Alzheimer’s Disease: One Northwoods family’s story
Maggie Spiess is proof that angels really do exist.
This kind and gentle woman has been on a difficult and heart-wrenching journey since her mother, Barb, was diagnosed with Alzheimer’s disease more than three years ago. Since then, she has put her life on hold to fulfill a basic tenet-honor thy father and mother.
“My mom is my best friend and I will do anything to make her life more comfortable and easier,” she said. “My parents sacrificed a lot for me and my brothers and sisters. My mom and dad mean everything to me.”
This family’s Alzheimer’s journey started on Heart Lake in Conover about five years ago. That was when Maggie noticed her mother becoming more forgetful, and her father, Bob, bewildered with the changes his wife was going through. At that time Maggie was living in Oconomowoc, working as an assistant manager for an investment firm. Life was good. Her three sons, Jeremy, Anthony and Abrahm were flourishing, starting careers and families. But as time passed Bob’s calls became more frequent, and Maggie found herself driving to Northern Wisconsin to quell emergencies that were frightening.
Barb and Bob met in high school, and after marrying Bob became a machinist at Allis Chambers in West Allis. Barb worked as a tour guide for the company and then eventually for Swiss Colony for 12 years. The couple built their cottage on Heart Lake in 1957, longing to share the beauty of the Northwoods with their five children of which Maggie is the youngest. The family spent many weekends at their get away, in addition to long stretches during the summer months. “We all loved coming up north,” said Maggie. “Our entire family really found peace here.”
After Bob retired more than 20 years ago, the couple moved into their little cabin permanently, eventually building a year round home. And then, about five years ago, the frightening phone calls began. “Dad would call saying mom was acting confused,” Maggie said. “And then one time mom called and told me there was a strange man in the house holding her hostage. She had periods when she wouldn’t recognize my father.”
In 2009 Maggie realized that her parents needed daily care, and put her life on hold to come to Northern Wisconsin permanently. She moved into the origin cabin which had no running water and was heated by a small wood stove. “I really loved it,” said Maggie. “I learned how to simplify things and I felt better being near my parents.” The family settled into a routine, sharing coffee every morning and meals throughout the day. Then one night Barb wandered away. “It was so scary,” said Maggie. “We looked everywhere even calling the Vilas County Sheriff’s Department.”
There had been a power outage and Maggie, flashlight in hand, searched every where with her heart in her throat as she scanned the lake and deep into the woods. “Then I came in and found mom under the dining room table,” she said. “It was the only place I hadn’t looked.”
Maggie had Barb tested and the diagnosis was grim-Alzheimer’s Disease. “I sort of knew it all along but to hear it was devastating,” said Maggie. But this loving daughter was determined to keep her parents in their own surroundings and did everything she could to make them comfortable and happy.
While her siblings were busy with their own lives, Maggie had a great support system with help from the Vilas County Sheriff’s Department, including Deputy Louise Horn who would visit the couple periodically; neighbors Joe and Mary Jo Maza and Rick and Monica Stefonik; the congregation at St. Albert’s Catholic Church; social worker Kelly Laco and Maggie’s boyfriend Dave Wuytek. All these people rallied around the family to help them along this difficult journey. “I don’t know what I would have done without these friends,” said Maggie. “They gave my parents and myself so much support.”
Then Maggie’s sister had a medical emergency and when Maggie came to her aid she hired registered nurse Sue Chobanov, to care for Barb and Bob while she was away. It was during this time that Maggie realized the toll of 24/7 care giving. “My blood pressure was sky high, I wasn’t eating healthy and I wasn’t sleeping very well,” she said.
Maggie realized the importance of taking a break and appealed to the state’s Medicaid program to help pay for a nurse to come in a few hours a week on a regular basis. She was refused this cost and appealed it two times, even before a judge. “I would really like the State of Wisconsin to reconsider this kind of care,” she said. “It would have actually saved the state money by keeping my parents in their own home.”
As the weeks and months passed Barb’s condition worsened. She wandered away more which was extremely scary for both Bob and Maggie. She became more confused about who Bob was and every so often her demeanor turned combative. Last year Maggie made the heart wrenching decision to put her mother in a nursing home. She chose Taylor Park in Rhinelander. “It was the hardest decision I have ever made in my life,” she said with tears in her eyes. “But I could not have found a better place. Everyone here is just wonderful. This area is so lucky to have a facility like this.” However, Bob was distraught without his “Barbie” and soon the father and daughter made another difficult decision. Bob would move in with her. Today the couple share a room. “I just want to be with my girl,” said Bob.
As Maggie has traveled this journey she knows how devastating a disease like Alzheimer’s can be and is determined to help researchers find a cure. One day a few weeks ago she saw a poster on the lobby wall at Taylor Park advertising the Northwoods Area Walk to End Alzheimer’s which will be held next Saturday, Sept. 15 at the Rouman Cinema in Rhinelander. “I immediately wanted to know more,” she said. In fact, she has gotten several sponsors, including the Vilas County Sheriff’s Department and Headwaters State Bank in Land O’ Lakes. In addition, her three sons and daughters-in-law, Christy, Jill and Tracie, will also be participating. Even her two step-children will walk.
“I’m really looking forward to having my family participate in this fundraiser and being all together,” said Maggie. “But more importantly it’s so crucial that a cure is found and that money is raised to support people who are traveling this difficult journey. I would give anything to find a cure for this disease that has affected my mother, and family, like this. I would do anything to have my mom back again.”
Editor’s note: The Northwoods Area Walk to End Alzheimer’s will be Saturday, Sept. 15, with registration starting at 9 a.m., at the Rouman Cinema, 1205 Lincoln St. in Rhinelander. The walk begins at 10 a.m. and includes one that is 1.5 miles long and another that is 3 miles long. Registration can be done online anytime prior to the Walk, or participants can register on Sept. 15. For more information about this fundraiser, call (715) 362-7779, or visit act.alz.org/Rhinelander-wi.