Her days are spent living in her own silent world, recognizing no one; Alzheimer’s has robbed Helen Leaf Haun of her ability to speak, and she no longer knows her own children. In her early 70s, Haun enjoyed volunteering for the Winona Health Auxiliary, but as she approached her mid-seventies she started forgetting things. Little things at first, then larger things, like where she was going. Her family wondered what was happening.
Helen Leaf Haun, seated, second from left, is pictured with her family before she was diagnosed with Alzheimer's Disease.
Helen Leaf Haun's family has been named the Honorary Host Family for the 2013 Winona Walk to End Alzheimer's, and will be participating in the annual event to raise awareness of the devastation of the disease and to raise funds for care, support and research.
“They did tests and said she’s got dementia. At her stage they didn’t do the full brain scan to confirm that it was Alzheimer’s; it just wasn’t worth it,” said Bob Leaf, one of Helen’s children. “It affects everybody differently. We didn’t think she’d last five years, and now we’re on 15 plus.”
Forgetfulness is a main indicator of Alzheimer’s, but it has a much more narrow definition. “It’s not when you forget where you park your car; it’s when you forget whether you even drove your car,” Leaf explained. In the earlier stages, many Alzheimer’s patients tend to keep Post-it notes everywhere, he added. “I have a hair appointment tomorrow. There will be five of those, because you forgot you wrote one. So there will be one by the phone, one on the fridge, one by the door; it’s a lot of repetition.”
Although the diagnosis was a struggle for Haun’s family, her eight children — seven boys and one girl — realized how fortunate it was that everyone still lives in the area. “There are seven of us right in town, and my sister is just an hour away,” Leaf explained.
Initially, the family had to convince Haun to move into an assisted living facility, telling her that her husband, Ray Haun, needed the extra help because he had broken his hip, Leaf noted. Haun spent little time at Callista Court as her symptoms quickly progressed, and were too hard to handle. Haun then spent time at Adith Miller Manor, before moving on to St. Anne Extended Healthcare, where she currently resides. “She’s basically bedridden and chair-ridden. She has no control, needs to be fed, needs to be bathed, needs to be taken to the toilet; she’s just totally gone,” Leaf explained.
Haun’s time in the three facilities equate to what Leaf has labeled the three stages of Alzheimer’s. At Callista Court, Haun was still in the stage of forgetfulness, but she moved to Adith Miller Manor, when her struggles increased. Leaf explained that the visits during her stay at Adith Miller Manor were the hardest to deal with. When her family prepared to leave after visits she would say, “Take me home, I’m confused, why am I here? Who are these people?” “It’s so hard for you to walk away, you’ll cry, it’s gut wrenching, but the staff will tell you, oh, two minutes after you’re gone she doesn’t even remember you were here.”
Widowed in 1969, Haun was left with children ranging in age from 2 to 22. She raised eight children as a single mother for the next 14 years, before remarrying. Leaf watched his mother go from a strong, independent woman to a fragile woman unable, for the last five years, to recognize him. Leaf likens visits to his mother to visiting an infant. She has no recognition of anybody or anything, she cannot feed, bathe, or us the toilet by herself.
“The caregivers are the victims. My mother doesn’t know up from down or left from right,” Leaf said. Alzheimer’s patients lose the functionality of their brain as the disease progresses. “We don’t like to see our parents or our relatives diminish,” Leaf noted. Her husband, Ray, would struggle trying to understand what was happening to his wife. “It’s not like cancer, where they’re the real victim. Alzheimer's patients become so far gone that they don’t know anything, but to sit and watch it is devastating. It is very, very hard,” Leaf explained. “There are people doing this at home with 70-year-old spouses, who are wrestling with this all day long.”
The Walk to End Alzheimer’s is all about awareness of the disease. Leaf compares the surge in Alzheimer’s patients to that of the HIV/AIDS virus in the 1980s and 1990s. “AIDS was an epidemic. We thought it was going to ruin the United States, until they focused on it and created these cocktails of drugs.” Leaf is concerned that as the age of the population increases and baby boomers get older, the study of Alzheimer’s needs to increase. “I think it’s going to overwhelm us if we don’t get some focus on it.”
Leaf also noted how lucky the family has been in living in an area that has places that can adequately accommodate his mother’s needs. “Winona is very fortunate to have Callista Court, Adith Miller Manor, and St. Anne."
Haun’s children believe that awareness is the best way to fight this disease. “Her story is no more unique than anybody else’s; it’s a community of Alzheimer’s patients and their caregivers,” Leaf added. “It’s very similar for everybody.”
To sign up for the Walk to End Alzheimer’s visit http://www.alz.org/walk or call (507)-289-3950. The walk will take place on Saturday, September 28, at the Jaycee Shelter, 340 East Lake Park Drive, Winona. Registration begins at 9:00 a.m. followed by an opening ceremony at 10 a.m.