I wasn’t quite sure how to write this post, when I first got the idea. I want it to be informative and concrete, but at the same time respecting the privacy of my family. Like I’ve mentioned before, I personally do not have a disability (so I’m an able-bodied person, if you’re not familiar with the term). Yet there are quite some types of disability I’ve come in contact with growing up: cancer, diabetes, etc.
One of those disabilities is dementia. I don’t want to go into detail here, because I feel like it’s not my place to do so. I want to respect my family’s privacy. To understand why I’m writing this though, I will tell you that someone in my family suffers from dementia.
Before this happened, and the symptoms started rearing their heads, I didn’t really know much about dementia. I’m assuming a lot of you don’t either. We recognize terms such as dementia and Alzheimer’s disease, but do we truly know what they are? They’re not the same at all.
Dementia is an umbrella term for a decline in mental ability severe enough to interfere with daily life. It’s a syndrome (a wide range of symptoms), not a disease, and there are many forms of dementia out there.
The two most common types of dementia are
- Alzheimer’s disease, which causes problems with memory, thinking and behavior. It worsens over time, and there is no cure -at least, not yet.
- Vascular dementia, which occurs after a stroke.
Most forms of dementia are progressive. The symptoms start out small, such as forgetting where you placed certain items or having difficulty learning new information, and get gradually worse.
There is this tendency in the world to just lob everything under the term of dementia or aging. Dementia symptoms are often seen as just a normal side effect of ageing. They’re not. Losing memories, changing behavior radically and the way you think are not part of ageing. On the other side of the coin, many other disabilities or syndromes get lobbed in the dementia category. For example, in my family someone has Parkinson’s. That’s not the same whatsoever. Other mental illnesses also get shoved under the dementia term, such as bipolar disorder. Misdiagnosing these disabilities and syndromes will neither help the patient nor those caring for them.
Today, I’m talking about my experience with dementia, and that includes vascular dementia. There are really two sides to living with dementia: the side of the person who suffers from dementia, and the people close to said person.
I can’t speak from experience about being a person with dementia. I can only imagine it to be a terrifying thing, to slowly see your memories slip away. I can however, speak from experience about being close to someone who suffers from dementia.
It is an incredibly difficult thing. Dementia can not only affect your memories, but the person you are. It can start so small, with a person saying something completely out of character or context. And it can progress so quickly, that in a year that person will hardly recognize who you are.
It is so difficult to see a person you love so much, lose themselves so completely. When they forget the experiences and memories that made up so much of their lives, their personality changes too. Because you are formed by your experiences. Some return to childish behavior, like breaking stuff on purpose. Some get slurred speech, which makes it almost impossible to understand them.
After a while, it’s very possible that the person you love so much won’t remember you. That they will look at you and be confused, because who is that person visiting me? It hurts to see total confusion in the eyes of someone you love, and not see a spark of recognition.
So I hold on to my childhood memories of said person. I hold on to the Wednesday afternoons she watched over me and my brother while my parents were at work. I hold on to the “stoemp met spekjes” she made for us -which is basically mashed potatoes with spinach and bacon mashed in. I hold on to the countless of cartoons I watched while sitting on a cushion on the floor. To the spaghetti she made, which was always quite salty. To the strong woman who raised three children on her own, and kept a small farm (kind of) in a time where none of that was as “easy” as it is now. That is the woman I remember.
In the past few years, I’ve thought a lot about dementia. And I want to share some of that with you.
I think it’s incredibly important to portray dementia in literature. Reading about the experiences is not only useful for those working with patients with dementia, or family members. It’s important for everyone. It can mean noticing the signs early on, which gives the doctors a better chance of fighting it. It can mean knowing what to do once you do start showing symptoms, and how to talk to your family about it. It can show you ways to deal with dementia, or how you’re basically grieving for a person who is still there, but isn’t.
I can only think of one book I’ve read that features a person with dementia, and that is This Is Where It Ends by Marieke Nijkamp. It’s not one of the main characters though, but the mom of one of the students in the book. She’s slowly forgetting so much, and Sylv is doing all she can to care for her.
For a syndrome that is SO prevalent in our world at the moment, it is sorely underrepresented. Especially in YA and kidlit. So I’m going to try and read more about it. Read more fiction with dementia in it. Here are three books, I want to read in 2017.
The Memory Wall: Severkin is an elf who slinks through the shadows of Wellhall’s spiraling stone towers, plundering ancient ruins and slaying mystical monstrosities with ease. He’s also a character in a video game—a character that twelve-year-old Nick Reeves plays when he needs a break from the real world. And lately, Nick has really needed a break. His mother had an “incident” at school last year, and her health has taken a turn for the worse.
The Memory Wall is a MG/YA book, and I believe it talks about dementia -or Alzheimer’s specifically, I don’t know. It’s so far the only one I could find.
Still Alice: Still Alice is a moving and vivid depiction of life with early-onset Alzheimer’s disease.
Still Alice has also been turned into a movie, so I want to watch that one too. This isn’t a kidlit book, but an adult fiction one.
Hersenschimmen: This is a Dutch book that follows Maarten, who is quickly losing his grip on his memories and reality. This is a book about dementia and love, as I believe it also has a focus on his wife -who he sometimes doesn’t recognize.
Have you read any books about dementia? I would really like some recommendations from you all, whether it’s kidlit or adult.
Sources I used: