Presence Over Perfection: What Caregiving Keeps Teaching Us
There’s something that comes up again and again in our caregiver support groups, no matter who is in the room, what stage of caregiving they’re in, or how different their stories may look on the surface:
We want certainty in a situation that rarely offers it.
Caregiving asks us to navigate unpredictability every single day. Plans shift. Emotions change quickly. One moment can feel calm and connected, and the next can feel confusing, exhausting, or heartbreaking.
During our recent support group, we talked a lot about the idea that “the only predictable thing is the unpredictable.” As frustrating as that can be, there’s also freedom in accepting it.
Not giving up.
Not lowering your standards.
Not stopping caring.
Just loosening the grip a little.
Sometimes the most powerful thing we can do is pause, take a breath, and stay rooted in the present moment instead of trying to control what comes next. Caregiving is rarely about executing the perfect plan. More often, it’s about connection.
Presence creates connection.
And flexibility, truly, becomes a superpower.
The Kind of Denial We Don’t Always Understand
One topic that resonated deeply during our session was denial in Alzheimer’s disease and other dementias.
Many caregivers struggle when a loved one insists nothing is wrong, even when the symptoms feel obvious to everyone around them. It can feel confusing, frustrating, and at times even personal.
But often, this isn’t psychological denial.
It’s something called anosognosia, a neurological condition caused by changes in the brain that impair self-awareness. In other words, the person genuinely may not recognize their own cognitive changes. They are not being difficult or stubborn on purpose. Their brain is no longer accurately processing what’s happening.
Understanding this doesn’t necessarily make caregiving easier, but it can help us approach these moments with more compassion and less conflict.
Sometimes the goal is not convincing.
Sometimes the goal is connection.
If you’d like to learn more about anosognosia and dementia-related denial, these resources may be helpful:
Small Reminders That Matter
A few simple pieces of wisdom surfaced during our conversation, and honestly, they felt worth repeating:
Stay just in today.
Go for a walk.
Take a few deep breaths.
Release the need to have everything figured out.
Let the moment guide you.
These things may sound small, but caregiving is often built on small moments, small resets, and small acts of care toward yourself.
Resources That Can Help
We also shared information about the GUIDE Program (Guiding an Improved Dementia Experience), a Medicare pilot program designed to support both individuals living with dementia and their care partners. Programs like this can provide valuable navigation, support, and resources that help families stay connected and supported at home longer.
To learn more about the GUIDE Model:
We also discussed how hospice can be a meaningful support much earlier than many people realize. Hospice is not only for the final days of life. It can be an incredible resource for families navigating serious illness and caregiver stress.
Helpful hospice caregiving resources:
The Importance of Community
One of the most meaningful parts of our support groups is the reminder that no one has to navigate caregiving alone.
Support groups create space to:
ask hard questions,
share practical tools,
release guilt and isolation,
and simply be understood by people who “get it.”
Connection matters, especially in seasons that can feel lonely.
If you are looking for additional caregiver support resources, these organizations are wonderful places to begin:
Laughter Still Belongs Here
Even in hard seasons, there is still room for laughter.
In fact, we’d argue it matters even more.
We always like to end our support groups with a couple of jokes because humor helps us breathe again. It reminds us we are human. It reconnects us to ourselves and to each other.
So here are this session’s favorites:
Why did Beethoven get rid of his chickens?
Because all they ever said was, “Bach, bach, bach.” 🤣
What’s the difference between a poorly dressed man on a unicycle and a well-dressed man on a bicycle?
Attire. 😂
