name seems familiar, I’m not making the connection. Might you know anything

about her?” the text read.

It took me a moment to realize he was texting about me. Talk about a knife through the heart. At least he wrote to a sweetheart. I’m not really sure who he thought he was texting.

I didn’t respond

.

What’s interesting is that he didn’t totally forget me. Somewhere, in the deep recesses of his mind, he knew the name was familiar; he just couldn’t place me. I existed in his mind, just not where I belonged anymore.

Apparently, “sweetheart” was someone he believed could help him in this slip of memory. The fact that he was texting me about me didn’t seem to register. Cindy was someone he knew he should know but, at that moment, he couldn’t retrieve that identity.

I imagine it was like a word on the tip of your tongue that you just can’t remember or a photograph without a caption. His mind just wouldn’t let him grasp it at that moment. In his mental search he understood that this was someone of importance, hence the questioning. The emotional connection seemed present, just not the ability to put the name or its importance together with an identity.

Once again, he had been texting me, Cindy, all day long. I’ve even put in an updated photo of me on his phone that shows up when he’s texting.

I realized that I could disappear while standing in front of him. Although I was emotionally present I was also cognitively displaced.

While I had become someone he recognized emotionally, he no longer understood who I was relationally. I believe this hurt more than completely forgetting me would have been. This ambiguity has a level of cruelty inside of it. A cruelty that cuts deep but one I must learn to accept.

What amazes me most is the fact that he has splintered me into two separate Cindys – the one who cares for him and the one he longs for. This has a particularly disturbing effect on me. At times, after kissing me good night, using my name, he then begins texting the other Cindy that he’s in love with and misses terribly. When this occurs I feel as though he is cheating on me – but, with me. It’s a bizarre and disturbing aspect of his Alzheimer’s that catches me cold every time.

At any given time, I’m not sure which Cindy I am other than I’m not the Cindy he’s texting at the moment. I take on multiple roles in his mind – the caregiver, the duplicate partner, the missing partner, the partner who is home or not home, and the one with shifting identities.

It appears that his dementia fractures not only memory, but singular identity itself. To him there are now multiple versions of me – sometimes I’m his caretaker, a stranger, his wife/partner, a visitor, or an imagined double. Maintaining these identities can be exhausting for me. But, in reality, I must accept this reality as it manifests in his mind.

While a painful reality for me, I’ve learned to move toward acceptance without any semblance of resolution. In his mind, he is beginning to lose the ability to anchor me consistently. He knows I exist just not how I exist to him. I am eroding in his mind.

I now recognize and have had to accept that he is trying to remember me and that matters. However, along with that comes the sadness that I will never be the one role I was to him just a year ago. Somewhere deep inside of him, he still knew that I mattered. He just couldn’t remember why.

Lately, Frank has begun calling the “other Cindy” in front of me or he’ll step into the next room. If we’re in the midst of a delusion and speaking to Cindy is vital, I excuse myself, run into the bathroom and answer the phone to help soothe whatever mental meltdown he’s experiencing at the moment.

At times, I initiate contact if I need to correct a train of thought he’s experiencing or to clarify a fact that we had discussed in a previous conversation. He never notices when I clarify a point that I would only know if I were in the original conversation with the “other Cindy.”

Once, he even had the “other Cindy” on the phone and needed the Cindy he lives with to provide some information so he came looking for her/me. Of course, I was in the bathroom listening to him on the phone but also listening to him throughout the house getting louder and louder as he approached. Not knowing how to talk to them both at the same time, I muted my phone while Frank was thinking that his call had been disconnected. This little game played out three times as I kept trying to close the bathroom door and speak to him solely as the “other Cindy.” Finally, I told him that I needed to go to the bathroom. That one worked.

In the end, the door helped to play out and protect the illusion this disease demands of its players.

The bedroom door rarely gets closed. I don’t close the bedroom door mainly because when closing the door thoroughly it results in an annoying squeaking noise when it’s opened and it reminds me of yet another interruption. And Frank always has to open the door – to tell me he loves me, to ask what I’m doing, to give me a piece of news, and so many other reasons.

This door doesn’t provide the emotional refuge I’d like it to but oftentimes it helps a little for brief moments of time. It’s not as much escaping Frank as it is a way to reset myself. And that reset is often desperately needed.

Another door, another act of saving my sanity.

A door that has never been a favorite is my car door. Historically, driving has never been one of my favorite things to do. There are too many cars on the roads. Between the volume of cars, quality of driving skills possessed by many, and the aggressiveness of some drivers it’s an act that literally frightens me. The sound of the door closing was the precursor to an anxiety inducing act. However, lately that same sound now represents freedom. Once I step on the gas, the car takes me away from anxiety, hypervigilance and confusion. Watching the garage door close confirms my eight hours of freedom. The garage door, yet another door that represents a sense of solace and peace.

That same garage door is also a symbol of “I’m back. I wonder what’s in store for me tonight.” This is my thought thought hours later upon my return home. Oftentimes I sit and wait for a minute or two in the car before daring to open the car door and allowing my reality to commence. This minute or two prepares me to take on the next few hours no matter what they bring. I take a few deep breaths, consciously relax my stomach and spine, and talk to myself, praying for an easy night.

Once I enter the next three doorways, each one brings me closer and closer to Frank, and closer and closer to the unknown of what the evening will bring.

Another thing that doors represent is a boundary. Each door has a job and serves a purpose. At times they separate realities, at times they separate caregiver from woman, they separate chaos from quiet and they give permission to breathe.

What this has made me realize is that sometimes the safest place isn’t a room at all. Doors delineate rooms and help to organize our homes. Doorways indicate transition, and entry into a new world of sorts. My father photographed a series of doors from Cape May, NJ homes. I didn’t quite get his fascination with doorways but he put together a lovely series of photographs. Each door told a different story.

Today, each of my doors serve a different purpose but each has the mutually shared task of serving as brief sanctuaries.

At one time, I never gave much thought to doors and doorways or to their importance. I thought that doors were simply things we walked through. Now I recognize them as leading to places to pause, regroup, breathe, and survive.

Sometimes the strongest thing in this house isn’t me. It’s the door I gently close behind me

.

A Monday in January

6:30 AM

“What are you up to today?” he’d ask.

“Well, I have to go to work—we’re having a special guest speaker today. I’m excited about that,” I’d respond.

“Who’s the speaker?” he’d ask as he poured a second cup of coffee.

“I don’t remember her name, but she’s an alumnus of the school and found some moderate public success, so she’s a good inspiration for the kids,” I’d answer as I poured half & half into his coffee.

“You’re right—I miss those days when I would talk to groups of students. It was inspiring,” he’d reminisce as he fought to open the Splenda sweetener packets.

“Well, you were really good at it, I remember. Of course you miss it,” I’d offer as I tore the packets and poured their contents into the coffee cup—all eight of them.

4:00 PM

Sitting in his recliner watching the news: “Hey, hi, honey, how was your day?”

“Great!” I’d say as I kissed his forehead hello. “The guest speaker was so dynamic. I really think she motivated some of the kids. It was fun to watch.”

“You were looking forward to it. I’m glad you enjoyed it,” he’d say, joining me in excitement.

Pulling up a seat next to him, I’d ask, “And what did you do today while I slaved away?”

“Well, I watered all the plants, put bird seed in the bird feeders, took two nice long walks, watched the news, played the conga drum for a while, talked on the phone with some friends, went out to lunch, and waited patiently for you to return home,” he’d report.

“Wow!” I’d exclaim. “Sounds like a busy day—good for you.”

