Hospice offers ‘gift of a day’

George Schweigert had dreamed of getting back on his roller skates for the last 11 years.

Roller skating was seemingly impossible after doctors diagnosed Schweigert’s Parkinson’s disease nine years ago, and after he suffered a series of unrelated illnesses.

When Schweigert began hospice care last month, though, his care team began to plan his return to the rink.

“He said he has always wanted to skate one more time,” said Dorethy Schweigert, his wife.

Schweigert’s family and friends will gather Tuesday for his “gift of a day,” which will be a skating party in his honor.

Each patient since 2004 at Crossroads Hospice Care in Kansas City, Mo., has been able to develop his or her “gift of a day.” It’s a chance for hospice workers and patients to celebrate life, said Sherri Bickley, director of social services.

“I think hospice care has a reputation of being the grim reaper in the health care field,” Bickley said. “Impending death can rob people of hope. This puts the focus on their life and that it can be good.”

Each patient is asked when first put into care what has been important to them in their lives. What would their perfect day be? Then their team of five to seven hospice care workers will work to make it happen for them.

For George Schweigert, the answer of what his perfect day would be came easy. He started roller-skating at the age of 16. He was a roller-skater when his wife Dorethy met him in 1964. He owned the Rainbow Roller Rink for 32 years in Monmouth, Ill., complete with a maplewood floor.

“He was a good (roller) dancer,” Dorethy Schweigert said. “He waltzed, no jumps.”

A gift of a day does not have to involve grand gestures or great expense, Bickley said. One patient, who lived with Alzheimers, had a daughter who mentioned she loved puppies. Bickley, who lives in Olathe, arranged for that patient to be able to interact with that puppy before she died. The puppy licked the woman’s face and she responded with a smile.

“It doesn’t have to be a symphony moment, just a moment of joy,” Bickley said. “We’re not going to whisk everyone to Hawaii, but we can give them grass skirts and a party for a couple of hours.”

Currently Dorethy Schweigert lives at home, two hours away from George. He is a patient in a Veteran Affair hospital in Missouri. The distance, along with the cost of gasoline has prevented her from seeing him more than once a week. But, she’s had his custom-made roller-skates repolished. She’s invited their children to travel home for the skating party. The care from hospice workers has helped them focus on the happy day to come, not his illness or the separation they feel right now, Dorethy Schweigert said.

“I told (his caretakers), ‘you know he’ll want to stand up,’” Dorethy Schweigert said. “They said ‘we’ll help him no matter how many people it takes.’ I think it’s wonderful. He’s been out of the rink for years He’s been real happy over the last few weeks.”

The gift of a day has assisted family members in the grief process, Bickley said. Many times family members focus on the daily care of the patient. This allows them to discuss memories, joy and the life of the family member, Bickley said.

“Because we ask the family members to help in the planning it sets something hopeful to look forward to,” Bickley said. “They can move forward to reach that goal.”

One criteria is that the day must be patient-driven in the way it is planned. It’s not about what a certain family member wants, or what a physician wants. The personal focus, is part of an even larger paradigm shift, to make hospice not only about pain medications and comfort level but about celebrating the person, Bickley said.

“Hospice care is becoming more individualized,” Bickley said. “I’d say the norm 20 years ago with hospice was to put you in a bed and wait for (death) to happen. We’re not in denial- every patient knows what’s coming. But, there’s no reason for them to focus on that only.”

While it may not be called “gift of a day,” personalized care has always been a priority of Hospice of Olathe Medical Center since it opened in 1983, Charlene Shibel, director, said. Patients have created scrapbooks to leave for family members. Hospice caretakers have worked with United States Embassies to bring family members over to the United States for a final visit. They’ve found a way to take care of patient utility bills for patients.

Such individualized care is assessed from day one, and sometimes before a patient officially enters hospice, Shibel, said.

“We’ve found helping take care of the environment around them brings more comfort,” Shibel said. “It is absolutely a part of our culture.”