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June 9, 2021

My Mother has Sprung a Leak—on the Grief of Dementia.

My mother has sprung a leak and it’s in her memory.

At first, it was obvious, but the details that were lost or confusing were insignificant. She wasn’t rattled by their loss, nor did any of us care that she had forgotten what the weather forecast was for that day.

Then the leak got a bit wider, and more escaped her. Like the word for absolutely would come out apa-loosy. But that was kind of cute and charming, even though it was obvious that things were changing in her mind. Then, without warning, different categories of life were being lost.

She forgot I moved from Los Angeles to Northern California, and had done so 13 years ago. Then we experienced a troubling additional loss when she recalled a detail about my divorce that turned cinematic in her retelling. Her version was a scary, violent recollection.

More recently, there is so much loss, so much leaking out, there are surprises everywhere, and it’s impossible to stay ahead of it. She’s lost my kids’ names and relation to her.

Sitting at her kitchen table recently, she sweetly asked how she and I knew each other. When I told her I was her daughter and I came to be with her for a while, she seemed totally surprised by that news. Delighted, but surprised.

My mother is now entering the late stage of her Alzheimer’s disease and it is a roller coaster ride of the scariest kind.

I am strapped in, which can feel a lot like being trapped.

It is beautiful, sometimes so beautiful you know there is no other place that offers that kind of perspective than at the crest of the ride, but then I plummet. I fly down so fast I completely forget I was at the top a moment ago. The descent is wicked. I want to scream, “Who built this thing?!”

Will we make it around the next corner? I check my belt. I don’t like this, after all. This is not for me. I want off, please.

But then we coast, which is filled with relief. We coast to the day’s end. I feel battered, frayed, lost. But there she is, sitting in her safe spot on the sofa. All she wants is a bowl of ice cream and her sense of all that’s happened on that ride has leaked out too and is gone forever.

My mom can hardly take care of herself anymore.

She can feed herself, but even the sequencing of fork in food, fork with food in mouth is more disjointed. Taking her medication is a trigger for her and she, in some sort of word salad, can still express that she “is her own person,” that she “wants to have a say over herself.” It’s heartbreaking. I watch her walking around the house to find my father with that look of fear in her eyes and it wrecks me.

I’ll take care of my feelings later, but all I want is to solve her fear. I hate that look and never want to think she’s scared in her own home. But then what is home to her now? She doesn’t think this is it.

As is typical with Alzheimer’s, she asks to go home all the time. She gets most scared when she suddenly thinks she’s responsible for driving herself “home.” We assure her that she is home, she is safe, that we love her, and then change the subject.

I have had lots of training at this as taking care of seniors with dementia is also my day job.

I am sort of saturated at the moment. To the point where each time I stumble for “what’s his name…he was in the TV show, Rosanne…John…oh, man…he was in The Big Lebowski, I can totally picture his…Oh! Goodman. John Goodman,” I momentarily imagine that is what it feels like. But as we say in the biz, dementia isn’t contagious, no matter how saturated you feel.

I have no great advice, no great insight for you as the reader. Just a harrowing emotional tale that I know so many others share with me.

The details are different but similar if you’ve lived through a loved one having Alzheimer’s. It’s impossible to lay out the path for you if you’re just entering this phase with someone you love. There is no one path. The only thing that is consistent for every family, is the recognition that anticipatory grief is real.

Most people think of grief as something that happens after a loved one’s death. But grieving can also occur before they die. That is anticipatory grief, when you anticipate their physical death.

My mother has already lost her memories, her sense of family, and her sense of belonging. Yet, there she is on the couch. She is physically still here, and that is surreal.

As mother and daughter, we have loved each other well. There is no doubt about that. We had been best friends all my life. We laughed so much together. She’s comforted me more times than I could recount. We both found the human condition fascinating and could have talked endlessly about the meaning of it all. Bathing her and putting her to bed recently was the greatest joy of my life, to give back a small percentage of what she has given to me. Because she’s given me so much.

She never, truly never, doubted me as a person forging my way in the world. She championed everything I did. She was a quiet force though, never the center of attention, only the center of mine. I leaned on her for her gentle wisdom.

One of my all-time favorites was after a breakup in my 20s, and in the midst of sobbing, she put her arms around me and just so softly said, “What you liked about him you will find again. What you did not like about him you will not repeat.” That’s it. Just like that, I stopped crying. Her strength was in her simplicity.

She is a lot to lose.

And no matter how well we loved each other, I wonder if I did enough. Did I ask her enough about her own life? Did I understand enough about her as an adult as a wife and as a mother?

I know some of her regrets, I know some of her heartaches, but I want to ask again. It is the empathy I inherited from her that makes me ask these questions to begin with. Which has me trying to recall her best advice on being a mother.

When I left the comforts of my midwestern upbringing to move to California, not knowing anyone, only with a dream in my heart, she said, “Of course I will worry about you, but I have to trust that I’ve said all that needs to be said so that if ever you find yourself unsure or needing me, my voice will be right there in your head.”

You are in my head, mother. And in my heart. And will be with me for every moment I have ahead of me.

You paved the way for me so beautifully, so effortlessly, and with such devotion that I am so proud to tell people about the relationship we had.

There will be more loss, of course. It only goes in one direction. And there is no salve, no stitch, or bandage that can hold in what little is left. It just keeps pouring out. Anticipating these final months is awful.

I know she would find it fascinating what is happening to her mind. Of course, it would make her sad, too, to know that she didn’t recognize us or wasn’t able to have autonomy over her life.

But if she could be wise once more, I imagine her saying something like, “I had Alzheimer’s? Wow, that is sad. I want you girls to know this though…I do think I did well as a mother. I gave it my all. And you are right, we were best friends, and it was all a joy. It went too fast, but if you ever need me, put your hand on your heart and I’ll be right there. I’ll be okay. Really, go do amazing things. I’m okay.”

And then, I hope she’d laugh. Because she loved to laugh.

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