My Nanny has dementia

My Nanny has dementia.

I’d suspected as much for quite some time now, probably nearly a year. She’d become especially moody, being rude or standoffish to my mom. In the past few months, the percentage of words she had to search for exceeded those she could easily string together. She started ghosting at family get-togethers, retreating upstairs to her room. That was another sign: she’s lived with my parents for 30 years, but she started acting as though she were an outsider. She began having trouble using her TV remote. A couple of months ago, after they got a new TV service, she virtually quit turning the TV on altogether.

The moodiness, anger, turning away from the things she used to enjoy: these things are a cover-up, I had thought. She’s getting confused or forgetting, and she’s using anger or disinterest to deflect the truth. The most devastating change was when she stopped knitting. She’d knitted for virtually her entire life; a beautiful, skilled knitter. We often told her if she sold her handmade baby layettes and blankets or the Aran sweaters she made, she could charge a fortune.

Last year, Noah asked if she could knit him up some hearty mittens. She obsessed over those mittens. For months. She’d stop, and start, rip it all out, try to start again, go on and on about how she needed to measure his hands. Just five years ago, she could’ve knit them up in a week or less. Finally she told mom to order him some mittens for Christmas this year, having given up.

She knit up a little blanket for Harry when he was born. Although it’s nowhere near the quality of the things she made for Ethan or even Oliver, it is of course still precious. It’s one of the last things she made.

All these signs piled up. But everything went downhill just after New Year’s.

Actually, I think we have Marcia Gay Harden to thank for the positive aspect of the turning point. A few months ago, Nanny was reading one of her magazines (she had me keep up her subscriptions of British ladies’ periodicals for her) and came across a story by Marcia Gay Harden about her mother and Alzheimer’s. Nanny shuffled down the hall to Mom’s room, the magazine in hand, held it out and said, “I think this is what’s happening to me.”

She cried. Mom cried. But her angry outbursts and moodiness improved. She wasn’t denying it anymore—or, maybe more accurately, she had an explanation for why things felt different.

Then, about two weeks ago, Mom heard Nanny making strange noises in her room.

Mom called me in tears, explaining that Nanny was weak, lying with her eyes closed, crying, saying she was so sorry about the baby, asking Mom not to leave her alone. My dad left work early. They called her doctor’s office, and the doctor’s office sent an ambulance. Nanny was admitted to the hospital with atrial fibrillation. More jarring was her mental state. She was more than just confused; she was divorced from reality. She could hardly speak. When she mumbled out intelligible words, they didn’t make any sense. She thought we were lying to her, hiding something from her. She kept going on about the baby. Maybe the daughter she had who was stillborn, we thought, or her nephew who had died decades ago as an infant.

The next afternoon, I went up to the hospital by myself to visit her. When I walked into her room, she was asleep, but in the way someone gravely ill is asleep: pale, mouth agape, the opposite of peaceful. A CNA was sitting in the corner; Nanny had been trying to get out of bed alone, so they were keeping watch.

I stroked her wispy white hair, and she woke up. Her eyes lighted up with recognition.

“Erin, is that you?” she asked, holding her arms out desperately, the way Harry does when he wants to be held.

“It’s me, I’m here,” I said.

She pulled me into her, her noticeably frail arms grasping at my shoulders, while she cried. “Can you take me with you?” she whispered into my ear.

I spent the next 45 minutes holding her hand, searching for a thread of conversation I could tug at, trying to fit the clues together. Eventually I got there: she thought Harry had died. She thought we weren’t telling her the truth. She had looked out her window one evening and saw Noah getting out of our car in the driveway, but he wasn’t carrying the baby. In her mind, she’d put together pieces of memories—Harry’s surgery, the many times she’s looked out the window and seen Noah' lifting Harry from the car seat—into a wonky jigsaw.

“I promise you, Harry is just fine,” I insisted, pulling up a photo of him on my phone. “This was him just this morning.”

“I can’t believe it!” she tearfully replied. “It’s like a miracle. Are you sure?”

“I promise you. Do you want me to bring him to visit?”

“YES,” she replied tartly.

So Noah and the boys and I went to visit her that evening, to prove that Harry and everyone were safe and well. She was in the hospital for eight more days.

My mom became an American citizen when I was a kid, but she says she’s still not sure how to deal with all these American things: Medicaid, Medicare, social security, the healthcare system, etc. In reality, most of us don’t know how to deal with these things. They’re sprawling and convoluted. She’s doing a good job of navigating it, though, as the person who is tasked with making Nanny’s decisions.