A Wednesday in May

6:45 AM

“Good morning, baby. What time are you leaving?” he’d ask while wandering around the kitchen, apparently hopelessly.

“A little after 7:00,” I’d respond while I grabbed two cups and poured coffee into them. Next, I’d empty the contents of eight Splenda packets into Frank’s cup—none in mine—and stir half & half into his, Coffee Mate into mine.

“Thanks for the coffee. Anything interesting happening today?” he’d ask.

“Well, do you remember the student tee-shirt contest I told you about?” I’d ask as I started gulping down my coffee.

“No, what is that?” he’d say…again.

“Well, it’s not important, but the winner of the contest for who designed the best tee-shirt will be announced today,” I’d say as I gathered my lunch and put it into the lunch bag.

“Oh, have fun.”

“Thanks, baby. Have a great day,” I’d say as I dashed out the door.

4:00 PM

“Oh, you’re home!” I’d be greeted as soon as I walked in the door.

“Hi honey, how was your day?”

“Good.”

“What did you do today?” I’d ask, sitting on the couch next to him.

“I fed the birds and took a walk. How was your day?” he’d report.

“Well, it was a good day. Had a funny thing happen. Remember Paul that I work with—the chemistry teacher?”

“No, who’s he?”

“He’s the one who likes useless trivia. I bought him a book for Christmas about serial killer trivia. Remember?” I’d remind him.

“Oh, yeah, I remember.” I doubted he did.

“Well, he was observed today by the principal and a student passed out during class. I have to go to the bathroom. I’ll be right back,” I’d say, rushing to the bathroom.

Coming back into the living room after finishing in the bathroom, I’d say, “So, anyway, it was a big deal today.”

“What was?” he’d ask.

“What happened in Paul’s class,” I’d explain.

“Who’s Paul?” he’d ask.

“Never mind. It’s okay. Let’s watch some television. What’s going on with the news today?” I’d say as I turned on the television.

“Okay, sounds great.” He’d sit on the couch and hold my hand.

A Saturday in August

8:00 AM

“Good morning. What does your day look like today?”

“I have a few errands to run—Staples, CVS, the post office, and UPS.”

“Can I come with you?” he’d implore.

“Sure, but there’ll be a lot of stopping and starting. You okay with that?” I’d ask.

“Yes, I just want to be with you. What do you have to do at Staples?” he’d ask.

“I’m returning some Amazon items at Staples, picking up prescriptions from CVS, mailing something to Niko at the post office, and sending another return through UPS.” Giving him all the information saved me from answering four distinct questions.

“Do you want to go have lunch?” he’d inquire.

“Sure. Where do you want to go?” I’d ask.

“Where would you like to go?” he’d respond…

“I’ll be ready in about 30 minutes. Will you be ready to leave?” I’d continue.

“Where are we going?”—his normal response.

6:00 PM

“I’m getting tired. Where do I sleep?” he’d ask.

“You sleep on the recliner in the sunroom,” I’d answer.

“The room with the chair?” he’d ask, seeking clarity.

“Yeah, that’s the recliner,” I’d confirm.

“Oh, where do you sleep?” he’d ask.

“In the bedroom over here,” I’d say, pointing in the direction of the bedroom.

“OK, let’s watch some Family Feud before we go to sleep,” I’d say, coaxing him to settle down for the night.

A Tuesday in December

7:00 AM

RING, RING, RING, RING, RING—the pill box would sound its alarm, causing me to scurry to the kitchen, get his juice, and flip the damn pill box over to stop the incessant blaring.

Nudging him gently, I’d say, “Honey, wake up. You have to take your medicine.”

“Thank you, honey.” He’d swallow his pills. “You getting ready to go?”

“Yes, I’m almost ready,” I’d answer.

“Have a nice day and remember ‘I’m Here.’” Whenever I left for work, I had to send him an arrival text that said I’m Here once I arrived.

“Will do. Love you,” I’d always respond.

“Love you. Bye,” he’d always respond.

3:50 PM

“Honey, you’re home!” He’d greet me at the door like a puppy greeting its master.

“I’ve been watching you,” he’d proudly proclaim. To help ease his anxiety about my return home, the aide, LouAnn, taught Frank how to track someone on an iPhone using the Find My feature, and he’d watch my entire drive home—every day.

“And now, I’m home,” I’d confirm.

“How was your day?” he’d ask as we sat down in the living room.

“Good,” I’d report.

“Kids good?” he’d ask.

“Yep, all is good,” I’d answer. “How was your day?”

He had been home all day with LouAnn, but that detail never seemed to matter.

“I’m exhausted. We just got here from a long drive from up north,” he’d report.

“I’m sure you’re tired. Let’s sit and watch the news or a game. That’ll help relax you,” I’d concede.

“Yeah, that’s a good idea,” he’d agree.

Today

6:58 AM

With a slight nudge, “Here, baby—here are your pills.”

“Thanks.”

“OK, I have to go. Love you.”

“Love you. Remember…”

7:42 AM

Text: I’m Here

Learning you have cancer is a frightening experience. What kind of cancer? What stage? What are the survival rates? What is the treatment?

“Come to the office tomorrow at 10:00 AM. We’ll talk about it all then.”

It was probably the longest sixteen hours of my life — waiting. A friend drove 100 miles to come with me to the appointment. After the visit, I was relieved and hopeful. While the particular cancer I had was quite serious, it was caught in time. The tumor was fully encapsulated, but the fear that remained was that stray cancer cells could metastasize. Because of this possibility, a full six rounds of chemotherapy were ordered. Apparently, this cancer has a very high rate of recurrence if not treated with chemo, but the survival rate was 90% with chemotherapy treatment. Those were hopeful odds, and I took them and ran.

Recently, I spoke to a dear friend in her seventies. After some light chit-chat, she told me she had just been diagnosed with early-stage Alzheimer’s. My heart dropped and I felt a certain doom. All I could muster to say was, “I’m so sorry.” That’s it. That’s all I could honestly say. There were no “stay positive,” “there’s always hope,” or “miracles happen” statements I could make. I was living in its realities and knew there was nothing that could cure her or change the ultimate direction of the disease.

She seemed resigned to her fate. Expressing that she was near eighty and had no children brought her some peace. Who was I to argue? I wanted so badly to offer something hopeful, but being in the thick of it, I simply couldn’t. So instead, we spoke about the logistics of the disease — what medications she was taking, the impossibility of traveling alone, and the limitations that now shaped her life.

Every other disease follows a pattern: diagnosis, treatment, possibility. Even in the deadliest diseases, there is usually hope for remission, hope for more time, hope for something. Not with Alzheimer’s. The brain shrinks and continues to shrink no matter what steps are taken. Can progression be delayed? Maybe. But the end is always the same. Hope is built into the structure of most diseases. It is not built into Alzheimer’s.

Alzheimer’s fails to follow the standard rules. There is no remission, no plateau, and no reversal — only trajectory. The outcome is known from the beginning.

When Frank was diagnosed, I was not as familiar with the disease. I didn’t understand its relentless decline or the pain and confusion it would bring both to its victim and to those who love him.

Twenty, thirty, forty years ago, Frank was a brilliant musician — both as a player and a conductor. He was a force to be reckoned with and the most inspiring teacher I, and so many others, were fortunate enough to study under. Today, he is still musical and can hear a wayward note with startling clarity, but he is also a shell of who he once was. He lives in a state of steady erosion and lacks so many of the facets that made him the dynamic man he once was.

