Is This Normal?

One thing about being at the Dementia Simulation House…we hear a lot of stories from caregivers. I am fortunate to have a job that allows me to learn each day.

I thought I’d share a few interesting things I’ve heard recently. I often get this question…. “Is this normal for someone with dementia?”

I haven’t figured out a great way to respond to this question. There is really no normal from person to person. Every person with dementia is unique with unique symptoms.

Recently a woman confided in me that her husband, who has dementia, wants to have sex with her at the assisted living where he now lives. He won’t leave her alone about it and can’t be diverted. She visits less because she doesn’t know how to respond.

A man told me that his wife stopped eating. He would put a plate of food in front of her, and he couldn’t draw her attention to it. He figured out a few days later that she would eat–if he turned the TV off. She couldn’t focus on TV and eating at the same time.

A woman with dementia was convinced that her daughter was a dentist. Anytime the daughter would visit, her mom would yell, “You aren’t getting me to open my mouth!” and chase her out of the room. The daughter had no idea of anything in her mom’s past that might be related to this perception. In fact, her mom never minded going to the dentist.

I met with someone whose mother has younger-onset Alzheimer’s. Her mom calls her repeatedly throughout the work day. She always answers because she fears it could be an emergency, but her mom forgets that she is the one who initiated the phone call. She usually says something like, “Well, if you have nothing to say, I don’t know why you called,” and hangs up. Recently her mom sent her a text and told her to stop calling her because she was wasting her time.

Are these things normal?

Yes. No. I don’t know.

Dementia itself isn’t normal. It’s not a normal part of aging.

Among those who live with dementia, there really isn’t a normal. Keep in mind that dementia means cognitive decline. It means the brain is changing. The symptoms that come along with that depend on quite a few factors: type of dementia, part of the brain impacted, personal background, level of progression, to name a few.

There are stages, but they are so unpredictable that I sometimes wonder if they are helpful to families at all.

Sometimes, if nothing is really normal, everything becomes normal.

People with dementia were unique individuals before they become people with dementia. They remain unique individuals with unique disease progression.

As we say, if you’ve met one person with dementia, you’ve met one person with dementia.