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The relationship between Mom, her dementia and her grandchildren is beautiful, sad, and frustrating all at once. It’s like New England weather–complicated. And also like New England weather, it is ever changing, whether I want it to or not.

Shortly after seven o’clock on a recent Tuesday night, my eight-year-old daughter and I were in the midst of an exciting moment in Gregor the Overlander (highly recommended book, by the way), when I noticed she didn’t seem engaged in our reading.  Normally, she’d be rooted into my shoulder, looking at the pages as I read, interjecting comments and questions. She loves this book (as do I), but instead of following along, she was just staring at the bottom of her sister’s bunk.  Her wheels were definitely turning.

“What are you thinking about?” I asked.

“Nothing.” Emma replied.

“Are you bored by the book?”  

“No. I’m thinking about Mimi.”

“Oh. What about?” I asked, curious and a little nervous.

“Will she forget who I am?” she asked softly.

The question caught me like an unexpected blow to the gut. Like so much on this caregiving journey, I felt unprepared. I wanted to pat her on the head and give her an easy answer, but she was looking me right in the eye, and I knew I had to be as honest as I could be.

I took a deep breath and tried to collect myself. “That’s a really good question and the answer is complicated,” I said. “I’m going to tell you some things you should always remember about Mimi and her dementia. Sound ok?”

Emma nodded her agreement.

*Side-note*

Emma and her sisters are familiar with the word dementia. Both their living grandparents live with a form of it.  One of those grandparents even shares our home.  Though we’re unsure of how well they understand what dementia actually means, they know the word.

*End side-note*

“Mimi’s dementia is tough to figure out sometimes, like a puzzle.  But there are some pieces that you should always remember.”

Emma smiled and nodded and waited for me to begin.

I took another deep breath and waded in, knowing each piece would be harder than the next.

First

Dementia is a disease which affects Mimi’s brain.  It is not a choice. You probably notice that she behaves differently sometimes. She repeats herself a lot, doesn’t talk quite as much, forgets things, and doesn’t have the same energy.  She just isn’t quite the same Mimi that you remember, right?

Emma nods vigorously with wide eyes and a big smile which seems to tell me, “I know this part, Dad.”

But remember, it’s not a choice. Mimi doesn’t mean to behave that way and she definitely doesn’t mean to forget things. All of these changes are completely out of her control. It’s the disease that is doing these things, Mimi’s not choosing to do them.

Second

The Mimi you remember still exists and you provide her with more joy than you’ll ever know–Just. By. Being. You! (A kiss punctuated each of those words, and Emma smiled at me).  

Mimi might be hard to see sometimes, but she is there. Deep down inside, she thinks and feels just like she always has. And deep down inside, she’s still the Mimi you remember–whether you can see it or not.  Though sometimes, thankfully, there are little moments when the Mimi you remember comes out. Those moments should be cherished. They matter.

So it’s really important that we don’t stop talking with Mimi and playing with her like we always have. Because she enjoys, appreciates, and loves it (and us) just as she always has–even if her dementia prevents her from saying or showing it.

Emma nodded again, her eyes not so wide and her smile not so big.

Third

Yes, Mimi’s dementia might make it hard for her to remember your name someday.  It might even make it hard for Mimi to remember what you look like or sound like. But if (I couldn’t bring myself to say when) that happens, it’ll be her dementia forgetting. Not Mimi.

If you’re with her someday, and she can’t remember your name, or if you’re talking on the phone and, she doesn’t recognize your voice, it’s her dementia. It’s not Mimi. Never, ever, forget that. Because Mimi loves you more than you can imagine. Even if we can’t always see the Mimi we remember, she’s still in there. She’s the true Mimi.  And the true Mimi will never forget you.

Emma didn’t smile at all.  She was back to staring at the bottom of the bunk.  The wheels were still turning.

That was heavy.

As the last words left my lips, I let silence wash over me. Over us. Partly because I was emotionally drained, and partly because I wanted to see if what I was saying had registered. “But had it? How could it?” I thought to myself.  After all, I’m an adult and I still have to work hard at making sense of it all (or at least coming to grips with it as part of our family story).

After a minute or so, Emma looked at me and said “Ok, thanks Dad. Can we finish the chapter now?” I didn’t answer right away, just bathed in the silence a bit longer before saying, “Of course, honey.”    

As we read (her head once again rooted into my shoulder), I was distracted by our conversation.  I grappled with the uncertainty of it all. Did it help? Did it hurt? Was it too much? I hope it helped.

Mom, Dementia, Her Grandchildren, and Uncertainty

That’s the one certainty with Mom and her dementia–there is no certainty.  Ever. If there are keys to success on this caregiving journey, finding a way to become OK with the uncertainty has to be one of them. And when I zoom out and wrestle with the dynamic among Mom, her dementia, and her grandchildren, it suddenly becomes even more complicated and uncertain.  Which doesn’t seem possible. But it is.

Some moments, like seeing the way Mom lights up around the kids, or the way they shower her with the pure love of which only kids seem capable, are truly beautiful. Other moments, like when I lose myself in thought about how Mom’s missing what the kids are becoming, and they’re missing the Mimi they remember, bring immense sadness. And some moments are just a plain “Life isn’t fair!” brand of frustrating, like when I’m sick of being sad or full of self-pity.

Each moment is different, complicated, no matter how I try to sort out or explain the pieces.  Because it all changes in a blink, just like the weather in New England.

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