After accepting the lack of hope Alzheimer’s brings, we are left with the daily realities of confusion, delusions, personality changes, and all the other truths this vicious disease carries with it. You learn to live with the dailiness of the disease — the repetition, the sense of loss, and all its other horrors. All the while, you are not waiting for improvement. Instead, you hope for a good day — a day when the symptoms are manageable and do not completely drain and exhaust you, the caregiver. But a true sense of hope is never fully present.

What replaces hope is management, containment, delay, diversion — waking each morning and wondering how bad the day will be and whether tomorrow will be worse. The saddest truth is that you begin to wonder if the less lucid he becomes, the easier placement in memory care will be.

Then there is resentment and a feeling of abandonment. I often wonder, when Frank’s time comes, how I will cope with the inevitable feeling of betrayal that will follow placing him somewhere else.

Not too long ago, I was taking an Uber and chatting with a friend in the back seat about the daily decline I see in Frank. Prior to reaching our destination, the driver acknowledged that he had overheard our conversation and chose to “educate” me about cures for Alzheimer’s through the use of supplements. This kind of talk infuriates me. Some misinformed individual writes an article somewhere about a miracle cure, and others choose to believe and share the information. Wanting to avoid a confrontation, I nodded, thanked him for his input, and got out of the car.

The reality is that there is no hope. People don’t want to hear this. It makes them understandably uncomfortable. It sounds cruel, cold, and final. But it’s not cruelty. It’s clarity.

This prompts me to ask what remains when hope is gone. In my case, it is hope for a calm day, hope for a moment of recognition, hope that he isn’t afraid, and hope that I have the strength to get through the day. It is no longer hope for him; it is hope for how this will end.

Not long ago, in a moment of startling lucidity, Frank asked me why he needed an aide with him all day. I told him. I told him about some of the delusions he had experienced and the confusion he lives with. He was horrified. His first reaction was that there must be something that could be done — some doctor somewhere who could cure him. I nodded and told him we would work on that. I said it because I knew this rare moment of lucidity would disappear within minutes. It did. He has never mentioned it again, nor has he had that level of lucidity since.

Often, I watch him sleep with the television light flickering across his face. No repeated questions being asked, no delusions to disavow — just quiet.

My cancer came with hope; his disease does not. Despite the world insisting on hope, I live in truth, and the truth here is quieter and harder. For us, there is no hope. Only a slow, certain goodbye.

“Yes, I’m on my way. Be right there,” I shouted into the phone.

I raced home, not knowing what I’d find when I got there. Making an illegal u-turn, I caught the next light. Less than a mile and I’d reach the turn off. I pushed the speed limit, eyes flicking between the clock and the road, and found my way on the block leading to my street. Within a minute, I was just pulling into the driveway facing his car trying to leave the drive. Lou Ann, his home health aide, was holding the passenger side door open while he was screaming at her to close the door.

“Frank, baby, what’s going on?” I asked as I hurried to the driver’s side window.

“Leave me alone. I just want to go to lunch,” he screamed.

“That’s great. We’ll go to lunch. I’ll drive us. I came home early to have lunch with you,” I implored.

The sad truth is that I leave my home every Monday, Tuesday and Wednesday from 9:30 to 2:30ish and wander around aimlessly, killing time until I can go back home. I do all of this so that Frank can adjust to having an aide. Since his fall in May and the stroke in early June, the confusion and delusions have grown worse, so his daughter and I insisted on part-time help. While they’re home, I hide out at Starbucks - writing, reading about Alzheimer’s, pretending life is normal.

“Fine, get in the car and we’ll go to lunch,” was his response.

“You can’t drive, babe,” I said softly.

Fuming, he shouted, “Get the FUCK out of my way then. Nobody is going to control my life. I decide where I go and how I get there. Not you.” I didn’t have an emotional response to this at the time as I was in my “get him to calm his ass down” mode and wasn’t particularly phased by the things he was saying.

Since the stroke and the escalation of his Alzheimer’s, he’s not permitted to drive and he is not handling that reality well. The sudden loss of control over his life has made him understandably agitated and angry.

We went back and forth in an endless loop: me begging, him ranting, the car idling between us. As I distracted Frank, Lou Ann managed to grab the keys from the center console. That absolutely sent a surge of rage through him. He turned the car off in anger, then once realizing what he did, turned it back on. As Lou Ann, and the keys, were still near the car, it started.

Frank continued screaming at LouAnn to close the passenger door and return his keys. He threatened to strangle “this bitch” when he got his hands on her if she wouldn’t return his keys. As he shouted, I felt the sting of guilt crawl up my throat — guilt for taking away his independence, guilt for protecting him from himself and guilt for feeling like I’m betraying him. Lou Ann insisted she didn’t have the keys, he’s looking all around the car for them, and I’m begging him to get out of the car and get inside. It was a tragic farce unfolding on the front lawn.

Finally, while I was leaning in the driver’s side window pleading with him to get out of the car, he stepped on the gas and the car leapt forward, knocking me back, causing me to stumble. He immediately stopped and got out of the car. I thought he might have been concerned for my safety but no, he was still in search of his keys. Realizing he had no concern for me, grounded me in the reality that the man I knew and loved was gone.

As this was all unfolding, I was texting with Frank’s daughter, Cesca, who suggested calling the police to help calm him down and control the situation. Not knowing what else to do, I weighed my options and I agreed.

Frank continued searching for his keys. Once he finally realized that Lou Ann had them, she started running and this 82 year old man took off, on unstable footing and on uneven lawn, chasing her across the grass, into the street and around the car. All I could envision was him going face first into the macadam. But, he didn’t. As they ran, the keys that Lou Ann had shoved into the back of her pants, had managed to wiggle their way down her pants leg and dropped onto the street. He stopped to bend over and pick them up. At their sight and touch, he instantly and immediately calmed down. Despite his fury, there was a part of him that found humor in this situation and I saw a slight chuckle and smile appear on his face. I don’t really know what happened, but it was like a button was pressed and everything stopped.

After crossing back across the lawn, leaving the cars where they were, I managed to steer him into the garage and back into the house. Other than still being furious with Lou Ann for taking his keys, he completely abandoned his plight to drive to lunch and his anger in general had significantly dissipated.

Then, the police arrived. This was the first time in my life that I ever had to have police assistance in handling a family member. How embarrassing!

Holding back tears, I answered the door. I was surprised that four police officers arrived; however, only three entered. One looked rather young. They were very polite and understanding.

While they were in the kitchen, speaking to us, Frank was amazingly calm and articulate except for when he was addressing me. I didn’t understand his anger – or my own indignation that he’d turn it on me. He kept insisting that he had been driving for the past few weeks, a delusion he continuously had. My correction sent him into a rage but then he’d calm down when addressing the police.

In that moment, I couldn’t help but feel so unimportant and dismissed by his anger. I only hoped the police realized I had been telling the truth. While this unfolded, I cannot say that I was frightened by him but I was taken aback at his anger towards me. I somehow felt resentful that HE would dare be angry at ME.

On the outside, I stayed calm. Inside, I was crumbling – part of me wanted to scream, part of me wanted to weep. Mostly, I wanted him back.

In the end, police presence was no longer needed but they did reinforce that based on the orders written by the doctor, a letter I showed them, he should not drive. I was thankful for one of the three police officers who made a point to address me directly before he left.

“Are you sure you’re alright?” the baby-faced police officer inquired as he walked to the door.

“Yes, I’m fine,” I half whispered.

When the police left, Lou Ann had managed to come back into the house and started preparing lunch. After that 50-minute fiasco, we were sitting calmly and laughing over lunch as if the afternoon chaos hadn’t happened - not because it was funny, but because Lou Ann and I were too tired not to and Frank simply moved beyond this episode. In disbelief, I was exhausted…but I remembered to hide the keys – because tomorrow, it might happen again.

