In second grade, I did a book report and art project on Harriet Tubman. She enthralled me. How could anyone be so fearless? I was too young to understand she must’ve been terrified, unaware of the difference between courage and fearlessness.
Courage is feeling the fear and doing it anyway, I found out years later as I stood next to my dad’s bed in the ICU, reassuring him the C-PAP was his flight mask and he needed to keep it on, even as he begged me to help him.
School project completed, I dreamed I was Harriet Tubman. My only chance for survival was making the bloodhounds lose my scent. The moonlight made the swamp, just a step away, look at once more inviting and more scary. My legs were frozen in place as the hounds howled in terrifying chorus, the hunters closing in on me.
I woke up screaming.
The feeling of paralyzing terror is still vivid 40 years later. Awful as it was, it was just a bad dream. It wasn’t precisely the kind of fear I feel now. I’m thinking now of the kind of fear that accompanies a sneaking suspicion. The vague yet unmistakable queasy feeling that comes with a mounting stack of evidence things aren’t as they should be.
She keeps forgetting names, I think as we get off the phone. The other part of my brain quickly jumps in. Of course she remembers my husband’s name. It’s normal she refers to him as “my son-in-law” and “that special guy of yours,” right? And even if she only ever mentions Chiquita by name, she still remembers I have more than one dog. She says “furbabies,” plural.
So what if she keeps calling the “new burger place”–open a couple years now, at least–“The Hobbit” instead of “The Habit.” And what kind of stupid name is Menchies, anyway? Munchies definitely makes more sense for a frozen yogurt joint. See? It’s not a big deal, I berate myself.
My brother and I have created a bicoastal scheduling miracle, arriving for a visit home at the same time. Mom is thrilled the three of us are together, like this. None of us speak of our most recent life-altering together times. Not the time when Brilliant Sister-in-Law got screwed out of the second half of her life. Not the time Dad was in the ICU, hanging on til we showed up so he could say goodbye.
This time we’re together only because we love each other. And yes, maybe my brother and I have an ulterior motive, too. We lay out our respective (and strikingly similar) concerns about Mom during the long drive from LAX to our rural hometown. We listen closely to each other and we flirt up close to validation. Mostly, we deflect because otherwise, God. What if that makes it real? Still, we sketch the broad outlines of a plan.
Fear simmers within me the closer we get to the house. And then we’re there, and it’s all okay.
Mom gets lost in a story about going to the doctor. At least, I think it’s about going to the doctor. I’m confused when she mentions “the trip,” but maybe I’m not really paying attention. We’re across from each other, face-to-face, but still. Maybe I drifted.
Close listening is a crucial skill in my line of work. I’m trained to do it. It helps me pick up subtleties, nuances, threads requiring further investigation. But I could have drifted.
“The doctor had me get on the special table that leans back.”
“The exam table?” I clarify. She readily agrees.
My heart rate slowly comes back within normal range as she tells me about her new doctor. It’s her third this year. She’s had two doctors in the last 20 years, one lost to retirement, the other to promotion.
Mom likes this new doctor. “She’s a good one,” Mom says, echoing the phrase my grandmother–her mother–used when she could no longer remember names, but liked someone. “I could really tell when she was giving me the test.”
“What kind of test was she giving you, Mom?” A dumb MMSE, or a Mini-Cog? I wonder. Maybe a SLUMS? A tiny spark of hope dances across my brain. Maybe this doctor is a good one! Maybe she’s noticed something too. Maybe the good one’s got this handled and my brother and I can exhale. Or relax. Or whatever it is you get to do when hypervigilance is excessive but relaxing is a bit much.
“The kind a real doctor does!” Mom reports. “I haven’t had a doctor give me a test like that in years. That’s how I knew she was a good one. She had me put on the gown and then touched me all over. Doctors don’t give tests like that anymore.”
“Oh…an exam,” I say, as Mom nods in agreement and my stomach flips. This isn’t raw terror. Bloodhounds aren’t chasing me. This is more subtle: it’s a Hitchcock.
