The Day I Threw Out the Playbook

I remember standing in our kitchen, having just tried — for what felt like the hundredth time — a technique I'd read about in a caregiving book that promised to help with resistant behaviors. The author made it sound so reasonable, so doable. And I had done it. I had done everything right.

And it didn't work. Again.

I slid down against the cabinets and sat on the floor, because I genuinely didn't know what else to do with myself.

If you've had a moment like that — or if you're living inside one right now — I want you to know that you haven't failed. The strategies didn't fail you, either, exactly. The disease just moved the goalposts again, the way it always does, without warning or apology. And now we need to talk about what comes after the playbook stops working.

When the Strategies Stop Working, It Doesn't Mean You Did

Every caregiver eventually hits this wall. You've read the books, attended the support group, watched the videos, tried redirection and validation and distraction and environmental modification. You've done the music therapy and the photo albums and the calm voice and the simplified choices. And for a while — maybe a long while — some of those things worked beautifully.

Then one day, they stopped.

Dementia is a progressive disease, which sounds clinical and distant until you're living it. What it means in real life is that the brain your loved one has today is genuinely different from the brain they had six months ago. Approaches that worked beautifully in one stage of the disease may become completely ineffective — or even counterproductive — as the disease advances. The strategies didn't stop working because you applied them wrong. They stopped working because the brain that responded to them has changed.

Releasing yourself from the need to "figure out the right approach" is one of the most painful and most freeing things you will do as a caregiver. Holding space for the reality that sometimes there isn't a right approach — that sometimes a difficult moment simply has to move through — takes enormous courage.

The Grief That Lives Inside the Hard Phases

When I can't reach my husband with the things that used to help, a particular kind of grief settles over me. It isn't just exhaustion, though there is plenty of that. It is the grief of feeling unreachable to someone I love so deeply — and the secondary grief of feeling like I should be able to bridge that gap if I just try harder.

You may be carrying that grief right now. The belief that love, applied persistently enough, should be able to find a way through. And love does matter — enormously, in ways that go beyond what either of you can measure in a moment. But love is not a behavioral intervention, and it cannot stop a progressive neurological disease from doing what it does.

The hard phases of dementia caregiving often involve what I think of as "small losses in quick succession." Your loved one becomes resistant to bathing, then to eating familiar foods, then to the presence of people they once welcomed. Each shift requires you to grieve a little more of the life you built your caregiving approach around. That grief is real, it deserves acknowledgment, and it belongs in your caregiving story.

Bringing Your Medical Team Into the Hard Moments

One of the most important things I learned — later than I wish I had — is that resistant or distressed behaviors in dementia are often medical in origin. Pain that can't be communicated. A urinary tract infection. Medication that needs adjustment. Discomfort from a source that neither of you can name out loud.

When behavioral approaches have stopped working, a conversation with your loved one's medical provider is a legitimate and necessary next step.

Here's what that conversation can include: a specific description of the behaviors you're seeing (not "he's been difficult" but "he refuses to allow any physical contact during personal care, becomes verbally agitated, and cannot be redirected for approximately 45 minutes"), the time of day patterns, any recent changes in sleep or appetite, and a direct question about whether medication could help ease distress during resistant phases.

Many caregivers hesitate to bring up medication because it feels like giving up, or because they worry about sedating their loved one. A good provider will walk you through the real risks and benefits and help you weigh them honestly. Asking for that conversation is an act of advocacy, not surrender.

Adjusting Expectations Without Abandoning Hope

There came a point in my caregiving journey where I had to redefine what "a good day" meant. Early on, a good day looked like connection — a conversation, a shared laugh, a moment of recognition. Later, a good day looked like: he was comfortable. He seemed calm. We sat together and the room was peaceful.

Adjusting your expectations isn't lowering your standards for care. It's recalibrating what care looks like in this new phase of the disease. And that recalibration is something you may need to do more than once.

When nothing is working, sometimes the most honest and compassionate thing you can do is stop trying to fix the moment and focus instead on making it safer and softer. You don't have to resolve the distress. You can simply witness it, stay present, and reduce any environmental contributors — noise, lighting, unfamiliar faces, rushed pacing — without requiring a particular outcome.

Presence without agenda is one of the most advanced caregiving skills there is. And it's available to you even on the days when nothing else is.

Protecting Yourself When the Hard Phase Extends

Extended periods of resistant or distressed behavior take a measurable toll on caregivers. Because you are human and not designed to absorb that level of sustained stress without support.

During the hardest phases with my husband, I have to become deliberate about finding moments — small ones, sometimes — where I can set down the weight for a little while. A walk around the block. Sitting in the car in the driveway before going back inside. Texting a friend who understands without needing everything explained.

These are the things that kept me functional enough to keep showing up.

If you are in a hard phase right now, I want you to think about where your pressure release valve is. Just one small thing that gives you thirty minutes of being something other than a caregiver. And if respite care is available to you, even occasionally, please consider it as seriously as you would any other medical intervention. It is that important.

You Are Not Failing. You Are Still Here.

On the days when nothing works, the measure of your caregiving is not your success rate with behavioral strategies. It is the fact that you are still there. Still trying to find a way through. Still caring enough to feel heartbroken when you can't fix it.

That is not failure. That is love in one of its most demanding forms.

Give yourself permission to stop searching for the right answer on the days when there isn't one. Give yourself permission to feel the grief of this phase without making it mean something about your worth as a caregiver. And give yourself permission to ask for help — from your medical team, from your community, from anyone who can hold a little of this with you.

You deserve support that matches the weight of what you're carrying.

Your Plan of Action

This week: Identify one specific behavior or pattern that has become consistently resistant to your current approaches. Write a brief, factual description of it — what it looks like, when it happens, how long it lasts — so you have language ready for a medical conversation.

In the next two weeks: Contact your loved one's medical provider and share that description. Ask explicitly whether there could be an underlying physical cause, and ask what options exist for supporting your loved one's comfort during these difficult phases.

This month: Revisit your definition of "a good day." Write down what it currently looks like, given where your loved one is in their journey right now — not where they were a year ago. Keep that definition somewhere visible as a reminder that you are measuring yourself against the right standard.

Ongoing: Name your pressure release valve and protect it. One small, consistent thing that is yours. Not a reward for getting through the hard days — a requirement for surviving them.

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Male Caregivers of Loved Ones with Dementia