My mom died in October of 2024.
In the time since, I have found myself talking with families, again and again, about grief. Not the kind that arrives all at once, but the kind that comes in waves, in stages, in forms you never see coming. Because when someone you love lives with dementia, you do not grieve them only once. You grieve them in pieces, over years, long before you ever say goodbye.
I know this because I lived it. And lately I have been learning that I did not understand it nearly as well as I thought I did.
The First Grief
The first grief began long before my mom ever moved to memory care.
It is the grief of watching the person you love slowly disappear while she is still sitting right in front of you. The mom who comforted me no matter how old I got. The one I could call about anything at all. Piece by piece, that version of her began to slip away, and I mourned her even as I held her hand.
For those who have lost a father, it may be the dad you always went to for guidance, the one with a steady answer to every hard question. You reach for him, and somehow he is not quite there anymore.
This grief is strange, because the world does not recognize it as grief. There is no service for it. No casseroles arrive at the door. But it is real. It was hard, it was painful, and for me it lasted years.
The Second Grief
When we received her acute leukemia diagnosis and she entered Alive Hospice, that first grief did not lift. It only deepened. I thought I already understood what I was feeling. I thought I had done the hardest part of my grieving years ago. I did not expect anything to change when she actually died.
I was wrong.
When she slipped away, as I held her hand and opened my whole heart and watched her breathing slow, a different grief began. Still hard. Still painful. Still so very real. But also final, in a way I had no words for. So sad, and so complete.
There is a club you join when you lose a parent. A tribe. And until you are in it, there is simply no way to explain the feeling to you. I could not have understood it beforehand, no matter how many times I had already grieved.
For me, it was devastating and it was beautiful. Devastating because she was gone. Beautiful because I believe, fiercely, that her soul is whole again. That she is once more the mom I have loved my entire life, everything she lost given back to her, fully intact.
Almost two years later, I still talk to her every day. Just last week, I cried while telling my daughter about the time Mom came to visit me in college. She is still here, in all the ways that matter most.
Brutal and Beautiful, at the Same Time
The author and activist Glennon Doyle gave me two words I have held onto ever since.
The first is brutiful. Brutal and beautiful, braided together, because so often the two arrive in the very same moment. The second is perspectacles, perspective and spectacles, the idea that we can change the lens we are looking through and, in doing so, see our whole lives differently.
That is what grief has asked of me. To hold the brutal and the beautiful in the same hand. To change my lens, again and again, and to keep growing even through the loss. My mom would have wanted that for me. She always did.
The Third Grief
For a long time, I told families there were two griefs. The slow goodbye, and the final one.
Then, not long ago, a daughter corrected me. Not my own daughter. The daughter of one of our clients.
Her mother had been living with cognitive decline for more than ten years. And for the last three of those years, she did not recognize her children at all. More than that, she was certain she had never had any. She would say it out loud, plainly, that she had never married, that there were no sons and no daughters. The entire family she had built across a lifetime had quietly vanished from the story she told about herself.
That daughter knew a grief I had never named. The grief of standing in front of your own mother and being a stranger to her. Of loving someone with your whole heart who no longer knows that you are hers.
I have not lived that grief. My mom knew me until the very end, until the leukemia took her. I have come to believe that the leukemia was a gift, given straight from God, sparing us both that particular sorrow.
But that daughter was right, and I have thought about her words often since. There are more than two griefs. I have stopped saying that there are only two. And I suspect that somewhere down the road, another grief I cannot yet imagine will reveal itself to me, the way they always seem to, in their own time.
If You Are Somewhere in These Griefs
I share all of this not because I have grief figured out. I clearly do not. None of us do.
I share it because if you are living inside one of these griefs right now, the slow disappearing, the final goodbye, or the day your mother looks at you and does not know your name, I want you to know that you are not imagining it. It is real. Every version of it is real. And you are not carrying it alone.
This is the tribe now. And we hold one another here.