5/20/2025 In Memoriam: Still Her Daughter – Reflections on Dementia, Caregiving, and Letting GoRead Now![]() Caring for a loved one with a serious medical condition is hard. Caring for a loved one with dementia is something else entirely. Unless you’ve walked in a caregiver’s shoes, you can't fully understand the heartbreak, the exhaustion, or the emotional layers that come with being the primary support for someone slowly slipping away. I know this intimately. I was that daughter. The full-time caregiver. The mother of four—one still in diapers—trying to hold everything together while watching my own mother change in front of me. This is a reflection I began while my mother was still living with us, and now, I share it again in her memory. On this anniversary of her passing, I’m honoring not just who she was, but everything we lived through together during her illness. My mother had Frontal Temporal Degenerative Dementia, a particularly aggressive and personality-altering form of cognitive decline. It’s not just memory loss. It’s a complete rewriting of who your loved one is. Truth One:I didn’t always want to do this. I was angry. Tired. Emotionally divided. Raising four small kids while caring for a declining parent stretched me to the edge. I constantly questioned myself: Am I being a good mom? A good daughter? A good person? Truth Two:Placing your parent in long-term care is not a betrayal. I’ve learned that honoring your parent sometimes means making the hardest decisions—not out of convenience, but out of love. My mother deserved safety, structure, and skilled support. Letting go of being her daily caregiver didn’t mean I stopped being her daughter. It meant I stepped into a different kind of role—one that still held love, but also held boundaries. Truth Three:Even with all the education and coping tools, I still hit my breaking point. There was a moment—a true collapse—when I ended up in the ER with a nervous breakdown. Between motherhood, internship, and caregiving, I broke under the weight. And I say this not with shame, but with clarity: even caregivers need care. Truth Four:She wasn’t “still in there.” One of the most painful things people say about dementia is, “Your mom is still in there somewhere.” But she wasn’t. Not in the way I remembered her. The woman I could talk to, laugh with, share stories with—she was already gone, long before her body gave out. It’s okay to say that. It’s okay to grieve the living. Dementia doesn’t steal in silence; it rewrites your parent while you watch. Truth Five:I finally learned to say out loud, “I’m not okay.” I didn’t enjoy this. I didn’t want this. But I did it. And I know that honesty—raw, unfiltered honesty—is what saved me. I stopped pretending I could handle it all. I started naming what I felt: grief, guilt, rage, loneliness, fear. I remember when a friend gently asked, “Are you worried you won’t visit your mom once she’s in the nursing home?” And the honest answer was yes. Not because I didn’t care, but because seeing her decline hurt so deeply, and because I was so stretched, so worn, I could barely keep up with my own life. To the adult child who hasn’t visited their parent in a while: I see you. To the caregiver crying in the car after each visit: I see you. To the person who knows their parent’s body is alive, but their essence is gone: I see you. In MemoriamTo my mother, On the anniversary of your passing, I remember the fierce woman you were before dementia took hold—and I honor the version of you I cared for when you could no longer care for yourself. You trusted me in your most vulnerable season, and though I stumbled and grieved and broke more times than I can count, I never stopped being your daughter. You were deeply loved. You are still deeply missed. And I am still learning how to carry both those truths at once.
1 Comment
Shelley McDonald
5/20/2025 04:51:00 pm
I see you, I hear you. Being a caregiver is very hard. You did it so well and also raised your young children well. Love you you are a very strong, loving, caring daughter !!!
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