I recently did a Zooom consultation with a dementia caregiver. She was well-educated and it was obvious she continually sought out information to become a better caregiver.

Her husband has Alzheimer’s. She told me he had plateaued for a few years without much progression, but lately his decline had been steep.

And she wasn’t sure what to do.

After some more conversation, I realized why she had booked a consultation and what she wanted to know.

She wanted to know how to stop the decline. She wanted to know what she had done to cause the decline. She wanted to know what she was doing wrong.

But she’s not doing anything wrong.

He stayed the same. And then he declined.

She is interpreting that as what she was doing was working, and then she must have messed up or changed sometime to cause the progression.

I was interpreting it as….dementia.

I feel like I give caregivers mixed messages. I talk to them about empowerment. But I also talk to them about how they are powerless when it comes to changes that occur due to dementia.

We can change a person’s environment. We can change how we interact with that person. But we can’t stop the progression of dementia.

We didn’t cause dementia, and we can’t cure dementia.

The woman I spoke with had placed a lot of pressure on herself. She researched supplements and vitamins recommended for those with dementia. She went to online trainings for caregivers. She attended a support group to get tips on caregiving. She traveled to two different states to attend caregiving conferences.

She started cooking her husband meals based on some nutritional guidance she found online. And she knows she has to stay healthy to care for her husband, so she exercises for at least an hour a day.

Dementia had become a full time job for her.

And there wasn’t room for much more in her life.

So when he declined despite all of these efforts, all she could focus on was how she must not be doing the right things.

You can love someone and do all the right things.

No matter your efforts, dementia is progressive.

It progresses not because you did something wrong or you aren’t doing enough. Dementia progresses because it’s dementia.

We can’t beat ourselves up when someone’s dementia gets worse.

It’s not our fault.

Instead of making our goal to stop the progression of our loved one’s dementia, let’s make our goal to continue loving and caring for someone while they experience these changes.

Let’s empower ourselves to make decisions that promote quality of life for those living with dementia as their dementia progresses.

When I told this woman that dementia progresses and we can’t do anything to stop it, she said, “Wow. It’s kind of freeing to realize I don’t have the responsibility of stopping his dementia.”

And you don’t have that responsibility (or power) either.