Eleanor Yap
When Alzheimer’s disease hits a family, it affects everyone, including the children. It was therefore poignant seeing this in a HBO documentary film titled “Grandpa, do you know who I am?”, which shares about five children, ages six to 15, who talk about coping with grandparents who have different stages of Alzheimer’s. The film also shares five lessons for children facing loved ones with Alzheimer’s.
The Emmy Award-winning film is based on journalist and author Maria Shriver’s children’s book dealing with Alzheimer’s. Calling herself a child of Alzheimer’s and her own children, children of Alzheimer, Shriver’s father, Sargent Shriver had died in 2011 after a years-long decline due to Alzheimer’s.
The disease which will continue to increase in years to come is interestingly seen in different eyes. As one child in the film shared about the disease, “It is like you are watching them fade away”. Another child said this about his grandfather, “Once he really forgets us, I think we will be really sad.” His sister also shared, “I don’t know if it going to get a lot worse or anything. I hope it will get better but I don’t think it is how it is with Alzheimer’s.”
Lesson 1: There are no silly questions you can ask about Alzheimer’s.
Shriver emphasised, “The more families sit down and have these open, honest conversations where everybody can say ‘I don’t know what’s around the corner’, ‘I am scared’, ‘I am worried’, and can air their questions, that is empowering. That is really helpful.”
Another child in the film shared, “I used to think it was my fault.” Chimed in Shriver: “Most of us go through life with all these expectations. When someone has Alzheimer’s, we can’t have any expectations because you don’t know and that person doesn’t know. It is out of your hands, you are not in control. Therefore, you must deal in the present, in the now, with the person who is sitting right in front of you.”
Lesson 2: When it comes to Alzheimer’s, just go with the flow as best as you can.
Another child said about her grandmother who lives with her, “She is getting worse and worse, but we are learning to deal with it. If you talk to her, she will respond but she will talk about something completely different like it has nothing to do with the subject at all.” She added: “You always have to have an eye on her, even going to the bathroom. You can’t ever leave her alone.”
She said: “We can’t go places because we have to be there with her. But, it is kind of worth it as I am helping her.” She explained that her grandmother has a lot of mood swings. “I understand it now. I see that she is kind of scared like she doesn’t know what to do.”
“I wish she would have never gotten Alzheimer’s. It has changed your life and all of our lives. But, as long as you are here, that is all that matters.”
Lesson 3: It’s okay to be afraid of Alzheimer’s.
Shriver said that if you have a grandparent who is staying at a nursing home and your parents want you to go visit them, it is okay to feel nervous or that you really don’t want to go. “Whether it is worth your time, whether they will know who you are.” She continued, “All of those feelings are valid and true, and they are okay.”
One child shared in the film that she used to enjoy seeing her grandmother when younger but now doesn’t enjoy seeing her at the home as “it is one more time I see her like this and one last time I see her the way she was”. She said: “It is more replacing the memory of how she was.” She also shared a time once when her grandmother slapped her at the home – “it was shocking because I have never seen her hit anyone. … I don’t understand why she would do that.”
Added Shriver: “It is really important to encourage kids not to be afraid when they are around someone with Alzheimer’s. But there is always that moment, when you have to let it sink in that your mother, your father, your grandma, your grandpa, doesn’t know who you are. I don’t think anybody gets used to that.”
Lesson 4: Sometimes it’s the disease talking, not your grandparent.
She also added that when a loved one gets quiet, angry or strikes out, to remember it is not them, but the disease and that it is no one’s fault. Another child shared about her grandmother who used to take care of her: “I wonder what is going on inside her brain a lot. I can’t imagine being in her position. Sometimes she would be in a good mood and sometimes she would be in a bad mood. It is really painful to see her that way.”
“Mommy tells me just to cherish the moments that she [grandmother] remembers us and when she doesn’t remember us, as one day, we are going to miss her,” she added.
Shriver said, “Just know by showing up, you bring love into that person’s life for that minute, that hour, that day.”
Lesson 5: You can be the keeper of memories.
She shared that if you have a grandparent with Alzheimer’s, there are a lot of things you can do to learn about him or her. Get out a video camera, make a scrapbook, “anything you do will be an added bonus”. A child in the film made a documentary of her grandmother’s life, detailing old photos and even interviewing her grandmother’s friends as well as her husband who shared his love for his wife.
Shriver concluded: “While Alzheimer’s is unbelievably difficult – emotionally, financially, spiritually on every level – there are some extraordinary gifts that come to the family. Some extraordinary bonds that develop between generations.”
** You can watch the film HERE.
** Maria Shriver’s children’s book called “What’s Happening to Grandpa?” is available at NLB.
