It's Okay to Be Just Okay
Yesterday, your husband put on his coat without any trouble. Today, he seems confused by the same task. You offer a little direction, but he becomes frustrated. You try explaining it another way, and that doesn't help either.
But he did this yesterday.
If you've cared for someone living with dementia, you probably know that feeling. Just when you think you've figured something out, things change.
In our caregiver support groups, we often talk about how inconsistency can feel like the only real consistency of dementia. Someone may be talkative and engaged one day, then struggle to communicate the next. They might manage a familiar activity in the morning and need help with it later that afternoon.
We spend a lot of time helping caregivers adjust their expectations for the person living with dementia. But there's another question worth asking: What expectations are we placing on ourselves?
The Challenge of Inconsistency
We like knowing what to expect. We develop routines, learn what works, and make plans based on past experiences. When something goes well, we naturally hope it will go well again.
Dementia makes that difficult.
Changes in memory, communication, attention, and the ability to complete everyday activities can affect how someone responds from one day to the next. Fatigue, discomfort, distractions, and the time of day may also influence what a person is able to do.
It's frustrating when you can't count on something that worked yesterday. You may wonder whether you're giving the wrong instructions or missing something important. You might even begin questioning your own judgment.
Routines can help. Familiar activities and predictable schedules often provide comfort and make daily life easier. The Alzheimer's Association offers helpful guidance on creating a daily care plan, including how to build flexibility into routines as needs change.
One important distinction: a sudden or significant change in confusion, alertness, or behavior should not automatically be attributed to dementia. Infections, medication effects, and other medical problems can cause abrupt changes that require urgent medical attention. The NHS explains why sudden confusion requires immediate medical assessment.
What About Our Own Expectations?
Think about everything you expect of yourself as a caregiver.
You want to be patient, even when you're tired. You want to recognize what your loved one needs, even when communication is difficult. You want to remember the strategies you've learned and use them at the right time.
You probably have expectations about how the day will go, too. Maybe you have an appointment to get to, errands to run, or a dozen things waiting for your attention.
Then getting dressed takes 45 minutes instead of ten.
Now you're running late. Your loved one is frustrated. You're frustrated. And even though you understand that dementia is affecting the situation, you may still find yourself thinking, I should be handling this better.
I wonder how often we add to our own stress by expecting ourselves to manage every situation with patience, creativity, and grace.
In one of our support groups, we talked about giving ourselves permission to have an ordinary day. We don't always have to knock it out of the park. It's okay to be just okay.
That doesn't mean we stop trying to provide good care. It means recognizing that we're human and that some days are going to be harder than others.
Learning to Adjust
At Project Present, we use improvisation exercises to practice handling the unexpected. In an improv exercise, another person may say or do something you weren't anticipating. You have to pay attention and respond to what they've given you. If you're too focused on what you planned to say or do, you can miss an opportunity to connect.
That same willingness to adjust can help in caregiving.
Think about the coat again.
Maybe your husband needs more time to understand what you're asking. Perhaps holding the coat open is more helpful than explaining what to do. He might be able to put one arm into the sleeve independently but need assistance with the other.
Or maybe he's tired and needs a break.
If something isn't working, pause and ask yourself, What is possible right now? Maybe the task needs to change. Maybe the timing does. Or maybe it's your expectation of how things should go.
We also want to be careful about the assumptions we make. If someone struggles with an activity today, that doesn't necessarily mean they won't be able to participate tomorrow. Continuing to offer choices and opportunities for independence is important, even as the amount of assistance someone needs changes.
The Alzheimer's Association offers practical ideas for adapting activities, including simplifying tasks, helping with difficult steps, and trying again later.
Giving Ourselves Some Grace
Caregivers often know what they should do. They know patience is important. They've learned strategies for navigating difficult moments. But knowing those things doesn't make them easy to do every time, especially when you're tired or already feeling overwhelmed.
Think about what you would say to a friend who had a difficult caregiving day. Chances are, you'd offer some understanding. You'd recognize how much they're managing.
We can offer ourselves that same understanding.
There will be days when you find a creative solution and days when you need to ask for help. There will be moments when you respond with patience and others when you wish you'd handled things differently.
You don't have to get every moment right to be a good caregiver. And you don't have to navigate caregiving alone.
Project Present's free caregiver support groups offer opportunities to share experiences, learn from one another, and discover new ways to navigate the challenges of caregiving.
