I never imagined I would be here- gently helping my father and now my mother through the confusion, holding their hands as we navigate a world that no longer makes sense to them. My dad passed away 18 months ago and since then, my mom has been on her own, with daily support from my husband and me.
Caring for a parent with dementia is one of the most profound and complex experiences of my life. As a woman in midlife, I expected many transitions – empty nesting, career shifts, even physical changes. But I wasn’t prepared for this quiet, tender and demanding, sometimes all-consuming worry and needs. The parents who once held my world together needed me to help me hold theirs. And now I am deep in this need again with my mom. I have been on a six year journey to this point.
There is a unique grief that comes with dementia. It’s the kind that happens slowly. Little by little, I lost parts of my dad – not all at once, but in quiet slips. And now My mom has quiet and not so quiet slips. A forgotten birthday. A misplaced name. The way she sometimes looks at me with warmth, but not recognition. I grieve while she is still here. It’s a grief that doesn’t wait for goodbye.
There is also the deep emotional weight of decision making. Do we correct her, or let her believe it is still 1987? Do we push for independence or prioritize safety? Every choice feels significant, every moment carries more meaning than it used to.
And then there’s the exhaustion. Physical, emotional, and mental. The routines of care – medications, meal, appointments – are demanding. But the deeper weariness comes from the slow unraveling of someone you love. From answering the same question or having the same conversation for the 20th time in an hour. From keeping a brave face while your heart quietly breaks. From the inner frustration that sits just below the surface when your patience wears paper thin. For keeping a brave face while your heart quietly breaks.
Still, in the middle of the sorrow, there is also beauty. There are moments of unexpected grace: a shared smile, a remembered story, a forgotten memory shared with laughter. There is the gentle rhythm of presence…just being with her, offering calm when the world feels unfamiliar to my mom.
This journey has changed me. I’ve learned that love is not always grand gestures – it’s often quiet, consistent care. It’s learning to sit with discomfort or her anger. It’s releasing the idea of who someone used to be and choosing to honour who they are right now.
There are days that feel heavy…very heavy and almost unbearable. But even on those days, I try to remember this work, this time – this sacred care – is an act of love. And though it may not be easy, it matters deeply.
If you are walking this road too, know this: you are not alone. Your grief is valid. Your love is enough. And even in the quiet heartbreak, you are offering something powerful – compassion, dignity, and presence.
We may not be able to prepare for this role, but we can grow into it – with tenderness, with courage, and with grace.
Jackie
