"Mommy, what's wrong with Grandma?" asked my then 6-year old daughter, Carly. Her beloved grandma would repeat the same question multiple times or would often act confused. About three years earlier, my mother had been diagnosed with Alzheimer's disease (AD), a progressive, neurodegenerative disease that causes problems with thinking, memory, and behavior. There are more than 5 million Americans living with AD. Of these, approximately 200,000 people under 65 are estimated to have "younger-onset" Alzheimer's, meaning it strikes people in their 50s and 60s (and in very rare cases, 30s and 40s). The biggest risk factor is getting older. After age 65, the risk of Alzheimer's doubles every five years. After age 85, the risk reaches nearly 50 percent. Right now there's no way to way to prevent it, cure it, or even slow it down. However, recent medical advancements have led to better ways of diagnosing the disease, which is helping to shape the direction of research and clinical trials.
Each of my daughters was dealing with their grandmother's changing behavior in different ways. Emma, who was 8 at the time, had noticed some of the subtle changes, but had easily accepted my simple explanation that Grandma was getting forgetful; she never pressed for details. For Morgan, then 4, AD hadn't changed anything. Since our routine visits with my mom still included cookies, milk, and playing with toys, in Morgan's world, everything was the same.
But Carly's inquisitive mind needed to make sense of what she saw. In time, her questions made me realize that I could no longer continue to pretend that everything was fine with my mother. It was time to open up and tell her the truth. The tough part was figuring out how to do this. What I learned may help your family, too.
Be straightforward. The best approach for talking to kids about Alzheimer's disease is to keep it simple, suggests Claire Day, vice president constituent services, at the Alzheimer's Association's Delaware Valley chapter in Pennsylvania. "Educate them in the basic, simple terms on what AD is, how it progresses and what they should expect to see as changes occur in their grandparent," she says.
Use terms they can understand and be specific about behaviors. Remind your daughter that Grandpa is acting different because he has AD -- not because he doesn't care about her. As my mom forgot names, I reassured my children that Grandma may not know their names, but she knows the love that's between her and them. If your child is older, you can explain that the changes deep inside the brains are destroying the centers that control remembering, thinking and feeling. "It can be as simple as saying, 'Grandma is losing her ability to make sense out of the world,'" says Day.
Take advantage of free online resources. Maria Shriver helped create a moving 30-minute film called "Grandpa, Do You Know Who I Am?" for HBO, which can be helpful to watch as a family. Videos in the "Kids and Teens" section of the Alzheimer's Assocation's site (alz.org) talk specifically to kids about understanding AD and share stories from other children. These videos can help reinforce the message to your children that they're not the only family dealing with this. In addition, alz.org includes fact sheets and book suggestions that explain Alzheimer's in a kid-friendly manner.
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Keep the relationship going. It's not easy, but it's critical to find ways for your parent and child to connect through the different stages of the disease. AD doesn't erase the bond between children and grandparents. For my daughters and my mom, lots of simple activities made the difference. We'd sit with my mom on the couch, read books to her and look through photo albums. We'd take a walk together, hold hands, and give plenty of hugs. These simple activities were easy to do and were beneficial to all of us.
Talk about what's changing. The progression of AD is often unpredictable. "One of the most important barriers to overcome is making sure that your child feels safe and understands the changes. Don't be afraid to talk about them," says Day. For example, if Grandpa is acting strange or yelling, your child might be frightened and may not want to be around him. Reiterate the message that it's the disease that's causing Grandpa to behave differently. Validate your child's feelings and never force him to engage with a grandparent if he's scared. In my case, as my mother's illness progressed, I encouraged my daughters to give Grandma a hug and kiss each time we visited her, but it was difficult for them to have conversations with her. Her speech eventually became incoherent, so we used gestures. I often told my children that "Grandma talks with her eyes and her smiles" -- that's how they could understand how she felt. They'd usually only spend a few minutes with her and then go off and play.
Avoid statements like, "Mom, you remember that, right?" Odds are that the person with AD doesn't remember, and saying this to her will only make her feel confused or upset. A better approach would be, "Mom, let me tell you more about..." This engages her and doesn't put pressure on her to remember. Similarly, don't over explain anything to her. It's better to keep it simple as much as possible and follow the grandparent's lead. If Grandpa is confused or upset about something that happened 10 years ago, you should go into their "world." Saying "Dad, that happened 10 years ago," just causes more confusion and frustration for him. In his mind, what he's upset about is real. Show compassion and give reassurance that he's okay and that you're here for him. Like all things related to parenting, children learn by watching their parent's example. If you are comfortable with AD, are willing to talk about it, and share your feelings, then your children will be, too.
Take action. With AD affecting millions of families, there's growing awareness and many opportunities to make a difference. Each year, the Alzheimer's Association sponsors The Walk to End Alzheimer's, a family-oriented event in which kids can walk to raise money for a cure. The event is held in more than 600 communities nationwide each year and has raised more than $350 million.
Seek help when you need it. The Alzheimer's Association offers a variety of support groups, including some for children. To find out if there's one for you, go to alz.org. In the meantime, you can share books with your children about AD, including What's Happening To Grandpa? By Maria Shriver (for kids up to age 6), Singing With Momma Lou by Linda Altman Jacobs (for ages 6 and up), The Graduation of Jake Moon by Barbara Park, and Horse Whispers in the Air by Dandi Daley Mackall (for kids in grades 4-7).
My mom passed away in November 2012. Her last few weeks were very difficult and we had hospice help to keep her comfortable. Carly and my other two daughters were able to spend time with her, enjoy a final Thanksgiving with her, and say their goodbyes, which was a blessing.
Since my mom died, Carly now keeps special photos of her Grandma and other little "Grandma trinkets" on the bookshelf in her bedroom. My mom was a talented seamstress and Carly wanted to have her box of buttons and other sewing-related items. We talk about my mom a lot and keep her memory alive through stories and doing the things that she loved, like baking, going to the beach, and playing cards. We've discussed the idea of heaven and how Carly can talk to Grandma whenever she wants, and that now she has another angel to watch over her. This has brought her comfort.
I've also told her that the love for a grandparent doesn't end when that person dies -- or when he gets a disease. Throughout the years my mom lived with AD, this was the #1 message I conveyed to my children. Love is more powerful than any illness and even though my mom has died, I feel that she lives on in me, my children, and my entire family.
Kerry Luksic is the author of the memoir Life Lessons from a Baker's Dozen: 1 Mother, 13 Children, and Their Journey to Peace With Alzheimer's.