I met Ansel’s wife, Megan, at their home. Ansel had vascular dementia and was in a moderate stage of the disease. Ansel’s wife, however, was bearing the brunt of his disease herself. “I’m exhausted,” she sighed when we sat down on the couch to talk. It was clear to me immediately that Megan was doing the absolute best that she could, given the circumstances. “He doesn’t listen to me when we talk. I feel like I’m just…starting arguments with myself.”
Megan explained to me that, when the caregiver from their home care agency arrived, she would take that time to grocery shop, get her hair done, or just see some friends for a couple hours. “And then I feel guilty for needing a break!” she sighed.
“I feel like I’m walking on eggshells,” Megan explained. “He constantly talks about how he doesn’t need any help, and can take care of himself when I’m gone…but I know that’s not true! So I tell him, ‘Look, you can’t stay here alone, you aren’t safe,’ and then he gets mad.”
Megan did her best to talk to her husband about her concerns, but these talks just caused arguments. I understood why she felt like she was walking on eggshells: she was afraid to say the wrong thing, but she was afraid to not say anything at all.
“Instead of walking on eggshells,” I said, “Walk away from the eggshells.”
Megan stopped and thought about this. “Walk away from the eggshells…” she repeated slowly to herself. “So, you mean I should avoid the conversation entirely?”
“That’s right,” I nodded. “You’re never going to be able to convince him that he needs home care, or that he has dementia, or anything like that. So, just walk away from the conversation: change the topic, get him focused on a new activity, whatever you need to do.”
If you’re reading this and thinking, but how can you make it sound so easy?, I fully recognize that this isn’t easy. Disengaging isn’t easy. But, it is better for both you and the person you’re caring for.
You will get nowhere with arguments, logical statements, and attempts to “make them understand.”
What I find often is that caregivers are working hard to do two different things:
1. Trying to make that person understand, and then…
2. Trying to get themselves to a place where they feel like they were heard.
To put it bluntly, the person living with dementia probably isn’t going to “hear” you in the way that you need. Think about it this way: if you didn’t feel like anything was wrong with you, but someone kept showing up and telling that there was, indeed, something wrong with you, you probably wouldn’t take it too kindly.
The person living with dementia in your life isn’t aware of all of the sacrifices you’ve made. They just simply cannot understand what you’re handling on a regular basis.
And they’re not going to make you feel heard.
I highly, highly recommend joining a care partner support group (or even tuning in to one of my monthly online workshops where you can chat with other care partners!) You can also join my Care Partner Coaching Course. The other care partners are the ones who are going to hear you. They’re the ones who know what you’re going through.
It’s the same reason I tell caregivers not to “wait until the person living with dementia says they’re ready to move to a care community,” because it’s never going to happen. That person is never going to tell you that they’re ready.
I called Megan a couple days later to follow up with her and see how things were going. “I’ve been avoiding the eggshells!” she exclaimed proudly, and I could hear her smile over the phone. Megan joined a support group to talk with other caregivers about what she was going through. She found that her story wasn’t so strange or unique: other spouses at the group were dealing with the same things.
She felt heard.