“No, the other Cindy Roman.”

“What other Cindy Roman?” I’d ask.

“The other one,” he said. “The one that used to be my student.”

I was the one that used to be his student.

This Cindy seemed to be the Cindy that did things around the house. I’m not sure if he ever saw this Cindy (hallucinated her), or just imagined her but she was very real to him. This Cindy was definitely younger than me but not college aged either. Maybe in her forties—my best guess.

Not only was she real to him but for a time, she actually lived with us…until I put an end to that. This fictional character required a lie every night. Also at times I had to get up and go into the spare room to prove she wasn’t there.

So finally, one day when he asked yet again where Cindy was, I lied. I put an end to her in our home.

“She left,” I said.

“What do you mean she left? Where did she go?” he inquired.

“She moved in with her boyfriend.”

“She did? Well, good for her,” he conceded.

And that was the end of the other Cindy, once and for all.

Every once in a while, he’ll ask for her but he seems to have accepted that she’s off making a better life for herself. I’m not sure what role she played in our lives but I do know that he was willing to let her go from our lives.

Now there are other Cindys. Most anyone that serves as a caretaker in his life becomes Cindy. LouAnn, his daytime aide, is Cindy most days. After she leaves, she’s still Cindy to him. The contact on his phone is Cindy, but very often he doesn’t recognize me as that person.

Then there’s the Cindy in Maine and the Cindy in North Jersey. So far, there’s never been an Cindy in South Jersey but there’s time.

At night, especially if he dozes off, he’ll call me thinking he’s in Maine or South Jersey. He tells me how much he misses me and can’t wait to be back with me. Shortly after, I see his silhouette coming down the hallway approaching my bedroom. I used to panic when he approached as I didn’t know who I was supposed to be but moreover, who I was in his reality. Now, I don’t flinch. In his reality, he sees me as the other Cindy that he loves and has come to kiss good night again.

I no longer panic when he comes to my door. In his reality, I am the Cindy he loves.

I am me, and I am his many Cindys.

Friends, all well intentioned, suggested I seek a therapist to help cope with the layers of complication in my life. It was intended as support for someone holding too much. That making sense, coupled with my fear of coping with the future, moved me forward to locate a therapist that accepted my insurance. Out of pocket, with my son’s antics, was out of the question.

I made the appointment with someone named Karen. Have no idea what her credentials were– just Karen. So, I had my first televisit appointment for us to get to know each other and see if it was a good fit.

I liked her instantly. I don’t know why, just did. After hearing my initial story however, she didn’t ask the questions I expected – How are you coping? Or What’s hardest right now? Instead, she asked something like: Who are you caring for? or How many people rely on you?” I didn’t quite know how to respond.

First off, I live with Frank. He’s my everyday responsibility. He’s almost my every minute responsibility. All day, every day I’m in a hypervigilant state. I’m grounded very intently, prepared to provide the anchor he may need at any given moment. And just when a solution is found, a recalibration is necessary as he alters facts and details throughout. This is an iterative process.

I love him but I’m also responsible for him. I serve as a translator of reality, if you will, in Frank’s world. And sometimes the lines between caregiver and partner blur.

Second, I am a mother. I am the mother of an adult child with autism – high functioning, but autism. There’s a neurodivergent understanding that must be considered when addressing my son’s needs. It’s not easy – always questioning choices and decisions as “Are these typical autistic behaviors?” “Should we be interpreting this differently because of autism?”

He is also severely ADHD. That comes with its own set of rules and understandings. He’s trying to address it holistically rather than with medication. I want to support him but at what cost? If he makes better choices it significantly improves my life. Navigating my adult son’s journey out of adolescence and into adulthood comes with its own set of stressors.

Niko’s life is different from Frank’s life but they both equally take their toll on me. I’m presently monitoring two lives – while grossly divergent, still two distinct lives. I watch to be sure Frank is taking his meds, responding appropriately to stimuli, eating, monitoring lucidity and delusions – it goes on and on, all while repeating and reexplaining throughout.

Niko, on the other hand, is not physically present in my home any more. Monitoring him comes in the form of texts and emails and every once in a while, a phone call. I have more internal conflict monitoring him. Frank can no longer make decisions for himself in many instances, Niko can and does, just not always wise ones. These decisions make for circumstances that necessitate mommy to come to the financial rescue.

There are emotional rescues too. He struggles with so much that so many take for granted – speaking publicly, speaking to women, being with others, seeing the big picture, etc. Niko’s monitoring and needs are loud in a different way than Frank’s but loud they are.

The third place where I am a caregiver of sorts is in school. My students are a strong population but often emotionally needy, not getting their emotional needs met elsewhere. I have one student in particular that I enjoy seeing every morning. Just one look at her and I can tell if this is going to be a bad morning. I enjoy that I can see that in her. Then there’s my twice a day hugger. She just needs to feel loved. I give her that. When she’s having a bad day, I’m there for her–sometimes having my own bad day.

I choose to be there but it takes a little bit away from me too. And the most difficult yet most wonderful part is the expectation that I arrive whole no matter how depleted I feel. They can tell when I don’t and I love that they know me that well.

“So, you’re a caregiver times three,” Karen stated.

“What do you mean?” I ask.

“You’re a caregiver for three: Frank, Niko and your students.”

“Oh, I never thought of it that way.”

In one breath I was telling her I didn’t really know why I was seeking therapy, in the other breath, the math told me that I needed therapy, or at the very least some support, before I broke. Somehow, in talking for fifteen minutes she was able to encapsulate my life in three neat little categories. Its reality stung.

I will continue to see Karen. I think she’ll be good for me. Knowing what the future holds for me I will need her more than ever I imagine. I think what I’ve learned so far in this journey is that my exhaustion isn’t a weakness – it’s evidence.

With this evidence comes the realization that I need someone to care for me. I used to think that was selfish. What good was I if I needed to be cared for? But, I know now that it’s okay to be cared for when you’re a caregiver.

I didn’t need therapy because I was broken.

I needed it because I was carrying three lives–and forgetting my own

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Frank’s gait is definitely worsening. I see the old-man shuffle appearing more often now, his hands reaching for walls or furniture to steady himself. What does this mean? Is it time to introduce a walker? Will he use it? Will he fight me?

This constant internal dialogue fuels and sustains me. I don’t let him into this world unless it will soothe him in some way. But every day — often multiple times a day — I run through a silent mental checklist I’ve learned by necessity.

As usual, I go through the litany of possible causes.
Dehydration.
The stroke.
Medication interactions.
Progression of the disease.
What’s causing the imbalance today?

Everything that happens to Frank triggers this internal inventory.
Is the dementia worsening?
Is this temporary?
Is this decline?
Is this medical?

The iterative process continues until I can settle on a plausible explanation — something that gives me even a moment of solace.

Then comes the research.

Forums, caregiver sites, Alzheimer’s organizations, medical journals, chat rooms, AI — anywhere I might find a morsel of insight. Sometimes an answer surfaces; other times it doesn’t. Still, I persist. Only when I come up completely empty do I reach out to the professionals. With multiple health conditions, medications, and interactions at play, nothing is ever straightforward.

Parallel to that is the daily mental ledger: prescriptions needing refills, appointments to make, days I’ll need to take off from work, test results to track down, calls to return. It’s mental gymnastics that my sixty-two-year-old brain can barely manage — but I do. I always do.

Caregiving is a constant keeping-track of things.
Did he mention dizziness?
Blurry vision?
Is his ophthalmology appointment really six months away?
That will have to be moved up.
And on it goes.

