A poem was recently shared with me called “If I Get Dementia.” It was written by Rachael Wonderlin. The poem is a collection of requests for loved ones to remember if the writer were ever to develop dementia. Through simple but deeply meaningful statements, it offers guidance on how a person living with dementia hopes to be treated.
One line in particular stands out: “If I get dementia, ask me to tell you a story from the past.” Another powerful reminder comes at the end of the poem: “If I get dementia, remember that I am still the person you know and love.” In total, the poem contains 22 thoughtful reflections that speak to the emotional and human side of caregiving.
Having cared for someone with dementia myself, and after working with many families navigating similar journeys over the years, I found the poem incredibly moving. It serves as a powerful reminder that every person, regardless of age or illness, wants to feel valued, respected, and cared for with kindness. Dementia may change memory, communication, and behavior, but it does not erase a person’s humanity, identity, or need for connection.
At the same time, caregiving can be emotionally exhausting. When a loved one with dementia behaves in ways that seem confusing, repetitive, or hurtful, it can be difficult to respond with patience every single time. Caregivers often carry an emotional burden while trying to meet changing needs. Feelings of frustration, sadness, guilt, and fatigue are common.
Senior Concerns recently hosted its annual Caregiver Recognition Day. Part of this event included a panel of caregivers speaking from their own experiences.
One caregiver shared a perspective that resonated deeply with many in attendance. She shared that she sometimes gets angry and frustrated with her loved one. Rather than feel guilt or resentment, she gives herself space to vent those feelings and then immediately forgives herself. This was her advice to others in similar situations.
She said that by immediately forgiving herself, she feels free of regret and is able to move forward with more kindness toward both her loved one and herself.
Forgiveness is a powerful and necessary tool for caregivers. Forgiveness does not mean pretending mistakes never happened, nor does it excuse moments we wish we had handled differently. Instead, it is the intentional choice not to carry those moments forward in a way that damages our well-being, relationships, or future actions. It creates space for growth, grace, and renewed patience.
No one can be a perfect caregiver, just as no one can be a perfect parent. Caregiving situations are often complex and unpredictable. Needs can change quickly, and many challenges have no clear or easy solution. Despite our best efforts, there are situations we cannot fix.
Instead, each person can only do the best they can and approach their situation from a place of love and care.
Perhaps one of the most meaningful exercises we can do is to consider what would be included in our own version of “If I Had Dementia.” How would we hope others would speak to us, comfort us, or care for us? What would matter most to us if our memories began to fade?
Reflecting on these questions can deepen our empathy and help us see caregiving through a more compassionate lens. It reminds us that behind every diagnosis is a person who still longs to feel safe, understood, respected, and loved.
Martha Shapiro can be reached at Senior Concerns at 805-497-0189 or by email at mshapiro@seniorconcerns.org.
