“Is it like cancer?” asked one of Marty Schottenheimer’s young granddaughters.
His family learned about five years ago the former NFL coach has Alzheimer’s disease. He has four grandchildren.
Describing Alzheimer’s disease to a child is difficult, his daughter Kristen Schottenheimer said. Alzheimer’s is a hard word for children to pronounce and it’s complicated to explain the way the disease attacks the brain. Unlike cancer – a word children are more familiar with, Schottenheimer said – there’s no life-saving treatment option for Alzheimer’s.
“That’s the hardest part. You have to explain: It’s not going away ... We don’t know how to fix it yet – nobody does,” said Kristen Schottenheimer, a personal trainer and Alzheimer’s advocate/speaker.
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Marty Schottenheimer retired from the NFL after 21 years, including 10 seasons with the Kansas City Chiefs and five seasons each with the Cleveland Browns and San Diego Chargers.
Now, the 74-year-old – one of the NFL history’s most-winningest coaches – is in a clinical trial for Alzheimer’s patients at Carolinas Medical Center in Charlotte. Doctors are studying a new drug that could slow the progression of Alzheimer’s.
For Marty Schottenheimer and his wife, Pat, who live in Charlotte, some days are better than others.
He can’t remember some of the biggest games he coached and sometimes he gets confused – a sign associated with dementia in early-onset Alzheimer’s. Physically, though, Schottenheimer is still active – enjoying golf, throwing out a first pitch recently for an Alzheimer’s awareness event and traveling to watch his son’s home games as quarterbacks coach for the Indianapolis Colts.
That’s where the family will be for Thanksgiving.
Holidays with her dad are more special than ever, Kristen Schottenheimer said.
“We’re only given these moments in time for so long,” she said.
Tips for families
For families with a loved one diagnosed with Alzheimer’s, holidays can sometimes feel stressful. For parents, in particular, it’s a good idea to discuss the topic with kids before visiting family, says Mary Ann Drummond and Dr. Beatrice Tauber Prior, who co-wrote a children’s book about Alzheimer’s.
Prior is a Cornelius-based clinical psychologist who specializes in child development. Drummond, from Harrisburg, N.C., has been a nurse for 30 years and works with dementia patients and their caregivers. Their book depicts a young boy whose grandmother has Alzheimer’s, written from the child’s perspective.
The book, called “Grandma and Me: A Kid’s Guide for Alzheimer’s and Dementia,” has been helpful for discussing her dad’s diagnosis with his grandchildren who range in age from 11 to 16, Kristen Schottenheimer said.
“At first, the explanation was just ‘Papa forgets things’ – we all do,” she said. “But, kids see a lot more than you think.”
When her 11-year-old daughter Catherine, was around 7 years old, she heard the word Alzheimer’s for the first time.
It’s an ongoing process, Kristen Schottenheimer said, for the family to find new ways to help her dad live as normal of a life as possible.
His grandchildren are a big part of that. This past summer, the oldest, Brandon, spent every day with his grandfather after football practice, often on the golf course. The younger ones, Savannah and Sutton and Catherine, love to play.
“They all want to take care of Papa,” said Kristen Schottenheimer.
For families looking to talk with children about a loved one’s Alzheimer’s or another dementia-related disease, Prior and Drummond offer some advice.
▪ Keep children engaged.
“There’s a natural fear parents tend to have but don’t separate children,” Drummond said. “There’s beautiful things that can happen in that relationship.”
Staying connected with family members is healthy for people living with dementia. And, for children, a better understanding of the disease will help them cope with future grief after their loved one dies.
▪ Prepare answers.
“Children have questions,” Prior said.
She and Drummond recommend answering questions with scientific explanations of how dementia affects the brain. Their book describes the brain’s neurons as cells that help people think and recall information. Alzheimer’s damages neurons in the brain.
These broken neurons – like a broken arm, for example – won’t function properly, affecting a person’s speech, movements, behavior and thoughts.
Young children may ask, “Why did grandpa call me the wrong name” or “why is grandma using a cane.” For children of all ages, it is important to explain ahead of time that the disease is not contagious and that any unusual behavior they witness was not their fault.
▪ Be honest.
There is no cure for Alzheimer’s or dementia. The disease is progressive and will get worse over time.
Parents should acknowledge but not dwell on that reality with their children, suggests Drummond and Prior. Instead, children can be encouraged to “stay in the moment” with their loved one and remember there will be good days and bad days, Prior said.
▪ Set good examples.
“Modeling is one of our greatest tools as parents,” Prior said.
Relatives with dementia may sense emotions in the room, even as their other brain function is diminished. This is one reason a person with dementia can benefit from a child’s “happy energy,” she said.
But, any anxious feelings or negative reactions from other adults will also affect a child. Drummond and Prior recommend staying calm and positive in front of children.
▪ Expect the unexpected.
An Alzheimer’s diagnosis helps a family prepare for behavior changes but uncomfortable situations may still arise. Some people show irritability, say unpleasant or inappropriate things, or act impulsive or aggressive. In some cases, stress or non-routine activities may trigger such behaviors.
“There’s times when you should remove a child,” Drummond said. “But it needs to be explained to them.”
If it’s necessary to leave a situation, Drummond said, parents should remind their children their loved one’s behavior was out of their control, due to the disease.
Drummond and Prior are holding a book signing and author Q&A for families at Park Road Books in Charlotte on Nov. 30 at 6 p.m.