Then there are the checks I make when something feels off.
Did he just call his phone the microwave? Check.
Is he unable to follow the plot of this show? Check.
Is he sleeping more than usual? Check.
Did he eat today? Check. Check. Check.

This is the plight of a caregiver.
We make lists.

We check them.
We make new lists.
We remember, we call, we schedule, we reorder, we buy supplies.
Mostly, we ensure that our loved ones are whole, cared for, and safe.

And we do it all in silence.
No one asks if anything needs to be done. It’s simply assumed the responsibilities are handled — efficiently, invisibly. Isn’t that what caregivers do? Aren’t we superhuman and infallible?

Of course not.
But the illusion is convenient, so it stands.

Oops — coughing in the next room.
The congested cough he’s had for a month.
Silent analysis: conducted.
No solutions found.
Time for the doctor.
Check.

Valentine’s Day was quickly approaching. I was having my first piece of writing published in Yellow Mama ezine in its Valentine’s Day edition.

I was pleasantly surprised when I opened my email on February 12th with the announcement that the Valentine’s Day issue was now live. I quickly clicked on the link, found my story and read it. Someone actually illustrated it as well. I felt so validated.

When something like this happens, I want to share it with “my people.” My first person is always Frank. As I began to call out to him, I had to stop myself. I couldn’t share this with him. Firstly, it would be so complicated for him to understand its significance but most importantly, the story is about him and I don’t think he’d understand why this writing is so important to me. If he was able to understand it at all.

This reminds me of when my mother died. For years after I would instinctively grab my phone then have to stop myself from calling her. Every little thing that would amuse her would prompt me to get the urge to call her. She was one of my top people too. It took years for that impulse to end but even today, nearly ten years later, I still get the impetus to call her every once in a while - this publication was one.

My mother was gone. That was fact, but Frank was still alive yet I could not share my news with him. Frank has taken on the role that my mother once held. He is my first person, yet, in certain ways, while my nervous system still seeks him out, he is not available to me anymore.

Even if the story was not about him, I find that I’m keeping my accomplishments to myself lately. It’s not that I don’t want to share it with him, it’s just that it’s far too taxing for me to go through the ritual and routine that is telling him a story of any kind. The mishearing, misunderstanding, references to the past, forgetfulness and constant need for repetition makes sharing information far less satisfying than it used to be.

There is a part of me that questions whether I have the right to write about our lives and put it out into the public. I’m being discrete, using pseudonyms across the board and not sharing identifying information. I feel I’m respecting his privacy as best as I can and I believe he deserves that.

As the disease progresses and his awareness lessens, I find that I withhold more and more information from him – what medications he’s taking for what disorder, what he pays the home health aide, the logistics of keeping him safe, anything involving paperwork, future plans, my worries, my fears, and now, my successes.

I don’t keep secrets from Frank because it’s convenient. I keep them because I don’t want to overwhelm him. As the disease progresses, his ability to process details has deteriorated; explaining anything new often ends in frustration for both of us. It has become a labor I quietly avoid.

So, for now, clarity belongs to me while he lives a life he can no longer witness even though he stands beside me.

Instead of sharing life with Frank, I absorb it alone for the most part. I have friends but it’s not the same as sharing life with a partner.

After opening up the Valentine’s Day issue release email, I read it, clicked on the link, read the article then copied the link to share with friends. I couldn’t celebrate aloud so I wrote. I wrote about how I felt having a life I’m not allowed to share anymore – not by Frank but by it, the disease that has robbed us of our life together. For now, I will serve as both participant and witness for both our lives and the one we continue together.

As for Frank, he’s still here loving me in the ways he can but no longer serves as the mirror I once relied on. For now, I carry my own memories, successes and failures. I make decisions for myself without the benefit of confirmation. I rely on memories and what used to be and hope I’m making the decisions he would have supported. But I live my life now without a primary witness. Not because he no longer loves me but simply because he can no longer hold the complexities and shape of my life.

And so the question rises—not dramatic, not loud, just true:

Who is my witness now?

As he hugged me tightly he asked:

“Do you like it here?”

“Yes, of course I do,” I responded.

“Would you like to live here?” He followed up.

“I do live here,” I said. Oh no, I think I just may have made a big mistake. Something tells me that question was not intended for me. Who could it have been to? I don’t know but I suspect I’ll find out eventually.

As is our norm, we spent the day watching the news, sports, or whatever movie might hold his interest. On this particular day it was football. Still something kept nagging at me. Our earlier conversation left me with a funny feeling – like the feeling that you’ve forgotten something but can’t quite put your finger on it. That’s the feeling I had.

Two hours later

The phone rings. I see who’s calling and brace as I do every evening. These calls always give me a small jolt just before I answer. I never know what awaits me on the other end.

“Hi honey, it’s so nice to hear your voice,” he says from the sunroom where he sleeps.

“Nice to hear your voice too, honey,” I play along, hearing the television from the other room through the phone.

“Listen, I need to talk to you about something,” he began. There was a pause, then:

“How would you feel if my mom were to come to live with us?”

Knowing this wasn’t real, it was very easy for me to be gracious. I knew something had happened in that conversation a few hours earlier.

“Of course she can come live with us,” I graciously agreed.

Throughout the course of our days, he can change who I am in the blink of an eye. Sometimes I realize when this shift occurs. Other times, I don’t.

But the shifts are constant, leaving me in a near perpetual state of transition. It’s a very nerve-wracking way to live, waiting to gauge someone’s comments in order to figure out your own identity for the moment.

Am I his partner?

His student?

His caretaker?

His love?

His daughter?

Or, as today, I was his mom.

Tomorrow, I’ll wait to find out.

“If the measure of our humanity is ‘I think, therefore I am,’ what is the human status of someone whose ability to think is impaired?”

This existential question raises many thoughts in me. As I watch Frank, there are times I wonder how much of his intellect is being consumed by Alzheimer’s disease. He’s too confused to write out a check or organize his pills — some of it due to aging hands, but much of it is cognition, yet he manages to dissect a musical piece with ease. He forgets how to use the microwave but rattles off twenty composers and their works.

Existentially, at what point does Alzheimer’s completely overtake an individual’s being? Does it ever accomplish this? I’m not sure. I worry though, that it may.

Now, there are many moments when Frank emerges as his normal, lucid self. But given what I know about how the disease ravages the brain, is Frank physiologically the same Frank I grew to love? Can he ever be the same as he was ten years ago? I don’t think so. Moreover, at what point can we say Frank is no more. If the brain ceases to function the way it had, at what point of compromised impairment can we say it voids the personality, or the person, in whole?

I’m unclear as to the answers to these questions but I do know that I no longer live with the ease I once did. Being on alert status is a natural way to cope today. In many ways it’s like living with a stranger. I’m never quite sure where his mind is headed so hypervigilance is always in order.

I’m prepared at all times to time shift, place shift and people shift in order to meet Frank where he is and whatever delusion is steering his rationale.

Living in this state of vigilance comes with risks. While I practice deep breathing and walk frequently to soothe myself, I cannot imagine living in this state of constant awareness doesn’t take its toll on the sympathetic nervous system. Which in turn affects so many other systems – cardiovascular, digestive, etc. This worries me. Will caregiving be my demise? How do I find a balance?

Emotionally, I feel grounded, not nervous when home and can genuinely relax. There are moments though where I feel the tension settle in the center of my lower gut. I feel it climb like a crazed monkey up my spine until it settles in the lower back part of my neck. Acting like a vise, squeezing my neck vertebrae until the nerves are so compressed I feel a shooting pain down my arm. That can’t be good for me. But somehow, I manage to decompress after a good night’s sleep and I’m ready to go the next morning.

