What Not to Say to Caregivers

File this under things NOT to say to dementia caregivers:

My husband/wife/dad/mom forgets things sometimes, too.

I will give you some context. A woman whose husband has Alzheimer’s is out with friends having coffee. She is venting about how frustrating it is to see her husband struggle with short term memory.

And then one of her friends says it (or a version of it):

Well, you won’t believe what my husband forgot the other day.

This is likely well-meaning. Perhaps she is trying to create a connection with the caregiver. She might think the caregiver will think, “Oh, I guess this happens to lots of people. This isn’t so bad.”

I am not saying the friend is a bad friend.

But dementia is not normal. It is caused by brain diseases. And until it impacts someone you love, you really don’t get it.

To say that you are experiencing something similar dismisses the challenges of the caregiver. Your husband might forget sometimes, but if he doesn’t have dementia, please stop trying to say you know what it’s like.

You don’t.

People living with dementia get similar comments. A friend of mine was recently diagnosed with Alzheimer’s. She was telling someone from her church about her diagnosis.

“I totally get it,” the woman said. “I am always calling my grandkids by the wrong name.”

Wow.

It amazes me that we have such a low level of general knowledge about dementia in our communities.

I’ve told you what friends shouldn’t say to caregivers. Maybe it would be helpful if I told you what the should say.

First, think about someone who was diagnosed with lung cancer.

You would not say, “Oh, I have been coughing a lot myself.”

What would you say?

I am always here to listen to you.

Please let me know how to support you.

I am so sorry to hear about your diagnosis.

That sounds really frustrated. How are you coping?

That really sucks.

Let’s understand that someone with dementia has a brain disease.

It’s not a normal part of aging.

Please respond as if someone has been diagnosed with a life-limiting, chronic, and progressive disease.

Because they have.

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