How do I begin to explain to Bella why grandma doesn’t remember her name, or which of grandma’s sons is her dad, or why, grandma keeps offering her lunch even though she just sat down with grandma and ate lunch together? I barely understand it myself. I keep thinking, “all mom needs is a compelling reason to remember Bella and Maya”… as if being her grandchild isn’t enough. But I first had to realize that mom won’t just suddenly be her old self and that she has Alzheimer’s, in order for me to be able to explain to Bella what’s going on with grandma. That realization didn’t come easily… I spent the better part of a year ignoring the signs, obvious as they were… I attributed them to mom not eating enough, not having someone around to take care of, and having problems talking to my dad. Maybe I just didn’t understand it either. As we tried more things to help my mom, enrolling her into an elderly exercise class, seeing a geriatric doctor and then a neurologist, it became clear that nothing would get her back to her “old” self. And finally, she was diagnosed with Alzheimer’s and started treatment for it. So now, how do I explain this to Bella? Should I even try to give her the full lowdown? My belief is that children can for the most part be given the full explanation, but of course simplified and as I found out while talking to Bella, they can teach us a lot about accepting and making the best of the situation.
Before I could explain anything, I did some research and found a lot of information about the disease and it’s effects on the individual and their families. The more I read, the more everything that happened with my mom made sense. Like the frustration and confusion she was feeling and how depressing it was for her to begin to feel the loss of her facilities, but had no way to explain it. And how hard it must have been for her to hear us keep telling her, all she needs to do is exercise, eat well, get up, go out.
First thing I learned, Alzheimer’s is the most common form of dementia. Alzheimer’s sufferers and my mom specifically show the following signs…
- Language problems, such as trouble finding the name of familiar objects
- Change in sleep patterns, often waking up at night
Delusions, depression, agitation
- Forgetting events in your own life history, losing awareness of who you areLosing interest in things previously enjoyed, flat mood
- Personality changes and loss of social skills
For a full list of symptoms visit the Alzheimer’s Association website.
So how was I going to explain this to Bella? I began with grandma not feeling well. I know, it makes it sound like a cold rather than AD, but I think this was more for me to ease into the details rather than not thinking Bella could handle the truth. Not feeling well seems like a better way to say, dementia or that grandma has a disease that is going to get worse over time. Then I go into the symptoms that Bella might have noticed, like… “you remember when grandma kept asking you who you were? Or when grandma didn’t remember she was at the store with us… that’s called Alzheimer’s. Grandma has Alzheimer’s, her thoughts are getting jumbled up in her head, like someone took all her papers that have her memories and thoughts on them and shuffled them around. So it take grandma longer to find what she needs or even can’t find what she needs. And on one of her papers, she has Bella, my grandchild; her father is my son, R. She is 6 years old and visits me every weekend.”
So Bella asks, “why is grandma’s papers all messed up.” Tough question… I answered, “no one really knows, but part of it may have to do with being old, part of it maybe because grandma used her brain less (this one was hard for me to admit, but I believe this had something to do with it… even if just a little bit) and sometimes it just happens.”
Then I suggested things we could do to help grandma… I think giving Bella something that she has control over, some type of action she can do to help, makes the whole situation easier to cope with. So I told her, “we can help grandma by reminding her of things she may have forgotten, like that she already ate her lunch. We can help her by asking questions about grandma’s past so she can feel good about remembering things, like asking her about her wedding day… that always seems to make grandma smile.”
Health issues are never easy to discuss with children, but with a little simplification, and some tangible action items to help children feel as if they have some control over the situation… maybe they can affect everyone positively with their involvement. I know it’s helped me when I see Bella patiently explain to my mom that today’s Sunday and introduces Maya to her as her youngest grandchild. It’s way more than I could have ever expected from Bella.