Despite the cognitive chaos, there are moments when he’s still with me. Music is the conduit to his true self and I take full advantage of it – every time. Watching him conduct music or play an imaginary drum set, he comes back to me. The man that had power and control has returned – looking at me the way he once did with that sheepish little grin. With a wink of his eye, I’m 21 again and lost in him.

As for me, there is much talk about the progression of Alzheimer’s. There’s not much talk however about the person that stands in its presence, not afflicted by Alzheimer’s but by its residual effects. My power lies in my ability to pivot mid-sentence, reshape reality on command, swallow the corrections, and soften the truth. I don’t think I realized how much I’ve changed until I caught myself instinctively bracing—not for an argument, but for confusion. It’s a strange kind of power — one that steadies me and drains me in the same breath.

In the end I continue asking the question of what defines a person when memory starts to fade. I still don’t have an answer. Maybe I’m not supposed to. Perhaps loving someone with this disease means learning to live inside the question, not trying to remedy it.

For now, I sit and hold his hand while he listens to the music that brings his soul and mind back to me. And, for today…that’s enough.

For months, Frank would absent-mindedly forget to take his pills. He needs consistency with his medications and I was not much better at reminding him. After the last time he forgot to take his meds, I went on the hunt for a pill dispensing method that would prevent missed doses. Eureka! I found an alarm-based pill dispenser that blares an alarm and dispenses his next dose of pills. It’s exactly what we needed.

Now, I refill the 28 small pill boxes once every two weeks and we have 14 days of AM and PM meds. The alarm is set to go off at 7:00 AM for his morning pills and at 6:00 PM to take his evening pills. Insulin is dispensed throughout the day using a pen injector and a syringe I prefill a week in advance every Sunday. Life with medicines is now a realistic and precise practice, leaving very little room for error.

About three months ago, something compelling happened at his neurologist’s appointment. Something that made me question my own sanity. For this appointment, his daughter, Cesca, was present and son, James, was listening in by phone.

Frank had had a significant mental decline in the two months leading to this appointment and the doctor recommended the drug Risperidone which carries a “black box warning.” This means that the drug carries a risk of increased mortality in elderly patients with dementia-related psychosis – not a comforting risk to assume. We all had very mixed feelings. While the medication was effective for aggressive and hard to control behaviors, the question came down to whether or not it was worth the risk. The risk, while small (1% risk of death; 2% risk of stroke), was still a significant possibility.

After discussing the pros and cons, I heard myself say, as if elevated to the ceiling of the room looking down,

“I don’t want him taking any medication that can harm him to make my life easier.”

I’m not sure where that came from and I hadn’t intended on making this declaration but in the presence of the doctor and his children, I just blurted it out. No one said a word. No one even acknowledged what I said. It was just hanging there and I didn’t know how to move past it.

God forbid I should try to make my life easier, I mused in my thoughts. Why didn’t I embrace a little ease for me? But, in truth, I didn’t want Frank to take this type of risk at this stage of the disease. From what I had read, Risperidone was highly effective but it seemed to be introduced in the later stages of the disease when quality of life issues become more prevalent.

In all honesty, I felt I could handle Frank. Yes, his delusions were getting more regular but I was navigating my way through them. Waiting until quality of life issues become paramount made sense to me and all the other players involved.

Frank didn’t speak; he never did. I hated that. He never advocated for himself in his doctor appointments. I assume he trusted me, or us and stayed silent. More pressure was felt by the others on his behalf but we didn’t mind.

In the end, the neurologist decided on an alternate medication that is almost always used in conjunction with another he was already taking. That made us all breathe a sigh of much needed relief. At least, for now, his current dose seems to be making a positive difference in his life.

What more could we ask for? A bit of ease for me? It would be nice. But not at his expense.

As an example, the other evening we both retreated to our respective sleeping quarters. Frank was particularly restless that evening and a bit disagreeable. I was longing for sleep to overtake him. Eventually, he settled down for the night and I didn’t see nor hear from him for an hour or two.

At around 9:30 – it’s always around 9:30 – I received a phone call from Frank. He made this call easy by announcing where he was up front.

“Hi baby, I’m down south Jersey with mom.”

“Oh great, glad you made it there safely,” I went along with it.

“I miss hearing your voice. I miss you.”

This light chit chat continued for a few minutes then he wished me a good night and hung up.

This exchange happens several times per week so I’m accustomed to it. Tonight was no different. Where this episode takes a turn is what occurs next.

From a distance I could see Frank’s silhouette walking towards me. Oh no, how will he react when he sees me? Will his delusion be fractured?

He walked right into the bedroom with a huge smile on his face and said,

“I have to give Mom a kiss good night.”

Sure, that made sense. In order to maintain the delusion he needed to make me fit into his world. I became mom who lived in south Jersey. What happened next though devastated me.

As he was leaving the room, he turned, looked me right in the eyes and said,

“Cindy says hello.”

What in the actual fuck was that? Not only am I his mother but he also needs to relay a message to me from me?

What does it mean to occupy two identities at once — the woman he loves and the mother he misses — inside the same air, the same breath, the same moment? This phenomenon takes its toll. Feeling this splintered makes for a very tense and precarious life – one I’m not sure I can handle.

On the other hand, I was particularly intrigued that Frank introduced me to his mother in that way. He’s never mentioned me to his mother in his delusions. I’m always a “friend.” I wondered why that night, especially since I never asked him to say hello to his mom in the first place. Perhaps he was finally becoming more comfortable with making me a visible part of his life. I hope so but I don’t know.

What I do know is that I will continue to play the role that Frank needs me to play. But this will all come at a cost to me physically and emotionally. There are two of me now, but only one of us is breaking. I know that – but, I don’t see any way around it.

Wham! That landed like a gut punch.

Absolutely nothing we were doing or discussing led to this statement. He just blurted it out. Alzheimer’s works that way. One minute you’re fine, watching tv, talking – the next minute the mind wanders elsewhere and you have to pick up where it is.

I wasn’t quite sure what to say, so I said, “Oh, really?” Swallowing hard hoping he wouldn’t expand.

Thankfully, he responded with a simple, “Yes.”

We then resumed whatever it was that we were doing.

When this happens, it leaves me in a very unsettled state – my stomach knots, a buzzing sensation begins under my skin and I sometimes get heart palpitations, depending upon how disturbing the statement or action is.

This one disturbed me in its finality. He said it so matter of factly and seemed willing to accept my death and absence from his life. Of course, that leaves me thinking, “Who am I to him now?”

Should I have corrected him? No. In the end, as a caregiver of someone with dementia, your survival depends on choosing which realities need to exist at any given moment.

Moreover, there was absolutely no awareness of anything off in what he said. He continued as if he had just observed the mild weather outside. He showed no emotional reaction other than resignation. No grief. No sadness. Just unfeeling submission.

Shortly after this episode, the pill dispenser sounded its irritating alarm. Time for PM meds. I get up, stop the alarm and get the juice. Bring him the pills and juice, watch him swallow the pills then return the empty glass to the sink. We then begin the “going to sleep routine.”

“Where do I sleep?”

“In the recliner, in the sunroom.”

“Okay.”

We both go to our respective bathrooms and prepare for bed. After which we hug, kiss and say our I love yous then retire to our sleeping quarters.

As I prepare for bed, I set the alarm on the exterior doors in the house. Make sure all the lights are on outside. Prepare coffee for the morning, then finally go to bed.

I’m alive everywhere in this house, caring for him, ensuring his well being yet I no longer exist in his cognitive narrative. He sees me and loves me but knows that Cindy Roman is dead.

