© Andres Rodriguez | Dreamstime.com
Alzheimer’s is not just a “forgetting” disease. Rather, it eats away memories, deteriorates personalities, and eventually leads to death. Once diagnosed, Alzheimer’s affects every family member, even children and teens. Parents can help kids navigate this confusing time by understanding their emotions, fears, and needs.
Children’s reactions vary
Just as adults have differing responses to Alzheimer’s, so do children. “The most difficult aspect of Alzheimer’s for children and teens. . . is the sadness that comes with being confused about the changes in their loved one’s personality and behavior,” says Miriam Clay, manager of programs and education at the Alzheimer’s Association, Memphis.
Linda Willey recalls her son’s reaction when he visited an uncle who had Alzheimer’s. “Here was this 16-year-old macho football player crying because Uncle Art couldn’t remember his name,” notes Willey, nurse coordinator of the Schmieding Home Caregiver Training Program. “Yet his uncle remembered every tree he had planted along the highway as part of the Corps of Engineers after the war.”
Kids often have difficulty understanding how their loved one can remember detailed events from half a century ago, yet forget family members’ names or recent conversations. The irrational and paranoid behavior many Alzheimer’s victims display is especially confusing to preschoolers and elementary-aged children, as Valerie Fielder, assistant to Willey, attests.
“My 6-year-old nephew hated grandma, thought she was being mean because for a time she would take things away from him, saying ‘These are my crayons.’” Clay adds children may even believe “they may have done something to cause the change in their loved one’s behavior.” Others fear catching the disease.
How is your child coping?
Children may not express their emotions with tears or anger. Warning signs indicating children are not coping well include a lower school performance, lack of interest in hobbies, vague ailments such as stomach aches and headaches, refusing to visit or talk about the affected member, even outbursts of crying or anger. “Offer them comfort and support,” advises Clay. “Provide opportunities for them to express their feelings, let them know that their feelings are normal and respond honestly to their questions.”
Explain and listen. “We encourage parents to educate their children and teens about the disease and encourage them to ask questions,” says Clay. Explaining the process in age-appropriate language helps kids understand it’s the disease that causes family members to act and talk differently. Fielder recounts her nephew’s change in perspective once he understood why Grandma took his crayons.
“He became the activity director of the house,” managing what the family would do with Grandma, such as coloring or puzzles. “Suddenly,” she says, “he wanted to help Grandma.”
To further help explain the disease in child-friendly language, go to alz.org, and check out recommended story books, caregiver training programs, and support groups for families.
Keep family bonds growing. Lisa Bobal, executive director of The Gardens of Germantown Memory Care, warns that children may “feel neglected while mom/dad has to focus all their attention on grandma/grandpa.” Families can keep bonds intact while continuing caregiving by involving children in day-to-day activities along with the family member with Alzheimer’s.
“These activities can include going for walks together, folding laundry, raking leaves, or washing dishes, listening to music, looking at old photographs, watching a movie together, and even creating a scrapbook or photo album together,” says Clay. However, she reminds parents to set aside plenty of special one-on-one time, assuring kids they are still important and loved.
Seek help to avoid burnout. Some caregivers share the responsibility of caring for their loved one among several family members, while others are the sole care providers. Either arrangement can lead to burn out. Clay encourages taking frequent breaks from caregiving “by utilizing adult day care and respite services, as well as in-home sitter services.” Services are available for two hours to several days or more.
“You need to take the best care of yourself,” says Bobal, “so you can take care of your loved one[s],” including your spouse and children”. Clay agrees. “Two of the most common issues we hear from parents that are caring for someone with Alzheimer’s while raising children is that they lack the time for self-care that is coupled with the ‘guilty’ feeling of wanting to have time for self away from their children and loved one with Alzheimer’s.” Her recommendation? Take a spa day, go for a walk, or read a book. Just give yourself time to reenergize.
Know these tell-tale signs:
- Inability to sleep
- Constant fatigue
Suggested Reading for Children
Always My Grandpa by Linda Scacco Ph.D.
- Ages 6 to 10
- A young boy learns to navigate his emotions and cherish time with Grandpa as he watches changes take place.
Singing with Momma Lou by Linda Jacobs Altman
- Ages 6-10
- A 10-year-old girl learns why Grandma doesn’t remember her while helping her hold on to memories a little longer.
The Alzheimer’s Association, Memphis • alz.org 24-hour Helpline: (800) 272-3900 / Free education resources for adults and children. Helpline answers questions, concerns, and provides professional care consultation.
Schmieding Home Caregiver Training Program • arcaregiving.org (870) 207-7600 / Training for caregivers
The Gardens of Germantown Memory Care • gardensofgermantown.com 755-5450 / Weekly, 24-hour respite care