Betsy Meyer of West Seattle, Wash., identified this wrenching reality soon after she was diagnosed with Alzheimer's disease (AD) in 2000. In her case, the difficulties of discussing her condition with the children in her life were exaggerated by the fact that she was their parent, not their grandparent. Her early-onset AD was identified when Betsy was only 46 and her children, Alex and Emily, were just 13 and nine. Betsy Meyer passed away in December 2008. "We had talked to the kids so much about the memory issues that Betsy had been facing, but we hadn't talked to them about the fact that what she had was terminal," recalls Betsy's husband, Jeff Meyer. "So that was the hardest discussion we had to have."
Range of Responses
Jeff joined Betsy, who was still lucid enough two years post-diagnosis to engage in the conversations, to speak individually with their children about her prognosis. "We sat down first with Alex, who was 15 then, and talked to him about Alzheimer's and how it would shorten Betsy's life," Jeff says. "He hugged her and it was very emotional, very tough. We got through that, and knew we had to do the same with Emily, who was 11.
"But her response was very different; she was totally reserved and matter-of-fact, like ‘Oh, and what's for dinner?' That was her outward response, so who knows what was going on inside," remembers Jeff. Later, Emily started a blog about her experience and got involved in Alzheimer's Association activities such as the Memory Walk. All this showed that she simply needed to embrace the diagnosis in her own ways and on her own terms.
After Betsy died (when Emily was 18), Emily pointed out that her mom was memory-impaired for half of Emily's life, and that Alex had four more years of childhood with his mom before her diagnosis.
Starting the Discussion
Most children who are touched by AD watch the cognitive deterioration of elderly relatives rather than their own parents. Still, the Meyer family's experience offers an important example of the ways in which individual children respond, communicate and cope differently. Parents faced with this challenge can use the following tips to help ease the burden.
• Reassure, reassure, reassure. A basic presumption among all children is that someone will always take care of them, according to Elizabeth Berger, M.D., a child psychiatrist and author of Raising Kids with Character. So the very existence of AD in a relative who used to care for the child and can no longer even take care of herself is a threat to a youngster's most fundamental assumption about the world. A child might wonder whether his parents will abandon him as Grandma did, or whether he too will become helpless as she has. It gets to the heart of a child's feelings of safety and security, says Berger. Parents can reassure children that although Grandma may forget names and faces, she can still feel and express love. "The last thing to go is emotional recognition, so even in the final stages of AD, people have the capacity for a twinkle in the eye. This is very meaningful to children," says Berger.
• Tailor your message. The best ways to discuss AD with your children will depend on their ages, their developmental levels, their ability to comprehend medical and/or psychological explanations, the sufferer's degree of illness and the necessity to divulge the condition. "Grandpa may be sufficiently impaired that he can't practice law anymore, but he might still be able to be a great grandparent," explains Berger. "Sometimes, parents are anxious and upset about the diagnosis, which makes them feel that their children need a big, long speech about it. But the parents should decide what the situation calls for and tailor what they explain to the children in terms of what they see emerging."
• Be concrete. Alzheimer's and other forms of dementia are especially difficult for children to deal with because the disease manifests itself via behavior rather than in visible, physical ways, which kids can more readily comprehend. Clarifying the difference between AD and something more obvious, such as a broken arm or chicken pox, can help children make sense of it. "It's best to speak in very concrete and descriptive terms," advises Barbara Stratton, M.A., LMFT, a Broomfield, Colo.-based licensed marriage and family therapist and a clinical member of the American Association for Marriage and Family Therapy. "Explain that Grandma has a disease that's deep inside her brain where we can't see it, but we know it's there because of the way she acts. Also, it will make more sense to children when they are given examples of behavior that they have already seen," she adds. Point out that Grandma's disease is what makes her forget names and sometimes get mad about things that seem trivial to us, but that she doesn't mean to act this way.
• Stay age-appropriate. Deliver the information to your child based on the level of complexity he or she can handle. Small children cannot connect the science of AD with the behavior they see in their loved one; older children who can understand the biology may be more interested in coping skills than in complicated explanations. Consider explaining that the relative's disease is causing him to behave more like a child or a baby, even comparing him to a toddler your child knows. "Relating the AD sufferer to someone your child knows who is at the same functional level, such as the three-year-old next door, can help," suggests Berger. Additionally, be sure to talk about how the situation directly affects the child. "Most profound to young children is when Grandpa doesn't know them or calls them by the wrong name," reminds Stratton. "It's so confusing when the actions and words no longer match the familiar face." With older children and adolescents, you have the option of being more scientific if you think your child can grasp things from a broader perspective. In addition, you can use statistics to help clarify that your relative is one of 5.5 million Americans suffering from this disease, and that she did not just get this out of the blue. Supplying more information can help give the child some sense of control over the situation. "Preteens and teens will have more complex emotions than younger children, but may not volunteer their feelings," reminds Stratton. "The caring adults in their lives will need to anticipate these feelings and take responsibility for initiating conversations. Young people are more capable of experiencing and understanding the loss of the person even before death occurs. At any age, that is so confusing and may bring about deep hurt and pain, which just needs support and care."
Given the often drawn-out nature of AD, consider the conversation less of a speech and more of a process, regardless of the age of your kids.
• Address the fears. Aside from basic concerns about their own care, children who live in the midst of AD might deal with other, less obvious fears. "When the adult caregiver is upset, the children are going to be upset," cautions Berger. "So when you, as the parent and the caregiver, get to where you're losing it, it's okay to say to your child, ‘I don't blame you for feeling bad, because so do I.'" It is most important for parents to watch for signs of fear and worry in their children. Barbara Stratton explains that in one family, that might mean a child fears losing her bedroom to a sick grandparent. In another, a child might experience nightmares after witnessing unusual behavior in a relative. Instead of asking, "What's the matter?" Stratton recommends the more productive and sensitive alternatives, "What's worrying you?" or "I think something about Grandpa is scaring you; what is it?" The goal is for all involved—children and adults alike—to acknowledge their feelings in order to conquer their fears.
• Introduce coping strategies. The key to helping children through the difficulties of Alzheimer's is to maintain a strong and loving parental relationship with them, in which trust and communication are readily available. Additionally, parents should reassure children that they are entitled to their feelings about the situation. "When you're a kid, you get the message that you can't be a baby; you must go forward," says Berger. "With Alzheimer's, the patient becomes the baby and it can be very threatening for a child to see a grown-up act that way. Parents need to reinforce to children that they are allowed to be children; parents needs to protect that right," she adds. Some families find it helpful to give each person an opportunity to express their frustrations and feelings following visits with their relative. On a day-to-day basis, parents might consider giving their children specific caregiving responsibilities, such as reading the comics to Grandpa or making a photo memory book with Grandma. "Children cope better when they feel like they are contributing in some way," reminds Stratton. "No matter what the chosen activity or routine, when children believe they are needed, perform tasks that people depend on and have a place to belong, they can overcome any challenge."