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Dementia Made Me My Mom's Mom, And It's Devastating. Here's Why It's Also A Gift.

The two of us were squeezed into in the kids’ bathroom upstairs. I pushed aside a Spider-Man washcloth and pulled a clump of long, dark hair out of the drain. My body ached to lie down in my bed, only steps away, to pull down the shades and hide under the covers. As we attempted to configure ourselves in the tiny, washed-in-a-yellow-from-the-’70s space, all of my usual anxieties about my mom were flaring like little fireworks continuously exploding, one after another, in my stomach. What will I do if she loses her balance? I wondered. Is my phone nearby in case I need 911? Can someone, anyone please rescue me from this moment?

These questions were not simply intrusive thoughts stemming from my frayed nerves. My list of worries had grown organically from past experiences. Once my mom tried to bring her suitcase on the escalator at Washington’s National Airport and, instead of riding to the top, tumbled backward, falling and hitting her head on the cement floor. Another year, the day before Thanksgiving, we were at my house when I noticed she had a bit of a drunken-like sway to her walk. When she couldn’t form the words to tell me what was going on, I guided her upstairs to lie down in the guest bed. As I stepped out of the room to get her a drink of water, she tumbled out of the bed, her small body twitching and one arm jerking out and about, like she was conducting an imaginary orchestra. That was the day of the 911 call and ambulance ride. 

These incidents and others like them have flooded into my life, the wake behind my mom’s dementia diagnosis. At age 31, pregnant with my second child, I was thrust into the “sandwich generation.” Both of us were far too young to be there, but there we were. While my friends have their parents come take care of their kids so they can get away for the weekend, my own mom has become one of my kids. My mom’s friends will sometimes confide in me that they understand what it is like to take care of an ailing parent. I stare in disbelief, wondering how the irony of the statement completely misses them. 

Nusbaum, as an infant, with her mother in 1979.

Courtesy of Rachel Nusbaum

Nusbaum, as an infant, with her mother in 1979.

I kneeled on the hard tile next to the tub. I asked her to put one of her hands on my head to stabilize herself and then put one of her legs up on the side of the tub. She swung her leg up, briefly swaying as she did. Her leg was tiny.

Our 5-foot-2 frames used to weigh exactly the same. Now she’s 25 pounds lighter than me and appears slight, fragile.

Earlier in the day, she had tried to persuade me to buy a regular razor blade, but I had spotted a small, pink electric one marketed for bikini lines that I now picked up and turned on. I got started down by her foot and gently pulled it up toward her knee. Her calf is the size of my 8-year-old’s. 

As I finished up the first leg and realized with dread that we’d have to get this leg back down and the other up, she said, “Who would’ve guessed we would get to the point where I would need you to shave my legs? I guess eventually you’ll be helping me with the toilet, too.” 

It was both an honest admission and an ominous foreboding. Recently my list of worries had grown to include public bathrooms. She kept getting stuck in them. She couldn’t find the toilet paper dispenser. She was unable to button her jeans. If I was having this much trouble gearing myself up to shave her legs, how could I possibly handle incontinence?

Why this woman of all the women? This woman who had given so much life to the world around her; the life that was now being stolen away, one task of daily living at a time.

My injustices lined up silently in my head. I have a 6-year-old and an 8-year-old. I can’t be expected to handle this, too, I thought. Why did my father, who could have been doing this task, die in the flaming burst of a massive stroke five years ago? And why this woman of all the women? This woman who had given so much life to the world around her; the life that was now being stolen away, one task of daily living at a time.  

The lineup was always followed by a deep swell of shame. Other daughters wouldn’t play the martyr. Better, more empathetic and caring people would recognize and be appreciative that she was still able to carry on conversations and recognize her grandchildren. You’ve played the victim long enough, the voice inside my head told me. 

Rachel Nusbaum, on her wedding day, with her mother in 2005.

Courtesy of Rachel Nusbaum

Rachel Nusbaum, on her wedding day, with her mother in 2005.

While I was lost in my thoughts, she gracefully switched legs on her own, her hand still pressed onto my hair, which was pulled up into a mess of a bun that needed washing. She was not denying the position she now found herself in, I realized, by stating out loud that she needed me. This was progress.

For years it seemed her primary strategy for coping with her diagnosis of dementia had been to vocalize that she could do everything herself, even while I was serving her coffee or pulling her out of the path of an oncoming car. In this moment, though, she saw a glimpse of reality and, in it, how much she’d lost ― and how much she now was forced to rely on me. Her voice wobbled with gratitude, and it wasn’t the hollow “thanks” tinged with resentment that she wasn’t able to do it on her own that I’d often received from her in the past. 

Hearing this, I felt my own gratitude swell within me.

I still need her to teach me. I desperately want to sink into my former daughter role, even just for a slim moment in time. She has faced this monster of a disease for the better part of a decade. Every doctor she has ever seen has essentially nothing to say about her prognosis, and yet she still shows up for life every single day.

My kids don’t have a grandmother who takes them out for ice cream or picks them up from school when I have to work late. Instead, what they do have is a model of grit and perseverance. They’ve observed how to get back up and keep going after setbacks. They’ve witnessed and been a part of difficult, honest family conversations. We are three generations facing heartache in real time, growing and learning together. That is the grace of this journey.    

In the end, I’m grateful that a savior didn’t rescue me from the task and that I could be the person shaving my mom’s legs. 

Rachel Nusbaum's mother with Nusbaum's daughter in 2010.

Courtesy of Rachel Nusbaum

Rachel Nusbaum’s mother with Nusbaum’s daughter in 2010.

Rachel Nusbaum is a partner, mom, daughter and sister who writes in pursuit of connection with herself and others. Rachel’s creative business, Orchid Story, was built upon her deeply held belief that sharing our personal stories of struggle helps us to find meaning and adapt.

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