I’m floating in the sweet in-between of awake and asleep. Madame Defarge emerges, and she’s coming for me. She’s pulling out for closer inspection every piece of evidence I’ve subconsciously filed away.
She leads me on a tour of websites I landed on while searching for an explanation of symptoms, as though I had no earthly idea of possible cause. You’ve witnessed things, she reminds me. By themselves, maybe they’re no great shakes. But stacked atop one another, put in a single pile? Thinking of them makes your stomach clench and roll, doesn’t it? You proudly say you’ve worked with over 1,100 people living with dementia, but you’re not sure what’s happening here? Mme Defarge mocks as she knits.
I feel a growing sense of unease as I hear the same story twice in 24 hours, Mom clearly unaware it’s a repeat. Except those times she is aware, announcing midway through, “Like your grandpa said, I’ll tell it again,” mangling his signature opening to every story: “You may have heard this story before, but that’s okay. I like it, so I’m gonna tell it again anyway.”
What if I have a hammer, so I only see nails? I force myself to repeat this silent mantra as I’m repacking my suitcase late the last night. My brother and I are due to leave early in the morning. I ask Mom if the clothes she offered to wash for me yesterday morning are in the dryer. She hasn’t folded them and left them on top of my suitcase like she’s been doing for the last 25 years, every time I come home to visit.
”Your laundry?” she asks with a blank look. “Did you want me to wash it for you?”
No, goddammit! I think. What I want is for you to be okay, for nothing to be wrong, for this not to be happening. I want my brother to be standing here in real time with me and seeing for himself. And while I’m wishing, it’d be great for Dad to be here, too, because he always knows what to do.
Why is this laundry situation worse than very early this morning, when her usual sweetness was swallowed up by a blast inferno of sudden anger? It’s not, but I’m mentally running around in circles like a 3 year-old hopped up on juice boxes, singing lalalala, I can’t hear you! at the top of my lungs so I don’t think about what happened this morning.
The fight-or-flight response theory has a new name. It’s now officially the fight-or-flight-or-freeze response. It’s been updated to accommodate people like me, people who, when they don’t see something coming, stand there and drool.
It’s what we do when our heart and factions of our brain are competing, creating a sensory overload. At least, we look frozen to those around us. Inside, we’re listening to the riot of competing voices.
Today seemed like a good day, we reason. I didn’t notice anything, your sister says. Everyone forgets a name now and then, your brother reminds you. You’ve been a nervous Nellie since you were a little kid, your aunt tells you.
This all sounds good. Much better than the terrifying stuff your own brain is spitting out.
We want to believe it, because it feels better. So we do. We believe it right up til that moment we’re drifting off to sleep, all our clever defenses and brain distraction games put away for the night. Bonsoir, Mme Defarge!
My brother saw an opportune moment in a conversation shortly after we arrived. He seized it. I–her health care power of attorney–wasn’t part of it. Would Mom say something different to me, because of my role? Who knows?
What we do know is what she told him: If anything is wrong with her, she doesn’t want to know. But nothing is wrong with her. But if something was, she’d want to live in the continuing care retirement community where she used to work. But don’t worry, nothing’s wrong.
My brother is persistent. Would she want us to guess what she’d want if she couldn’t tell us? Would she want to put us in that position? He extracts a promise from Mom she’ll get cognitive testing.
On the way to the airport, I’m again in awe of my brother. Not for the first time, I marvel that he manages to pull himself out of bed each morning. His HUH, huh-huh-huh laugh, quickly followed by, “Ya know?” never fails to amuse or confound. I don’t understand how his body can still know how and when to make those sounds after all he’s been through.
It’s against this backdrop I dumbly nod along as my brother says, “I know you’re an expert on this, but…” in every conceivable configuration.
But you said you had concerns a few years ago, and nothing bad has happened, so is this really a thing?
But Mom said she doesn’t want to know if anything is wrong with her.
But Mom wants to live in the community where she used to work, if anything is wrong with her.
But Mom should actually get a diagnosis.
