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When Grandparents Have Alzheimer's, Children Need Help Coping With the Changes

Rachel Prettyman was only 6 years old in 1997, but remembering that time in her life still brings her to tears. Remembering things - that's what her grandma or Nonna, as she was called by her grandchildren, had trouble doing. The disease had her and was taking away the Nonna that Rachel knew.  It was a lot for a little girl to take on.

"In the later stages I remember hearing her moaning or putting something somewhere and not remembering where she put it," Rachel says.  She remembers Nonna calling out the names of people who weren't around. At parties, Nonna would go and sit in a room by herself and just stare blankly.  The moaning and screaming had gotten so bad at night that Rachel, who slept in a room next to Nonna's, had to wear earplugs to fall asleep.  "It was hard," says Rachel. She would get to her first-grade class in the morning and just cry.

It's a confusing disease that adults don't know much about. It can be even more confusing for a child to understand.  Rachel's grandmother Marlene Talani was diagnosed with Alzheimer's at 52. She died in September 1997 at age 61.

Jean M. Clark has been a licensed clinical social worker for 15 years at the UC Davis Alzheimer's Disease Center. She said not many people come in for advice on how to deal with their children's reactions to a relative with Alzheimer's.  "When families take care of medical situations, children are very frequently left at home," Clark says. "I don't see that many children. But the reality is ... sometimes there are children who live under the same roof."

Every situation is different, she adds, but it is important to let the child know that a loved one is changing, and their thinking and their behavior may seem a bit strange.  When she does work with grandchildren, she asks them if things were to change for the better, what would the changes be. And the answer she frequently gets is "less of Grandpa."

"I think that says it all," Clark says. "It's not that children don't want Grandpa around. They want balance and a healthy perspective. So much of what we do as a family has a lasting effect. In struggling to do things right, we sometime lose perspective for what's good for everyone involved."

And every case is different. "If you've met one Alzheimer's patient, you have met one Alzheimer's patient," says Cynda Rennie, a resource specialist at the Alzheimer's Aid Society.

Rennie says the society does not have any support groups or meetings for young people. It is more likely to deal with children one-on-one.  "The kids have to have somebody to answer their questions, but you don't need to give the same information to every child," Rennie says.

"Alzheimer's is a horrible degenerative disease. But you're not going to explain all of that to a 6-year-old." Geoff and Deborah Prettyman of Elk Grove say they received criticism from friends about how much they told their children, Rachel, now 11, and Geoffrey, now 14.  "The more they knew - that worked for our kids," Geoff says.  "We were very open and honest," Deborah says. "We thought that the more they talked about it, the less scared they'd be."

Except for a period of eight months, Nonna was living with the Prettymans. They told their children it was the disease that made Nonna act the way she did.  "We tried to keep life as normal for them as possible," says Geoff. "Even though it was so abnormal for us."

Today Rachel and Geoffrey volunteer at the local Alzheimer's Association office.  "I'm happy I can help," Rachel says. She and her brother usually stuff envelopes with information about new developments in Alzheimer's treatment and solicitations for donations. So in their own way, they are helping to raise money to find a cure, she says.

Alzheimer's is the eighth-leading cause of death in the country, with 4 million sufferers, according to the Alzheimer's Disease Education and Referral Center. It is estimated that approximately 360,000 new cases occur each year and that this number will increase as the population ages.  The disease usually begins after age 60, and risk goes up with age. Patients have a typical life expectancy of eight to 10 years. Alzheimer's is not a normal part of the aging process, and there is no cure.

Denise Davis, a program director at the Alzheimer's Association of Greater Sacramento, got involved in the organization after she lost a grandparent to the disease. For a grandchild, watching a grandparent go through the stages of the disease was like a long goodbye with many grieving periods, she says. "It's important that children talk about it with their parents," Davis says.

At the Alzheimer's Association office, books and handouts are offered to help children learn more about the disease and find ways of coping.  John Gorman, co-founder of the Alzheimer's Aid Society of Northern California, said that he has seen children deal with the disease in many ways. In some cases the child resents his or her parent for focusing so much on caring for the ill grandparent.

Other times, the patients relate very well to the grandchildren, notes Janet Claypool, executive director of Del Oro Care Giver Resource Center,  "because they sometimes live in the past or remember what life was like when they were younger."

At Del Oro, an agency that provides support services for caregivers of people with cognitive and physical impairments, the majority of the clients who come in are not focused on the children involved. "It's almost an invisible issue," Claypool says. "There is a need for it, but I don't know if the need has been addressed enough."  Claypool says it would be easy for her agency to put together a class or a series of classes if families brought the issue up more.  "Kids are smart and very sensitive to emotions," Claypool says. "Parents want to make sure they are addressing their needs and are being honest."

Tips for Kids and Coping with Alzheimer’s Disease

What children may be feeling when a family member is suffering from Alzheimer's disease:

  • Fear and grief at the gradual losses the family member experiences.
  • Ashamed; may avoid inviting friends home.
  • Anxious if he or she detects stress in the parents' relationship.
  • Loneliness due to a parent focusing his or her attention on the ill family member.
  • Awkwardness due to a reversal of roles within the family.
  • Frustrated due to changes in lifestyle.
  • Frightened about his or her own future and the chances of getting Alzheimer's disease.

Tips for parents to help children cope

Assess the child's need for counseling and refer him or her to a counselor who specializes in this area.

  • Notify the child's teachers and provide them with information about Alzheimer's disease.
  • Encourage open communication between parent and child.

 

Content and Permission to reprint provided courtesy of Kelli Esters and The Sacramento Bee
Newspaper.  Copyright, The Sacramento Bee, 2004.

 

 

 

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This content was last modified on: 06/30/2008

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