Perhaps I am experiencing something that not many have. I only want to hear from the long haulers. Advice?

If the medications do not help.
If she has been to doctors and nothing has lessened the agitation, anxiety there are 2 options.
1. You deal with it and live with it. If that is not possible then...
2. You place her in Memory Care.
Usually with dementia some of the obsessive behaviors dissipate, but as one leaves another "problem" often surfaces.
I had to keep a step ahead of my Husband, when he became fixated on something it was often hard to distract or redirect him. I spent 12 years keeping a step ahead!
I went through phases where I had to keep my car keys locked up so he would not take off. I had to lock a gate I had put on my porch so he would not walk away. I had to chain my furniture together so he could not take a chair and put it by the gate that I locked and use the chair to climb over the porch railing. I had to wear my keys around my neck for years so that I could easily open the doors that I kept locked so that he could not get out...and on and on...
You are right it is tough. It is exhausting.
Sometimes for the safety of all involved placing a loved one in a Memory Care facility is the best, safest course of action. Doing so is not a "failure" it is accepting that it is a safer option. (By safe I mean not just physical safety but mental and emotional safety.)

Is it correct to assume that you are your mother's only caregiver?
If such is the case then you need to bring in outside help because you're not coping anymore. This is no reflection on you personally, or how much you love your mom, or how good you are as a caregiver.
At some point everyone who is in the situation where they are the only caregiver to an elderly person will start to burn out and lose it. When the elderly person is needy and also has dementia, one person cannot handle all the caregiving alone. A situation like yours very quickly becomes high risk for elder abuse. Please consider bringing some hired help into the home.
In the meantime, learn how to ignore with kindness. You do not have to answer every question. You do not have to respond every time she repeats the same thing over and over. Sometimes you have to ignore her. The same as with a baby. Sometimes they just have to squawk for a while. It's good for them. If mom goes running in every time the baby fusses a little what will happen is that he will never be able to be alone even to sleep. This applies to elderly people with and without dementia too. If your mom is safe and not at risk of getting hurt, then ignore her sometimes.
Find some outside help too. Monotonous and annoying can very quickly turn into resentment and abuse.

For anyone caring for a LO with dementia, it doesn't take long to become a “long hauler”. Just a few months of trying to cope with understanding the disease, maintaining your own sanity, and managing the emotions that come with the job, can cause a healthy carer to physically decline themselves. The behavior exhibited by those living with dementia can become not only, as you say, monotonous and annoying to the caregiver ( and I would almost call those emotions benign compared to what may come), but can eat you up in stress, anxiety, and worry. How do you respond to the accusations, the unending repetition, the delusions that the disease causes? How do you answer the unanswerable? Caring for a LO with dementia IS tough, it IS exhausting. This is absolutely the toughest “job” in the world. It is the worst of all diseases, not just of what it does to the LO, but also for its devastating effect on the family. I truly believe that it's harder on the caregiver than on the patient. Probably the most effective way to deal with the disease, and I'm sure you've read many of the posts on this forum, is to figure out her reality and become part of it. We use words like fiblets, and therapeutic fibbing to describe a caregivers attempt to help retain our LO's dignity or to mollify their anxiety. In his book, The Problem of Alzheimer's, Jason Karlawish uses the term “loving deception”. It's true, you can't get thru to them, you can't argue, you can't use logic, so accommodate them as best as you can.

You don't pose a specific question, but I want you to know that you are not alone. Many in this forum are experiencing what you are experiencing, and many have completed that caregiver journey and can certainly relate.

I wish you peace.

I am technically a long hauler. It started with my dad w/ Alzheimer's in 2014. He passed away in 2018 but my mother had become ill in 2017 so the last year was caring for both. My mom is only mildly cognitively impaired but frequently hospitalized. Each hospitalization makes her cognitively worse and she is also mobility impaired, has heart issues, diabetes, recent strokes, etc,etc,etc. Because she is a mule who is obstinate about following rules and medication compliance, she needs to have an adult with her 24/7. She regularly falls, faints and has bladder or stool incontinence.
It is tough and exhausting. It takes me away from everything that previously brought me joy. It has stolen years from my youngest daughters childhood. It has stolen my career and ruined any chance of saving money for retirement.
This is is my life too.

