“The best way to describe Mom’s attitude toward life is a line from a John Denver song: ‘Joy was the thing she was raised on; love was just the way to live and die,’” Sue Kluegel said about her mother, Georgia, who recently celebrated her 100th birthday. “Everybody who knows her talks about her sense of humor, her positive energy, and her ability to accept change—including death.”
As recently as last fall, Georgia was walking up to four miles a day and practicing her hula hoop down in the garage—even after a bout of COVID-19 and a spontaneous hip fracture that required a total hip replacement. “She’s had some health scares, but she always snaps back,” Sue said. But then Georgia started having tremors, the result of several mini strokes, and by December her heart was failing. This formerly active, independent woman had lost the use of her arms and legs. “We got her to the hospital, but she deteriorated so quickly that the doctors didn’t think she’d make it to Christmas.” The hospital social worker recommended a hospice provider in Stillwater.
Sue had heard about Lifespark Hospice from her neighbor who’d used them when her mother was dying. “My friend couldn’t say enough good things about Lifespark and how wonderful Jen [Jennifer Blazek, BSN, RN, Lifespark Hospice Administrator] was with her mom,” Sue said. “I asked if we could use Lifespark instead.”
Because of the pandemic, none of the local nursing homes or hospice centers could take Georgia right away, so Lifespark moved her back to her apartment, brought in medical equipment and a hospital bed, and took over her medications. “I’d been having a hard time managing all of Mom’s meds, so it was huge a relief to turn this over to them,” Sue said. Rather than continue to treat Georgia’s chronic conditions, Lifespark discontinued or reduced all her medications and focused instead on keeping her comfortable, adding something for pain and diarrhea as needed, compression stockings for the edema, among other comfort measures.
Sue immediately felt that she, her sister, and their mother were part of the care team, which included Jen Blazek; Rachel Kroeger, RN, case manager; Rev. Shaunna Heule, hospice chaplain; Bridget Jonas, MSW, medical social worker; and Michelle Gould and Felicia Ballin, certified nursing assistants. “They’re all part of this compassionate, knowledgeable, thoughtful team, helping us and supporting us through a difficult time,” Sue said. “They respect the dying process, and it shows.”
Home health enters the mix
For the next three weeks, Sue and her sister took care of their mother from 8:00 AM to 8:00 PM, with daily visits from the hospice team. To give the daughters a needed break, they hired Lifespark Community Home Care (private-pay nursing and caregiving) to care for Georgia at night. “We would literally watch the clock those last 15 minutes, counting down the seconds until those wonderful aides showed up,” Sue said. “Private-pay nursing care isn’t cheap, but it was worth every penny to us. If it hadn’t been for Lifespark, we would have lost our minds!”
When a bed opened up at a nearby hospice house, Lifespark moved Georgia again. But it wasn’t a good fit. “Mom had improved to the point where she wasn’t actively dying,” Sue said. By then, Georgia had taught herself to use her left arm to feed herself. Not only that, but she was regularly beating her daughters at cribbage—and moving the pegs herself. Within a week, the family found a room at a long-term care facility that offered a more active environment, so the hospice team moved her again.
Compassionate visits during quarantine
As expected, Georgia entered the required two-week quarantine, but it nearly broke her spirit. Due to COVID restrictions, Sue would stand outside her mom’s window every day and wave to her. “One day—this was probably the hardest day of my life—I was looking through the window at my loving, positive mother who always accepted change, and I could see she was falling apart,” Sue said. “And there was nothing I could do—I couldn’t hug her or speak to her or comfort her.” She called Jen.
Jen dropped everything, Sue said, and immediately set up a meeting with the Lifespark team and invited the nursing home director and her staff to talk about how they could make this a better experience for Georgia. “The director decided to give me permission to have a compassionate care visit with Mom every day for two hours in her room,” Sue said. “I have to wear goggles and a mask, but these daily visits have made a huge difference for all of us.”
Georgia was still going to be in quarantine on her 100th birthday, so Jen suggested that Sue’s daughter bring her kids—Georgia’s beloved great-grandchildren—to the nursing home to build a snowman outside her window. “It absolutely made Mom’s day!” Sue said, adding that the children were so happy to see Georgie, the Muffin Maker—their pet name for her. To cap off the celebration, Lifespark team members showed up outside Georgia’s window with balloons, signs, and a speaker for her room so she could hear them sing Happy Birthday.
Insights, tools, and support
In spite of good days, Georgia’s sunny personality would disappear at times. After one of her mom’s angry outbursts, Sue called Jen to share what happened. “Jen and Bridget helped me understand what’s going on with Mom and why, and what I can do to help,” Sue said. “They explained that she had reached the acceptance stage of the death process, but now, because she’s still alive, she’s back at the angry stage.” Another insight was realizing how frustrating it was for her formerly active, strong, and independent mother who could no longer walk or take care of herself.
As for dealing with Georgia’s crankiness, Jen suggested that Sue set a timer for five minutes and let her mom complain until the alarm goes off. After three minutes, Georgia was ready to play cribbage.
“One of the many things I love about Lifespark is that they always know exactly how to support me—even when I don’t realize that’s what I need,” she said. As for Georgia’s experience, “Mom wanted me to say how grateful she is for their support—for her and for those she loves. She’s not afraid of dying; she’s ready. However many days are left, she knows they’ll be lived in comfort and dignity.”