Hyper‑Aware and Wide Awake: A Caregiver’s POV

The lights are out, and the house is quiet. Everyone is asleep except the amped‑up caregiver. The quiet is unnerving and unusual. Silence is a gift, but it’s unwelcome for a mind processing the last five days and what feels like a fragile beacon of hope—a corner maybe turned in the latest medical challenges that plague the days to come.

It’s not just gum or tooth sensitivity. It’s the decline in memory care that used to be second nature and never a thought. Were the signs there? No. We do the things. We check and resupply what’s needed. We don’t wait to be told; we ask on the regular, and then we piss her off when needed and go check for ourselves. Did we know the toothbrush was painful? No. Not until the day we knew there was discomfort.

The 4 p.m. chat, which was so random, had me leave the conversation she was having with her visiting friend and call the dentist for advice and an appointment. When the call went to voicemail, I sent a text, and the decision in that text was that they would call me with the first available times first thing in the morning. Nothing was dismissed. Nothing was delayed or ignored. Most call me controlling and too attentive, her included…maybe even leading the charge.

First thing the very next morning, we were back on the phone making the appointment. No sinus or illness signs—just a sore tooth that needed to be addressed.

Replay of every chat, every interaction. Every sign. Nothing that could be a sign of something missed. No stuffy nose, sore throat, or clogged ear. No usual signs of infection. Maybe that one day, when she slept longer than normal, but that’s been on and off for months since the nosebleed incident nine months ago—the 911 call, the ambulance ride, damn near four‑ish pints of blood loss in 36 hours, and two cauterizations (ENT getting nervous because it wasn’t taking) that then led to a series of iron infusions because her blood work tanked.

Lights out in the cottage and the main house. Cameras checked. All seems copacetic in the minutes that pass closest to midnight. Dogs sleeping, birds snuggled up in their favorite sleep corners, and me in the silence, alone with the question of what was missed. What happened? How do we avoid it getting worse? Or conquer it? Plan and readdress how to manage the unmanageable.

Parents with newborns share stories of the unimaginable fears of caring for a first child. I could never relate. I do not have children of my own. I have a loved one in memory care who is a fiercely independent, spicy, sassy ass with 78 years of hard truths and life experiences that far exceed mine.

I am the one responsible for helping to preserve dignity and quality of life as it slowly winds down on the long road of leaving us. I am not a parent to a child, teaching them how to be a good human and hoping for the best with all that life will bring—the first day of preschool or high school, senior prom, and graduation. I don’t have to help a young human through their first friend fight that will blow over in a day, or the first date, first love, college decisions, or engagements. Weddings, divorces, and all the in‑betweens.

I am here to assist in the long days of safety when the details of how to brush your teeth or remember to drink water for hydration, or blow‑dry your hair, are simply too tiring to achieve without assistance. To make sure the clothing is in the same place so it isn’t mistaken for lost or stolen. To make sure the clothing is appropriate for the change in weather or the upcoming outing. I make sure the outings and visits are consistent, so panic attacks and cancellations don’t happen, and fun times are still had. I’m the fucking cruise director of the daily activities and safety needed for iPad and phone usage, which is increasingly scary with child‑like internet‑safety locks. Do perceived independence and dignity still reign supreme?

I listen to stories of the past with timelines so vivid I can almost delude myself that it’s a normal day, or with details so lost that I know they’re incorrect—but there’s no reason to correct and start a feeling that will turn into an argument or a fight.

I don’t have arguments with my loved one anymore because I’ve learned, over the last nine years, how to avoid them and redirect. Ignore the small stuff and pay attention to patterns and signs, not words. I am trained in crisis management. I am a master of pivoting and dodging the traumatic and the chaotic.

I’m no saint. I missed the signs.

I sit here tonight replaying the last month. What were the new signs? Were there signs? Are we missing something bigger, or do we do what we did when that surgery—to address something very rare and very serious—was a fail and there was no fix to that medical drama?

Duodenal mass. Not able to biopsy. Not able to safely remove. Not able to fix. That was diagnosed three years ago, and I strongly suggest ignoring Dr. Google, because it will take you down a rabbit hole. The real, in‑person specialists have thoughts, but without a biopsy, we wait on symptoms and address the now.

Same as the tooth. Same as sinus/ear/congestion. We address the symptoms and hope it’s not the beginning of something connected to the serious system failure we all know is coming.

Time—the thing we waste and the thing we don’t know the limits of. When? That’s not for a professional to say and not for me to assume. There was always a stop. An end. With the GI issue, that comes with a few numbers we ignore because she is unique in her Alzheimer’s journey; why would we think she won’t be unique with something that comes with an 80% chance of being something vicious and terminal when she already suffers the ultimate vile and terminal diagnosis of brain atrophy of the longest kind.

