At a talk I gave recently, a woman in the audience told me about her mom. Her mom has dementia and still lives alone. She still wants to drive, and in fact she is still driving, even though everyone in the family thinks she’s no longer safe to.
Then the daughter got a phone call from her mom’s neighbor. “Hey, your mom just hit our car.”
Careblazer, trying to keep your loved one happy could actually put them in the hospital. If you’re in a position where you have to say no to your loved one with dementia, or stop them from doing something dangerous, here’s how to keep them safe without all the guilt.
When Keeping Them Happy Turns Into Harm
A happiness first attitude can lead to a harm first situation.
Here’s what I mean. Someone with dementia wants to drive, manage their finances, live alone, cook a meal, or go on a walk alone. But they’re no longer safe to do it. These become potentially dangerous situations, some with deadly consequences.
This is where your wish to make them happy can quickly turn to harm.
We think, I don’t want to upset them, I want to keep them happy. And in our heads, that turns into letting them do things we know they shouldn’t be doing.
Why Your Loved One Gets Upset When You Say No
Stop and think about where they are coming from.
Imagine that all of a sudden you couldn’t drive anymore. Or manage your finances, or cook a meal on your own. Or you had to be open to people coming in to help you, with things you’ve done alone most of your life.
Of course you’d have a reaction too. You’d probably be annoyed, frustrated or upset. You might resist, and push back at the person reminding you of your limitations.
That’s you, the Careblazer. When you step in for their safety, you become the reminder of their limitations.
In some ways, their hard reaction is a totally normal grief reaction to what’s happening. Their upset, their frustration, their grief are probably pretty natural. They are not a sign that you’re failing.
Love Says No When Yes Is Dangerous
This is hard to hear, but your role isn’t their constant happiness. It’s their safety.
Here’s a motto to keep in mind. Love says no when yes is dangerous.
Get rid of the goal of keeping them happy all the time. It’s not realistic, and it’s certainly not safe. That means learning to let them be sad or upset from time to time, without making it mean you are a horrible Careblazer.
Even if that’s what they’re telling you in the moment. They might say:
- “You’re a horrible spouse.”
- “You’re a horrible daughter.”
- “I hate you.”
- “Why won’t you let me do these things?”
- “You’re treating me like a child.”
They might say all of those things. It doesn’t mean they’re true. Because here’s the thing. If they fully understood, they wouldn’t need you.
Your standard is safety, not their constant smiles.
I go further into what chasing their happiness costs you in why you should not try to make your loved one with dementia happy all the time.
How to Say No Without the Guilt
One of the most important roles of a Careblazer is keeping them safe, even when they don’t fully understand.
Don’t misunderstand me. This doesn’t mean we stop trying to make them feel good. Whenever possible, we want to give them a high quality of life. We want to be kind and loving, and we want to make them happy as much as we can. We just do it in situations that are okay for them, not ones with serious consequences. And we accept that it’s okay for them to be upset.
You are absolutely going to make decisions they don’t agree with, or don’t understand. If they did understand, they wouldn’t really need you to be a Careblazer.
So how do you say no without the guilt?
- Get okay with not agreeing with them all the time.
- Get okay with them not agreeing with you all the time.
- Don’t take it so personally. That’s the key.
When you’re facing a hard moment, you can weigh one question. Would you rather your loved one be happy right now? Or would you rather your loved one be safe right now?
If the guilt stays with you after a decision like taking the keys, I talk about that in how to stop feeling guilty as a dementia caregiver.
And if finding the words is the hard part, I put together a free Loving No Scripts download with kind, loving ways to say no, and to redirect their attention, when you don’t want them to do something.
When Saying No Is Heartbreaking
Nobody wants to stop their loved one with dementia from driving. Putting that limitation on them is hard. It’s heartbreaking.
But it’s necessary, for their safety and for the safety of everybody else on the road. And driving is just one of many examples where someone with dementia may no longer be able to do something they enjoy, for safety reasons.
Saying no to someone you love, and hearing what they say back, is a lot to carry week after week. Inside the Care Collective, we talk through exactly these moments together: the decisions you have to make for their safety, what to say when they push back, and how to take care of yourself through it. You can learn more here.
