between my infusions. Then it was more like one, and then, I realized there were no more good days. In fact, I was probably a good two days behind even thinking about a good day. I decided to stop treatment.

Like most people, we thought of hospice as a way to manage my dying. We wanted to make some plans. Our pastor recommended U.P. Hospice, and within an hour of our first call, the nurse came to our home. We quickly discovered that a well-run hospice is focused on living, and living well, with the knowledge of a life-threatening illness. We learned a few other things along the way:

We learned that as my illness advances or retreats, we can move smoothly in and out of hospice care. For instance, if I want to resume my chemo treatments, I can leave the hospice service and switch back to regular home health, keeping the same nurses. This is a great advantage with U.P. Home Health and Hospice.

We learned that hospice is efficient! It keeps us out of the busy emergency rooms and exhausting hospital admissions. Hospice cuts through the red tape and keeps us in touch with the experts 24 hours a day, even on the weekends. Our doctors truly want to help, but hospice care is not their specialty. Hospice is all that U.P. Hospice does. We can ask them anything. Their team is one of the most impressive combinations of professionalism and caring we’ve ever encountered, anywhere"

John pauses, and we all listen for a minute to the quiet ticking of the clock. “Our goals these days have sharpened. I want to regain strength and hopefully try more treatment. We know the hospice team will be there when it’s time to re-evaluate and move on to the next stage of my illness. In the meantime, our goal is to stay in love as long as we can! And Hospice even helped us with that through their own version of Make-a-Wish. Just last week, they sent us out with a photographer to re-capture our wedding scene at the river by the Tourist Park falls. Soon, they’ll re-build the dam and the water will rise. You won’t even know the river was there.” John’s smile lingers, and Ginnie reaches out to touch his hand. “We can’t wait to see the pictures.” (See, we told you it’s a love story.)

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.