What’s of particular interest is whenever he’s under stress, unsure of himself, or agitated, the only thing that reassures and soothes him is calling Cindy Roman. Yet, in his reorganized reality she is dead while I still sustain his life.

He believes Cindy Roman is gone.

I turn off the lights and go to sleep.

I prefer not to speak directly about Frank’s issues while he’s present in the examination room because he has no memory of his delusions, hallucinations and misidentifications and I don’t want to upset him. Additionally, he showtimes quite well. He’s pleasant, tells jokes and all around seems quite amiable.

I realize that the cognitive tests administered by the neurologist provide a good understanding of his cognitive decline. But it does not speak to the behavioral changes he’s undergoing. That is our life at home. I bear the brunt of Frank’s behaviors and I feel it necessary to share them with the doctor as there are appropriate medications for these specific behaviors.

While his children and I have been reluctant to move into the classification of drugs that carry a “black box warning,” the time may have come where there is no choice. It’s a matter of the benefits outweighing the risks. I needed her to be aware of all that was going on.

So, I sat with a rigid body posture, mouthing “I need to speak with you,” several times. Still no acknowledgement. When he said something that was not true I shifted in my seat, sometimes slapping my thigh in disagreement and carry on with whatever gestures I hope will tell her this is not the truth. Still nothing.

I don’t interrupt or correct directly. It’s more what I do with my face and head. My face is quite expressive and I have big eyes. At times, I felt my eyes would bulge out of my head from some of the outlandish things he said or outright lies he told, not intentionally but once again, I was ignored.

Therefore, I sat in silence and rattled off the message I opened with. I was livid. I received verbal and written confirmation that I would have the opportunity to speak with the doctor and again, was denied. Inside, my intestines were twisting and my heart was pounding. A heart that just experienced a major trauma.

Finally, at the end of the incomplete picture, the appointment was over. This time, I didn’t care. After Frank started down the hallway I chased after the doctor. I asked why I wasn’t allowed to speak with her as promised. Her response was, “I’m very busy today.” I responded with, “I don’t care, this is vital information that you need.”

She finally stopped and listened, saying,”Yes I noticed from your body language that you had more to offer.” Really? I thought. You noticed my body language but still didn’t stop and ask to speak to me outside? You chose to ignore my concerns? I was befuddled. I like this doctor a lot – she took her time, was thoughtful and handled Frank beautifully – but I felt invisible in the process of expressing an accurate picture of what was going on.

Because I was so upset, I left out many things I wanted to tell her. Expecting to talk to her beforehand as I had the notes on my phone to share, I completely forgot about them as she was clearly rushing. There was so much more to tell but I gave her the rushed version of something that needed space. It just was not enough.

In the end, I recognized that the truth of this disease does not live in appointments. It lives in short rushed moments and half truths. And, even sadder, the person who sees the most often speaks the least. It’s like we don’t exist except as the people who drive, manage medications and deliver the patient to an appointment that doesn’t permit a full picture. Doctors: please listen to the primary caregiver. They have so much to offer.

Immigration and Customs Enforcement

Department of Government Efficiency.

Every time I repeat these answers my body responds the same way – tension sets in, muscles tighten, back starts to arch, butt cheeks tighten, toes curl and my stomach remembers the ulcers.

I try not to raise my tone the seventh time I define ICE every 15 minutes or when I repeat what day it is for what feels like the hundredth time. I know he can’t help it. He genuinely cannot retain memories any more. How I negotiate what he’s capable of and what I can realistically tolerate challenges me. I do my best. Sometimes it’s enough, sometimes not.

What has helped over time is how I’m able to anticipate the exact questions that will come my way. At times, I feel like a well-rehearsed actor, waiting for my cues so I can recite my lines. It’s like a performance and I feel prepared.

What I don’t let the audience, Frank, see is my fear, fatigue, resentment or grief. I’ve learned to edit in real time. Most of the time I catch myself. Others I slip but recover as best as I can. So many times, I want to break down and cry from the sadness and frustration I feel but I stop myself. He wouldn’t understand it and it might frighten him, so I eat it. I swallow my grief and anger for his sake. I do my best to only allow the version of myself that keeps the environment safe and calm.

This requires much self-monitoring and discipline. This is the part no one sees but our survival in our home depends on it. I sometimes share with my friends the antics that go on that are genuinely humorous. The doctors hear all of his symptoms. His children hear his decline. But, no one sees the work involved in managing a day. The tone management, the swallowed emotions, the non-ending patience and decisions to let something go are all tools that I must turn to regularly to maintain homeostasis in our lives. It’s a delicate dance that I’ve managed to choreograph relatively well.

But, all of this hidden work takes its toll. There’s a price that I pay physically, psychologically and emotionally for it. Where does all of the unspoken emotion go? It lives in me – in my body, in my thoughts and sometimes, in my actions. I’m ashamed to admit that the quiet resentment surprises me as it rears its ugly head. I never expect it, yet it’s there.

The performance continues.

Department of Government Efficiency.

It’s Tuesday.

We were home watching television, something we do often, when a commercial for The Magic Flute came on. It was visually exciting, and I looked it up. I remembered performing in it years ago, though I couldn’t remember which part. It was considered a light opera and was being performed on a Saturday at noon — a safe time for Frank. After reassuring him we’d take an Uber door to door, he agreed.

Something nagged at me. I couldn’t say exactly what. Maybe memories of other performances that hadn’t gone well. Maybe the thought of Manhattan. But deep down, I knew this was a mistake.

I started reminding him the day before.

“What show?” he asked.

The Magic Flute.

“Where?”

The Met.

“In the city?” he said, startled.

“Yes. Uber door to door,” I reassured him.

Getting there was easy. It always is when they pick you up at your door. It’s finding your way home from Manhattan that’s unpredictable. Still, I moved forward, determined to make it work.

The ride in was smooth. We were dropped off at a side entrance of Lincoln Center and walked the short distance to the theater. I silently hoped the Uber taking us home would return to the same spot.

Frank has extraordinarily fine-tuned ears when it comes to music. As the overture began, he leaned toward me and said, loud enough for others to hear, “What is this? A high school band?”

Music that isn’t precise physically pains him. I’ve watched it happen.

The opera itself was underwhelming. The sound wasn’t what I expected — thin, uneven. I struggled to hear the women over the men. I had expected to feel enveloped by the music, but I didn’t. Frank grew restless. Children whispered nearby. I sat rigid, a knot forming in my stomach, waiting for something to happen.

After twenty minutes, I began praying for intermission so I could take him home.

It never came.

This was an abridged version intended for younger audiences. There was no intermission. We were required to sit and wait for it to end.

When the curtain call finally came, I don’t think I’ve ever left a theater so quickly. I took Frank’s hand when I noticed him falling behind and guided him through the crowd. We made it back to the spot where we’d been dropped off, and I ordered an Uber.

That’s when things unraveled.

The Uber arrived at a different entrance. Frank refused to wear his coat and was freezing in his warm-up suit. The driver didn’t speak English and couldn’t tell us where he was. All I could make out was that he was somewhere at Lincoln Center.

“Go around the corner,” I shouted into the phone, again and again.

Frank paced the block, swearing at the cold, stopping every white car in hopes it was ours, vowing he’d never come back to Manhattan again.

Eventually, after I told the driver we’d take a cab, he appeared.

The ride home took over an hour and a half — thirty minutes longer than it should have. We didn’t talk about the opera. I promised Frank we’d never go into the city for a show again. That pleased him.

I also knew this would be a distant memory within hours.