But in the middle of the silence and the dark, the signs become patterns, and the patterns tell the story. What happens next is left for tomorrow, when the lights turn on, and we see what we see, she says what she says, and on to the next decisions we go.

If you know, you fucking know. If you think you know, you don’t. It really is that simple.

I didn’t raise children; I would never presume to tell someone how. If you have never supported the longest road of a life in decline, why would you think your opinion is worthy of my decisions? How cruel to assume your way would be better than my reality. To do so in the shadows, in quiet whispers just loud enough to float back to my distant ears.

Why is this acceptable? Would you be okay if someone told you your decisions as a parent to your beloved child were wrong? Knowing what you know, how would you process those conversations? How would you feel? What would you do or say?

The dark is a harsh truth serum, and the silence is deafening. You think you know what you would do or feel, but do you?

If you were caring for your loved one in 24/7 at‑home care, and you never have a break, a timeout, a dinner with friends to just take a minute to disconnect from responsibility, how would you process the vast and visceral judgment?

I dare you to sit in a quiet, dark room and test your worth, your values, and your real truth of how you would proceed.

It’s close to midnight, and the words flow because it is dark and quiet for the first time in over a week. I have taken care as best I could, as far as I can see. I am told by the professionals that I should write a book, as I’m seen as being very proactive and successful in creating a stable home for an unstable disease.

When the dentist visit made me aware this wasn’t dental—other than mild gum irritation from sinus pressure and an infection he couldn’t do anything about—I immediately called the doctor’s office for an appointment. There was no delay. It just went south super quickly with no warning. No fever. No pain except in the upper jaw, mimicking a tooth issue. No stuffy nose or complaints of sore throat, headache, ear pain, or chest congestion present.

We were early in symptoms; they didn’t come for another 24 hours. It was just mild dizziness after mild exertion, which had been common and frequent over the last few months. The heart doctor said just a few months back that everything was perfect. No heart issues, even though some patterns scream heart problems. Lungs and chest clear, even though we have symptoms that mimic mild issues—nothing serious, just the aging process.

That mass is not growing into the intestine; it’s growing out and up. It was 10 cm in length two years ago on the fateful day the “workaround” surgery (meant to replace the 10‑hour surgery that was not advised) failed. They opened her up on the surgery table and closed her up. Nothing could be done unless we did the 10‑hour surgery four specialists and three others said no to.

With Alzheimer’s, 10 hours of anesthesia could kill her—and that’s before you even consider what that 10‑hour surgery entails: remove the gallbladder, half the pancreas, half the intestine, half the stomach, half a kidney…reroute the digestive tract for food intake and maybe have six months of misery before death.

Yeah. She didn’t like that conversation any more than we did.

It is something you can’t possibly understand unless you live it. The heavy weight of care to an adult who, until ten‑ish years ago, had quirky hiccups and challenges but complete loops, resets, and a bubble you have to respect—unless you want bitter, feisty backlash from her and the others who can’t comprehend what they don’t see, don’t want to see, and share with me in random texts how “hard it is to witness.”

Yeah, no shit, it’s hard to see. It’s hard to live it too.

“Hey L, she did…bla bla bla, wanted you to know…” Um, yeah, I knew that six months ago, and now she no longer can hide that from you…and she’s bitter about that, by the way. She feels her decline, and we help as best we can to find a way to make those feelings less harsh and scary.

“Hyper‑aware,” her neuro doc calls it. Super aware and pissed off about it. But if you don’t live in her bubble she isn’t about to willingly share that. She’s gonna perform. She will act, she will mimic, and adjust to the vibe of the room. Yep, I know. I fucking know all the little things, but I didn’t see this illness of sinus pressure showing up in debilitating pain with complete loss in translation coming. I had deluded myself into living in her “I’m fine” vibe and persona.

I ask you to self‑reflect on what you would do or feel in a moment of silence when everyone can finally sleep, and all I can do is sit here, wide awake, and self‑reflect on what can be done to make Easter as pleasant as it can be and help her feel special and not absent or weird. Help her feel normal while things are off due to all the meds to help her feel more normal and keep infection away for just a little longer.

I may be the villain in the stories of all the others and their people they care for, but I’m not for the one I am the only caregiver for. The lone person who was asked to take care of all the things when they get hard. Protect them from the outside world when they

won’t get it,

won’t be able to,

and won’t stick around.

This isn’t a “woe is me” POV. This is the self‑reflection in real time because y’all should get to know what this is really like and know that, when the time comes, what not to do, what you should expect—and if you are a type‑A Virgo like me, with my own story of how things played out over the last 51 years, maybe you will make different choices now for your future journeys.