As a former "long hauler" I can tell you that this too shall pass. Will it be exhausting at times? YES! Will it push your patience to its limits at times? YES! Will you lose it at times and say and do things you may later regret? YES! Will it seem at times that there is no end in sight? YES!

BUT.....there is hope out there. It may look like outside help coming in to give you a break, or it may look like having to place your loved one in the appropriate facility, where trained professionals now have the responsibility of her 24/7care.
That's a choice only you can make. You have to do what's not only best for your loved one, but for you as well.

It's hard, no ifs ands or buts, but I will tell you from personal experience, that once your loved one is gone, you will wish for just one more day with them, regardless of what you've been through with them. It's funny how that works, but it's true, so be kind to yourself and your loved one, as we never know what tomorrow will bring. God bless you and keep you.

Ari, the only time I have heard the term longhauler is associated with covid.

The term when related to carrying can be ANY length of time. Some people can be caregivers and some cannot and that is ok. Some cannot manage a minute, few can manage many years. I did four years for mom with Alzheimer's and her husband with age related decline. It wasn't easy.

We all need to develop boundaries and determine when it is too detrimental to ourselves to continue. It is different for everyone. Only you can determine how much more you can take. Then make the appropriate arrangements.

It is tough, it is exhausting and seemingly unending. The repetition can be hard.
The same lines and stories again and again. Straining those stories for wild flights of fancy that might mean a UTI or are nothing more than a new twist on the same story. Gating off the staircase for safety after finding her crawling up the stairs like some outsized spider and having to bring her back down, hitting and clawing and screaming. Keeping regular toileting trips to keep her safer from skin breakdown and infections. Gating off the kitchen area for safety after finding her rummaging through the kitchen waste can looking for God knows what, plus her walking over to me at the stove while cooking and attempting to put her hand on a hot burner just as something to lean on. Closing off the sun porch for safety to keep her from getting her hands caught in the old windows that she repeatedly opened up and slammed down, plus it stopped her from escaping through the outside door while I’m in the bathroom. Changing wet bedding and wet nightclothes every single day and the mounds of laundry. Scrubbing the floors daily with disinfectant cleaner as she took off her clothes and disposable underwear and walked through to the living room this way. Daily sponge baths and repeated redressing. Keeping her from eating items that weren’t food and making food that she found appetizing as her taste changed. She loved sweet tasting things, so I sprinkled sweetener sparingly on all foods to tempt her to eat. Taking her for walks in the yard until she couldn’t anymore. Then walking ‘round the house until she couldn’t anymore. Then helping her from bed to sofa until she couldn’t anymore. Then a hospice hospital bed in the living room, (with all of duties of bedridden care), so she could see the sunrises until she couldn’t anymore.

Long hauler here. I suggest trying for a shift of perspective. When I left my mom’s Memory Care yesterday (after not seeing her during pandemic,) I thought how I longed for the way things were before. It hit me that this is not the first time I have thought this. I hate saying this, but things aren’t going to improve. Things will shift. Someday, probably sooner than you wish, you will long for the days when your loved one bugged you constantly and displayed the behaviors that are currently irritating. No judgement here. I have absolutely felt like you are feeling now. Some days you will handle it better than other days.

I’m so sorry you are going through this. I’m caring for my MIL w/dementia living in my home for over 3 years. What I’ve learned is I can’t change her, I can only change my inner thoughts and attitudes. Bring some help into the home to give you a break. Develop a list of stock responses. Take many breaks. If you aren’t able to find your inner peace within, you may want to consider another living arrangement. Caring for this type of patient is completely and willingly giving of yourself. Please do not feel guilt/shame if it’s not your calling.

My cousin told me " it takes a very strong person to get old". The older I get the more it is true.hang in there you will get your reward in heaven, no more pain, no more aging, a newbody . Yes it is hard,Be strong.