“Mom needs to move in with us.” Despite being a relatively intelligent person, and despite having experienced my own grandfather’s dementia as he aged more than a decade earlier, I had no idea how much that sentence would completely change my life in a myriad of ways. On the day that my husband came home and told me that his mother needed to move in with us, she did not yet have an official diagnosis, but we knew, in the way that you know the smell of the sky before it rains in the summer. Recent visits had found lunch meat in silverware drawers, piles of undone laundry, and a lingering pall of loneliness that could not be mistaken.
We moved her in quickly. In the two weeks after the decision was made, a room was cleared, walls were painted, and furniture was moved. Naively, we believed she’d want to spend much of her time alone and our lives would not be upended. This did not turn out to be the case. And a pandemic had just begun. Quickly, we learned that we had, perhaps unwittingly, assigned ourselves to round-the-clock support of a questionable reality, shifts in and out of lucidity, mood swings, anger, despair.
The thing that outsiders do not realize about dementia is that it’s not just about memory. The loss of memory is, indeed, the easiest aspect of dementia for caretakers to handle. While it is not fun answering the same question eight times in as many minutes, it is also not difficult. No, the difficulty comes with the displaced anger for things out of your control, and the sadness about things you wish you could save them from.
In the months that followed, my husband became the consummate caretaker. Always good in a crisis, it became his mission to keep us all safe — from the pandemic as well as from the darkness that might cloud the mind. I imagine that having another adult living in our home would have challenged our marriage even under the best of circumstances. But those we found ourselves in were not the best. The government was begging us to stay home. Even the holidays were over Zoom. There was nowhere to go, and the world inside our home felt increasingly small.
Since 2020, I have read nearly every article ever written on being a caretaker for a person with dementia, so I can say with confidence that my husband and I did nearly everything wrong. Our boundaries were flimsy, at best. We took things personally. We argued.
As I write this, my mother-in-law, the tiny woman who took up so much space in our life, has been living in a nursing home for three weeks. Our house is quieter. The dogs miss the way she would sneak them treats at the dinner table. I miss the bizarre old songs that she would ask Alexa to play. But when we see her, she is happier. She is healthier. And so are we.
By Vanessa Hutchison