Christine Fournier has many wonderful memories of Christmas spent with her beloved mother, Helen Winter LaCaze -- a generous, bright and fun woman, known affectionately as "Hels" to her family and friends. However, Fournier also has painful memories of Christmas holidays in later years, watching her mother's slow descent into Alzheimer's disease, where she went from being the vivacious host to a woman withdrawn.
"I remember one Christmas, a year or two after her diagnosis, when I took her to our family Christmas celebration," said Fournier, who lives in New Brighton. "My mother was not really communicating at that point and everyone was walking around her like she wasn't there."
A holiday that had once been joyous and filled with love became nonexistent not only for LaCaze, but for Fournier, who said one of her personal low points came on Christmas Eve, when her mother, in a care facility at the time, was unresponsive while Fournier, in tears, told her, "I miss sharing Christmas with you."
After her mother died, at age 78, Fournier began writing a memoir of her family's experience with the disease. "On the Sunny Side of the Street: An Alzheimer's Journey" (Beaver's Pond Press, $18.95) was published in 2002. (The book is available at Barnes & Noble, Amazon.com and at Bookcase in Wayzata.)
"My mother and I had such a fun relationship and that is an important part of our story, too. I wanted to write something with an uplifting feel," she said. "The reality of Alzheimer's is that you are really experiencing a living loss. Your loved one leaves you long before she finally leaves you."
Plenty of company
There are currently 5.4 million Americans living with Alzheimer's disease, 94,000 ages 65 and older in Minnesota alone, according to 2010 figures. While the struggles for individuals and caregivers occur daily, the holiday season can be especially difficult as family members try to find the best way to include and communicate with their loved one.
Sue Kuta of Oakdale and her sister Nancy Cunningham, who lives in La Grange, Ill., lost their 85-year old mother, Pat Kuta, to Alzheimer's in September. In the final months of her life, Sue Kuta said, a digital picture frame loaded with family photos became a way for family members to connect with Pat.
"She would nod as we would explain who was in each photo," said Sue, one of seven children. "I would sit with her and have a running monologue, talking about things we used to do together. It would help me remember all those good times."
Cunningham, who has a 13-year-old daughter, Claire, and a 12-year-old son, Luke, said that even though her mother "couldn't place" who her grandchildren were during their visits, Claire and Luke were understanding about their grandmother's situation. "We would talk about how Grandma's brain was different now, and I wanted them to know that if she didn't know who they were, it wasn't about them, but it was about her," Cunningham said. "They really never took it personally."
The Cunningham children enjoyed playing card games such as Rainbow Fish and bingo with their grandma, and even when she could no longer respond, Cunningham could tell that her mother enjoyed the interaction. Claire and Luke also spent time going through huge scrapbooks, assembled by Sue Kuta, and would talk to their grandmother about the people in the photos.
"One of the best memories I have is when the kids and I took Mom to the [Chicago] Botanic Garden," Cunningham said. "She was in a wheelchair at the time, but we were able to take her all around, and we just had such a nice day."
Re-telling the past
Cunningham also shared an experience she had toward the end of her mother's life that she believes was meaningful not only for her, but for her mom, as well.
"We were sitting together in the dining room at the care facility and another patient, a man, asked about my mom. I was holding her hand and I just started telling her story to him -- where she grew up in Iowa, things that happened when she was a young girl, stories about our family," Cunningham said. "And every so often, my mom would squeeze my hand. I was telling her story to someone else, but I really believe she understood that it was her story."
Life with someone who has Alzheimer's means there will be change, Fournier said, but also opportunity.
"We all know life is fragile," she said. "You have to try to celebrate each day. You have to make the best of it."
Julie Pfitzinger is a West St. Paul freelance writer.