After several days of phone calls with several different case workers and healthcare professionals, Mom had a plan in place. Nanny would come home. Mom would essentially become her primary caretaker. A physical therapist and a nurse will come to the house a few times a week to help Nanny regain some strength and hopefully a bit more independence.

She’s been home for a few days now, and her confusion has definitely subsided to a much more manageable, less distressing baseline. But my parents had to secretly install a video baby monitor in her room, so Mom can hear her when she needs help to the bathroom, for instance, and make sure she’s not doing anything risky. Which, at the moment, is even just trying to get out of bed on her own.

Consequently, Mom’s had some insight into what’s happening in Nanny’s solitude. A lot of the time, her little cotton top head is visible sticking out from under a dozen blankets as she dozes. Sometimes she cries. Other times she prays or talks to herself. Once, Mom heard her say, “Maybe they’ve made a mistake and this is just a wee cold I’ve got.”

Last night we had a family powwow: my parents, me and Noah, my brother Kyle and his wife Kasey (who is a nurse practitioner). We all went up to visit her before we left, bringing the babies as well, who always brighten her mood. We told her not to think negative thoughts, tried to assure her nobody is thinking of her as a burden.

I lingered on for a few more minutes after the rest went down to gather children and get everyone in the cars.

“It’s like I’m living in two worlds,” she said. The fact that she was lucid enough to express this unsettling truth was actually reassuring.

When she was still in the hospital, I sneakily snapped a couple photos of her in moments when she looked like herself: the way she holds a hand against her cheek, resting her chin on her thumb; when she raises her eyebrows and smiles, her face open and bright, when something funny or sweet happens.

nanny in the hospital 1
nanny in hospital 2

I felt a little weird taking secret pictures, but I also knew these moments of the old normality will become fewer, and more precious. I want to catch them, hold them loosely in my hand and commit them to memory. There’s no use trying to hold fast to these moments; she will slip away in the end. We all will.

Ethan went on a snow-tubing trip with his cub scout pack today. He’s tall and skinny, his features free of all baby fat at nearly 11 years old. Last night as he lounged in a chair, playing on his phone (my old phone, which we gave him for Christmas), I launched myself upon him. I rubbed my cheeks on his head, buried my nose in his scalp, twined my fingers through his silky hair, singing a made-up bittersweet tune about my eldest baby’s first snow-tubing trip. He laughed and squirmed beneath the weight of my arms/love.

the three boys

Harry, just turned a year old on the 11th, has become an accomplished crawler. I study his fluid, almost cartoonish crawling motion. I drink in his scent (which is warm love cookies fresh from the oven), the feel of his chubby feet in my hands, the sharpness of his tiny fingernails, while he nurses. He’ll be my last baby and I’m doing my best to treasure each milestone. I’ve never understood Einstein’s theory of relativity more than during the hundreds of times I’ve been up in the night when compared to the light speed of infancy.

harry birthday
teeny harry
year old harry

While the baby napped this afternoon, I sat and watched through the front window Oliver and Noah play tennis in the driveway. Oliver, our little athlete, suggested they set up his portable tennis net he got at Christmas, since we watched the Australian Open women’s final this morning. “It’s tennis season!” he said. Oliver, my kindergartner, who daily unlocks more secrets of literacy even as his little voice is still accented by the funny little quirks of a person knew to speaking English. He’s only been fluent for a few years, after all.

oliver writing

I’ve written before about time traveling. The actor/director Mark Duplass recently posted a little Instagram video about just this very thing. I find myself moving through time like a swimmer: back and forth, back and forth, indulging in the past, imagining the future. Nanny’s mind does the very same thing; the difference is, I have the ability to navigate where I am in the flow, while sometimes she does not. I’m also doing my best to cherish this control while I have it.

Lately, I’ve gotten in the habit of noticing people older than I am and turning back the time dial to imagine their teenage selves. If you look closely, you can often see what middle aged people looked like as kids. Tighten the skin up, smooth the jawline, shine up the hair (and make it all the color that the roots are now). Most importantly, make the eyes brighter.

Conversely, sometimes I can see the much older version of my boys in their little faces, when they hold a certain expression or relax a certain way. Or I look at my niece Evie and Harry playing together, communicating nearly wordlessly like little primates, and I imagine how they’ll be when they’re grown. I’m watching their relationship at the time of its planting.

This time traveling trick of mine dovetails with the melancholy that’s been decorating my thoughts lately. It’s like Eleanor said in an episode of The Good Place: all humans are aware of death. So we’re all a little bit sad all the time.

All the beautiful moments pass, just as the painful ones do. They’re all precious.

me and the boys