May 13, 2016

You’ve Been “Forgotten” and What to Do About It

The following is an excerpt from an email that Bob received and sent over to me. I wanted to offer some advice for people who get “forgotten” by their loved ones with dementia.

She has Lewy Body Dementia and it was pretty much advanced by the time I realized.

She doesn't recognize anyone but me and my brother.

You can visit and stay for hours and the minute you've gone she feels she hasn't seen anyone ever.

I had to ask her friends to stop visiting because it upsets her that she can't remember them.”

By Rachael Wonderlin
Alzheimer's Reading Room

Do friends and visitors of this woman with Dementia with Lewy Bodies say, “Don’t you remember me?”; or, “Remember, I’m your friend from bridge!”

A person living with dementia can be easily upset by this. If her visitors had not quizzed her about who they were, she probably would’ve enjoyed their visit.

For example, if they had walked in and just said “hello,” and started up a conversation, this woman probably would not have worried about their identity.

It is imperative that we do not “quiz” people with dementia about our identity. This does not help our friends and family with dementia remember us. Instead, it just humiliates them when they cannot recall our names or faces.

How to Get Answers To Your Questions About Alzheimer's and Dementia

No one truly becomes “forgotten.” It is not as if you never existed. It is not as if the person with dementia is choosing to “forget” you. People with dementia cannot control how their brains operate, and so facts, faces, and judgment often become confusing as their disease progresses.

The way that I often describe the “forgetting” of people, names, and faces is to use a phrase I call, “timeline confusion.”

Timeline confusion is when people with dementia mix up facts and information that happened in the past and confuse it for the present.

For example, a woman with dementia may get a visit from her 55-year-old son. Her son is a grown man with a family of his own. He walks in the door of her care community to visit, and she’s confused. She’s probably thinking, “Wow, I know that I know this man, and he sure looks and sounds a lot like my husband. My son is only 20 years old. This man must be my husband.”

More often than not, people with dementia do not truly forget who their loved ones are—usually they become confused with someone else.

In the scenario I just laid out, this woman believes her son is actually her husband. He’s the same age she remembers her husband being, he looks similar, and has similar mannerisms. And, of course, she believes her son is just a young man.

People with dementia do not forget their loved ones. The disease just makes it hard to place them on a timeline. The disease makes it challenging to understand what is happening around them.

Rachael Wonderlin also blogs and answers questions at Dementia By Day.

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