Let them lead, and you follow

RACHAEL PODCAST COVER – Season 4

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Let’s face it: dementia care is hard. Honestly, it’s often harder for caregivers than it is for the people with dementia, especially in later stages of the disease process. 

No one “wants to lie” to a loved one with dementia, but that’s why I always tell families to take the word “lying” and throw it out the window. When you get caught up on the word “lying” it makes it harder to be the best possible caregiver. It makes it hard to live in dementia world.

Embracing someone’s reality and “living in their world” is a lot easier when we recognize that people with dementia aren’t doing or saying things to annoy us. They aren’t being difficult to make our lives more complicated: it’s just how the disease process is. The best way that you can live in someone else’s world is to let them lead and then you learn to follow.

For example, I had a resident once named Sophie. Sophie’s daughter was obsessed with the idea that her mother thought her father was still alive. “I keep telling her the truth!” she’d say to me. “Mom deserves to know the truth that he’s dead!”

I told Sophie’s daughter to try something new: ask Sophie where she thought her husband was. 

“When she says, ‘Where’s dad?’ ask her, ‘Where do you think he is?’ and then go with that answer,” I explained.

Sophie’s daughter had a hard time with this at first. “But what if she says he’s at work? What am I supposed to do, agree with her?” she grimaced.

Yes. Agree with your loved one with dementia. Allow them to guide you, even when it’s hard, and you need to learn to follow along.

Sophie’s daughter didn’t have to get creative and come up with an answer to her mother’s question. Instead, she just asked her mom a question back, and then agreed with the answer. When her mother asked again ten minutes later, she had a perfectly acceptable answer: “He’s at work.”

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Rachael Wonderlin is an internationally-recognized dementia care expert and consultant. She has a Master’s in Gerontology and is the author of two published books with Johns Hopkins University Press. Rachael owns Dementia By Day, a dementia care consulting and education company.

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