That pleased me. Sort of.

By that evening, I had already started undoing what came next.

The next day, the emails arrived.

Your ticket listing just sold.
Jerry Seinfeld.

Your ticket listing just sold.
Yo-Yo Ma.

Your ticket listing just sold.
Frankie Valli & The Four Seasons.

There was nothing left to decide.

That part of my life is over for now, not because I wanted it to be — but because I finally understood it had to be.

We were home watching television, something we do often, when a commercial for The Magic Flute came on. It was visually exciting, and I looked it up. I remembered performing in it years ago, though I couldn’t remember which part. It was considered a light opera and was being performed on a Saturday at noon — a safe time for Frank. After reassuring him we’d take an Uber door to door, he agreed.

Something nagged at me. I couldn’t say exactly what. Maybe memories of other performances that hadn’t gone well. Maybe the thought of Manhattan. But deep down, I knew this was a mistake.

I started reminding him the day before.

“What show?” he asked.

The Magic Flute.

“Where?”

The Met.

“In the city?” he said, startled.

“Yes. Uber door to door,” I reassured him.

Getting there was easy. It always is when they pick you up at your door. It’s finding your way home from Manhattan that’s unpredictable. Still, I moved forward, determined to make it work.

The ride in was smooth. We were dropped off at a side entrance of Lincoln Center and walked the short distance to the theater. I silently hoped the Uber taking us home would return to the same spot.

Frank has extraordinarily fine-tuned ears when it comes to music. As the overture began, he leaned toward me and said, loud enough for others to hear, “What is this? A high school band?”

Music that isn’t precise physically pains him. I’ve watched it happen.

The opera itself was underwhelming. The sound wasn’t what I expected — thin, uneven. I struggled to hear the women over the men. I had expected to feel enveloped by the music, but I didn’t. Frank grew restless. Children whispered nearby. I sat rigid, a knot forming in my stomach, waiting for something to happen.

After twenty minutes, I began praying for intermission so I could take him home.

It never came.

This was an abridged version intended for younger audiences. There was no intermission. We were required to sit and wait for it to end.

When the curtain call finally came, I don’t think I’ve ever left a theater so quickly. I took Frank’s hand when I noticed him falling behind and guided him through the crowd. We made it back to the spot where we’d been dropped off, and I ordered an Uber.

That’s when things unraveled.

The Uber arrived at a different entrance. Frank refused to wear his coat and was freezing in his warm-up suit. The driver didn’t speak English and couldn’t tell us where he was. All I could make out was that he was somewhere at Lincoln Center.

“Go around the corner,” I shouted into the phone, again and again.

Frank paced the block, swearing at the cold, stopping every white car in hopes it was ours, vowing he’d never come back to Manhattan again.

Eventually, after I told the driver we’d take a cab, he appeared.

The ride home took over an hour and a half — thirty minutes longer than it should have. We didn’t talk about the opera. I promised Frank we’d never go into the city for a show again. That pleased him.

I also knew this would be a distant memory within hours.

That pleased me. Sort of.

By that evening, I had already started undoing what came next.

The next day, the emails arrived.

Your ticket listing just sold.
Jerry Seinfeld.

Your ticket listing just sold.
Yo-Yo Ma.

Your ticket listing just sold.
Frankie Valli & The Four Seasons.

There was nothing left to decide.

That part of my life is over for now, not because I wanted it to be — but because I finally understood it had to be.

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What was that? Where on earth did that come from? A dead body? Seriously? My body couldn’t move. But my mind answered it automatically. No questions, no explanations – just a simple response.

This is not an unusual moment; however, it was the most bizarre thing he’s ever asked me. My instinct was to go along with it as if he’d asked about the weather. I took it in and registered it in the “most absurd things that have happened” category. Still, it left me with a flicker of: What is he seeing? What am I missing?

This, unfortunately, is part of a larger unraveling. Nightly, he questions when the “other” Cindy is coming home, when the guests are leaving, where the guests went, how he got here. They don’t stop. I live in a constant state of feeling like there’s something I don’t know about my own life. On a regular basis, he’s showing signs that he may need a higher level of care.

I can answer the questions, but I can’t answer where they come from. That’s the true horror of where we’re heading—not the question itself, but the world he’s living in that produced it.

My role has shifted from friend, lover, and partner to caregiver—the one who confirms his reality, even when the questions are impossible and the answers feel unreal coming out of my own mouth. I answer nonchalantly, as if they are natural, daily questions. It’s easier to meet him where he is, to distract him, to try to end the loop.

I often ask myself how I’m able to live in a house where his questions make sense to one of us. On one hand, I feel fortunate that I’ve found a way to normalize this. On the other, it strains me and leaves me wondering what’s coming next. Every statement, every text frightens me in a quiet way.

After the “dead body” question, he moved on as if nothing happened.

The problem is that I’m not moving on.

The long-term state of exhaustion and suspension many caregivers experience, where their own lives and needs fade behind constant responsibility. It’s marked by worry, guilt, isolation, and the emotional strain of role reversal. Over time, it can lead to anxiety and trauma-like responses—not as failure, but as the result of carrying something heavy for too long. Coping isn’t about perfection; it’s about finding small moments of relief, accepting help, and releasing guilt. Even after caregiving ends, healing and rediscovering oneself take time.

I don’t recall when or where I first heard this term, but as soon as I looked into it, I felt there was finally a phrase that captured exactly how I felt. Living in a state of limbo is an overwhelming way to exist. It’s not hell, not peace, not resolution, but a suspended state where one languishes under the weight of the unknown while enduring mental, emotional, and physical decline.

In caregiver purgatory, you don’t really know when it begins. I didn’t ask for or choose to be a primary caregiver; circumstances placed me into this role—one that is demanding and rarely fully understood by outsiders. There is also no end in sight. The long goodbye is part of this purgatory. Watching a loved one slowly decline, becoming less and less of who they once were, creates an overwhelming sadness and sense of hopelessness. Then there’s the never-ending repetition that comes with it.

In this state, you can’t fully grieve. You’re not able to move on because the caregiving continues and continues and continues. Given its isolation, few people volunteer to help or offer any real reprieve. The assumption is that you have everything under control. So you stay and wait for the unknown. Leaving is never an option. Despite the toll it takes, we stay—we endure, we persist, and we suffer silently.

What others don’t see is the daily toll. Their attention goes to the patient—the one being cared for.

“You’re doing such a good job.”
“He/she must appreciate all that you do.”
“Be mindful to take care of yourself.”

These are the common sentiments. What they don’t see is the invisibility of the suspended loss caregivers live with—and the exhaustion it carries.

You become changed. Your time becomes distorted. Everything revolves around timing—appointments, moments of delusion, hallucinations, and confusion. This changes not only the patient, but the caregiver. We live in a constant state of adjustment, reshaping each day based on what version of reality we’re given. Will today be manageable, or will it spiral?

We don’t ask for much. We don’t expect recovery or miracles. We pray for days that are simply manageable. Those are the days lived in constant alertness. The patient, for their own protection, may live in a kind of unknowing. To them, it’s just another day. To the caregiver, it is unrelenting.

While I take some comfort in knowing the term caregiver purgatory—it makes this existence slightly less lonely—it doesn’t fix what’s broken about living in this “pre-hellish” state. But it does make it real. Just as I learned the phrase “living in hypervigilance,” naming it matters.

In the end, the truth I live with is this: I did not choose this place. My actions come from love, from caring, from my humanity. I doubt I’ll ever leave. My love runs too deep.

But will I lose myself in the process?

That is a possibility.

For now, I’m still here—and I’m not going anywhere.

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