For families, Alzheimer's is a challenge, when a father or mother or grandparent has the disease, everyone needs to adjust to the circumstances. It is a difficult process. Maria Shriver, the First Lady of California has done a good job in her book, which comes highly recommended, just look at the reviews on Amazon.com.
Dec. 10, 2004 - For Grisette Ducos the pain of watching her father struggle with Alzheimer's Disease was heartbreaking. She helped to care for him at home while caring for her two young children, "I literally went from changing my father's undergarments or feeding him to feeding my baby. And, that's heart wrenching."
Grisette's father died last year. Her oldest child Brianna has fond memories of her beloved Papa, but the changes, particularly toward the end, were difficult, "He didn't really remember me because of the sickness."
The effects of Alzheimer's can touch an entire family, and experts say for children the disease can be confusing, even scary. Jed Levine of the Alzheimer's Association says, "I think it can be very confusing for a child who normally has a sense of what an adult should be and what that adult role is. When that changes, it is very upsetting."
Levine encourages parents to talk with their kids about the changes to help them deal with their feelings. He says parents should educate them about the disease in age appropriate ways, like with children's books.
Parents can also find activities kids and grandparents can do together, even if it's just watching a video or looking at old pictures.
But, he warns, don't let children supervise a person. Levine says it can be risky and overwhelming, "Psychologically it's very demanding on a child and very stressful on a child."
Grisette says she worried about what Brianna would remember, "I didn't want her to remember him as just Papa, that person curled up in bed who didn't interact. I wanted her to remember those great times."
To keep those great times alive, Grisette put together a book, "When Papa Remembered Me," full of illustrations done by her husband showing the children's grandfather in better days, so the entire family to hold onto the man they loved.
Brianna says, "I remember when he was on his chair he used to put me on his lap and swing me around like an airplane, and he used to buy me ice cream and sneak another cone."
Levine says it's helpful for some kids to take positive action through things like public awareness activities. If they are old enough, they may want to write about how Alzheimer's has affected their family.