This last but is in response to me telling him I pulled up various tools I use when I’m doing assessments, and the things we’re noticing look consistent with Mild Cognitive Impairment. I agree, she should get a diagnosis, I tell him, wondering why he’d think I’d think otherwise.
Because no matter what else, I’m still his little sister? Whatever the case, I’m mainly wondering if he’s taking this seriously, or blowing it off. I go back and forth.
He’s my big brother. He would validate me if we were facing a problem requiring attention, right? Like that time I called him to repeat verbatim what Mom said was happening with Dad in the ER–words I understood as English and yet made no sense to me–and instead of telling me to stop freaking out, he told me he’d booked a cross-country flight while we were on the phone and he’d meet me in California.
That’s when I knew it was serious, when I understood I had to know what I didn’t want to know but already knew: when my brother who doesn’t live in the medical universe told me to get wheels up ASAP. Dad died less than 24 hours later.
This must be the same. If it was serious, my brother would know. He’s kind of concerned, but not really.
My flight is changed from SFO to SJC. Then it’s delayed twice. It’s reminiscent of the doomed attempt Mom and I made to get to Brilliant Sister-in-Law’s memorial service a year ago.
In my whole childhood, I saw Mom get angry once. Adult me completely understands and totally endorses Mom’s yelling, “Stay outside!” and locking both the front and back doors to keep us out, having already ignored multiple polite requests and increasingly serious pleadings to stop running in and out of the house in wet bathing suits, easily able to drown out Banshees with our own high decibel squeals, letting the dogs in and the air conditioning out, time after time after time.
Trying to get to the memorial service, though? Mom got seriously angry four times. Once on the phone before we met up, hanging up on me for a reason I no longer remember, refusing to answer calls or texts. I had to get my aunt involved to ensure Mom hadn’t suddenly keeled over.
I got an earful twice in the airport. My mom has such an essential loveliness about her, a warmth, a sweetness, that people comment on it. Service professionals can’t bear for my mom not to get exactly what she wants. She’s that nice.
But in one episode at the terminal, Mom directed such (loud) viciousness at me that the lady at a charging station across from me asked if Mom was drunk as she stormed off. When I said she doesn’t drink, the lady asked, “Well, are you alright?”
Once back at Mom’s after the trip that wasn’t, she opened a new line of attack. Tears streaming down my face, she kept going. I was choking on heaving sobs and flying snot when I finally got up and walked outside to call the airline about bumping up my flight home by two days. Mom kept going.
But now it’s happened five times in two years and I’m the target. I don’t think it’s just me being overly sensitive.
Two weeks later, my brother tells me Mom just called to rip him a new one for having the audacity to bring up cognitive testing when we visited. He says she was angry. Really angry. Told him to mind his own business; she’s got this. There’s nothing wrong with her, she says.
I repeat what I said to him when he told me he’d had The Conversation with her: “You did the right thing. You saw an opening and you took it.”
I’m sighing with relief, too, because I’ve been spared her anger. I feel guilty for all the times I’ve told families not to take the anger personally, to remember it’s the condition talking. I feel lucky none of them has ever smacked me.
I thought of those families after that early morning bizarreness at Mom’s. I’d turned off the television to pass out at half past midnight. Mom, ever the night owl, was still up and about, puttering between her bedroom and the living room. My brother had left for his hotel an hour or so before, after checking a good time to come over in the morning. Our aunt had laughed at the suggestion she or Mom would be up before 10.
Mom had transformed Dad’s office into more of a sitting room for her. She’d done a beautiful job, incorporating elements of Dad, but making it her own. Here I found myself on the most comfortable futon I’d ever slept on when I woke at quarter til 6 the next morning and got up to use the bathroom. I’d usually be up for the day at this point, but knew I needed more sleep.
I was startled when Mom said a cheery, “Well, good morning!” from behind me, still in her pajamas but clearly wide awake. I asked if she was up to use the bathroom–I said I was, silently hoping she’d let me get in there first as I starting to do the dance–but she said no, she was up and awake. Huh?
