When Judye Carlsen-Reiland, 69, picks up a pen, a paintbrush or a piece of cloth yet to be sewn into an artistic creation, it helps her mind escape.
Carlsen-Reiland was diagnosed in 2007 with idiopathic pulmonary fibrosis, a disease of unknown cause that damages lung tissue. For some people, progress of the disease is quite rapid. For others, it's relatively slow.
Carlsen-Reiland and her husband, Bob, are never sure when she'll experience an exacerbation, but they are in the process of coming to terms with the prognosis.
She has become a patient in the Mayo Clinic Hospice program, a service for terminally ill persons who live in Rochester and parts of the surrounding region.
Carlsen-Reiland thinks everybody should know about the service.
"Hospice has been a godsend," she said.
Emphasis on comfort
Carlsen-Reiland lived for several years without much impact from the lung fibrosis, starting oxygen therapy only three years ago or so. But, this year, she's had setbacks, and a lung transplant, which she considered, offered a poor prognosis for surviving the initial surgery.
She went to her pulmonary doctor, and he asked if she and her husband had heard of palliative care, a step that emphasizes patient comfort and quality of life.
It wasn't long before Carlsen-Reiland chose to enter the next step — hospice care, which provides services from a multi-disciplinary team of doctors, nurses, pharmacists, social workers and others. When she has a question or a need, the team comes up with a solution.
For example, multiple medications became hard for Carlsen-Reiland to juggle. So the team came up with ways to simplify the process so she gets the medications she needs without worrying if she has double dosed — or forgotten a dose.
"I don't know where we'd be without hospice. Today, medically, I'm doing really well."
Emotionally, though, "I kind of have meltdowns," Carlsen-Reiland said.
That's when the hospice team can be of great benefit to her and her husband.
Team members have coached Bob Reiland that it's important for him not to feel like he needs to stay at home all the time. Rather, it's important for family caregivers to get out of the house and stay healthy themselves.
Time away gives Bob renewed energy, allowing the pair to continue doing many things they've long enjoyed during their 15 years of marriage.
Recently, for example, they got out their car, put the top down and went for a joy ride, stopping for a nice lunch.
"We still do stuff. It just takes a little longer," Reiland said. Gone are the days when they used to fly, because Carlsen-Reiland's lungs can no longer handle that.
Her portable oxygen supply must be watched to make sure there's plenty to get her back home without running out. Reiland keeps close tabs on how much she has left.
"If I run out of air, I'm in big trouble," Carlsen-Reiland said. She has been guided by hospice staff and volunteers.
"Hospice has been here, or there. Wherever I've need them or whenever I've needed them," she said. If needed, she can give them a call.
"It eliminates that total helpless feeling," Bob Reiland said.
Sometimes, Carlsen-Reiland said, a person in hospice care just needs some reassurance from an understanding voice.
She has used art and poetry to help guide her way during the hospice experience, writing, "Hospice is a program for living not dying. It helps me deal with pain when it becomes too much to bear. It allows me to participate in the happy times, the birthdays, the weddings, the just-glad-to-be-alive days…"
Carlsen-Reiland said she has many blessings in her life, including her husband, his kids and her kids "and I want that to last as long as it can."
Together, Carlsen-Reiland and her husband celebrate sobriety for 34 years for him and 31 years of Al-Anon activity for her.
They host an annual Wisconsin 12-step sobriety retreat. This year, she has made 33 pillows, one for each participant who signed up.
"We make little fun things for them, to have in their room and have a little reminder of the retreat," she said. She has long sprinkled that type of art into the world. But it has especially helped in recent months.
"All I know is that hospice gives me a lot of hope," she said. She might not survive "in the long run," but hopes to "have a quality of life that is meaningful to me — and my loved ones" during whatever amount of time remains.