Did you sleep? I asked, incredulous. Where was my comically groggy in the mornings mom? She said yes, she’d slept, disorienting me further.
Struggling to make sense of this never-before situation, I asked if she was having trouble sleeping. “That’s not very much sleep, Mom,” I said, feeling bad for her.
“I slept just fine. I’ve had plenty of sleep! It’s time to be up!” Confused, I pointed out it was just 5:47 a.m.
“I like to take naps,” Mom chirped back.
“Okay, I’m going back to bed,” I said as I moved toward the bathroom. Once back in bed, my white noise machine was no match for the ever-increasing cacophony coming out of the kitchen. I gave up after five long minutes.
“Why are you up? I thought you were going back to sleep,” Mom spit out as she continued literally throwing silverware into the drawer and slamming cabinets shut as she unloaded the dishwasher.
“It’s too loud to sleep,” I said. “What’s going on?” I was waiting hoping praying wishing for an innocuous answer.
“Why were you questioning me about sleep?” Mom demanded. “This is what I usually do. I’m retired. I can do whatever I want! I can take a nap. I like to take a nap!” Mom was yelling, undeniably angry now.
Even more confused, I told her I was tired, but also surprised. I didn’t understand what was happening because although the perky good morning greeting is her usual way, I’d never known her to be an early morning girl. Far from diffusing the situation, it was clear I’d somehow thrown a Molotov cocktail on it.
“And how long has it been since you’ve lived with us? You don’t know! This is my usual routine,” she roared back.
I cried in the shower. When I came out, Mom handed me coffee. “Here you go, honey. It’s the Dark Magic, your favorite.”
My brother’s reporting sounds familiar; I’ve walked hundreds of other families through this very thing. Now we’ve managed to stick the landing the same way hundreds of other families have, which is to say, we’re all walking with a limp.
Despite his warning not to call her, to spare myself the wrath, I call Mom anyway. I want to keep communication open, give her a chance to talk about all this if she wants, just see how she’s doing. Plus, I have happy news to share with her.
She sounds like herself, thrilled to hear from me. I casually ask what she’s up to. She rambles through a story about the dog having surgery to have crustaceans removed. Crustaceans?
That’s what the vet said, she confirms. She won’t have to take the dog back to the vet for any further crustaceous eruptions, though; he’s assured her the dish washer can catch them early. She catches herself this time, says, “The dish washer? Ha! I meant the dog groomer.”
Maybe she shouldn’t have taken off the collar, Mom muses, because now the dog is gnawing at the stiches. Calling out No! to the dog, Mom says she’s gotta go and abruptly hangs up. I’ll share my happy news another time, I suppose.
I text my brother: Mom still likes *me*, but she called the groomer the dish washer.
I walk into the kitchen, then back into the living room. Pause to pet my own little herd of dogs. Into the laundry room, I fold a load of towels. Feed the dogs. Open the freezer. Peruse the pantry. Open the big freezer. Try not to think about any of this. Realize I’m scrubbing my stove with vigor.
Husband home, I focus on how his day zipped along, what happened at his business. I don’t mention any of this Mom stuff. Maybe it will go away. Everything’s probably fine; I’m probably just overreacting. I await with dread my certain visit from Mme Defarge tonight.
What do you do when you’re noticing all that? How do you move past the argument in your own head, one part of your brain screaming, Oh. My. God! This is a huge problem! while the other part is shouting, Nothing to see here! and at the same time your heart is hyperventilating because this is starting to look like a waking nightmare but you can’t say that out loud, you can’t let your brain know that because then it would be real.
What do you do with all that?
Christy Turner is the founder of DementiaSherpa.com, creator of the program What To Do When Your Parent or Partner Has Dementia, and a featured blogger on Sixty+Me.com. Her segment “Guiding You Through Rough Terrain with The Dementia Sherpa” appears on The Alzheimer’s Podcast every other Tuesday. Christy has enjoyed the privilege of working with 1,123 people living with dementia and their families.